Public Comments Received

December 30, 2019
Samuel Wagman
SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, Maryland 20857
Submitted by e-mail – [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Mr. Wagman:
Thank you for the opportunity to comment on this proposed collection of
information regarding the Protection and Advocacy for Individuals with Mental
Illness (PAIMI) program. The Arizona Center for Disability Law (ACDL) believes
that this iteration of the PAIMI Program Performance Report (PPR) is an
excellent opportunity to further the work in standardizing the PPRs that we do for
all the programs as well as ensure that the data collected is as clear and useful
as possible.
Annually, ACDL is required to produce a Program Performance Report (PPR) for
the PAIMI program as well as seven other programs. These PPRs contain a
wealth of information, including an evaluation of whether the program has met
the goals and priorities developed for the year with input from the community and
the individuals that we serve. However, the data requested in each report is not
standardized, which requires us to spend a large amount of time drafting and
creating the PPRs. Given the limited staff resources that we have, it would
directly benefit people with disabilities if the reports could be standardized so that
these resources could instead be used to provide direct services to people with
disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling your
updates to the PPR on recommendations from the P&A network. Our national
association, the National Disability Rights Network (NDRN) and the P&As have
worked over the last couple of years with the Administration on Disability (AOD)
to streamline the Protection and Advocacy for Individuals with Developmental
Disabilities (PADD), Protection and Advocacy for Voter Access (PAVA),
5025 E. Washington Street, Suite 202
Phoenix, Arizona 85034
(602) 274-6287 (Voice/TTY)
(602) 274-6779 (Fax)
www.azdisabilitylaw.org

177 N. Church Avenue, Suite 800
Tucson, Arizona 85701
(520) 327-9547 (Voice/TTY)
(520) 884-0992 (Fax)

Protection and Advocacy for Individuals with Traumatic Brain Injury (PATBI), and
Protection and Advocacy for Assistive Technology (PAAT) PPR reporting
processes. The ultimate goal was to produce one PPR that effectively and
efficiently documents the work of a particular P&A agency while providing AOD
and Congress the information they need to properly evaluate these four P&A
programs. This work led to the creation of the One PPR that demonstrates the
outcomes of the P&A agencies and gives AOD and Congress the information
they need to properly evaluate each individual program. The One PPR itself was
designed with the idea that all P&A programs, including the PAIMI program, can
use this concept to ultimately streamline the existing reports.
We applaud SAMHSA for working with a number of P&As (including ACDL) and
NDRN over the last couple of years to incorporate much of the One PPR
framework into this new version of the yearly PAIMI PPR. We specifically
support the inclusion of a number of important data points that were taken out of
the last version of the PAIMI PPR, as well adopting the outcomes from the One
PPR to standardize data collection and outcomes across the P&A programs.
While we overall support this new version of the PAIMI PPR there are a couple of
suggestions that we would propose SAMSHA consider before finalizing the new
PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing
Board, Advisory Council, and Program Staff
We believe the choices for the sex demographic question, nor the two answers,
appropriately reflect the time in which we live. It is not uncommon for our board
or advisory council members, or staff, to feel constrained by the traditional
definitions of female and male. Additionally, the use of the term “sex” connotes a
biological definition, while to truly grasp the overall experience of a person, the
individual‘s true identity requires a different term like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than “Sex”.
Second we believe the choices should be the following four: Male, Female, Not
Listed, and Chose Not to Answer.
Page 3, Section A, #12 – List of Mental Health Professionals on the
Advisory Council
Only including mental health professionals as choices for individuals that serve
on the advisory council ignores the other potential categories of individuals that
are allowed to serve on the council that are contained in the PAIMI statute.
Section 10805(a) (6) (B) includes other categories like attorneys, providers,
individuals receiving or have received mental health services, etc. that are not
reflected in this list on Page 3 and should be captured in the PPR somehow.

Should you want to specifically break out the different types of mental health
professionals, as referenced in the statute, we are concerned that the list of
mental health professionals listed as answers for this question is too narrow for
the scope of individuals that may serve on the PAIMI Advisory Council. As
SAMHSA’s own website shows (https://www.samhsa.gov/workforce) the list of
mental health professionals is much broader than the limited list on Page 3. At a
minimum an Other” category needs to be added as an appropriate answer for
other types of mental health professionals that may serve on the advisory
council. We strongly suggest that Peer Support Specialists should be added as
a specifically enumerated choice as this important change in service delivery
should be recognized.
Page 4, Section A, #15 – Governing Board Composition
As ACDL’s impact on people with disabilities encompasses more than individuals
with psychiatric disabilities, the governing board is not constricted to individuals
or family members of individuals that have received mental health services. We
agree that it is important to capture the number of individuals or family members
of individuals with disabilities on the governing board, but to properly reflect the
governing board’s composition, we believe additional answers should be added
to this question to reflect other individuals with diverse disabilities and family
members of these individuals. For instance, the One PPR contemplates that
there is a wider scope of disabilities on a P&A board and could be used as an
example for the PAIMI PPR. We have pasted that table down below. We
understand that this is written from the perspective of the Administration on
Community Living and the One PR and would need to be adjusted to reflect that
this is the PAIMI PPR.
Board
TOTAL Numbers of Members (nonduplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary
Consumers
PAIMI or PAIR or PABSS Other Eligible
Secondary Consumers
Other Members
Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately
reflect the time in which we live nor truly grasp the overall experience of a

person. Additionally, the third answer of “unknown/would not disclose” does not
appropriately cover that set of individuals.
Like earlier, our fist suggestion for this section would be to change the title to
“Gender of PAIMI Eligible Individuals Served”. Second we also again believe the
choices should be the following four: Male, Female, Not Listed, and Chose Not to
Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI
Program Funds
Our concern in this question is in #5 where you ask for the number of individuals
with co-occurring mental illness and intellectual and developmental disabilities
(I/DD). It is extremely common in ACDL’s caseload for one individual to identify
with more than one disability. Because of this, we do not see the need or
importance for collecting this specific data point when it comes to evaluating the
program. Thus, we would first suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not
adequately describe the landscape when it comes to co-occurrence. In fact, as a
term of art, co-occurrence typically refers to substance use and mental illness
(which is not asked). Additionally, mental illness can, and often does, co-occur
with other disabilities such as traumatic brain injury and physical disabilities. We
do not see the benefit of restricting this to co-occurrence of mental illness and
I/DD. Thus, if you decide to keep the data point, do not just limit the co-occurring
disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial
information, it feels misplaced in the eligibility section. This question would be
more useful in describing the demographics of a program, as co-existence of any
other disability is not reflective of the eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible
Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to
consider the outcomes of the One PPR when constructing the outcomes of the
new PAIMI PPR so that they more accurately reflect P&A individual and group
advocacy. That said, the instructions for this section (abuse section instructions
are on page 3) do not reflect these updated outcomes. In particular, both for
internal consistency and to provide consistent outcome information, the
outcomes of individual advocacy in Section C of Areas 1 - 5 should match the
End Outcomes of group advocacy in Section 12. The outcomes in Section 12
were specifically developed to provide information for SAMHSA to use in its
reporting to Congress.

Page 10, Section C, #5 – Areas of Alleged Rights Violation
ACDL agrees with the additions made to the tracking of alleged rights violations.
Specifically, the additions of employment discrimination, housing discrimination,
and failure to provide educational services in the least restricted environment.
The ability to capture this work in our reporting will give SAMHSA and the public
a better understanding of the nature, scope, and importance of our work.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize
the intervention strategies between the One PPR and the PAIMI PPR to more
accurately reflect P&A advocacy, but that did not occur in the way this section is
currently written. We noticed that the PAIMI PPR continues to have the
“Technical Assistance” option. We believe that this could be confusing to staff to
have different intervention strategies across programs. This is magnified when
you consider that the One PPR defines Technical Assistance as a non-client
directed activity. Cases that would be PAIMI Technical Assistance could easily
fall under limited Advocacy and eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for
our staff. They are tasked to solve issues at the lowest level, and often this
includes negotiating to obtain good outcomes for their clients. Limited Advocacy
could describe this strategy, but it seems richer to add the additional category, as
it is such a common way that our staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is
critically important that the definitions of these strategies be the same between
the two PPRs. Because if they are not, then the increase in efficiency through
harmonized PPRs will be lost. Thus, we have included below the definitions from
the One PPR to be used in the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to
as Short Term Assistance, is a level of intervention that can include advice and
counseling, brief research, or letter writing to the client to summarize assistance
given. Advice and counseling assistance includes informing a client of their
rights; coaching the client in self-advocacy; reviewing information; counseling a
client on actions one may take; or assisting the client in preparing letters or
documents and/or the dissemination of information and materials related to the
disability rights issue raised by the client. It includes providing information sheets
and other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes
the provision of a discrete task to a client or a discrete contact on behalf of a
client with a third party. Such activities upon completion require no further or
ongoing actions, either formal or informal. Limited Advocacy can include

communications by letter, telephone or other means to a third party; preparation
of a simple legal document; or assisting a client in the preparation of documents
that are submitted by the client pro se to a third party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial
complaint resolution process provided by government agencies, boards,
commissions, or other designated adjudicators, exercising decision making
authority delegated by statute. Administrative Remedy processes are generally
simpler, less formal, and less technical than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more
people voluntarily discuss their differences and attempt to reach a joint decision
on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative
dispute resolution process using the services of an independent third party to
help settle differences or disputes between two or more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a
legal question or matter. Litigation involves many complex legal issues which
require not only a knowledge of the law that governs the dispute, but also, the
laws governing the procedures to be followed in order to properly litigate a claim.
There are rules governing who may file a claim, where it must be filed, when it
must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMIeligible individuals
ACDL suggests that the definitions for group advocacy interventions be
consistent with those in the One-PPR which again more accurately reflect the
work of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of
groups of people with disabilities pursued through the interventions of systemic
litigation, legislative and regulatory advocacy and systemic advocacy (nonlitigious and non-legislative). It is concerted action to reform the policies or
mode of operations of a system of services such as the disabilities service
system or the policies and practices of private actors. Report the intervention
strategy (abuse and neglect investigation; systemic litigation; educating
policymakers; and other systemic advocacy) used in each case/project. You
may select more than one per project.

Abuse and Neglect Investigation - An investigation is a systematic and
thorough examination of information, records, evidence and circumstances
surrounding an allegation of abuse and neglect. Investigations are distinct from
advocacy and require a significant allocation of time and resources including such
activities as interviewing witnesses, gathering evidence and generating a written
report, which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the
policies or mode of operations of a system of services. It attempts to address a
systemic issue raised by many individuals, through class action litigation, multiplaintiff litigation, or in some cases individual litigation when the relief sought has
the potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change.
Policy-makers may include individuals in both the executive and legislative
branches of government who make or interpret policies (legislation, regulations,
rules or practices) that impact the lives of people with disabilities. Our advocacy
efforts might be directed at the local, state, or federal level. Educating these
individual makes them aware of how their actions may impact people with
disabilities. Information reported should only include work done in accordance
with the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action
by the P&A agency to promote and effectuate changes in the policies, rules, and
laws that impact groups of people with disabilities, and to remove the barriers
that prevent or impede them from leading full, productive lives in the
community that does fit elsewhere in the form Systems advocacy typically
addresses the establishment, support, improvement, or expansion of (1)
programs that provide services or benefits to persons with disabilities, and (2)
the legal rights, protections, and entitlements of persons with disabilities; and
may involve opposition to efforts to weaken, reduce or eliminate existing
services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and
quality of service by providers of services, supports and other assistance.
Monitoring may involve using the a P&A’s access authority to visit and in other
ways seek information from institutional or community settings including public
and private facilities where people with disabilities live, work and go to school by
a) conducting face-to-face interviews with individuals with disabilities in those
settings; b) conducting at least one face-to-face interview with a staff member in
those settings; 3) observing and evaluating the physical conditions of the setting;
and 4) accessing and reviewing records, when appropriate, in accordance with
applicable federal and state law.

Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a
segregated setting to a community based setting to achieve integration and
independence. However, there is plenty of ACDL PAIMI work that is done to
ensure that an individual receives community based services so that the
individual can remain living in the community (like their own home) and be
integrated and independent. Thus, we believe that “a” should specifically
reference maintaining already existing community integration. So, for example,
“a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based
services resulting in, or maintaining, community integration and independence;

Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for
ACDL’s individual PAIMI staff. While we understand that it is beneficial to
understand the higher salaries, these are all contained on our 990 filings. We
are generally hesitant to post staff salaries and have these be common
knowledge in the organization. It seems as though aggregate salary information
would accomplish the needs of SAMHSA, while also maintaining the integrity of
the lower level data. We do applaud the change to WebBGas to black out the
salary information.
Again, we appreciate the opportunity to comment on this collection of
information, and believe this new PPR is one big step to a streamlined data
collection process that will provide the necessary data to show the effectiveness
of the PAIMI program to SAMSHA and Congress. Please contact me if you have
any questions about this letter.

Sincerely,

J.J. Rico
Chief Executive Officer
Arizona Center for Disability Law
[email protected]

January 6, 2020
VIA EMAIL: [email protected]
Samuel Wagman
SAMHSA Reports Clearance Officer
5600 Fishers Lane, Room 14E57B
Rockville, MD 20857
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Mr. Wagman:
Thank you for the opportunity to comment on this proposed collection of
information regarding the Protection and Advocacy for Individuals with Mental
Illness (PAIMI) program. Disability Rights Florida (DRF) believes that this iteration
of the PAIMI Program Performance Report (PPR) is an excellent opportunity to
further the work in standardizing the PPRs that we do for all the programs as well
as ensure that the data collected is as clear and useful as possible.
DRF had an opportunity to review the comments to be provided to SAMHSA by
National Disability Rights Network (NDRN). DRF is in full support of the
recommendations proposed by NDRN. In addition to NDRN’s comments, DRF would
appreciate SAMHSA’s consideration related to the following areas.
Timing of proposed changes to PAIMI PPR reporting
Like most other P&A systems, DRF utilizes electronic data entry systems to track
virtually all elements of a case file, from opening through development and case
closure. Because we use automated systems for reporting purposes, the timing
and execution of the proposed PAIMI PPR changes is critical. DRF requests that all
final changes be announced well in advance of the fiscal year for which the changes
will be implemented. This will provide P&As with ample time to apply the necessary
changes to case management databases and thereby capture all pertinent
information for the entire affected fiscal year. SAMHSA’s proposed PAIMI PPR
changes affect case work on multiple levels, including dispositions, interventions,

and outcomes that are not currently available for selection under the PAIMI grant.
To implement these changes mid-fiscal year would likely require many hours of
staff time to apply retroactive revisions to case files that have previously been
completed or closed.
Page 13, Section C., #9 – Death Investigation Activities
It appears that “The State” has been removed as an option from the section with
heading, “The number of deaths reported to the P&A for investigation by the
following entities.” It is unclear whether this removal was intentional or in error.
The majority of reports of deaths come to DRF from state agencies. DRF proposes
that SAMHSA continue to include “The State” as selection “a” in this category as it
has been in prior PAIMI PPRs.
Again, we appreciate the opportunity to comment on this collection of information,
and believe this new PPR is one big step to a streamlined data collection process
that will provide the necessary data to show the effectiveness of the PAIMI program
to SAMSHA and Congress. If you have any questions about this letter, please do
not hesitate to contact me directly by phone at 850-617-9775 or via email at
[email protected].
Sincerely,

Peter P. Sleasman
Acting Executive Director

December 27, 2019
Summer King
SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, Maryland 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection; Comment
Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King:
Thank you for the opportunity to comment on this proposed collection of information
regarding the Protection and Advocacy for Individuals with Mental Illness (PAIMI)
program. Indiana Disability Rights believes that this iteration of the PAIMI Program
Performance Report (PPR) is an excellent opportunity to further the work in
standardizing the PPRs that we do for all the programs as well as ensure that the data
collected is as clear and useful as possible.
Yearly, Indiana Disability Rights is required to produce a Program Performance Report
(PPR) for the PAIMI program as well as eight other programs administered by RSA,
ACL/AIDD, and SSA. These PPRs contain a wealth of information, including an
evaluation of whether the program has met the goals and priorities developed for the
year with input from the community and the individuals that we serve. However, the
data requested in each report is not standardized, which requires us to spend a large
amount of time drafting and creating the PPRs. Given the limited resources that we
have, it would directly benefit people with disabilities if the reports could be standardized
so that these resources could instead be used to provide direct services to people with
disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling your updates to
the PPR on recommendations from the P&A network. Our national association, the
National Disability Rights Network (NDRN) and the P&As have worked over the last
couple of years with the Administration on Disability (AOD) to streamline the Protection
and Advocacy for Individuals with Developmental Disabilities (PADD), Protection and
Advocacy for Voter Access (PAVA), Protection and Advocacy for Individuals with

Traumatic Brain Injury (PATBI), and Protection and Advocacy for Assistive Technology
(PAAT) PPR reporting processes. The ultimate goal was to produce one PPR that
effectively and efficiently documents the work of a particular P&A agency while
providing AOD and Congress the information they need to properly evaluate these four
P&A programs. This work led to the creation of the One PPR that demonstrates the
outcomes of the P&A agencies and gives AOD and Congress the information they need
to properly evaluate each individual program. The One PPR itself was designed with
the idea that all P&A programs, including the PAIMI program, can use this concept to
ultimately streamline the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud SAMHSA for
working with a number of P&As and NDRN over the last couple of years to incorporate
much of the One PPR framework in to this new version of the yearly PAIMI PPR. We
specifically support the inclusion of a number of important data points that were taken
out of the last version of the PAIMI PPR, as well adopting the outcomes from the One
PPR to standardize data collection and outcomes across the P&A programs. While we
overall support this new version of the PAIMI PPR there are a couple of suggestions
that we would propose SAMSHA consider before finalizing the new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board,
Advisory Council, and Program Staff
We believe the choices for the sex demographic question, nor the two answers,
appropriately reflect the time in which we live. It is not uncommon for our board or
advisory council members, or staff, to feel constrained by the traditional definitions of
female and male. Additionally, the use of the term “sex” connotes a biological definition,
while to truly grasp the overall experience of a person, the individual‘s true identity
requires a different term like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than “Sex”. Second
we believe the choices should be the following four: Male, Female, Not Listed, and
Chose Not To Answer.
Additionally, the “Race” Category is not consistent with the Race options under A. 17
breaking down program staff demographics. We recommend adding “Native
Hawaiian/Pacific Islander” and “Unknown” to the list of Races to make it consistent with
the list of Races in A. 17.
Ethnicity should also consistently have an “Unknown” option as well.

Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory
Council
Only including mental health professionals as choices for individuals that serve on the
advisory council ignores the other potential categories of individuals that are allowed to
serve on the council that are contained in the PAIMI statute. Section 10805(a) (6) (B)
includes other categories like attorneys, providers, individuals receiving or have
received mental health services, etc. that are not reflected in this list on Page 3 and
should be captured in the PPR somehow.
Should you want to specifically break out the different types of mental health
professionals, as referenced in the statute, we are concerned that the list of mental
health professionals listed as answers for this question is too narrow for the scope of
individuals that may serve on the PAIMI Advisory Council. As SAMHSA’s own website
shows (https://www.samhsa.gov/workforce) the list of mental health professionals is
much broader than the limited list on Page 3. At a minimum an Other” category needs
to be added as an appropriate answer for other types of mental health professionals
that may serve on the advisory council. We strongly suggest that Peer Support
Specialists should be added as a specifically enumerated choice as this important
change in service delivery should be recognized.
Page 4, Section A, #15 – Governing Board Composition
As Indiana Disability Right’s impact on people with disabilities encompasses more than
individuals with psychiatric disabilities, the governing board of IDR is not constricted to
individuals or family members of individuals that have received mental health services.
We agree that it is important to capture the number of individuals or family members of
individuals with disabilities on the governing board, but to properly reflect the governing
board’s composition, we believe additional answers should be added to this question to
reflect other individuals with diverse disabilities and family members of these
individuals. For instance, the One PPR contemplates that there is a wider scope of
disabilities on a P&A board and could be used as an example for the PAIMI PPR. We
have pasted that table down below. We understand that this is written from the
perspective of the Administration on Community Living and the One PR and would need
to be adjusted to reflect that this is the PAIMI PPR.
Board
TOTAL Numbers of Members (non-duplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers

PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary
Consumers
PAIMI or PAIR or PABSS Other Eligible Secondary
Consumers
Other Members
Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately reflect
the time in which we live nor truly grasp the overall experience of a person. Additionally,
the third answer of “unknown/would not disclose” does not appropriately cover that set
of individuals.
Like earlier, our fist suggestion for this section would be to change the title to “Gender of
PAIMI Eligible Individuals Served”. Second we also again believe the choices should
be the following four: Male, Female, Not Listed, and Chose Not To Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI Program
Funds
Our concern in this question is in #5 where you ask for the number of individuals with
co-occurring mental illness and intellectual and developmental disabilities (I/DD). It is
extremely common in IDR’s caseload for one individual to identify with more than one
disability. Because of this, we do not see the need or importance for collecting this
specific data point when it comes to evaluating the program. Thus, we would first
suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not
adequately describe the landscape when it comes to co-occurrence. In fact, as a term
of art, co-occurrence typically refers to substance use and mental illness (which is not
asked). Additionally, mental illness can, and often does, co-occur with other disabilities
such as traumatic brain injury and physical disabilities. We do not see the benefit of
restricting this to co-occurrence of mental illness and I/DD. Thus, if you decide to keep
the data point, do not just limit the co-occurring disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial information, it
feels misplaced in the eligibility section. This question would be more useful in

describing the demographics of a program, as co-existence of any other disability is not
reflective of the eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider
the outcomes of the One PPR when constructing the outcomes of the new PAIMI PPR
so that they more accurately reflect P&A individual and group advocacy. That said, the
instructions for this section (abuse section instructions are on page 3) do not reflect
these updated outcomes. In particular, both for internal consistency and to provide
consistent outcome information, the outcomes of individual advocacy in Section C of
Areas 1 - 5 should match the End Outcomes of group advocacy in Section 12. The
outcomes in Section 12 were specifically developed to provide information for SAMHSA
to use in its reporting to Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize the
intervention strategies between the One PPR and the PAIMI PPR to more accurately
reflect P&A advocacy, but that did not occur in the way this section is currently written.
We noticed that the PAIMI PPR continues to have the “Technical Assistance” option.
We believe that this could be confusing to staff to have different intervention strategies
across programs. This is magnified when you consider that the One PPR defines
Technical Assistance as a non-client directed activity. Cases that would be PAIMI
Technical Assistance could easily fall under limited Advocacy and eliminate the
confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for our
staff. They are tasked to solve issues at the lowest level, and often this includes
negotiating to obtain good outcomes for their clients. Limited Advocacy could describe
this strategy, but it seems richer to add the additional category, as it is such a common
way that our staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is critically
important that the definitions of these strategies be the same between the two PPRs.
Because if they are not, then the increase in efficiency through harmonized PPRs will
be lost. Thus, we have included below the definitions from the One PPR to be used in
the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to as Short
Term Assistance, is a level of intervention that can include advice and counseling, brief
research, or letter writing to the client to summarize assistance given. Advice and

counseling assistance includes informing a client of their rights; coaching the client in
self advocacy; reviewing information; counseling a client on actions one may take; or
assisting the client in preparing letters or documents and/or the dissemination of
information and materials related to the disability rights issue raised by the client. It
includes providing information sheets and other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes the
provision of a discrete task to a client or a discrete contact on behalf of a client with a
third party. Such activities upon completion require no further or ongoing actions, either
formal or informal. Limited Advocacy can include communications by letter, telephone
or other means to a third party; preparation of a simple legal document; or assisting a
client in the preparation of documents that are submitted by the client pro se to a third
party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial complaint
resolution process provided by government agencies, boards, commissions, or other
designated adjudicators, exercising decision making authority delegated by statute.
Administrative Remedy processes are generally simpler, less formal, and less technical
than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more people
voluntarily discuss their differences and attempt to reach a joint decision on their
common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute
resolution process using the services of an independent third party to help settle
differences or disputes between two or more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal
question or matter. Litigation involves many complex legal issues which require not
only a knowledge of the law that governs the dispute, but also, the laws governing the
procedures to be followed in order to properly litigate a claim. There are rules governing
who may file a claim, where it must be filed, when it must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMI-eligible
individuals
Indiana Disability Rights suggests that the definitions for group advocacy interventions
be consistent with those in the One-PPR which again more accurately reflect the work
of the P&As. These definitions follow.

Group Advocacy Services: Group advocacy services include work on behalf of
groups of people with disabilities pursued through the interventions of systemic
litigation, legislative and regulatory advocacy and systemic advocacy (non-litigious and
non-legislative). It is concerted action to reform the policies or mode of operations of a
system of services such as the disabilities service system or the policies and practices
of private actors. Report the intervention strategy (abuse and neglect investigation;
systemic litigation; educating policymakers; and other systemic advocacy) used in
each case/project. You may select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and thorough
examination of information, records, evidence and circumstances surrounding an
allegation of abuse and neglect. Investigations are distinct from advocacy and require a
significant allocation of time and resources including such activities as interviewing
witnesses, gathering evidence and generating a written report, which may or may not be
made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the policies or
mode of operations of a system of services. It attempts to address a systemic issue
raised by many individuals, through class action litigation, multi-plaintiff litigation, or in
some cases individual litigation when the relief sought has the potential of affecting
many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change. Policymakers may include individuals in both the executive and legislative branches of
government who make or interpret policies (legislation, regulations, rules or practices)
that impact the lives of people with disabilities. Our advocacy efforts might be directed
at the local, state, or federal level. Educating these individual makes them aware of how
their actions may impact people with
disabilities. Information reported should only include work done in accordance with
the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action by
the P&A agency to promote and effectuate changes in the policies, rules, and laws
that impact groups of people with disabilities, and to remove the barriers that
prevent or impede them from leading full, productive lives in the community that
does fit elsewhere in the form Systems advocacy typically addresses the
establishment, support, improvement, or expansion of (1) programs that provide
services or benefits to persons with disabilities, and (2) the legal rights,
protections, and entitlements of persons with disabilities; and may involve
opposition to efforts to weaken, reduce or eliminate existing services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and
quality of service by providers of services, supports and other assistance. Monitoring
may involve using the a P&A’s access authority to visit and in other ways seek

information from institutional or community settings including public and private
facilities where people with disabilities live, work and go to school by a) conducting
face-to-face interviews with individuals with disabilities in those settings; b)
conducting at least one face-to-face interview with a staff member in those settings;
3) observing and evaluating the physical conditions of the setting; and 4) accessing
and reviewing records, when appropriate, in accordance with applicable federal and
state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a
segregated setting to a community based setting to achieve integration and
independence. However, there is plenty of IDR’s PAIMI work that is done to ensure that
an individual receives community based services so that the individual can remain
living in the community (like their own home) and be integrated and independent. Thus,
we believe that “a” should specifically reference maintaining already existing community
integration. So, for example, “a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based services
resulting in, or maintaining, community integration and independence;
Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for IDR’s
individual PAIMI staff. As a state agency, employees’ salaries are available as a matter
of public record. We are generally hesitant to post lower level staff salaries and have
these common knowledge in the organization. It seems as though aggregate salary
information would accomplish the needs of SAMHSA, while also maintaining the
integrity of the lower level data. We do applaud the change to WebBGas to black out
the salary information.
Again, we appreciate the opportunity to comment on this collection of information, and
believe this new PPR is one big step to a streamlined data collection process that will
provide the necessary data to show the effectiveness of the PAIMI program to SAMSHA
and Congress. Please be in touch with Melissa Keyes if you have any questions about
this letter.
Sincerely,

Melissa Keyes, MS, JD

Executive Director, Indiana Disability Rights
[email protected]
(317)722-3463

From:
To:
Cc:
Subject:
Date:

Jane Hudson
Wagman, Samuel (SAMHSA/OFR/DOB)
"[email protected]"; Whitney Driscoll; Cyndy Miller
Disability Rights Iowa Comments on Proposed PAIMI PPR
Monday, January 6, 2020 4:40:57 PM

Mr. Wagman 
Thank you for giving us the opportunity to comment on the proposed PAIMI PPR. We agree with
the comments submitted by the National Disability Rights Network.  In addition, we request that
you consider the comments below.  If you have any questions, please do not hesitate to contact
me.  Thanks again. Jane Hudson

1.) Under “Areas of Alleged Rights Violations” add  “Failure to provide a reasonable accommodation
(e.g., service animal access denials, testing environment).” DRI has had several cases involving
alleged denial of service animals for individuals with mental illness.  DRI has also been asked to
represent individuals who are requesting reasonable accommodations with respect to professional
and licensing examinations.    Neither of those issues fit any of the current listed rights violations. 
 We would prefer to have these listed, rather than placing them in the “other” category, which is
limited to 1% of our total cases.

2.) In Section C.10.5 consider adding additional specialized target populations such as “youth
involved in the juvenile justice system,” “children and youth in foster care,” “prisoners,” “inmates in
jails”, and  “involuntarily institutionalized in mental health facilities.”

3.)  In Section D.3 add in a field allowing reporting of the number of individuals who received
information from public awareness activities/events. Currently the PPR only allows reporting of the
number of individuals trained, but we disseminate a lot of information in outreach/awareness
events, so it would be beneficial to report the outcome of those efforts immediately following where
we report on the number of those events, similar to the reporting of that information for trainings.

4.) In Section H (Statement of Priorities) there is currently suggested a 500 word/character limit for
narratives. It would be helpful the instructions to the section clarified whether we should only list
one exemplar case narrative, or whether we have to very briefly list all of the cases under the
priority in order to accurately report yet stay within the short word limit.  Currently the wording of
the instructions is not clear.

5.) In Section H, it would be helpful if “Partially Met” was an option when reporting outcomes on
Priorities. “Partially met” had been an option on previous PPRs and allowed us to explain the
progress made as well as any reason for not meeting a specified goal.

6.) With the proposed changes to Intervention Strategies it would be helpful to have language
clarifying the differences between Self-Advocacy Assistance, Technical Assistance and
Information/Referrals.

Jane Hudson, J.D.
Executive Director

400 East Court Ave., Ste. 300
Des Moines, Iowa 50309
Tel: 515-278-2502x20; Toll Free: 1-800-779-2502
FAX: 515-278-0539; Toll Free TTY: 1-866-483-3342
E-mail: [email protected]
www. disabilityrightsiowa.org

Our Mission:  To defend and promote the human and legal rights of Iowans with disabilities

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January 6, 2020
Sam Wagman

SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, Maryland 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Mr. Wagman:
Disability Rights Maryland is pleased to have this opportunity to comment on SAMHSA’s proposed changes to the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program’s annual Program Performance Report (PPR). Disability Rights
Maryland believes that this iteration of the PAIMI PPR takes positive steps to further the
goal of standardizing the PPRs that the state Protection and Advocacy systems complete annually for many of their formula grants, as well as to ensure that the data collected is as clear and useful as possible.
Yearly, Disability Rights Maryland is required to produce a PPR for the PAIMI program,
as well as six other programs administered by Disability Rights Maryland. These PPRs
contain a wealth of information, including an evaluation of whether the program has met
the goals and priorities developed for the year with input from the community and the individuals that we serve. However, the data requested in each report is not standardized, which requires us to spend a large amount of time drafting and creating the PPRs
and organizing our data collection activities to collect information in many different
ways. Given the limited resources that we have, it would directly benefit people with disabilities if the reports could be standardized so that these resources could instead be
used to provide direct services to people with disabilities.
That is why we appreciate SAMHSA’s efforts to consider modeling updates to the PPR
on recommendations from the P&A network. Our national association, the National Disability Rights Network (NDRN) and the P&As have worked over the last couple of years
with the Administration on Disability (AOD) to streamline the Protection and Advocacy
for Individuals with Developmental Disabilities (PADD), Protection and Advocacy for
Voter Access (PAVA), Protection and Advocacy for Individuals with Traumatic Brain Injury (PATBI), and Protection and Advocacy for Assistive Technology (PAAT) PPR reporting processes. The ultimate goal was to produce one PPR that effectively and efficiently documents the work of a particular P&A agency while providing AOD and Congress the information they need to properly evaluate these four P&A programs. This
work led to the creation of the One PPR that demonstrates the outcomes of the P&A

agencies and gives AOD and Congress the information they need to properly evaluate
each individual program. The One PPR itself was designed with the idea that all P&A
programs, including the PAIMI program, can use this concept to ultimately streamline
the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud SAMHSA for working with a number of P&As and NDRN over the last couple of years to incorporate much
of the One PPR framework into this new version of the yearly PAIMI PPR. We specifically support the inclusion of a number of important data points that were taken out of
the last version of the PAIMI PPR, as well adopting the outcomes from the One PPR to
standardize data collection and outcomes across the P&A programs. While we overall
support this new version of the PAIMI PPR there are a couple of suggestions that we
would propose SAMSHA consider before finalizing the new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board,
Advisory Council, and Program Staff
We believe the choices for the sex demographic question, which includes just two possible answers, does not reflect the time in which we live. It is not uncommon for our
board or PAIMI Council members to feel constrained by the traditional definitions of female and male, and it is uncomfortable for us to ask them to choose from just two options. Additionally, the use of the term “sex” connotes a biological definition, while to
truly grasp the overall experience of a person, the individual‘s true identity requires a different term, like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than “Sex.” Second,
we believe the choices should be the following four: Male, Female, Not Listed, and
Chose Not To Answer.
Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory
Council
Including only “mental health professionals” as choices for individuals that serve on the
advisory council ignores the other potential categories of individuals that are allowed to
serve on the council that are contained in the PAIMI statute. Section 10805(a)(6)(B) includes other categories, like attorneys, providers, individuals receiving or who have received mental health services, etc. that are not reflected in the list on Page 3 and should
be captured in the PPR.
Should you want to specifically break out the different types of mental health professionals, as referenced in the statute, we are concerned that the list of mental health professionals listed as answers for this question is too narrow for the scope of individuals that
may serve on the PAIMI Advisory Council. As SAMHSA’s own website shows
(https://www.samhsa.gov/workforce) the list of mental health professionals is much
broader than the limited list on Page 3. At a minimum, an “Other” category needs to be

added as an appropriate answer for other types of mental health professionals that may
serve on the advisory council. We strongly suggest that “Peer Support Specialists” be
added as a specifically enumerated choice, as this important change in service delivery
should be recognized.
Page 4, Section A, #15 – Governing Board Composition
As Disability Rights Maryland’s impact on people with disabilities encompasses more
than individuals with psychiatric disabilities, the governing board of Disability Rights
Maryland is not constricted to individuals or family members of individuals that have received mental health services. We agree that it is important to capture the number of individuals or family members of individuals with disabilities on the governing board, but
to properly reflect the governing board’s composition, we believe additional answer
choices should be added to this question to capture the participation of other individuals
with diverse disabilities and family members of these individuals. For instance, the One
PPR contemplates that there is diverse representation on a P&A board and could be
used as an example for the PAIMI PPR. We have pasted that table below for your reference. We understand that this is written from the perspective of the Administration on
Community Living and the One PPR and would need to be adjusted to reflect the requirements of the updated PAIMI PPR.

TOTAL Numbers of Members (non-duplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary Consumers
PAIMI or PAIR or PABSS Other Eligible Secondary
Consumers
Other Members

Board

Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately reflect
the time in which we live nor truly grasp the overall experience of a person. Additionally,
the third answer of “unknown/would not disclose” does not appropriately cover that set
of individuals.

As stated above, our fist suggestion for this section would be to change the title to “Gender of PAIMI Eligible Individuals Served”. Second, we also again believe the choices
should be the following four: Male, Female, Not Listed, and Chose Not To Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI Program
Funds
Our concern in this question is with #5, where the PPR requests the number of individuals with co-occurring mental illness and intellectual and developmental disabilities
(I/DD). It is extremely common in Disability Rights Maryland’s caseload for one individual to identify with more than one disability. Because of this, we do not see the need or
importance for collecting this specific data point when it comes to evaluating the program. Thus, we would first suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not adequately describe the landscape when it comes to co-occurrence. In fact, as a term of
art, co-occurrence typically refers to substance use and mental illness (which is not
asked). Additionally, mental illness can, and often does, co-occur with other disabilities
such as traumatic brain injury and physical disabilities. We do not see the benefit of restricting this to co-occurrence of mental illness and I/DD. Thus, if you decide to keep the
data point, do not just limit the co-occurring disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial information, it
feels misplaced in the eligibility section. This question would be more useful in describing the demographics of a program, as co-existence of any other disability is not reflective of the eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider
the outcomes of the One PPR when constructing the outcomes of the new PAIMI PPR
so that they more accurately reflect P&A individual and group advocacy. That said, the
instructions for this section (abuse section instructions are on page 3) do not reflect
these updated outcomes. In particular, both for internal consistency and to provide consistent outcome information, the outcomes of individual advocacy in Section C of Areas
1 - 5 should match the End Outcomes of group advocacy in Section 12. The outcomes
in Section 12 were specifically developed to provide information for SAMHSA to use in
its reporting to Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize the intervention strategies between the One PPR and the PAIMI PPR to more accurately reflect P&A advocacy, but that did not occur in the way this section is currently written.
We noticed that the PAIMI PPR continues to have the “Technical Assistance” option.

We believe that this could be confusing to staff to have different intervention strategies
across programs. This is magnified when you consider that the One PPR defines Technical Assistance as a non-client directed activity. Cases that would be PAIMI Technical
Assistance could easily fall under limited Advocacy and eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for our
staff. They are tasked to solve issues at the lowest level, and often this includes negotiating to obtain good outcomes for their clients. Limited Advocacy could describe this
strategy, but it seems richer to add the additional category, as it is such a common way
that our staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is critically important that the definitions of these strategies be the same between the two PPRs. Because if they are not, then the increase in efficiency through harmonized PPRs will be
lost. Thus, we have included below the definitions from the One PPR to be used in the
instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to as Short
Term Assistance, is a level of intervention that can include advice and counseling, brief
research, or letter writing to the client to summarize assistance given. Advice and
counseling assistance includes informing a client of their rights; coaching the client in
self advocacy; reviewing information; counseling a client on actions one may take; or
assisting the client in preparing letters or documents and/or the dissemination of information and materials related to the disability rights issue raised by the client. It includes
providing information sheets and other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes the provision of a discrete task to a client or a discrete contact on behalf of a client with a third
party. Such activities upon completion require no further or ongoing actions, either formal or informal. Limited Advocacy can include communications by letter, telephone or
other means to a third party; preparation of a simple legal document; or assisting a client in the preparation of documents that are submitted by the client pro se to a third
party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial complaint
resolution process provided by government agencies, boards, commissions, or other
designated adjudicators, exercising decision making authority delegated by statute. Administrative Remedy processes are generally simpler, less formal, and less technical
than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more people
voluntarily discuss their differences and attempt to reach a joint decision on their common concerns.

5. Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute resolution process using the services of an independent third party to help settle differences or disputes between two or more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal
question or matter. Litigation involves many complex legal issues which require not
only a knowledge of the law that governs the dispute, but also, the laws governing the
procedures to be followed in order to properly litigate a claim. There are rules governing
who may file a claim, where it must be filed, when it must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMI-eligible
individuals
Disability Rights Maryland suggests that the definitions for group advocacy interventions
be consistent with those in the One-PPR which again more accurately reflect the work
of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of
groups of people with disabilities pursued through the interventions of systemic litigation, legislative and regulatory advocacy and systemic advocacy (non-litigious and nonlegislative). It is concerted action to reform the policies or mode of operations of a system of services such as the disabilities service system or the policies and practices of
private actors. Report the intervention strategy (abuse and neglect investigation; systemic litigation; educating policymakers; and other systemic advocacy) used in each
case/project. You may select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and thorough examination of information, records, evidence and circumstances surrounding an allegation of abuse and neglect. Investigations are distinct from advocacy and require a significant allocation of time and resources including such activities as interviewing witnesses,
gathering evidence and generating a written report, which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the policies or
mode of operations of a system of services. It attempts to address a systemic issue
raised by many individuals, through class action litigation, multi-plaintiff litigation, or in
some cases individual litigation when the relief sought has the potential of affecting
many people with disabilities.

Educating Policy Makers- A critical strategy used to achieve systems change. Policymakers may include individuals in both the executive and legislative branches of government who make or interpret policies (legislation, regulations, rules or practices) that impact the lives of people with disabilities. Our advocacy efforts might be directed at the
local, state, or federal level. Educating these individual makes them aware of how their
actions may impact people with
disabilities. Information reported should only include work done in accordance with
the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action by the
P&A agency to promote and effectuate changes in the policies, rules, and laws that impact groups of people with disabilities, and to remove the barriers that prevent or impede them from leading full, productive lives in the community that does fit elsewhere
in the form Systems advocacy typically addresses the establishment, support, improvement, or expansion of (1) programs that provide services or benefits to persons with
disabilities, and (2) the legal rights, protections, and entitlements of persons with disabilities; and may involve opposition to efforts to weaken, reduce or eliminate existing
services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and quality
of service by providers of services, supports and other assistance. Monitoring may involve using the a P&A’s access authority to visit and in other ways seek information
from institutional or community settings including public and private facilities where people with disabilities live, work and go to school by a) conducting face-to-face interviews
with individuals with disabilities in those settings; b) conducting at least one face-to-face
interview with a staff member in those settings; 3) observing and evaluating the physical
conditions of the setting; and 4) accessing and reviewing records, when appropriate, in
accordance with applicable federal and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a segregated setting to a community based setting to achieve integration and independence.
However, there is plenty of Disability Rights Maryland’s PAIMI work that is done to ensure that an individual receives community based services so that the individual can remain living in the community (like their own home) and be integrated and independent.
Thus, we believe that “a” should specifically reference maintaining already existing community integration. So, for example, “a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based services
resulting in, or maintaining, community integration and independence;
Page 21 - Section G #1 - PAIMI Personnel

We are unclear as to how important it is for SAMHSA to know the salaries for Disability
Rights Maryland’s individual PAIMI staff. We are generally hesitant to post lower level
staff salaries and have them become common knowledge in the organization. It seems
as though aggregate salary information would accomplish the needs of SAMHSA, while
also maintaining the integrity of the lower level data. We do applaud the change to
WebBGAS to black out the salary information.
Again, we appreciate the opportunity to comment on this collection of information and
believe this new PPR is one big step to a streamlined data collection process that will
provide the necessary data to show the effectiveness of the PAIMI program to SAMSHA
and Congress. Please reach out to me at [email protected] or 410727-6352 x2482 if you have any questions about this letter.
Sincerely,

Robin Murphy
Executive Director

Luciene Parsley

Luciene Parsley
Legal Director

January 3, 2020
Summer King
SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, MD 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King:
Thank you for the opportunity to comment on this proposed collection of information regarding the
Protection and Advocacy for Individuals with Mental Illness (PAIMI) program. Disability Rights New York
(DRNY) is the Protection and Advocacy System for New York State. The proposed PAIMI Program
Performance Report (PPR) standardizes the data collected across P&A programs to better capture the
work we perform.
As you are aware, yearly DRNY is required to produce a PPR for the PAIMI program as well as 7 other
federally funded programs. These PPRs contain a wealth of information, including an evaluation of
whether the program has met the goals and priorities developed for the year with input from the
community and the individuals that we serve. However, the data requested in each report is not
standardized, which requires us to spend a large amount of time drafting and creating the PPRs. Given
the limited resources that we have, it would directly benefit people with disabilities if the reports could
be standardized so that these resources could instead be used to provide direct services to people with
disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling your updates to the PPR on
recommendations from the P&A network. Our national association, the National Disability Rights
Network (NDRN) and the P&As have worked over the last couple of years with the Administration on
Disability (AOD) to streamline the Protection and Advocacy for Individuals with Developmental
Disabilities (PADD), Protection and Advocacy for Voter Access (PAVA), Protection and Advocacy for
Individuals with Traumatic Brain Injury (PATBI), and Protection and Advocacy for Assistive Technology
(PAAT) PPR reporting processes. The ultimate goal was to produce one PPR that effectively and
efficiently documents the work of a particular P&A agency while providing AOD and Congress the
information they need to properly evaluate these four P&A programs. This work led to the creation of
the One PPR that demonstrates the outcomes of the P&A agencies and gives AOD and Congress the
information they need to properly evaluate each individual program. The One PPR itself was designed

Page 2 of 7
with the idea that all P&A programs, including the PAIMI program, can use this concept to ultimately
streamline the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud SAMHSA for working with DRNY,
other P&As and NDRN over the last couple of years to incorporate much of the One PPR framework in to
this new version of the yearly PAIMI PPR. We specifically support the inclusion of a number of
important data points that were taken out of the last version of the PAIMI PPR, as well adopting the
outcomes from the One PPR to standardize data collection and outcomes across the P&A programs.
While we overall support this new version of the PAIMI PPR there are a couple of suggestions that we
would propose SAMSHA consider before finalizing the new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board, Advisory Council, and
Program Staff
We believe the choices for the sex demographic question and the two answers, do not appropriately
reflect the time in which we live. It is not uncommon for our board or advisory council members, or
staff, to feel constrained by the traditional definitions of female and male. Additionally, the use of the
term “sex” connotes a biological definition, while to truly grasp the overall experience of a person, the
individual‘s true identity requires a different term like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than “Sex”. Second we believe the
choices should be the following four: Male, Female, Not Listed, and Chose Not To Answer.
Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory Council
Only including mental health professionals as choices for individuals that serve on the advisory council
ignores the other potential categories of individuals that are allowed to serve on the council that are
contained in the PAIMI statute. Section 10805(a) (6) (B) includes other categories like attorneys,
providers, individuals receiving or have received mental health services, etc. that are not reflected in this
list on Page 3 and should be captured in the PPR somehow.
Should you want to specifically break out the different types of mental health professionals, as
referenced in the statute, we are concerned that the list of mental health professionals listed as answers
for this question is too narrow for the scope of individuals that may serve on the PAIMI Advisory Council.
As SAMHSA’s own website shows (https://www.samhsa.gov/workforce) the list of mental health
professionals is much broader than the limited list on Page 3. At a minimum an “Other” category needs
to be added as an appropriate answer for other types of mental health professionals that may serve on
the advisory council. We strongly suggest that Peer Support Specialists should be added as a specifically
enumerated choice as this important change in service delivery should be recognized.
Page 4, Section A, #15 – Governing Board Composition
DRNY’s impact on people with disabilities encompasses more than individuals with psychiatric
disabilities, the governing board of DRNY is not constricted to individuals or family members of
individuals that have received mental health services. We agree that it is important to capture the
number of individuals or family members of individuals with disabilities on the governing board, but to
properly reflect the governing board’s composition, we believe additional answers should be added to

Page 3 of 7
this question to reflect other individuals with diverse disabilities and family members of these
individuals. For instance, the One PPR contemplates that there is a wider scope of disabilities on a P&A
board and could be used as an example for the PAIMI PPR. We have pasted that table down below. We
understand that this is written from the perspective of the Administration on Community Living and the
One PR and would need to be adjusted to reflect that this is the PAIMI PPR.
Board
TOTAL Numbers of Members (non-duplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary Consumers
PAIMI or PAIR or PABSS Other Eligible Secondary Consumers
Other Members
Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately reflect the time in which
we live nor truly grasp the overall experience of a person. Additionally, the third answer of
“unknown/would not disclose” does not appropriately cover that set of individuals.
Like earlier, our first suggestion for this section would be to change the title to “Gender of PAIMI Eligible
Individuals Served”. Second we also again believe the choices should be the following four: Male,
Female, Not Listed, and Chose Not To Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI Program Funds
Our concern in this question is in #5 where you ask for the number of individuals with co-occurring
mental illness and intellectual and developmental disabilities (I/DD). It is extremely common for one
individual to identify with more than one disability. Because of this, we do not see the need or
importance for collecting this specific data point when it comes to evaluating the program. Thus, we
would first suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not adequately describe
the landscape when it comes to co-occurrence. In fact, as a term of art, co-occurrence typically refers to
substance use and mental illness (which is not asked). Additionally, mental illness can, and often does,
co-occur with other disabilities such as traumatic brain injury and physical disabilities. We do not see

Page 4 of 7
the benefit of restricting this to co-occurrence of mental illness and I/DD. Thus, if you decide to keep the
data point, do not just limit the co-occurring disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial information, it feels misplaced
in the eligibility section. This question would be more useful in describing the demographics of a
program, as co-existence of any other disability is not reflective of the eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider the outcomes of
the One PPR when constructing the outcomes of the new PAIMI PPR so that they more accurately reflect
P&A individual and group advocacy. That said, the instructions for this section (abuse section
instructions are on page 3) do not reflect these updated outcomes. In particular, both for internal
consistency and to provide consistent outcome information, the outcomes of individual advocacy in
Section C of Areas 1 - 5 should match the End Outcomes of group advocacy in Section 12. The outcomes
in Section 12 were specifically developed to provide information for SAMHSA to use in its reporting to
Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize the intervention
strategies between the One PPR and the PAIMI PPR to more accurately reflect P&A advocacy, but that
did not occur in the way this section is currently written. We noticed that the PAIMI PPR continues to
have the “Technical Assistance” option. We believe that this could be confusing to staff to have
different intervention strategies across programs. This is magnified when you consider that the One PPR
defines Technical Assistance as a non-client directed activity. Cases that would be PAIMI Technical
Assistance could easily fall under limited Advocacy and would eliminate this confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for our staff. They are
tasked to solve issues at the lowest level, and often this includes negotiating to obtain good outcomes
for their clients. Limited Advocacy could describe this strategy, but it seems richer to add the additional
category, as it is such a common way that our staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is critically important that the
definitions of these strategies be the same between the two PPRs. Because if they are not, then the
increase in efficiency through harmonized PPRs will be lost. Thus, we have included below the
definitions from the One PPR to be used in the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to as Short Term Assistance, is
a level of intervention that can include advice and counseling, brief research, or letter writing to the
client to summarize assistance given. Advice and counseling assistance includes informing a client of
their rights; coaching the client in self advocacy; reviewing information; counseling a client on actions
one may take; or assisting the client in preparing letters or documents and/or the dissemination of
information and materials related to the disability rights issue raised by the client. It includes providing
information sheets and other materials.

Page 5 of 7
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes the provision of a discrete
task to a client or a discrete contact on behalf of a client with a third party. Such activities upon
completion require no further or ongoing actions, either formal or informal. Limited Advocacy can
include communications by letter, telephone or other means to a third party; preparation of a simple
legal document; or assisting a client in the preparation of documents that are submitted by the client
pro se to a third party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial complaint resolution process
provided by government agencies, boards, commissions, or other designated adjudicators, exercising
decision making authority delegated by statute. Administrative Remedy processes are generally simpler,
less formal, and less technical than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more people voluntarily
discuss their differences and attempt to reach a joint decision on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute resolution process
using the services of an independent third party to help settle differences or disputes between two or
more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal question or
matter. Litigation involves many complex legal issues which require not only a knowledge of the law
that governs the dispute, but also, the laws governing the procedures to be followed in order to
properly litigate a claim. There are rules governing who may file a claim, where it must be filed, when it
must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMI-eligible individuals
DRNY suggests that the definitions for group advocacy interventions be consistent with those in the
One-PPR which again more accurately reflect the work of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of groups of people with
disabilities pursued through the interventions of systemic litigation, legislative and regulatory advocacy
and systemic advocacy (non-litigious and non-legislative). It is concerted action to reform the policies or
mode of operations of a system of services such as the disabilities service system or the policies and
practices of private actors. Report the intervention strategy (abuse and neglect investigation; systemic
litigation; educating policymakers; and other systemic advocacy) used in each case/project. You may
select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and thorough examination of
information, records, evidence and circumstances surrounding an allegation of abuse and neglect.
Investigations are distinct from advocacy and require a significant allocation of time and resources
including such activities as interviewing witnesses, gathering evidence and generating a written report,
which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the policies or mode of
operations of a system of services. It attempts to address a systemic issue raised by many individuals,

Page 6 of 7
through class action litigation, multi-plaintiff litigation, or in some cases individual litigation when the
relief sought has the potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change. Policy-makers may include
individuals in both the executive and legislative branches of government who make or interpret policies
(legislation, regulations, rules or practices) that impact the lives of people with disabilities. Our advocacy
efforts might be directed at the local, state, or federal level. Educating these individual makes them
aware of how their actions may impact people with disabilities. Information reported should only
include work done in accordance with the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action by the P&A agency to
promote and effectuate changes in the policies, rules, and laws that impact groups of people with
disabilities, and to remove the barriers that prevent or impede them from leading full, productive lives
in the community that does fit elsewhere in the form Systems advocacy typically addresses the
establishment, support, improvement, or expansion of (1) programs that provide services or benefits to
persons with disabilities, and (2) the legal rights, protections, and entitlements of persons with
disabilities; and may involve opposition to efforts to weaken, reduce or eliminate existing services or
rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and quality of service by
providers of services, supports and other assistance. Monitoring may involve using the a P&A’s access
authority to visit and in other ways seek information from institutional or community settings including
public and private facilities where people with disabilities live, work and go to school by a) conducting
face-to-face interviews with individuals with disabilities in those settings; b) conducting at least one
face-to-face interview with a staff member in those settings; 3) observing and evaluating the physical
conditions of the setting; and 4) accessing and reviewing records, when appropriate, in accordance with
applicable federal and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a segregated setting to
a community based setting to achieve integration and independence. However, some of DRNY’s PAIMI
efforts are spent ensuring that an individual receives community based services so that the individual
can remain living in the community (like their own home) and be integrated and independent. Thus, we
believe that “a” should specifically reference maintaining already existing community integration. So,
for example, “a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based services resulting in, or
maintaining, community integration and independence;
Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for individual PAIMI staff.
While we understand that it is beneficial to understand the higher salaries, these are all contained on
our 990 filings. We suggest that aggregate salary information would accomplish the needs of SAMHSA,
while also maintaining the integrity of the lower level data. We do applaud the change to WebBGas to
black out the salary information.

Page 7 of 7
Again, we appreciate the opportunity to comment on this collection of information, and believe this new
PPR is one big step to a streamlined data collection process that will provide the necessary data to show
the effectiveness of the PAIMI program to SAMSHA and Congress. We would welcome the opportunity
to discuss any of the above concerns and thank you for the opportunity to share our comments.
Very truly yours,

Timothy A. Clune

Timothy A. Clune, Esq.
Executive Director

December 30, 2019
Summer King
SAMHSA Reports Clearance Officer
5600 Fishers Lane, Room 14E57B
Rockville, Maryland 20857
Submitted by e-mail - [email protected]
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King:
Thank you for the opportunity to comment on this proposed collection of information regarding the
Protection and Advocacy for Individuals with Mental Illness (PAIMI) program. Disability Rights North Carolina
(DRNC) believes that this iteration of the PAIMI Program Performance Report (PPR) is an opportunity to
ensure that the data collected is as clear and useful as possible, and advance efforts to standardize the PPRs
that are required for all our federal grants.
Annually, DRNC is required to produce a Program Performance Report (PPR) for the PAIMI program, in
addition to the 7 other federal programs that DRNC conducts. These PPRs contain a wealth of information,
including an evaluation as to whether the program has met the goals and priorities we have established with
input from the community and individuals we serve. Unfortunately, data requested in the various PPRs is not
standardized, which requires us to spend an even greater amount of time compiling and drafting the PPRs.
Given our limited resources, it would directly benefit people with disabilities if the reports could be
standardized and streamlined, so additional resources could be directed to the provision of direct services to
people with disabilities.
We very much appreciate SAMHSA’s efforts to consider modeling your PPR updates on recommendations
from the Protection & Advocacy (P&A) network. Our national association, the National Disability Rights
Network (NDRN) and the P&As have worked over recent years with the Administration on Disabilities (AOD) to
standardize the Protection and Advocacy for Individuals with Developmental Disabilities (PADD), Protection
and Advocacy for Voter Access (PAVA), Protection and Advocacy for Individuals with Traumatic Brain Injury
(PATBI), and Protection and Advocacy for Assistive Technology (PAAT) PPR reporting processes.The goal was to
produce one PPR that effectively and efficiently documents the work of each P&A while providing AOD and
Congress the information they need to properly evaluate these four programs. This work led to the creation of
the “One PPR” to capture and report the outcomes of the P&As and provide AOD and Congress the necessary

North Carolina's Protection
and Advocacy System

3724 National Drive
Suite 100
Raleigh, NC 27612

919-856-2195
877-235-4210
888-268-5535 TTY
919-856-2244 fax

www.disabilityrightsnc.org

information. The One PPR was designed with the idea that all P&A programs, including the PAIMI program,
could use this concept to help streamline the existing reports. Use of this One PPR started in Fiscal Year 2019.
We applaud SAMHSA for working with a number of P&As and NDRN over the past years to incorporate much
of the One PPR framework into this new version of the annual PAIMI PPR. We specifically support the inclusion
of a number of important data points that were removed from the last version of the PAIMI PPR, as well as
adopting the outcomes from the One PPR to standardize data collection and outcomes across the P&A
programs.
While we generally support this new version of the PAIMI PPR, we submit for SAMHSA’s consideration the
following suggestions before finalizing the new PAIMI PPR.
Overall, the PAIMI program would be improved by enhanced tracking of specific rights violations work,
including housing, education and employment. The ability to capture this work in our reporting would give
SAMHSA and the public a better understanding of the scope and importance of our work.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board, Advisory Council, and Program
Staff
There are only two binary choices for the “sex” demographic question which does not appropriately reflect
the time in which we live. It is not uncommon for our board or advisory council members, or staff, to feel
constrained by the traditional definitions of female and male. Additionally, the use of the term “sex” connotes
a biological definition, while an individual’s overall experience and identity requires a more encompassing
term like gender.
We suggest changing the title to “Gender” rather than “Sex” and that the choices could be the following four:
Male, Female, Not Listed, and Chose Not to Answer.
Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory Council
Only including mental health professionals as choices for individuals that serve on the advisory council ignores
the other potential categories of individuals that are allowed to serve on the Council pursuant to the PAIMI
statute. The PAIMI Act at 42 USC Section 10805(a)(6)(B) mandates other categories, attorneys, providers,
individuals who are receiving or have received mental health services, etc. that are not reflected in this list on
Page 3.
Should you find it useful to break out the statute’s reference to “mental health professionals” into specific
subcategories, we are concerned that the list of mental health professionals provided for this question is much
too narrow for the scope of individuals that may serve on the PAIMI Advisory Council (PAC). As SAMHSA’s
own website shows (https://www.samhsa.gov/workforce), the list of mental health professionals is
considerably broader than the limited list on Page 3. At a minimum, an “Other” category needs to be added as
an appropriate answer for other types of mental health professionals that may serve on the PAC. Finally, we
strongly suggest that Peer Support Specialists be added as a specifically enumerated choice as this important
change in service delivery should be recognized.
Page 4, Section A, #15 – Governing Board Composition
As DRNC’s service to the disability community includes, but extends beyond, individuals with mental health
disabilities, DRNC’s governing board not limited to individuals who have received mental health services and

their family members. We agree that it is important to capture the number of individuals and family members
of individuals with disabilities on the governing board, but to properly reflect the board’s composition, we
believe additional options must be added to this question to reflect other individuals with diverse disabilities
their family members. For instance, the One PPR contemplates that there is a wider scope of disabilities on a
P&A board and could be used as an example for the PAIMI PPR. That table is set forth below. We understand
that this is written from the perspective of the Administration on Community Living and the One PPR, and
would need to be adjusted to reflect the PAIMI PPR.
Board
TOTAL Numbers of Members (non-duplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary Consumers
PAIMI or PAIR or PABSS Other Eligible Secondary
Consumers
Other Members
Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” is inappropriate. Additionally, the third answer of
“unknown/would not disclose” does not cover the range of individuals concerned.
Again, our suggestion is to change the title to “Gender of PAIMI Eligible Individuals Served” and offer the
choices: Male, Female, Not Listed, and Chose Not to Answer.
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI Program Funds
Our concern in this question is in #5 where you ask for the number of individuals with co-occurring mental
illness and intellectual and developmental disabilities (I/DD). It is very common in DRNC’s caseload for one
individual to identify with multiple disabiilties and we see no need or utility in collecting this specific data point
when it comes to evaluating the program. We suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not adequately describe the
landscape when it comes to co-occurrence. In fact, as a term of art, co-occurrence typically refers to substance
use and mental illness (which is not asked). Additionally, mental illness can, and often does, co-occur with
other disabilities such as traumatic brain injury and physical disabilities. We do not see the benefit of
restricting this to co-occurrence of mental illness and I/DD. Should you decide to keep the data point, do not
limit the co-occurring disability to I/DD, and note that places additional burdens on our clients without known
rationale.
Finally, the question seems misplaced in the eligibility section. This question would be more useful in
describing the demographics of a program, as in co-existence of any other disability. It is not reflective of the
eligibility of that person, which is specified in statute.

Section C: Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider the outcomes of the
One PPR when constructing the outcomes of the new PAIMI PPR so that they more accurately reflect P&A
individual and group advocacy. That said, the instructions for this section (abuse section instructions are on
page 3) do not reflect these updated outcomes. In particular, both for internal consistency and to provide
consistent outcome information, the outcomes of individual advocacy in Section C of Areas 1 - 5 should match
the End Outcomes of group advocacy in Section 12. The outcomes in Section 12 were specifically developed to
provide information for SAMHSA to use in its reporting to Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize the intervention strategies
between the One PPR and the PAIMI PPR to more accurately reflect P&A advocacy, but that did not occur as
this section is currently written. We noticed that the PAIMI PPR continues to have the “Technical Assistance”
option. We believe that this could be confusing to staff to have different intervention strategies across
programs. This is magnified when you consider that the One PPR defines Technical Assistance as a non-client
directed activity. Cases that would be PAIMI Technical Assistance could easily fall under Limited Advocacy to
eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for our staff. They are tasked to
solve issues at the lowest level, and often this includes negotiating to obtain favorable outcomes for our
clients. While Limited Advocacy could possibly describe this strategy, it is more accurate to add the
Negotiation category, as it is such a common way that our staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is critically important that the
definitions of these strategies be the same between the two PPRs. If they are not, the increased efficiency
sought through harmonized PPRs will be lost. Thus, we have included below the definitions from the One PPR
to be used in the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to as Short Term Assistance, is a
level of intervention that can include advice and counseling, brief research, or letter writing to the client to
summarize assistance given. Advice and counseling assistance includes informing a client of their rights;
coaching the client in self advocacy; reviewing information; counseling a client on actions one may take; or
assisting the client in preparing letters or documents and/or the dissemination of information and materials
related to the disability rights issue raised by the client. It includes providing information sheets and other
materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes the provision of a discrete task
to a client or a discrete contact on behalf of a client with a third party. Such activities upon completion require
no further or ongoing actions, either formal or informal. Limited Advocacy can include communications by
letter, telephone or other means to a third party; preparation of a simple legal document; or assisting a client
in the preparation of documents that are submitted by the client pro se to a third party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial complaint resolution process
provided by government agencies, boards, commissions, or other designated adjudicators, exercising decision
making authority delegated by statute. Administrative Remedy processes are generally simpler, less formal,
and less technical than the judicial process.

4. Negotiation: Negotiation is a problem-solving process in which two or more people voluntarily discuss their
differences and attempt to reach a joint decision on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute resolution process using
the services of an independent third party to help settle differences or disputes between two or more
individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal question or matter.
Litigation involves many complex legal issues which require not only a knowledge of the law that governs the
dispute, but also, the laws governing the procedures to be followed in order to properly litigate a claim. There
are rules governing who may file a claim, where it must be filed, when it must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMI-eligible individuals
DRNC suggests that the definitions for group advocacy interventions be consistent with those in the One PPR,
which again more accurately reflect the work of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of groups of people with
disabilities pursued through the interventions of systemic litigation, legislative and regulatory advocacy and
systemic advocacy (non-litigious and non-legislative). It is concerted action to reform the policies or mode of
operations of a system of services such as the disabilities service system or the policies and practices of
private actors. Report the intervention strategy (abuse and neglect investigation; systemic litigation;
educating policymakers; and other systemic advocacy) used in each case/project. You may select more than
one per project.
Abuse and Neglect Investigation - An investigation is a systematic and thorough examination of information,
records, evidence and circumstances surrounding an allegation of abuse and neglect. Investigations are
distinct from advocacy and require a significant allocation of time and resources including such activities as
interviewing witnesses, gathering evidence and generating a written report, which may or may not be made
public.
Systemic Litigation - Systemic litigation is a concerted action to reform the policies or mode of operations of a
system of services. It attempts to address a systemic issue raised by many individuals, through class action
litigation, multi-plaintiff litigation, or in some cases individual litigation when the relief sought has the
potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change. Policy-makers may include
individuals in both the executive and legislative branches of government who make or interpret policies
(legislation, regulations, rules or practices) that impact the lives of people with disabilities. Our advocacy
efforts might be directed at the local, state, or federal level. Educating these individual makes them aware of
how their actions may impact people with disabilities. Information reported should only include work done in
accordance with the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action by the P&A agency to promote
and effectuate changes in the policies, rules, and laws that impact groups of people with disabilities, and
to remove the barriers that prevent or impede them from leading full, productive lives in the
community that does fit elsewhere in the form Systems advocacy typically addresses the establishment,

support, improvement, or expansion of (1) programs that provide services or benefits to persons with
disabilities, and (2) the legal rights, protections, and entitlements of persons with disabilities; and may
involve opposition to efforts to weaken, reduce or eliminate existing services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and quality of service by providers
of services, supports and other assistance. Monitoring may involve using the a P&A’s access authority to visit
and in other ways seek information from institutional or community settings including public and private
facilities where people with disabilities live, work and go to school by a) conducting face-to-face interviews
with individuals with disabilities in those settings; b) conducting at least one face-to-face interview with a staff
member in those settings; 3) observing and evaluating the physical conditions of the setting; and 4) accessing
and reviewing records, when appropriate, in accordance with applicable federal and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a segregated setting to a
community-based setting to achieve integration and independence. However, DRNC’s PAIMI work includes
ensuring that an individual receives community-based services to remain living in the community and be
integrated and independent. Thus, we believe that “a” should specifically reference maintaining already
existing community integration. So, for example, “a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based services resulting in, or
maintaining, community integration and independence;
Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to the importance for SAMHSA to collect data on the salaries for our individual PAIMI
program staff. If aimed at reviewing the highest salaries, these are contained on our 990 filings. It seems as
though aggregate salary information would accomplish the needs of SAMHSA, while also maintaining the
integrity of personnel information. We do appreciate the change to WebBGas to black out salary information.
Again, we appreciate the opportunity to comment on this collection of information, and believe this new PPR
is a major step toward uniform data collection processes that will provide the data necessary to demonstrate
the effectiveness of the PAIMI program to SAMHSA and Congress. Please be in touch with me at 919-856-2195
or [email protected] if you have any questions about this letter.
Sincerely,

Virginia Knowlton Marcus
Chief Executive Officer

Michael Kirkman, Esq.
Executive Director
614-466-7264, 113
[email protected]

January 6, 2020 
Samuel Wagman 
SAMHSA Reports Clearance Officer, 
5600 Fishers Lane, Room 14E57B, 
Rockville, Maryland 20857 

Submitted by e‐mail ‐ [email protected] 

Re: Agency Information Collection Activities: Proposed Collection; 
Comment Request 84 Fed. Reg. 59836 (November 6, 2019) 

Thank you for the opportunity to comment on this proposed collection of information 
regarding the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program. As a 
member of the team that represented our national association, the National Disability Rights 
Network (NDRN), and the P&A network in drafting this PPR, I want to express my appreciation 
for the willingness of the staff at SAMHSA to listen to our concerns, and to work collaboratively 
to create a report that fairly and correctly captures the legal needs of PAIMI eligible clients and 
the work our network accomplishes on their behalf. In particular, I appreciate the willingness to 
correct several issues that were included in the current PPR that either misstated the legal 
requirements of the PAIMI Act (e.g. including the measure of within 90 days of hospitalization) 
or ignored significant rights issues that affect PAIMI eligible clients (e.g. housing, education, and 
employment). I also want to recognize Steven Dettwyler, Ph.D., for his interest in capturing 
accurate and representative data from the P&As that will allow for better reporting to Congress 
and the general public. 

Beyond the corrections, this iteration of the PAIMI Program Performance Report (PPR) is 
an excellent opportunity to further the work in standardizing the PPRs that we do for all the 
programs as well as ensure that the data collected is as clear and useful as possible. Disability 
Rights Ohio is required to produce an annual Program Performance Report (PPR) for the PAIMI 
program as well as nine other P&A or CAP programs administered by Disability Rights Ohio. 
These PPRs contain a wealth of information, including an evaluation of whether the program 
has met the goals and priorities developed for the year with input from the community and the 
individuals that we serve. However, the data requested in each report is not standardized, 
which requires us to spend a large amount of time drafting and creating the PPRs. Given the 
limited resources that we have, it would directly benefit people with disabilities if the reports 
could be standardized so that these resources could instead be used to provide direct services 
to people with disabilities. 

Ohio Disability Rights Law and Policy Center, Inc. 
200 Civic Center Drive, Ste. 300 
Columbus, Ohio 43215

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 2

That is why we appreciate the efforts of SAMHSA to consider modeling the updates to 
the PPR on recommendations from the P&A network. NDRN and the P&As have worked over 
the last couple of years with the Administration on Disability (AOD) to streamline the Protection 
and Advocacy for Individuals with Developmental Disabilities (PADD), Protection and Advocacy 
for Voter Access (PAVA), Protection and Advocacy for Individuals with Traumatic Brain Injury 
(PATBI), and Protection and Advocacy for Assistive Technology (PAAT) PPR reporting processes. 
The ultimate goal was to produce one PPR that effectively and efficiently documents the work 
of a particular P&A agency while providing AOD and Congress the information they need to 
properly evaluate these four P&A programs. This work led to the creation of the One PPR that 
demonstrates the outcomes of the P&A agencies and gives AOD and Congress the information 
they need to properly evaluate each individual program.  The One PPR itself was designed with 
the idea that all P&A programs, including the PAIMI program, can use this concept to ultimately 
streamline the existing reports.   

Use of this One PPR started with Fiscal Year 2019. We specifically support the inclusion 
of a number of important data points that were taken out of the last version of the PAIMI PPR, 
as well adopting the outcomes from the One PPR to standardize data collection and outcomes 
across the P&A programs. That said, there are a few issues that we propose SAMSHA consider 
before finalizing the new PAIMI PPR. 
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board, Advisory 
Council, and Program Staff 

We believe the choices for the sex demographic question, nor the two answers, 
appropriately reflect the time in which we live. It is not uncommon for our board, advisory 
council members, or staff to feel constrained by the traditional definitions of female and male.  
Additionally, the use of the term “sex” connotes a biological definition, while to truly grasp the 
overall experience of a person, the individual‘s true identity requires a different term like 
gender. 
Thus, we request that you change the title to “Gender” rather than “Sex”.  Second we believe 
the choices should be the following four: “Male,” “Female,” “Not Listed,” and “Chose Not to 
Answer.” 
Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory Council 

This listing ignores the specific language in the PAIMI Act. Section 10805(a) (6) (B) 
includes other categories like attorneys, providers, individuals receiving or have received 
mental health services, etc. that are not reflected in this list on Page 3 and should be captured 
in the PPR somehow. There is no basis to collect information on only mental health 
professionals. 

If you would decide to specifically break out the different types of mental health 
professionals, as referenced in the statute, we are concerned that the list of mental health 
professionals listed as answers for this question is too narrow. As SAMHSA’s own website 
shows (https://www.samhsa.gov/workforce) the list of mental health professionals is much 
broader than the limited list on Page 3. At a minimum an “Other” category needs to be added 

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 3

as an appropriate answer for other types of mental health professionals that may serve on the 
advisory council. Additionally, we strongly suggest that Peer Support Specialists should be 
added as a specifically enumerated choice as this important change in service delivery should 
be recognized. 
Page 4, Section A, #15 – Governing Board Composition 

As Disability Rights Ohio’s impact on people with disabilities encompasses more than 
individuals with psychiatric disabilities, the governing board of Disability Rights Ohio is not 
constricted to individuals or family members of individuals that have received mental health 
services. Our board has a broad range of individuals with disabilities, family members, and 
interested professionals. This gives us a broader view of mission and also allows us to comply 
with requirements of multiple grants. While we agree that it is important to capture the 
number of individuals or family members of individuals with disabilities on the governing board, 
additional answers should be added to this question to reflect other individuals with diverse 
disabilities and family members of these individuals. For instance, the One PPR contemplates 
that there is a wider scope of disabilities on a P&A board and could be used as an example for 
the PAIMI PPR.  We have pasted that table down below.  We understand that this is written 
from the perspective of the Administration on Community Living and the One PPR and would 
need to be adjusted to reflect that this is the PAIMI PPR. 

Board 

TOTAL Numbers of Members (non‐duplicative)  

PADD Eligible Primary Consumers 

PADD Eligible Secondary Consumers 

PATBI Eligible Primary Consumers 

PATBI Eligible Secondary Consumers 

AT Users 

PAIMI or PAIR or PABSS Eligible Primary Consumers  

PAIMI or PAIR or PABSS Other Eligible Secondary 
Consumers 

Other Members 

Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served 

As raised in Section A, #11, we believe the use of “sex” does not appropriately reflect 
the time in which we live nor truly grasp the overall experience of a person. Additionally, the 
third answer of “unknown/would not disclose” does not appropriately cover that set of 
individuals.   

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 4

Like earlier, our first suggestion for this section would be to change the title to “Gender 
of PAIMI Eligible Individuals Served.” Second we also again believe the choices should be the 
following four: “Male,” “Female,” “Not Listed,” and “Chose Not to Answer.” 
Page 6, Section B, #4 ‐ PAIMI‐eligible Individuals Served with PAIMI Program Funds 

Our concern in this question is in #5 where you ask for the number of individuals with 
co‐occurring mental illness and intellectual and developmental disabilities (I/DD). It is extremely 
common in Disability Rights Ohio’s caseload for one individual to identify with more than one 
disability. Because of this, we do not see the need or importance for collecting this specific data 
point when it comes to evaluating the program. Thus, we would first suggest dropping this data 
point. 

If you feel this type of information is important, then limiting it to I/DD does not 
adequately describe the landscape when it comes to co‐occurrence. In fact, as a term of art, co‐
morbidity or “dual diagnosis” more typically refers to substance use and mental illness, which is 
not asked. In particular, as Ohio is at the center of the current opioid crisis, this oversight 
should be corrected.  

Additionally, more recent research shows a high number of people with mental illness 
have experienced traumatic brain injury. This data would be valuable to have as our awareness 
of this phenomenon grows. 

Finally, while the question, if expanded, does potentially yield beneficial information, it 
feels misplaced in the eligibility section. This question would be more useful in describing the 
demographics of a program, as co‐existence of any other disability in no way limits PAIMI 
eligibility for the person. 
Section C (Instructions):  Complaints/Problems of PAIMI‐eligible Individuals 

As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider 
the outcomes of the One PPR when constructing the outcomes of the new PAIMI PPR so that 
they more accurately reflect P&A individual and group advocacy.  That said, the instructions for 
this section (abuse section instructions are on page 3) do not reflect these updated outcomes. 
In particular, both for internal consistency and to provide consistent outcome information, the 
outcomes of individual advocacy in Section C of Areas 1 ‐ 5 should match the End Outcomes of 
group advocacy in Section 12. The outcomes in Section 12 were specifically developed to 
provide information for SAMHSA to use in its reporting to Congress.  
Page 12, Section C, #8 – Intervention Strategies 

This is another section we appreciate SAMSHA’s effort to harmonize the intervention 
strategies between the One PPR and the PAIMI PPR to more accurately reflect P&A advocacy. 
Unfortunately, that goal was missed as this section is currently written. We noticed that the 
PAIMI PPR continues to have the “Technical Assistance” option. This could be confusing to staff 
to have different intervention strategies across programs. This is magnified when you consider 
that the One PPR defines Technical Assistance as a non‐client directed activity. Cases that 

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 5

would be PAIMI Technical Assistance could easily fall under Limited Advocacy and eliminate the 
confusion. 

Additionally, we strongly urge you to add “Negotiation” as an intervention. This is an 
important strategy for our staff and the most common form of dispute resolution across all of 
our programs. Staff is tasked to solve issues at the lowest level, and often this includes 
negotiating to obtain good outcomes for their clients. Limited Advocacy could describe this 
strategy, but it seems richer to add the additional category, as it is such a common way that our 
staff do their work. 

Even if the list is the same between the One PPR and the PAIMI PPR, it is critically 
important that the definitions of these strategies be the same between the two PPRs.  If they 
are not, the increase in efficiency through harmonized PPRs is lost. Thus, we have included 
below the definitions from the One PPR to be used in the instructions on this question. 
1.  Self‐Advocacy Assistance: Self‐advocacy Assistance, formerly referred to as Short 
Term Assistance, is a level of intervention that can include advice and counseling, brief 
research, or letter writing to the client to summarize assistance given. Advice and 
counseling assistance includes informing a client of their rights; coaching the client in 
self advocacy; reviewing information; counseling a client on actions one may take; or 
assisting the client in preparing letters or documents and/or the dissemination of 
information and materials related to the disability rights issue raised by the client. It 
includes providing information sheets and other materials. 
2.  Limited Advocacy: Limited Advocacy is a level of intervention that includes the 
provision of a discrete task to a client or a discrete contact on behalf of a client with a 
third party. Such activities upon completion require no further or ongoing actions, either 
formal or informal.  Limited Advocacy can include communications by letter, telephone 
or other means to a third party; preparation of a simple legal document; or assisting a 
client in the preparation of documents that are submitted by the client pro se to a third 
party. 
3.  Administrative Remedies: An Administrative Remedy is any non‐judicial complaint 
resolution process provided by government agencies, boards, commissions, or other 
designated adjudicators, exercising decision making authority delegated by statute. 
Administrative Remedy processes are generally simpler, less formal, and less technical 
than the judicial process. 
4.  Negotiation: Negotiation is a problem‐solving process in which two or more people 
voluntarily discuss their differences and attempt to reach a joint decision on their 
common concerns. 
5.  Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute 
resolution process using the services of an independent third party to help settle 
differences or disputes between two or more individuals. 

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 6

6.  Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal 
question or matter.  Litigation involves many complex legal issues which require not 
only a knowledge of the law that governs the dispute, but also, the laws governing the 
procedures to be followed in order to properly litigate a claim. There are rules governing 
who may file a claim, where it must be filed, when it must be filed, and how to file it. 
Page 15, Section C, #11 ‐ 5E ‐ Interventions on behalf of groups of PAIMI‐eligible individuals 

Disability Rights Ohio suggests that the definitions for group advocacy interventions be 
consistent with those in the One PPR. These more accurately reflect the work of the P&As. 
These definitions follow. 
Group Advocacy Services: Group advocacy services include work on behalf of groups of 
people with disabilities pursued  through the interventions of systemic litigation, 
legislative and regulatory advocacy and systemic advocacy (non‐litigious and non‐
legislative).  It is concerted action to reform the  policies or mode of operations of a 
system of services such as the disabilities service system or  the policies and practices 
of private actors. Report the intervention strategy (abuse and neglect investigation; 
systemic litigation; educating   policymakers; and other systemic advocacy) used in 
each case/project.  You may select more  than one per project. 
Abuse and Neglect Investigation ‐ An investigation is a systematic and thorough 
examination of information, records, evidence  and circumstances surrounding an 
allegation of abuse and neglect.  Investigations are distinct  from advocacy and require 
a significant allocation of time and resources including such  activities as interviewing 
witnesses, gathering evidence and generating a written report, which  may or may not 
be made public. 
Systemic Litigation ‐ Systemic litigation is a concerted action to reform the policies or 
mode of operations of a  system of services.  It attempts to address a systemic issue 
raised by many individuals, through  class action litigation, multi‐plaintiff litigation, or 
in some cases individual litigation when the  relief sought has the potential of affecting 
many people with disabilities. 
Educating Policy Makers‐ A critical strategy used to achieve systems change. Policy‐
makers may include individuals in  both the executive and legislative branches of 
government who make or interpret policies  (legislation, regulations, rules or practices) 
that impact the lives of people with disabilities.  Our  advocacy efforts might be 
directed at the local, state, or federal level.  Educating these  individual makes them 
aware of how their actions may impact people with disabilities.  Information reported 
should only include work done in accordance with the limit on federal funding. 

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 7

Other Systemic Advocacy ‐ Other Systems Advocacy refers to concerted action by the P&A 
agency to promote and effectuate  changes  in  the policies,  rules, and  laws that  impact 
groups  of  people  with disabilities,  and to  remove  the  barriers  that  prevent  or 
impede  them  from  leading  full,  productive  lives  in  the  community that does fit 
elsewhere in the form Systems advocacy typically addresses the  establishment, 
support,  improvement,  or  expansion  of  (1)  programs  that  provide  services  or  benefits 
to persons  with disabilities, and  (2) the legal rights, protections, and  entitlements of 
persons with disabilities; and may involve opposition to efforts to weaken, reduce or 
eliminate  existing services or rights. 
Monitoring ‐ includes activities in which a P&A evaluates compliance issues and quality of 
service  by providers of services, supports and other assistance.  Monitoring may involve 
using the a  P&A’s access authority to visit and in other ways seek information from 
institutional or  community settings including public and private facilities where people 
with disabilities live,  work and go to school by a) conducting face‐to‐face interviews with 
individuals with disabilities  in those settings; b) conducting at least one face‐to‐face 
interview with a staff member in those  settings; 3) observing and evaluating the physical 
conditions of the setting; and 4) accessing and  reviewing records, when appropriate, in 
accordance with applicable federal and state law. 
Page 15, Section C, #12 ‐ End Outcomes of P&A Activities 

The phrasing in “a” implies that the individual is receiving our help to move from a 
segregated setting to a community based setting to achieve integration and independence.  
However, there is plenty of Disability Rights Ohio’s PAIMI work that is done to ensure that an 
individual receives community based services so that the individual can remain living in the 
community (like their own home) and be integrated and independent.  Thus, we believe that 
“a” should specifically reference maintaining already existing community integration.  So, for 
example, “a” could read as this: 
“PAIMI‐eligible individuals who are provided with appropriate community‐based services 
resulting in, or maintaining, community integration and independence;” 
Page 21 ‐ Section G #1 ‐ PAIMI Personnel 

We are unclear as to what basis SAMHSA has for obtaining the salaries for Disability 
Rights Ohio’s individual PAIMI staff, and object to the inclusion of this section in the PPR.  
Salaries are private and proprietary, and SAMHSA may not ask for this information without 
clear statutory or regulatory support. Higher salaries are contained on our 990 filings. 
Aggregate salary information would accomplish the needs of SAMHSA, while also maintaining 
the integrity of the lower level data.  We do applaud the change to WebBGas to black out the 
salary information.   

Disability Rights Ohio PAIMI PPR comments
January 6, 2020
p. 8

Again, we appreciate the opportunity to comment on this collection of information, and 
believe this new PPR is a big step to a streamlined data collection process that will provide the 
necessary data to show the effectiveness of the PAIMI program to SAMSHA and Congress.  
Please be in touch with me if you have any questions about this letter. 
Best regards,  

Michael Kirkman 
Executive Director 

December 30, 2019
Summer King
Samuel Wagman
SAMHSA Reports Clearance Office
5600 Fishers Lane, Room 14E57B
Rockville, MD 20857
Submitted Electronically VIA Email to: [email protected]
Re: Agency Information Collection Activities: Proposed Collection; Comment
Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King and Mr. Wagman:
Thank you for the opportunity to comment on this proposed collection of information
regarding the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program.
Disability Rights Oregon believes that this iteration of the PAIMI Program Performance
Report (PPR) is an excellent opportunity to further the work in standardizing the PPRs that
we do for all the programs as well as ensure that the data collected is as clear and useful as
possible.
Disability Rights Oregon is the Protection and Advocacy (P&A) agency for Oregon. P&A
agencies are authorized under various federal statutes to provide legal representation and
related advocacy services, and to investigate abuse and neglect of individuals with disabilities
in a variety of settings. These statutes also require yearly PPRs documenting the work,
activity, and outcomes through these various programs.
Yearly, Disability Rights Oregon is required to produce a PPR for the PAIMI program as well
as nine other programs administered by Disability Rights Oregon. These PPRs contain a
wealth of information, including an evaluation of whether the program has met the goals and
priorities developed for the year with input from the community and the individuals that we
serve. However, the data requested in each report is not standardized, which requires us to
spend a large amount of time drafting and creating the PPRs. Given the limited resources
that we have, it would directly benefit people with disabilities if the reports could be
standardized so that these resources could instead be used to provide direct services to
people with disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling your updates to the
PPR on recommendations from the P&A network. Our national association, the National
Disability Rights Network (NDRN) and the P&As have worked during the last several years
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
Page 2
with the Administration on Disability (AOD) to streamline the Protection and Advocacy for
Individuals with Developmental Disabilities (PADD), Protection and Advocacy for Voter
Access (PAVA), Protection and Advocacy for Individuals with Traumatic Brain Injury (PATBI),
and Protection and Advocacy for Assistive Technology (PAAT) PPR reporting processes. The
ultimate goal was to produce one PPR that effectively and efficiently documents the work of
a particular P&A agency while providing AOD and Congress the information they need to
properly evaluate these four P&A programs. This work led to the creation of the One PPR
that demonstrates the outcomes of the P&A agencies and gives AOD and Congress the
information they need to properly evaluate each individual program. The One PPR itself was
designed with the idea that all P&A programs, including the PAIMI program, can use this
concept to ultimately streamline the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud SAMHSA for working with
a number of P&As and NDRN during the last several years to incorporate much of the One
PPR framework in to this new version of the yearly PAIMI PPR. We specifically support the
inclusion of a number of important data points that were taken out of the last version of the
PAIMI PPR, as well adopting the outcomes from the One PPR to standardize data collection
and outcomes across the P&A programs. While we overall support this new version of the
PAIMI PPR there are a couple of suggestions that we would propose SAMSHA consider
before finalizing the new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing Board,
Advisory Council, and Program Staff
We believe the choices for the sex demographic question, nor the two answers, appropriately
reflect the diversity of the Governing Board, Advisory Council, or Program staff. It is not
uncommon for DRO’s Board members, Advisory Council members, or staff, to feel
constrained by the traditional definitions of female and male and that the term “sex” does not
accurately reflect their demographic characteristics. Thus, our fist suggestion is to change the
title to “Gender” rather than “Sex”. Second, we believe the choices should be the following
four: “Male”, “Female”, “Not Listed”, and “Chose Not to Answer”.
Page 3, Section A, #12 – List of Mental Health Professionals on the Advisory
Council
Only including mental health professionals as choices for individuals that serve on the
Advisory Council ignores the other potential categories of individuals that are allowed to
serve on the council that are contained in the PAIMI statute. Section 10805(a)(6)(B) includes
other categories such as attorneys, providers, and individuals receiving or have received
mental health services that are not reflected in this list on Page 3 and should be captured in
the PPR.
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
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Should you want to specifically break out the different types of mental health professionals,
as referenced in the statute, we are concerned that the list of mental health professionals
listed as answers for this question is too narrow for the scope of individuals that may serve on
the PAIMI Advisory Council. As SAMHSA’s own website shows1 the list of mental health
professionals is much broader than the limited list on Page 3. At a minimum an “Other”
category needs to be added as an appropriate answer for other types of mental health
professionals that may serve on the Advisory Council. We strongly suggest that Peer Support
Specialists should be added as a specifically enumerated choice as this important change in
service delivery should be recognized.
Page 4, Section A, #15 – Governing Board Composition
As Disability Rights Oregon’s impact on people with disabilities encompasses more than
individuals with psychiatric disabilities, the governing Board of Disability Rights Oregon is
not constricted to individuals or family members of individuals that have received mental
health services. We agree that it is important to capture the number of individuals or family
members of individuals with disabilities on the governing Board, but to properly reflect the
governing Board’s composition, we believe additional answers should be added to this
question to reflect other individuals with diverse disabilities and family members of these
individuals. For instance, the One PPR contemplates that there is a wider scope of disabilities
on a P&A Board and could be used as an example for the PAIMI PPR. We have pasted that
table down below. We understand that this is written from the perspective of the
Administration on Community Living and the One PR and would need to be adjusted to
reflect that this is the PAIMI PPR.
Board
TOTAL Numbers of Members (non-duplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary Consumers
PAIMI or PAIR or PABSS Other Eligible Secondary
Consumers
Other Members

1

See https://www.samhsa.gov/workforce.
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
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Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the choices for the sex demographic question, nor the
two answers, appropriately reflect the diversity of the people we serve in Oregon.
Additionally, the third answer of “unknown/would not disclose” does not appropriately cover
that set of individuals.
Similar to earlier, our fist suggestion for this section would be to change the title to “Gender
of PAIMI Eligible Individuals Served”. Second, we also believe the choices should be the
following four: “Male”, “Female”, “Not Listed”, and “Chose Not to Answer”.
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI Program Funds
Our concern in this question is in #5 where you ask for the number of individuals with cooccurring mental illness and intellectual and developmental disabilities (I/DD). It is
extremely common in Disability Rights Oregon’s caseload for one individual to identify with
more than one disability. Because of this, we do not see the need or importance for collecting
this specific data point when it comes to evaluating the program. Thus, we would first
suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not
adequately describe the landscape when it comes to co-occurrence. In fact, as a term of art,
co-occurrence typically refers to substance use and mental illness (which is not asked).
Additionally, mental illness can, and often does, co-occur with other disabilities such as
traumatic brain injury and physical disabilities. We do not see the benefit of restricting this
to co-occurrence of mental illness and I/DD. Thus, if you decide to keep the data point, do not
just limit the co-occurring disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial information, it feels
misplaced in the eligibility section. This question would be more useful in describing the
demographics of a program, as co-existence of any other disability is not reflective of the
eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to consider the
outcomes of the One PPR when constructing the outcomes of the new PAIMI PPR so that
they more accurately reflect P&A individual and group advocacy. That said, the instructions
for this section (abuse section instructions are on page 3) do not reflect these updated
outcomes. In particular, both for internal consistency and to provide consistent outcome
information, the outcomes of individual advocacy in Section C of Areas 1 - 5 should match the
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
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End Outcomes of group advocacy in Section 12. The outcomes in Section 12 were specifically
developed to provide information for SAMHSA to use in its reporting to Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize the
intervention strategies between the One PPR and the PAIMI PPR to more accurately reflect
P&A advocacy, but that did not occur in the way this section is currently written. We noticed
that the PAIMI PPR continues to have the “Technical Assistance” option. We believe that this
could be confusing to staff to have different intervention strategies across programs. This is
magnified when you consider that the One PPR defines Technical Assistance as a non-client
directed activity. Cases that would be PAIMI Technical Assistance could easily fall under
limited Advocacy and eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for our staff.
They are tasked to solve issues at the lowest level, and often this includes negotiating to
obtain good outcomes for their clients. Limited Advocacy could describe this strategy, but it
seems richer to add the additional category, as it is such a common way that our staff do their
work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is critically important
that the definitions of these strategies be the same between the two PPRs. Because if they
are not, then the increase in efficiency through harmonized PPRs will be lost. Thus, we have
included below the definitions from the One PPR to be used in the instructions on this
question.
Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to as Short Term
Assistance, is a level of intervention that can include advice and counseling, brief research,
or letter writing to the client to summarize assistance given. Advice and counseling
assistance includes informing a client of their rights; coaching the client in self advocacy;
reviewing information; counseling a client on actions one may take; or assisting the client
in preparing letters or documents and/or the dissemination of information and materials
related to the disability rights issue raised by the client. It includes providing information
sheets and other materials.
Limited Advocacy: Limited Advocacy is a level of intervention that includes the provision
of a discrete task to a client or a discrete contact on behalf of a client with a third party.
Such activities upon completion require no further or ongoing actions, either formal or
informal. Limited Advocacy can include communications by letter, telephone or other
means to a third party; preparation of a simple legal document; or assisting a client in the
preparation of documents that are submitted by the client pro se to a third party.
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
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Administrative Remedies: An Administrative Remedy is any non-judicial complaint
resolution process provided by government agencies, boards, commissions, or other
designated adjudicators, exercising decision making authority delegated by statute.
Administrative Remedy processes are generally simpler, less formal, and less technical than
the judicial process.
Negotiation: Negotiation is a problem-solving process in which two or more people
voluntarily discuss their differences and attempt to reach a joint decision on their common
concerns.
Mediation/Alternative Dispute Resolution: Mediation is an alternative dispute
resolution process using the services of an independent third party to help settle
differences or disputes between two or more individuals.
Litigation: Litigation is any lawsuit or other resort to the courts to determine a legal
question or matter. Litigation involves many complex legal issues which require not only a
knowledge of the law that governs the dispute, but also, the laws governing the procedures
to be followed in order to properly litigate a claim. There are rules governing who may file
a claim, where it must be filed, when it must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMI-eligible
individuals
Disability Rights Oregon suggests that the definitions for group advocacy interventions be
consistent with those in the One-PPR which again more accurately reflect the work of the
P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of groups of
people with disabilities pursued through the interventions of systemic litigation,
legislative and regulatory advocacy and systemic advocacy (non-litigious and nonlegislative). It is concerted action to reform the policies or mode of operations of a system
of services such as the disabilities service system or the policies and practices of private
actors. Report the intervention strategy (abuse and neglect investigation; systemic
litigation; educating
policymakers; and other systemic advocacy) used in each
case/project. You may select more than one per project.
Abuse and Neglect Investigation: An investigation is a systematic and thorough
examination of information, records, evidence and circumstances surrounding an allegation
of abuse and neglect. Investigations are distinct from advocacy and require a significant

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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
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allocation of time and resources including such activities as interviewing witnesses,
gathering evidence and generating a written report, which may or may not be made public.
Systemic Litigation: Systemic litigation is a concerted action to reform the policies or mode
of operations of a system of services. It attempts to address a systemic issue raised by many
individuals, through class action litigation, multi-plaintiff litigation, or in some cases
individual litigation when the relief sought has the potential of affecting many people with
disabilities.
Educating Policy Makers: A critical strategy used to achieve systems change. Policy-makers
may include individuals in both the executive and legislative branches of government who
make or interpret policies (legislation, regulations, rules or practices) that impact the lives
of people with disabilities. Our advocacy efforts might be directed at the local, state, or
federal level. Educating these individual makes them aware of how their actions may impact
people with disabilities. Information reported should only include work done in accordance
with the limit on federal funding.
Other Systemic Advocacy: Other Systems Advocacy refers to concerted action by the P&A
agency to promote and effectuate changes in the policies, rules, and laws that impact
groups of people with disabilities, and to remove the barriers that prevent or impede
them from leading full, productive lives in the community that does fit elsewhere in the
form Systems advocacy typically addresses the establishment, support, improvement, or
expansion of (1) programs that provide services or benefits to persons with disabilities,
and (2) the legal rights, protections, and entitlements of persons with disabilities; and
may involve opposition to efforts to weaken, reduce or eliminate existing services or rights.
Monitoring: Monitoring includes activities in which a P&A evaluates compliance issues and
quality of service by providers of services, supports and other assistance. Monitoring may
involve using the a P&A’s access authority to visit and in other ways seek information from
institutional or community settings including public and private facilities where people with
disabilities live, work and go to school by a) conducting face-to-face interviews with
individuals with disabilities in those settings; b) conducting at least one face-to-face
interview with a staff member in those settings; 3) observing and evaluating the physical
conditions of the setting; and 4) accessing and reviewing records, when appropriate, in
accordance with applicable federal and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a segregated
setting to a community-based setting to achieve integration and independence. However,
there is plenty of Disability Rights Oregon’s PAIMI work that is done to ensure that an
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DRO Letter to SAMHSA Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
December 30, 2019
Page 8
individual receives community-based services so that the individual can remain living in the
community (such as their own home) and be integrated and independent. Thus, we believe
that “a” should specifically reference maintaining already existing community integration.
So, for example, “a” could read as this: “PAIMI-eligible individuals who are provided with
appropriate community-based services resulting in, or maintaining, community integration
and independence;”.
Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for Disability
Rights Oregon’s individual PAIMI staff. While we understand that it is beneficial to
understand the higher salaries, these are all contained on our 990 filings. We are generally
hesitant to post lower level staff salaries and have these become common knowledge in the
organization. I believe aggregate salary information would accomplish the needs of
SAMHSA, while also maintaining the integrity of the lower level data. We do applaud the
change to WebBGas to black out the salary information.
Conclusion
Again, we appreciate the opportunity to comment on this collection of information and
believe this new PPR is one big step to a streamlined data collection process that will provide
the necessary data to show the effectiveness of the PAIMI program to SAMSHA and
Congress. Please be in touch with me if you have any questions about this letter by calling
me at (503) 243-2081 or by emailing me at [email protected].
Sincerely,

Jake Cornett
Executive Director
Disability Rights Oregon

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Disability Rights Pennsylvania
301 Chestnut Street, Suite 300
Harrisburg, PA 17101
(800) 692-7443 (Voice)
(877) 375-7139 (TDD)
www.disabilityrightspa.org
December 30, 2019

Summer King
SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, Maryland 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King:
Thank you for the opportunity to comment on this proposed collection of
information regarding the Protection and Advocacy for Individuals with
Mental Illness (PAIMI) program. Disability Rights Pennsylvania believes
that this iteration of the PAIMI Program Performance Report (PPR) is an
excellent opportunity to further the work in standardizing the PPRs that we
do for all the programs as well as ensure that the data collected is as clear
and useful as possible.
Yearly, Disability Rights Pennsylvania is required to produce a Program
Performance Report (PPR) for the PAIMI program as well as five (5) other
programs administered by Disability Rights Pennsylvania. Included in the 5
is the new One PPR for the Administration on Disabilities that includes our
Traumatic Brain Injury, Assistive Technology, Help America Vote Act, and
Developmental Disabilities grant programs. These PPRs contain a wealth
of information, including an evaluation of whether the program has met the
goals and priorities developed for the year with input from the community
and the individuals that we serve. However, the data requested in each
Protecting and advancing the rights of people with disabilities

report is not standardized, which requires us to spend a large amount of
time reviewing data, drafting and creating the PPRs. Given the limited
resources that we have, it would directly benefit people with disabilities if
the reports could be standardized so that these resources could instead be
used to provide direct services to people with disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling
your updates to the PPR on recommendations from the P&A network. Our
national association, the National Disability Rights Network (NDRN) and
the P&As have worked over the last couple of years with the Administration
on Disability (AOD) to streamline the Protection and Advocacy for
Individuals with Developmental Disabilities (PADD), Protection and
Advocacy for Voter Access (PAVA), Protection and Advocacy for
Individuals with Traumatic Brain Injury (PATBI), and Protection and
Advocacy for Assistive Technology (PAAT) PPR reporting processes. The
goal was to produce one PPR that effectively and efficiently documents the
work of a particular P&A agency while providing AOD and Congress the
information they need to properly evaluate these four P&A programs. This
work led to the creation of the One PPR that demonstrates the outcomes of
the P&A agencies and gives AOD and Congress the information they need
to properly evaluate each individual program. The One PPR itself was
designed with the idea that all P&A programs, including the PAIMI program,
can use this concept to ultimately streamline the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud
SAMHSA for working with several P&As and NDRN over the last couple of
years to incorporate much of the One PPR framework in to this new version
of the yearly PAIMI PPR. We specifically support the inclusion of a number
of important data points that were taken out of the last version of the PAIMI
PPR, as well adopting the outcomes from the One PPR to standardize data
collection and outcomes across the P&A programs. While we overall
support this new version of the PAIMI PPR there are a couple of
suggestions that we would propose SAMSHA consider before finalizing the
new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI
Governing Board, Advisory Council, and Program Staff
2

We believe the choices for the sex demographic question, nor the two
answers, appropriately reflect the time in which we live. It is not uncommon
for our board or advisory council members, or staff, to feel constrained by
the traditional definitions of female and male. Additionally, the use of the
term “sex” connotes a biological definition, while to truly grasp the overall
experience of a person, the individual‘s true identity requires a different
term like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than
“Sex”. Second, we believe the choices should be the following four: Male,
Female, Not Listed, and Chose Not To Answer.
Page 3, Section A, #12 – List of Mental Health Professionals on the
Advisory Council
Only including mental health professionals as choices for individuals that
serve on the advisory council ignores the other potential categories of
individuals that are allowed to serve on the council that are contained in the
PAIMI statute. Section 10805(a) (6) (B) includes other categories like
attorneys, providers, individuals receiving or have received mental health
services, etc. that are not reflected in this list on Page 3 and should be
captured in the PPR somehow.
Should you want to specifically break out the different types of mental
health professionals, as referenced in the statute, we are concerned that
the list of mental health professionals listed as answers for this question is
too narrow for the scope of individuals that may serve on the PAIMI
Advisory Council. As SAMHSA’s own website shows
(https://www.samhsa.gov/workforce) the list of mental health professionals
is much broader than the limited list on Page 3. At a minimum an “Other”
category needs to be added as an appropriate answer for other types of
mental health professionals that may serve on the advisory council. We
strongly suggest that Peer Support Specialists should be added as a
specifically enumerated choice as this important change in service delivery
should be recognized.
Page 4, Section A, #15 – Governing Board Composition
3

As Disability Rights Pennsylvania’s impact on people with disabilities
encompasses more than individuals with psychiatric disabilities, the
governing board of Disability Rights Pennsylvania is not constricted to
individuals or family members of individuals that have received mental
health services. We agree that it is important to capture the number of
individuals or family members of individuals with disabilities on the
governing board, but to properly reflect the governing board’s composition,
we believe additional answers should be added to this question to reflect
other individuals with diverse disabilities and family members of these
individuals. For instance, the One PPR contemplates that there is a wider
scope of disabilities on a P&A board and could be used as an example for
the PAIMI PPR. We have pasted that table down below. We understand
that this is written from the perspective of the Administration on Community
Living and the One PR and would need to be adjusted to reflect that this is
the PAIMI PPR.

TOTAL Numbers of Members (nonduplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary
Consumers
PAIMI or PAIR or PABSS Other Eligible
Secondary Consumers
Other Members

Board

Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not
appropriately reflect the time in which we live nor truly grasp the overall
experience of a person. Additionally, the third answer of “unknown/would
not disclose” does not appropriately cover that set of individuals.
4

Like earlier, our fist suggestion for this section would be to change the title
to “Gender of PAIMI Eligible Individuals Served”. Second, we also again
believe the choices should be the following four: Male, Female, Not Listed,
and Chose Not To Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI
Program Funds
Our concern in this question is in #5 where you ask for the number of
individuals with co-occurring mental illness and intellectual and
developmental disabilities (I/DD). It is extremely common in Disability
Rights Pennsylvania’s caseload for one individual to identify with more than
one disability. Because of this, we do not see the need or importance for
collecting this specific data point when it comes to evaluating the program.
Thus, we would first suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD
does not adequately describe the landscape when it comes to cooccurrence. In fact, as a term of art, co-occurrence typically refers to
substance use and mental illness (which is not asked). Additionally, mental
illness can, and often does, co-occur with other disabilities such as
traumatic brain injury and physical disabilities. We do not see the benefit of
restricting this to co-occurrence of mental illness and I/DD. Thus, if you
decide to keep the data point, do not just limit the co-occurring disability to
I/DD.
Finally, while the question, if expanded, does potentially yield beneficial
information, it feels misplaced in the eligibility section. This question would
be more useful in describing the demographics of a program, as coexistence of any other disability is not reflective of the eligibility of that
person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible Individuals
As mentioned in the introduction, we appreciate the willingness of
SAMHSA to consider the outcomes of the One PPR when constructing the
outcomes of the new PAIMI PPR so that they more accurately reflect P&A
individual and group advocacy. That said, the instructions for this section
(abuse section instructions are on page 3) do not reflect these updated
5

outcomes. In particular, both for internal consistency and to provide
consistent outcome information, the outcomes of individual advocacy in
Section C of Areas 1 - 5 should match the End Outcomes of group
advocacy in Section 12. The outcomes in Section 12 were specifically
developed to provide information for SAMHSA to use in its reporting to
Congress.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to
harmonize the intervention strategies between the One PPR and the PAIMI
PPR to more accurately reflect P&A advocacy, but that did not occur in the
way this section is currently written. We noticed that the PAIMI PPR
continues to have the “Technical Assistance” option. We believe that this
could be confusing to staff to have different intervention strategies across
programs. This is magnified when you consider that the One PPR defines
Technical Assistance as a non-client directed activity. Cases that would be
PAIMI Technical Assistance could easily fall under limited Advocacy and
eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important
strategy for our staff. They are tasked to solve issues at the lowest level,
and often this includes negotiating to obtain good outcomes for their clients.
Limited Advocacy could describe this strategy, but it seems richer to add
the additional category, as it is such a common way that our staff do their
work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is
critically important that the definitions of these strategies be the same
between the two PPRs. Because if they are not, then the increase in
efficiency through harmonized PPRs will be lost. Thus, we have included
below the definitions from the One PPR to be used in the instructions on
this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly
referred to as Short Term Assistance, is a level of intervention that can
include advice and counseling, brief research, or letter writing to the client
to summarize assistance given. Advice and counseling assistance
include informing a client of their rights; coaching the client in self6

advocacy; reviewing information; counseling a client on actions one may
take; or assisting the client in preparing letters or documents and/or the
dissemination of information and materials related to the disability rights
issue raised by the client. It includes providing information sheets and
other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that
includes the provision of a discrete task to a client or a discrete contact on
behalf of a client with a third party. Such activities upon completion require
no further or ongoing actions, either formal or informal. Limited Advocacy
can include communications by letter, telephone or other means to a third
party; preparation of a simple legal document; or assisting a client in the
preparation of documents that are submitted by the client pro se to a third
party.
3. Administrative Remedies: An Administrative Remedy is any nonjudicial complaint resolution process provided by government agencies,
boards, commissions, or other designated adjudicators, exercising decision
making authority delegated by statute. Administrative Remedy processes
are generally simpler, less formal, and less technical than the judicial
process.
4. Negotiation: Negotiation is a problem-solving process in which two or
more people voluntarily discuss their differences and attempt to reach a
joint decision on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative
dispute resolution process using the services of an independent third party
to help settle differences or disputes between two or more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to
determine a legal question or matter. Litigation involves many complex
legal issues which require not only a knowledge of the law that governs the
dispute, but also, the laws governing the procedures to be followed in order
to properly litigate a claim. There are rules governing who may file a claim,
where it must be filed, when it must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of
PAIMI-eligible individuals
7

Disability Rights Pennsylvania suggests that the definitions for group
advocacy interventions be consistent with those in the One-PPR which
again more accurately reflect the work of the P&As. These definitions
follow.
Group Advocacy Services: Group advocacy services include work on
behalf of groups of people with disabilities pursued through the
interventions of systemic litigation, legislative and regulatory advocacy and
systemic advocacy (non-litigious and non-legislative). It is concerted action
to reform the policies or mode of operations of a system of services such
as the disabilities service system or the policies and practices of private
actors. Report the intervention strategy (abuse and neglect investigation;
systemic litigation; educating policymakers; and other systemic advocacy)
used in each case/project. You may select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and
thorough examination of information, records, evidence and circumstances
surrounding an allegation of abuse and neglect. Investigations are distinct
from advocacy and require a significant allocation of time and resources
including such activities as interviewing witnesses, gathering evidence and
generating a written report, which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the
policies or mode of operations of a system of services. It attempts to
address a systemic issue raised by many individuals, through class action
litigation, multi-plaintiff litigation, or in some cases individual litigation when
the relief sought has the potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems
change. Policy-makers may include individuals in both the executive and
legislative branches of government who make or interpret policies
(legislation, regulations, rules or practices) that impact the lives of people
with disabilities. Our advocacy efforts might be directed at the local, state,
or federal level. Educating these individual makes them aware of how their
actions may impact people with
disabilities. Information reported should only include work done in
accordance with the limit on federal funding.

8

Other Systemic Advocacy - Other Systems Advocacy refers to concerted
action by the P&A agency to promote and effectuate changes in the
policies, rules, and laws that impact groups of people with disabilities, and
to remove the barriers that prevent or impede them from leading full,
productive lives in the community that does fit elsewhere in the form
Systems advocacy typically addresses the establishment, support,
improvement, or expansion of (1) programs that provide services or
benefits to persons with disabilities, and (2) the legal rights, protections,
and entitlements of persons with disabilities; and may involve opposition
to efforts to weaken, reduce or eliminate existing services or rights.
Monitoring - includes activities in which a P&A evaluates compliance
issues and quality of service by providers of services, supports and other
assistance. Monitoring may involve using the a P&A’s access authority to
visit and in other ways seek information from institutional or community
settings including public and private facilities where people with disabilities
live, work and go to school by a) conducting face-to-face interviews with
individuals with disabilities in those settings; b) conducting at least one
face-to-face interview with a staff member in those settings; 3) observing
and evaluating the physical conditions of the setting; and 4) accessing and
reviewing records, when appropriate, in accordance with applicable federal
and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move
from a segregated setting to a community based setting to achieve
integration and independence. However, there is plenty of Disability Rights
Pennsylvania PAIMI work that is done to ensure that an individual receives
community-based services so that the individual can remain living in the
community (like their own home) and be integrated and independent.
Thus, we believe that “a” should specifically reference maintaining already
existing community integration. So, for example, “a” could read as this:
PAIMI-eligible individuals who are provided with appropriate communitybased services resulting in, or maintaining, community integration and
independence;

9

Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries
for Disability Rights Pennsylvania individual PAIMI staff. While we
understand that it is beneficial to understand the higher salaries, these are
all contained on our 990 filings. We are generally hesitant to post lower
level staff salaries and have this information common knowledge in the
organization. It seems as though aggregate salary information would
accomplish the needs of SAMHSA, while also maintaining the integrity of
the lower level data. We do applaud the change to WebBGas to black out
the salary information.
Again, we appreciate the opportunity to comment on this collection of
information, and believe this new PPR is one big step to a streamlined data
collection process that will provide the necessary data to show the
effectiveness of the PAIMI program to SAMSHA and Congress. Please be
in touch with me at [email protected] or at 717-236-8110
x302 if you have any questions about this letter.
Sincerely,

Peri Jude Radecic
Chief Executive Officer

10

2222 West Braker Lane
Austin, Texas 78758
MAIN OFFICE 512.454.4816
TOLL-FREE 800.315.3876
FAX 512.454.3999

Samuel Wagman
National Disability Rights Network
820 First Street, NE
Suite 740
Washington, DC 20002
RE: Agency Information Collection Activities: Proposed Collection Comment Request 84 Fed. Reg.
59836
Jan. 6, 2020
DRTx appreciates the opportunity to provide comment on the proposed collection activities for the
PAIMI PPR. Specific recommendations are in bold italics.
Page 3.
11.

Demographic Composition of Board, PAC and Staff

Race: DRTx recommends retaining the option of unknown.
Sex: DRTx supports the recommendation from NDRN to add an option of unknown or not listed
as well as adding an option of chose not to answer.
12.
Number of Mental Health Professionals on the Advisory Council It is disturbing that the
proposed collection of information focuses exclusively on mental health professionals and ignores the
other categories of individuals mandated by the PAIMI statute to serve on the PAIMI Advisory Council,
particularly individuals who are receiving services as well as family members. The purpose of the PAC is
to ensure the PAIMI program is advised by individuals who are recipients of services and their support
systems. DRTx recommends that the current categories be retained and reflected for the PAC not
just the Board. DRTx supports the NDRN recommendation to add a category for peer support
specialists.
Page 5 #1. Age of PAIMI-eligible Individuals Served
DRTx recommends that unknown be added. That is an infrequent but sometimes occurs when in
collaboration with other entities, the P&A is asked to sign on to an amicus brief for an individual who is
not specifically a DRTx client.
DRTx supports the addition of race unknown.
Page 6 #4. PAIMI-eligible Individuals Served with PAIMI funds
The revision adds the collection of data related to individuals with more than one intervention during
the reporting year. Typically DRTx uses the most intense level of intervention in each case rather than
1

listing each intervention. DRTx recommends reporting the use of the most intense level of
intervention instead of each intervention.
The revision adds the collection of information specific to individuals with IDD. DRTx supports the
comments submitted by NDRN. With the PAIMI population, the co-occurrence is more often
substance use than IDD. Many if not most individuals served by DRTx have multiple diagnoses. DRTx
determines eligibility by the primary disability and does not list every diagnoses for each individual. We
do not understand the focus on Individuals with IDD or understand the need for collecting this
specific data point and recommend not adding this data element.
Page 7 Living Arrangements of PAIMI-eligible Individuals at Intake
DRTx supports the changes made to the combined Public and Private general hospitals including
emergency rooms; jails; and Independent or parental or other family home, deleting the distinction of
within or after 90 days.
Section C (Instructions) Complaints/Problems of PAIMI-eligible individuals
NDRN is familiar with the One PPR and indicates the instructions for this section do not reflect the
updated outcomes for the One PPR. DRTx supports using the updated outcome for the One PPR.
Page 8 Areas of Alleged Abuse
DRTx supports the change to b. Inappropriate or excessive restraint and seclusion which combines
physical, chemical, mechanical and seclusion.
DRTx supports the change to g. physical assault and h. sexual assault which deletes the reference to a
serious injury (often the incident does not result in an injury but remains an important data collection
point). DRTx also supports the deletion of the reference to alleged perpetrator. (FYI, if the alleged
perpetrator was another person receiving services, the allegation would be investigated as potential
neglect by the provider not as abuse.
The category of other limits the data to less than 1% of abuse complaints total. This has been deleted
for neglect and rights categories. DRTx recommends deleting the 1% limit just as it has been
deleted for neglect and rights.
Abuse Disposition – DRTx recommends adding the following outcomes:
•

•

Lost contact (which occurs with individuals with a mental illness who are also involved
with the criminal justice system and therefore may move from an institution to another
entity. It cannot be assumed that the individual no longer need services and therefore
does not fit in another category);
Outcome unknown (which may occur when the P&A provides only short term assistance,
or technical assistance); and

2

•

Lack of resources (which may occur upon staffing or after an expanded intake
investigation indicates a much more involved case for which resources are not available,
or when a vacancy occurs in staffing patterns).

Page 9 Area of Alleged Neglect
DRTx supports the revision which moves the categories of a. Failure to provide necessary or appropriate
medical (other than psychiatric) treatment and b. Failure to provide necessary or appropriate mental
health treatment including access to prescribed medication, from abuse to neglect which is more
appropriate!
Page 10 - Neglect Complaints Disposition:
DRTx recommends adding the following outcomes:
•

•
•

Lost contact (which occurs with individuals with a mental illness who are also involved
with the criminal justice system and therefore may move from an institution to another
entity. It cannot be assumed that the individual no longer need services and therefore
does not fit in another category);
Outcome unknown (which may occur when the P&A provides only short term assistance,
or technical assistance); and
Lack of resources (which may occur upon staffing or after an expanded intake
investigation indicates a much more involved case for which resources are not available,
or when a vacancy occurs in staffing patterns).

Page 10 5. Areas of Alleged Rights Violations
DRTx recommends deleting b. Failure to provide written discharge plan which is a duplicate of
category d. under neglect.
DRTx recommends adding Failure to provide access to personal property. This has become more
of an issue as individuals on a forensic commitment remain for significantly longer periods of time.
Personal property includes money, clothing, food, electronics and is not captured elsewhere.
Please note that e. The right to refuse to take prescribed medication is more specific but can be
captured under d, right to refuse treatment;
DRTx supports the addition of: q housing discrimination; r the denial of access to administrative or
judicial process (similar to h); s failure to provide educational services in the least restricted
environment; t the denial of access to community based rehabilitation services and/or treatment; u the
denial of access to transportation and v. employment discrimination.
Page 12 Rights Violations Disposition
DRTx recommends adding the following outcomes:

3

•

•
•

Lost contact (which occurs with individuals with a mental illness who are also involved
with the criminal justice system and therefore may move from an institution to another
entity. It cannot be assumed that the individual no longer need services and therefore
does not fit in another category);
Outcome unknown (which may occur when the P&A provides only short term assistance,
or technical assistance); and
Lack of resources (which may occur upon staffing or after an expanded intake
investigation indicates a much more involved case for which resources are not available,
or when a vacancy occurs in staffing patterns).

Page 12 7. Reasons for Closing Individual Advocacy Case File.
DRTx recommends adding:
•

•

lost contact (which occurs with individuals in the forensic system who may move from an
institution to another entity but it cannot be assumed that they no longer need services),
and
lack of resources( which infrequently occurs when investigations indicate a much more
involved case for which resources are not available to pursue).

Pg 12 # 8. Intervention Strategies
DRTx recommends adding a key to operationalize the outcomes which are not the same as the
disposition. The distinction between self-advocacy assistance, limited advocacy and what has been
short term assistance is unclear. We recommend clarification of the use of the terms and preferably
using short term assistance or limited advocacy.
DRTx recommends that negotiation be retained and included along with mediation.
DRTx recommends retaining abuse/neglect investigations as an intervention. A significant
percentage of work done in the PAIMI program involves performing or reviewing investigations of
allegations of abuse or neglect which enable us to address individual cases but also to monitor the
quality of investigations performed by other entities.
Page 13 #9 Death Investigation Activities
DRTx recommends retaining the reference to and expectation that the state report to the P&A
deaths of individuals in their care.
b) All death investigations conducted involving PAIMI-eligible individuals related to the following:
c. number of deaths investigated not related to incidents of S&R
d death investigations with a finding or determination
e provision in policy added or prevented.
4

c, d, and e are listed together in one cell which will be difficult to respond to accurately.
d. it is not obvious what is trying to be addressed here. It would be rare to have an investigation
with no finding or determination. If it is kept it should listed as a separate category but likely
will duplicate the information in c, number of deaths investigated not related to restraint or
seclusion.
e. would be more appropriately listed as a disposition.
Pg 24 Section H Statement of Priorities (Goals)
C. Results narratives of P&A activities and accomplishments related to above priority.
Sections A&C are repetitive. Narratives may be duplicative for case level work.
DRTx appreciates your time and consideration of our comments. If you have questions or require
additional information, please contact Aaryce Hayes, Policy Specialist, Disability Rights Texas.
[email protected].

5

January 6, 2020
Mr. Samuel Wagman
Substance Abuse and Mental Health Services Administration (SAMHSA)
5600 Fishers Lane
Rockville, Maryland 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Mr. Wagman:
Thank you for the opportunity to comment on this proposed collection of
information regarding the Protection and Advocacy for Individuals with Mental
Illness (PAIMI) program. The National Disability Rights Network (NDRN) and the
57 Protection and Advocacy (P&A) agencies we represent believe that this
iteration of the PAIMI Program Performance Report (PPR) is an excellent
opportunity to further the work in standardizing the PPRs that the P&As do for all
their programs as well as ensure that the data collected is as clear and useful as
possible.
Yearly, P&A agencies are required to produce a Program Performance Report
(PPR) for the PAIMI program as well as up to 7 other programs administered by
P&A agencies. These PPRs contain a wealth of information, including an
evaluation of whether the program has met the goals and priorities developed for
the year with input from the community and the individuals that the P&A agency
serves. However, the data requested in each report is not standardized, which
requires the P&A agencies to spend a large amount of time drafting and creating
the PPRs. Given the limited resources that the P&A agencies have, it would
directly benefit people with disabilities if the reports could be standardized so that
these resources could instead be used to provide direct services to people with
disabilities.
That is why NDRN and the P&A agencies appreciate the efforts of SAMHSA to
consider modeling your updates to the PPR on recommendations from the P&A
network. NDRN and the P&As worked over the last couple of years with the
Administration on Disability (AOD) to streamline the Protection and Advocacy for
820 FIRST NE, SUITE 740  W ASHINGTON, DC 20002-3560
TEL: 202.408.9514  FAX: 202.408.9520  TTY: 202.408.9521
WEBSITE: WWW.NDRN.ORG  E-MAIL: [email protected]

Individuals with Developmental Disabilities (PADD), Protection and Advocacy for
Voter Access (PAVA), Protection and Advocacy for Individuals with Traumatic
Brain Injury (PATBI), and Protection and Advocacy for Assistive Technology
(PAAT) PPR reporting processes. Our ultimate goal was to produce one PPR
that effectively and efficiently documents the work of a particular P&A agency
while providing AOD and Congress the information they need to properly
evaluate these four P&A programs. This work led to the creation of the One PPR
that demonstrates the outcomes of the P&A agencies and gives AOD and
Congress the information they need to properly evaluate each individual
program. The One PPR itself was designed with the idea that all P&A programs,
including the PAIMI program, can use this concept to ultimately streamline the
existing reports.
Use of this One PPR by ACL started with Fiscal Year 2019. We applaud
SAMHSA for working with NDRN and a number of P&As over the last couple of
years to incorporate much of the One PPR framework in to this new version of
the yearly PAIMI PPR. We specifically support the inclusion of a number of
important data points that were taken out of the last version of the PAIMI PPR, as
well adopting the outcomes from the One PPR to standardize data collection and
outcomes across the P&A programs. While we support this new version of the
PAIMI PPR overall, there are a couple of suggestions that we would propose
SAMHSA consider before finalizing the new PAIMI PPR.
Page 3, Section A, #11 – Demographic Composition of PAIMI Governing
Board, Advisory Council, and Program Staff
We do not believe the choices for the sex demographic question, nor the two
answers, appropriately reflect the time in which we live. It is not uncommon for
P&A board or advisory council members, or staff, to feel constrained by the
traditional definitions of female and male. Additionally, the use of the term “sex”
connotes a biological definition, while to truly grasp the overall experience of a
person, the individual‘s true identity requires a different term like gender.
Thus, our first suggestion is to change the title to “Gender” rather than “Sex.”
Second, we believe the choices should be the following four: Male, Female, Nonbinary, and Chose Not To Answer.
Additionally, the “Race” Category is not consistent with the Race options under
A. 17 breaking down program staff demographics. We recommend adding
“Native Hawaiian/Pacific Islander” and “Unknown” to the list of Races to make it
consistent with the list of Races in A. 17. Finally, ethnicity should also
consistently have an “Unknown” option as well.

Page 3, Section A, #12 – List of Mental Health Professionals on the
Advisory Council
Only including mental health professionals as choices for individuals that serve
on the advisory council ignores the other potential categories of individuals that
are allowed to serve on the council that are contained in the PAIMI statute.
Section 10805(a)(6) (B) includes other categories like attorneys, providers,
individuals receiving or have received mental health services, etc. that are not
reflected in this list on Page 3 and should be captured in the PPR somehow.
Should you want to specifically break out the different types of mental health
professionals, as referenced in the statute, we are concerned that the list of
mental health professionals listed as answers for this question is too narrow for
the scope of individuals that may serve on the PAIMI Advisory Council. As
SAMHSA’s own website shows (https://www.samhsa.gov/workforce) the list of
mental health professionals is much broader than the limited list on Page 3. We
suggest that the categories of the PAIMI statute be added to the category.
Further, we strongly suggest that Peer Support Specialists should be added as a
specifically enumerated choice as this important change in service delivery
should be recognized. At a minimum an “Other” category needs to be added as
an appropriate answer for other types of mental health professionals that may
serve on the advisory council.
Page 4, Section A, #15 – Governing Board Composition
As the P&A agencies’ impact on people with disabilities encompasses more than
individuals with psychiatric disabilities, the governing board of a P&A is not
limited to individuals or family members of individuals that have received mental
health services. We agree that it is important to capture the number of
individuals or family members of individuals with disabilities on the governing
board, but to properly reflect the governing board’s composition, we believe
additional options should be added to this question to reflect other individuals
with diverse disabilities and family members of these individuals. For instance,
the One PPR contemplates that there is a wider scope of disabilities on a P&A
board and could be used as an example for the PAIMI PPR. We have pasted
that table down below. We understand that this is written from the ACL
perspective and would need to be adjusted to reflect that this is the PAIMI PPR.

TOTAL Numbers of Members (nonduplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers

Board

PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary
Consumers
PAIMI or PAIR or PABSS Other Eligible
Secondary Consumers
Other Members
We suggest that the PAIMI PPR include the following: PAIMI eligible individuals,
Family members of PAIMI eligible individuals, Individuals with other disabilities,
Family members of individuals with other disabilities, and Other members.
Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately
reflect the time in which we live nor truly grasp the overall experience of a
person. Additionally, the third answer of “unknown/would not disclose” does not
appropriately cover that set of individuals.
Like earlier, our preferred suggestion for this section would be to change the title
to “Gender of PAIMI Eligible Individuals Served”. We also again believe the
choices should be the following four: Male, Female, Non-binary, and Chose Not
To Answer
Page 6, Section B, #4 - PAIMI-eligible Individuals Served with PAIMI
Program Funds
Our concern in this question is in #5 where you ask for the number of individuals
with co-occurring mental illness and intellectual and developmental disabilities
(I/DD). It is extremely common in a P&A caseload for one individual to identify
with more than one disability. Because of this, we do not see the need or
importance for collecting this specific data point when it comes to evaluating the
program. Thus, we would first suggest dropping this data point.
However, if you feel this information is important, then limiting it to I/DD does not
adequately describe the landscape when it comes to co-occurrence. In fact, as a
term of art, co-occurrence typically refers to substance use and mental illness
(which is not asked). Additionally, mental illness can, and often does, co-occur
with other disabilities such as traumatic brain injury and physical disabilities. We
do not see the benefit of restricting this to co-occurrence of mental illness and
I/DD. Thus, if you decide to keep the data point, do not just limit the co-occurring
disability to I/DD.
Finally, while the question, if expanded, does potentially yield beneficial
information, it feels misplaced in the eligibility section. This question would be

more useful in describing the demographics of a program, as co-existence of any
other disability is not reflective of the eligibility of that person.
Section C (Instructions): Complaints/Problems of PAIMI-eligible
Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to
consider the outcomes of the One PPR when constructing the outcomes of the
new PAIMI PPR so that they more accurately reflect P&A individual and group
advocacy. That said, the instructions for this section (abuse section instructions
are on page 3) do not reflect these updated outcomes. In particular, both for
internal consistency and to provide consistent outcome information, the
outcomes of individual advocacy in Section C of Areas 1 - 5 should match the
End Outcomes of group advocacy in Section 12. The outcomes in Section 12
were specifically developed to provide information for SAMHSA to use in its
reporting to Congress.
Page 11, Section C, #5, s - Areas of Alleged Rights Violations
We appreciate the adding back of an education category in the Alleged Rights
Violations section, but we are concerned that the language as written in “s” is too
restricting and will cause confusion. We suggest that “s” read as follows, “Failure
to provide educational services for PAIMI-eligible individuals”.
P&As perform advocacy concerning educational services for PAIMI eligible
individuals that is beyond just that the educational services the individual is
receiving are provided in the least restrictive environment. Ensuring PAIMI
eligible individuals have access to transition services is one such example that is
beyond services in a least restrictive environment. While, this example could
potentially fit into another category under alleged rights violations, it is cleaner
and smoother to just modify the description of “s” so that it is broad and
encompasses all educational advocacy work of the P&As under the PAIMI
program.
Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMHSA’s willingness to harmonize
the intervention strategies between the One PPR and the PAIMI PPR to more
accurately reflect P&A advocacy, but that did not occur in the way this section is
currently written. We noticed that the PAIMI PPR continues to have the
“Technical Assistance” option. We believe that this is confusing to P&A staff to
have different intervention strategies across programs. This is magnified when
you consider that the ONE PPR defines Technical Assistance as a non-client

directed activity. Cases that would be PAIMI Technical Assistance could easily
fall under limited Advocacy and eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for
P&A staff. They are tasked to solve issues at the lowest level, and often this
includes negotiating with staff to obtain good outcomes for their clients. Limited
Advocacy could describe this strategy, but it seems richer to add the additional
category, as it is such a common way that staff do their work.
Even if the list is the same between the One PPR and the PAIMI PPR, it is
critically important that the definitions of these strategies be the same between
the two PPRs. Because if they are not, then the increase in efficiency through
harmonized PPRs will be lost. Thus, we have included below the definitions from
the One PPR to be used in the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to
as Short Term Assistance, is a level of intervention that can include advice and
counseling, brief research, or letter writing to the client to summarize assistance
given. Advice and counseling assistance includes informing a client of their
rights; coaching the client in self advocacy; reviewing information; counseling a
client on actions one may take; or assisting the client in preparing letters or
documents and/or the dissemination of information and materials related to the
disability rights issue raised by the client. It includes providing information sheets
and other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes
the provision of a discrete task to a client or a discrete contact on behalf of a
client with a third party. Such activities upon completion require no further or
ongoing actions, either formal or informal. Limited Advocacy can include
communications by letter, telephone or other means to a third party; preparation
of a simple legal document; or assisting a client in the preparation of documents
that are submitted by the client pro se to a third party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial
complaint resolution process provided by government agencies, boards,
commissions, or other designated adjudicators, exercising decision making
authority delegated by statute. Administrative Remedy processes are generally
simpler, less formal, and less technical than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more
people voluntarily discuss their differences and attempt to reach a joint decision
on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative
dispute resolution process using the services of an independent third party to
help settle differences or disputes between two or more individuals.

6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a
legal question or matter. Litigation involves many complex legal issues which
require not only a knowledge of the law that governs the dispute, but also, the
laws governing the procedures to be followed in order to properly litigate a claim.
There are rules governing who may file a claim, where it must be filed, when it
must be filed, and how to file it.
Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMIeligible individuals
NDRN suggests that the definitions for group advocacy interventions be
consistent with those in the One-PPR which again more accurately reflect the
work of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of
groups of people with disabilities pursued through the interventions of systemic
litigation, legislative and regulatory advocacy and systemic advocacy (nonlitigious and non-legislative). It is concerted action to reform the policies or
mode of operations of a system of services such as the disabilities service
system or the policies and practices of private actors. Report the intervention
strategy (abuse and neglect investigation; systemic litigation; educating
policymakers; and other systemic advocacy) used in each case/project. You
may select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and
thorough examination of information, records, evidence and circumstances
surrounding an allegation of abuse and neglect. Investigations are distinct from
advocacy and require a significant allocation of time and resources including such
activities as interviewing witnesses, gathering evidence and generating a written
report, which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the
policies or mode of operations of a system of services. It attempts to address a
systemic issue raised by many individuals, through class action litigation, multiplaintiff litigation, or in some cases individual litigation when the relief sought has
the potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change.
Policy-makers may include individuals in both the executive and legislative
branches of government who make or interpret policies (legislation, regulations,
rules or practices) that impact the lives of people with disabilities. Our advocacy
efforts might be directed at the local, state, or federal level. Educating these

individuals makes them aware of how their actions may impact people with
disabilities. Information reported should only include work done in accordance
with the limit on federal funding.
Other Systemic Advocacy - Other Systems Advocacy refers to concerted action
by the P&A agency to promote and effectuate changes in the policies, rules, and
laws that impact groups of people with disabilities, and to remove the barriers
that prevent or impede them from leading full, productive lives in the
community that does fit elsewhere in the form Systems advocacy typically
addresses the establishment, support, improvement, or expansion of (1)
programs that provide services or benefits to persons with disabilities, and (2)
the legal rights, protections, and entitlements of persons with disabilities; and
may involve opposition to efforts to weaken, reduce or eliminate existing
services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and
quality of service by providers of services, supports and other assistance.
Monitoring may involve using the a P&A’s access authority to visit and in other
ways seek information from institutional or community settings including public
and private facilities where people with disabilities live, work and go to school by
a) conducting face-to-face interviews with individuals with disabilities in those
settings; b) conducting at least one face-to-face interview with a staff member in
those settings; 3) observing and evaluating the physical conditions of the setting;
and 4) accessing and reviewing records, when appropriate, in accordance with
applicable federal and state law.
Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving the P&A’s help to move
from a segregated setting to a community based setting to achieve integration
and independence. However, there is plenty of PAIMI work that is done to
ensure that an individual receives community based services so that the
individual can remain living in the community (like their own home) and be
integrated and independent. Thus, we believe that “a” should specifically
reference maintaining already existing community integration. So, for example,
we suggest “a” read as this:
PAIMI-eligible individuals who are provided with appropriate community-based
services resulting in, or maintaining, community integration and independence;

Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for
individual PAIMI staff. While we understand that it is beneficial to understand the
higher salaries, these are all contained on 990 filings. P&A management are
generally hesitant to post lower level staff salaries and have these common
knowledge in the organization. It seems as though aggregate salary information
would accomplish the needs of SAMHSA, while also maintaining the integrity of
the lower level data. We do applaud the change to WebBGas to black out the
salary information.
Again, we appreciate the opportunity to comment on this collection of
information, and believe this new PPR is one big step to a streamlined data
collection process that will provide the necessary data to show the effectiveness
of the PAIMI program to SAMSHA and Congress. Please be in touch with Eric
Buehlmann of my staff at [email protected] or 202-870-2779 if you have
any questions about this letter.
Sincerely,

Curt Decker
Executive Director

OKLAHOMA DISABILITY LAW CENTER, INC.
5555 EAST 71 STREET, SUITE 9100
TULSA, OK 74136

PHONE: (918) 743-6220 V/TDD/FAX
(800) 880-7755 V/TDD/FAX
http://www.okdlc.org

January 6, 2020

Summer King
SAMHSA Reports Clearance Officer,
5600 Fishers Lane, Room 14E57B,
Rockville, Maryland 20857
Submitted by e-mail - [email protected].
Re: Agency Information Collection Activities: Proposed Collection;
Comment Request 84 Fed. Reg. 59836 (November 6, 2019)
Dear Ms. King:
Thank you for the opportunity to comment on this proposed collection of
information regarding the Protection and Advocacy for Individuals with Mental
Illness (PAIMI) program. Oklahoma Disability Law Center, Inc. (ODLC) believes
that this iteration of the PAIMI Program Performance Report (PPR) is an
excellent opportunity to further the work in standardizing the PPRs that we do for
all the programs as well as ensure that the data collected is as clear and useful
as possible.
Yearly, ODLC is required to produce a Program Performance Report (PPR) for
the PAIMI program as well as seven other programs administered by the
Administration on Disability (AOD), the Social Security Administration (SSA)and
the Rehabilitation Services Administration (RSA). These PPRs contain a wealth
of information, including an evaluation of whether the program has met the goals
and priorities developed for the year with input from the community and the
individuals that we serve. However, the data requested in each report is not
standardized, which requires us to spend a large amount of time drafting and
creating the PPRs. Given the limited resources that we have, it would directly
benefit people with disabilities if the reports could be standardized so that these
resources could instead be used to provide direct services to people with
disabilities.
That is why we appreciate the efforts of SAMHSA to consider modeling your
updates to the PPR on recommendations from the P&A network. Our national
association, the National Disability Rights Network (NDRN) and the P&As have
worked over the last couple of years with the Administration on Disability (AOD)
A system of protection and advocacy for persons with physical and mental disabilities

to streamline the Protection and Advocacy for Individuals with Developmental
Disabilities (PADD), Protection and Advocacy for Voter Access (PAVA),
Protection and Advocacy for Individuals with Traumatic Brain Injury (PATBI), and
Protection and Advocacy for Assistive Technology (PAAT) PPR reporting
processes. The ultimate goal was to produce one PPR that effectively and
efficiently documents the work of a particular P&A agency while providing AOD
and Congress the information they need to properly evaluate these four P&A
programs. This work led to the creation of the One PPR that demonstrates the
outcomes of the P&A agencies and gives AOD and Congress the information
they need to properly evaluate each individual program. The One PPR itself was
designed with the idea that all P&A programs, including the PAIMI program, can
use this concept to ultimately streamline the existing reports.
Use of this One PPR started with Fiscal Year 2019, and we applaud SAMHSA for
working with a number of P&As and NDRN over the last couple of years to
incorporate much of the One PPR framework into this new version of the yearly
PAIMI PPR. We specifically support the inclusion of a number of important data
points that were taken out of the last version of the PAIMI PPR, as well adopting
the outcomes from the One PPR to standardize data collection and outcomes
across the P&A programs. While we overall support this new version of the
PAIMI PPR there are a couple of suggestions that we would propose SAMSHA
consider before finalizing the new PAIMI PPR.

Page 3, Section A, #11 – Demographic Composition of PAIMI Governing
Board, Advisory Council, and Program Staff
We believe the choices for the sex demographic question, nor the two answers,
appropriately reflect the time in which we live. It is not uncommon for our board
or advisory council members, or staff, to feel constrained by the traditional
definitions of female and male. Additionally, the use of the term “sex” connotes a
biological definition, while to truly grasp the overall experience of a person, the
individual‘s true identity requires a different term like gender.
Thus, our fist suggestion is to change the title to “Gender” rather than “Sex”.
Second, we believe the choices should be the following four: Male, Female, Not
Listed, and Chose Not To Answer.

Page 3, Section A, #12 – List of Mental Health Professionals on the
Advisory Council
Only including mental health professionals as choices for individuals that serve
on the advisory council ignores the other potential categories of individuals that
are allowed to serve on the council that are contained in the PAIMI statute.
Section 10805(a) (6) (B) includes other categories like attorneys, providers,

individuals receiving or have received mental health services, etc. that are not
reflected in this list on Page 3 and should be captured in the PPR somehow.
Should you want to specifically break out the different types of mental health
professionals, as referenced in the statute, we are concerned that the list of
mental health professionals listed as answers for this question is too narrow for
the scope of individuals that may serve on the PAIMI Advisory Council. As
SAMHSA’s own website shows (https://www.samhsa.gov/workforce) the list of
mental health professionals is much broader than the limited list on Page 3. At a
minimum an “Other” category needs to be added as an appropriate answer for
other types of mental health professionals that may serve on the advisory
council. We strongly suggest that Peer Support Specialists should be added as
a specifically enumerated choice as this important change in service delivery
should be recognized.

Page 4, Section A, #15 – Governing Board Composition
As ODLC’S impact on people with disabilities encompasses more than
individuals with psychiatric disabilities, the governing board of ODLC is not
constricted to individuals or family members of individuals that have received
mental health services. We agree that it is important to capture the number of
individuals or family members of individuals with disabilities on the governing
board, but to properly reflect the governing board’s composition, we believe
additional answers should be added to this question to reflect other individuals
with diverse disabilities and family members of these individuals. For instance,
the One PPR contemplates that there is a wider scope of disabilities on a P&A
board and could be used as an example for the PAIMI PPR. We have pasted
that table down below. We understand that this is written from the perspective of
the Administration on Community Living and the One PR and would need to be
adjusted to reflect that this is the PAIMI PPR.

Board
TOTAL Numbers of Members (nonduplicative)
PADD Eligible Primary Consumers
PADD Eligible Secondary Consumers
PATBI Eligible Primary Consumers
PATBI Eligible Secondary Consumers
AT Users
PAIMI or PAIR or PABSS Eligible Primary
Consumers
PAIMI or PAIR or PABSS Other Eligible
Secondary Consumers
Other Members

Page 5, Section B, #2 – Sex of PAIMI Eligible Individuals Served
As raised in Section A, #11, we believe the use of “sex” does not appropriately
reflect the time in which we live nor truly grasp the overall experience of a
person. Additionally, the third answer of “unknown/would not disclose” does not
appropriately cover that set of individuals.
Like earlier, our fist suggestion for this section would be to change the title to
“Gender of PAIMI Eligible Individuals Served”. Second, we also again believe
the choices should be the following four: Male, Female, Not Listed, and Chose
Not to Answer

Section C (Instructions): Complaints/Problems of PAIMI-eligible
Individuals
As mentioned in the introduction, we appreciate the willingness of SAMHSA to
consider the outcomes of the One PPR when constructing the outcomes of the
new PAIMI PPR so that they more accurately reflect P&A individual and group
advocacy. That said, the instructions for this section (abuse section instructions
are on page 3) do not reflect these updated outcomes. In particular, both for
internal consistency and to provide consistent outcome information, the
outcomes of individual advocacy in Section C of Areas 1 - 5 should match the
End Outcomes of group advocacy in Section 12. The outcomes in Section 12
were specifically developed to provide information for SAMHSA to use in its
reporting to Congress.

Page 12, Section C, #8 – Intervention Strategies
Again, this is another section we appreciate SAMSHA’s willingness to harmonize
the intervention strategies between the One PPR and the PAIMI PPR to more
accurately reflect P&A advocacy, but that did not occur in the way this section is
currently written. We noticed that the PAIMI PPR continues to have the
“Technical Assistance” option. We believe that this could be confusing to staff to
have different intervention strategies across programs. This is magnified when
you consider that the One PPR defines Technical Assistance as a non-client
directed activity. Cases that would be PAIMI Technical Assistance could easily
fall under limited Advocacy and eliminate the confusion.
Additionally, we ask that you add “Negotiation.” This is an important strategy for
our staff. They are tasked to solve issues at the lowest level, and often this
includes negotiating to obtain good outcomes for their clients. Limited Advocacy
could describe this strategy, but it seems richer to add the additional category, as
it is such a common way that our staff do their work.

Even if the list is the same between the One PPR and the PAIMI PPR, it is
critically important that the definitions of these strategies be the same between
the two PPRs. Because if they are not, then the increase in efficiency through
harmonized PPRs will be lost. Thus, we have included below the definitions from
the One PPR to be used in the instructions on this question.
1. Self-Advocacy Assistance: Self-advocacy Assistance, formerly referred to
as Short Term Assistance, is a level of intervention that can include advice and
counseling, brief research, or letter writing to the client to summarize assistance
given. Advice and counseling assistance includes informing a client of their
rights; coaching the client in self advocacy; reviewing information; counseling a
client on actions one may take; or assisting the client in preparing letters or
documents and/or the dissemination of information and materials related to the
disability rights issue raised by the client. It includes providing information sheets
and other materials.
2. Limited Advocacy: Limited Advocacy is a level of intervention that includes
the provision of a discrete task to a client or a discrete contact on behalf of a
client with a third party. Such activities upon completion require no further or
ongoing actions, either formal or informal. Limited Advocacy can include
communications by letter, telephone or other means to a third party; preparation
of a simple legal document; or assisting a client in the preparation of documents
that are submitted by the client pro se to a third party.
3. Administrative Remedies: An Administrative Remedy is any non-judicial
complaint resolution process provided by government agencies, boards,
commissions, or other designated adjudicators, exercising decision making
authority delegated by statute. Administrative Remedy processes are generally
simpler, less formal, and less technical than the judicial process.
4. Negotiation: Negotiation is a problem-solving process in which two or more
people voluntarily discuss their differences and attempt to reach a joint decision
on their common concerns.
5. Mediation/Alternative Dispute Resolution: Mediation is an alternative
dispute resolution process using the services of an independent third party to
help settle differences or disputes between two or more individuals.
6. Litigation: Litigation is any lawsuit or other resort to the courts to determine a
legal question or matter. Litigation involves many complex legal issues which
require not only a knowledge of the law that governs the dispute, but also, the
laws governing the procedures to be followed in order to properly litigate a claim.
There are rules governing who may file a claim, where it must be filed, when it
must be filed, and how to file it.

Page 15, Section C, #11 - 5E - Interventions on behalf of groups of PAIMIeligible individuals
ODLC suggests that the definitions for group advocacy interventions be
consistent with those in the One-PPR which again more accurately reflect the
work of the P&As. These definitions follow.
Group Advocacy Services: Group advocacy services include work on behalf of
groups of people with disabilities pursued through the interventions of systemic
litigation, legislative and regulatory advocacy and systemic advocacy (nonlitigious and non-legislative). It is concerted action to reform the policies or
mode of operations of a system of services such as the disabilities service
system or the policies and practices of private actors. Report the intervention
strategy (abuse and neglect investigation; systemic litigation; educating
policymakers; and other systemic advocacy) used in each case/project. You
may select more than one per project.
Abuse and Neglect Investigation - An investigation is a systematic and
thorough examination of information, records, evidence and circumstances
surrounding an allegation of abuse and neglect. Investigations are distinct from
advocacy and require a significant allocation of time and resources including such
activities as interviewing witnesses, gathering evidence and generating a written
report, which may or may not be made public.
Systemic Litigation - Systemic litigation is a concerted action to reform the
policies or mode of operations of a system of services. It attempts to address a
systemic issue raised by many individuals, through class action litigation, multiplaintiff litigation, or in some cases individual litigation when the relief sought has
the potential of affecting many people with disabilities.
Educating Policy Makers- A critical strategy used to achieve systems change.
Policy makers may include individuals in both the executive and legislative
branches of government who make or interpret policies (legislation, regulations,
rules or practices) that impact the lives of people with disabilities. Our advocacy
efforts might be directed at the local, state, or federal level. Educating these
individual makes them aware of how their actions may impact people with
disabilities. Information reported should only include work done in accordance
with the limit on federal funding.

Other Systemic Advocacy - Other Systems Advocacy refers to concerted action
by the P&A agency to promote and effectuate changes in the policies, rules, and
laws that impact groups of people with disabilities, and to remove the barriers
that prevent or impede them from leading full, productive lives in the
community that does fit elsewhere in the form Systems advocacy typically
addresses the establishment, support, improvement, or expansion of (1)
programs that provide services or benefits to persons with disabilities, and (2)
the legal rights, protections, and entitlements of persons with disabilities; and
may involve opposition to efforts to weaken, reduce or eliminate existing
services or rights.
Monitoring - includes activities in which a P&A evaluates compliance issues and
quality of service by providers of services, supports and other assistance.
Monitoring may involve using the a P&A’s access authority to visit and in other
ways seek information from institutional or community settings including public
and private facilities where people with disabilities live, work and go to school by
a) conducting face-to-face interviews with individuals with disabilities in those
settings; b) conducting at least one face-to-face interview with a staff member in
those settings; 3) observing and evaluating the physical conditions of the setting;
and 4) accessing and reviewing records, when appropriate, in accordance with
applicable federal and state law.

Page 15, Section C, #12 - End Outcomes of P&A Activities
The phrasing in “a” implies that the individual is receiving our help to move from a
segregated setting to a community based setting to achieve integration and
independence. However, there is plenty of ODLC’s PAIMI work that is done to
ensure that an individual receives community-based services so that the
individual can remain living in the community (like their own home) and be
integrated and independent. Thus, we believe that “a” should specifically
reference maintaining already existing community integration. So, for example,
“a” could read as this:
PAIMI-eligible individuals who are provided with appropriate community-based
services resulting in, or maintaining, community integration and independence;

Page 21 - Section G #1 - PAIMI Personnel
We are unclear as to how important it is for SAMHSA to know the salaries for
ODLC’s individual PAIMI staff. While we understand that it is beneficial to
understand the higher salaries, these are all contained on our 990 filings. We
are generally hesitant to post lower level staff salaries and have these common
knowledge in the organization. It seems as though aggregate salary information

would accomplish the needs of SAMHSA, while also maintaining the integrity of
the lower level data. We do applaud the change to WebBGas to black out the
salary information.
Again, we appreciate the opportunity to comment on this collection of
information, and believe this new PPR is one big step to a streamlined data
collection process that will provide the necessary data to show the effectiveness
of the PAIMI program to SAMSHA and Congress. Please feel free to contact me
if you have any questions about this letter.

Sincerely,

Melissa Sublett,
Executive Director
Oklahoma Disability Law Center, Inc.
918-830-5559
[email protected]