Response to Public Comment Table

0063 Response to Public Comment Table.pdf

One Protection and Advocacy Annual Program Performance Report

Response to Public Comment Table

OMB: 0985-0063

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A 60-day notice published in the Federal Register, Vol. 87, No. 26 7182 FRN on February 8, 2022. ACL
received 32 comments from 7 entities in response to the 60-day notice. Comments included concerns
relating to demographic information, burden of effort, estimate of the developmental disabilities’
population, and clarification needed in the guidance document.
Organization

Disability Rights Maine

Disability Rights
Michigan

Section Comment

Response

Noted demographic information collected
could be improved to better reflect diversity
and cultural competency. The current choices
are male and female. Recommended
including a broad range of gender identify
options. In addition, there is limited
information on racial and ethnic diversity of
individuals served. Recommended including
whether a person is part of an immigrant
community.

ACL intends to
update this
element to reflect
appropriate gender
identity options.

Part 3

Recommended including additional
demographic information about the board,
staff, and advisory council, similar to
recommendations for 1C.

Upon review of the
current PPRs, no
changes will be
made at this time.

None

Burden of hours of 140 to compile the OnePPR is correct; however, this estimate does
not include the amount of time spent by staff
to collect and input required information in
its case management system.

As a result of the
required
information, no
changes will be
made at this time.

None

The amount of time spent for this report is
cumbersome, unnecessarily duplicative, and
feels unconnected to the overall "why". The
team of four spent 203 hours over 3 months
to complete the report. The time and
resources required to complete this report
would be better spent serving clients.
Additionally, the data reporting requirements
also interact with this P&A's timekeeping and
accounting systems, creating additional
reporting complexity for grant projects.
Recommended requesting information
similarly to the PAIR report.

As a result of the
required
information, no
changes will be
made at this time.

This comment relates to 1A-I, 1J-P, 2A, 3A,
3B, 3C-J. The number of people served, cases
closed, cases opened, people impacted and
other categories are reported in six sections

Upon review of the
current PPRs, no

of the report. The data reporting is
duplicative and confusing.

changes will be
made at this time.

Gender reporting is currently limited to male
and female. Recommended expanding the
choice to create a truer description of the
gender identities of the people served.

ACL intends to
update this
element to reflect
appropriate gender
identity options.

This section requires reporting on the gender
of individuals serviced. The current choices
are male and female. P&As across the nation
proudly support LGBTQ people with
disabilities. Recommended permitting a
broader array of responses, which would
result in a negligible increase in the reporting
burden on the P&As. However, it would
make a marked difference in the ability of
P&As to collect and report accurate and
affirming gender demographic information.

ACL intends to
update this
element to reflect
appropriate gender
identity options.

Disability Rights
Pennsylvania

Commend ACL and NDRN for the important
work and vital support and guidance
provided. Would like One-PPR streamlined so
as not to divert time to reporting that could
be spent on substantive work and to provide
information that is more understandable,
straightforward, and useful to the
government and the public.

Upon review of the
current PPRs, no
changes will be
made at this time.

Disability Rights
Pennsylvania

Most group cases are not focused on specific
living arrangements or ages, creating
confusion as to whether multiple living
arrangements or ages should be chosen.

Upon review of the
current PPRs, no
changes will be
made at this time.

Most group cases are not focused on specific
living arrangements or ages, creating
confusion as to whether multiple living
arrangements or ages should be chosen.

Upon review of the
current PPRs, no
changes will be
made at this time.

Seeks information about "race/ethnicity of
groups served" but noted that the
information is included in IJ6.

The guide has been
updated.

Disability Rights
Michigan

Disability Rights New
York

Disability Rights
Pennsylvania
Disability Rights
Pennsylvania

Disability Rights
Pennsylvania

This reflects goals and priorities for the
completed fiscal year; unfortunately, the
result is not a reader-friendly report. The
result narratives are effectively limited to
activities that have quantifiable outcomes
based on the performance measurements,
which are not sufficiently comprehensive.
Additionally, "end outcomes" and
"performance measures" are viewed as the
same.

Upon review of the
current PPRs, no
changes will be
made at this time.

Part 3

The term "performance measurements" is
confusing when it appears to mean "end
outcomes". Eleven end
outcomes/performance measures are in
some ways repetitive and in many ways not
comprehensive.

Upon review of the
current PPRs, no
changes will be
made at this time.

Reporting on end outcomes for systemic
litigation, educating policy makers, and other
systemic activities is challenging because it
does not really allow P&A to avoid
duplication.

Upon review of the
current PPRs, no
changes will be
made at this time.

One-PPR asks for the number of people
whose rights were advanced through class or
system-impact litigation and for people
whose rights were enforced, protected, or
restored by non-litigation group activities.
There is a potential for duplication due to
data requested in 3A.

Upon review of the
current PPRs, no
changes will be
made at this time.

Information in this section is the same from
year-to-year so it is unclear why it needs to
be repeated annually.

Upon review of the
current PPRs, no
changes will be
made at this time.

Part 5

This section requires the P&A to identify
collaboration partners, but it is unclear what
constitutes a collaboration partner.

Upon review of the
current PPRs, no
changes will be
made at this time.

Disability Rights
Pennsylvania

This section asks for information on the
number of Board members who are primary
or secondary PADD, PATBI, PAIMI, PAIR, or
PABSS consumers and who are AT users.
Some board members may fall into more
than one category but the P&A can only
choose to put them in one category. This
information is not an accurate reflection of
consumer involvement in the Board.

Upon review of the
current PPRs, no
changes will be
made at this time.

On page 20 of Guide, the number of clients
for PADD can never exceed 1.58% of a state's
population, yet the DD population almost
certainly exceed 1.58%. Recommended
updating this figure or allowing each P&A to
calculate based on their jurisdiction.

While the 1.58%
has not been
changed, a
clarifying sentence
was added to the
guide.

Recommended reconsidering the definition
of "individual advocacy".

Upon review of the
current PPRs, no
changes will be
made at this time.

Recommended removing problems and
subproblems used infrequently

Upon review of the
current PPRs, no
changes will be
made at this time.

Noted #1 and #2 are not mutually exclusive.
Concerned about the way in which fully and
partially met goals are categorized.
Recommended combining #8 and #9.

Upon review of the
current PPRs, no
changes will be
made at this time.

Recommended revising instructions relating
to how group projects should be counted, to
provide clarity.

Upon review of the
current PPRs, no
changes will be
made at this time.

Part 2

Noted it is time-consuming to provide
narrative for each example. Recommended
allowing for more broad discussion on goals
and priorities and eliminate quantitative
measures.

As a result of the
required
information, no
changes will be
made at this time.

Disability Rights
Pennsylvania

Disability Rights
Wisconsin

None

Part 3

Noted small differences in performance
measures. Recommended changing
performance measures in Part 3D; 3F; 3G;

Upon review of the
current PPRs, no
changes will be
made at this time.

and 3H. Additional instructions are needed in
Guide.

Disability Rights
Wisconsin

Family & Friends of
Care Facility Residents

Part
3.C

Considered #3 duplicative of Part 1E.

Upon review of the
current PPRs, no
changes will be
made at this time.

None

Noted that report is extremely time
consuming since data and narratives are
requested in different ways. One-PPR
attempts to quantify result of P&A work, but
it does not do enough to ensure that
numbers reported have an understandable
meaning. Additionally, there is little guidance
on what numbers should be used for various
types of activities. However, even if this
guidance was thorough, there is too much to
report on.

As a result of the
required
information, no
changes will be
made at this time.

None

Reporting of use of public funds to the
administering agency by federal grantees is
necessary. Accurate, non-partisan reporting
by the protection and advocacy systems
must be foundational for ACL. As the
administering agency, ACL must assure
accountability for the proper use of federal
funds from the programs for which it is
responsible. ACL’s responsibilities include
oversight of the activities of four programs
created under the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (DD
Act): (1) Protection and Advocacy System for
Persons with Developmental Disabilities
(PADD), (2) State Councils on Developmental
Disabilities (CDD), (3) University Centers for
Excellence in Developmental Disabilities
(UCEDD) and (4) Projects of National
Significance (PNS).

No changes were
recommended

DD Act programs operate in every state.
Accurate reporting to ACL by the four DD Act
programs, including protection and advocacy
systems for persons with developmental
disabilities (PADD) is fundamental in meeting
accountability requirements for programs
receiving federal funds. It is necessary that
the administering agency (ACL) understand
PADDs’ goals, activities and outcomes for the
nation’s diverse populations with
developmental disabilities, the situations of
their families and the range of services
offered by states. The impact of PADD’s
activities on families of persons with
disabilities and the states’ human service
systems have not been accurately reported.
The report forms used by PADD do not
transmit the information of vulnerable
people living with lifelong disabilities and of
federal grant programs which use litigation
as a tool to eliminate long-term care facilities
for citizens unable to care for themselves
(PADD’s “systems change” goals). Further, it
is not a requirement of PADD to submit data
in their reports to ACL on mortality and
sentinel events (911 calls or ER visits) of
citizens with cognitive and developmental
disabilities. See for example the deaths of
vulnerable residents in GA and VA following
their forced transitions from long-term care
facilities.

Family & Friends of
Care Facility Residents

None

Persons who are impacted by ACL policies
and DD Act program activities, including
P&As have been excluded from policymaking
by the agency. ACL last held public hearings
(“Listening Sessions”) in 2010. The nearest
ACL Listening Session to Arkansas families
was in Dallas, Texas and three of our family
members attended. Our experience was that
families of persons with high-needs-care and
who receive services in a long-term care
facility were excluded from Day Two of the
listening session. Despite our request
(submitted in writing to ACL) to come to D.C.

Upon review of the
current PPRs, no
changes will be
made at this time.

No changes were
recommended

to participate in the agency’s strategic
planning sessions, we were not notified or
invited. Later, we found the published
reports of the listening sessions to be
inaccurate and highly partisan.

Family & Friends of
Care Facility Residents

National Disability
Rights Network

None

Simple forms with boxes to check are
insufficient to accurately and fully report the
diverse and complex realities of the
population with developmental disabilities to
ACL. Health and safety of persons unable to
care for themselves who are nonverbal and
for whom there is no cure, their aging
primary caregivers, the lack of specialized,
licensed long-term care facilities for persons
with cognitive and developmental
disabilities, and the use of jails and hospitals
as emergency placements for high-needs
persons are but some of the information
which ACL should be receiving.

Upon review of the
current PPRs, no
changes will be
made at this time.

The choices for the gender demographic
question, nor the two answers appropriately
reflect the time in which we live. It is not
uncommon for P&A staff to feel constrained
by the traditional definitions of female and
male. Recommended broadening the choices
to: Male, Female, Not Listed, Choose Not to
Answer.

ACL intends to
update this
element to reflect
appropriate gender
identity options.

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