0063 Public Comment Table

Organization

Section Comment

Disability Rights Maine

1C

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.

Disability Rights Maine

Part 3

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

None

Burden of hours of 140 to compile the One-PPR 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.

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.

1A

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

1C

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.

1C

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.

Disability Rights Maine

Disability Rights Michigan

Disability Rights Michigan

Disability Rights Michigan

Disability Rights New York

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.

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.

1L

Disability Rights
Pennsylvania
Disability Rights
Pennsylvania

Disability Rights
Pennsylvania
Disability Rights
Pennsylvania
Disability Rights
Pennsylvania

Disability Rights
Pennsylvania
Disability Rights
Pennsylvania
Disability Rights
Pennsylvania

Disability Rights
Pennsylvania

Disability Rights
Pennsylvania
Disability Rights
Pennsylvania
Disability Rights Wisconsin

1P

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

2A

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.

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.

3A

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.

1O

Part 5

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.
Information in this section is the same from year-to-year so it is unclear
why it needs to be repeated annually.
This section requires the P&A to identify collaboration partners, but it is
unclear what constitutes a collaboration partner.

6C

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.

3B
2D

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.
None
1B

Recommended reconsidering the definition of "individual advocacy".
Recommended removing problems and subproblems used infrequently

Disability Rights Wisconsin

1E

Disability Rights Wisconsin

1P

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

Disability Rights Wisconsin

Disability Rights Wisconsin
Disability Rights Wisconsin

Disability Rights Wisconsin

Family & Friends of Care
Facility Residents

Part 2

Part 3
Part
3.C

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.
Noted small differences in performance measures. Recommended
changing performance measures in Part 3D; 3F; 3G; and 3H. Additional
instructions are needed in Guide.
Considered #3 duplicative of Part 1E.

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.

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).

Family & Friends of Care
Facility Residents

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. 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.

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.

1C

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.

Family & Friends of Care
Facility Residents

National Disability Rights
Network