The Developmental Disabilities Act

Congressional research reportNov 12, 2010

Ask Donna

What actually matters in this document.

Text

(name redacted)

Analyst in Disability Policy

November 12, 2010

Congressional Research Service

7-....

www.crs.gov

RL34507

CRS Report for Congress

Prepared for Members and Committees of Congress

The Developmental Disabilities Act

Summary

The Developmental Disabilities Assistance and Bill of Rights Act (commonly known as the DD

Act) provides federal financial assistance to states and public and nonprofit agencies to support

community-based delivery of services to persons with developmental disabilities. The DD Act

defines developmental disabilities (DD) as severe, life-long disabilities attributable to mental

and/or physical impairment. The aim of the DD Act is to help individuals with DD maximize

their potential through increased independence, productivity, inclusion, and integration into the

community.

Title I of the DD Act authorizes appropriations for (1) State Councils on Developmental

Disabilities (SCDDs) that are tasked with developing state-wide plans on delivering services to

individuals with DD; (2) Protection and Advocacy (P&A) systems, which investigate reported

incidents of abuse and neglect of individuals with DD; (3) University Centers for Excellence in

Developmental Disabilities (UCEDDs) that engage in applied research on DD; and (4) Projects of

National Significance (PNS), which fund public nonprofits focused on enhancing the

independence, productivity, and social inclusion of individuals with DD.

Title II of the DD Act authorizes competitive grants to help states strengthen their family support

programs for families with a severely disabled family member. Title III of the DD Act authorizes

one scholarship program to provide vouchers for post-secondary education for direct support

workers who assist individuals with DD either through an institution of higher education or state

agency. Title III also authorizes a grant program for the development, evaluation, and

dissemination of a staff development curriculum.

Authorization of appropriations for the DD Act programs expired at the end of FY2007, although

Congress has continued to provide appropriations for the programs. The 111th Congress has not

considered legislation to reauthorize the DD Act. This report provides background and funding

information on DD Act programs, discusses evaluation activities, and summarizes recent

legislative efforts related to the DD Act.

Congressional Research Service

The Developmental Disabilities Act

Contents

Background ................................................................................................................................1

DD Act Programs........................................................................................................................2

State Councils on Developmental Disabilities........................................................................2

Protection and Advocacy.......................................................................................................3

University Centers for Excellence in Developmental Disabilities Education,

Research, and Service ........................................................................................................5

Projects of National Significance...........................................................................................5

New Programs Authorized ....................................................................................................6

Funding ......................................................................................................................................6

Program Evaluation ....................................................................................................................7

Phase One Evaluation ...........................................................................................................8

National Council on Disability Evaluation.............................................................................8

Recent Legislative Efforts ...........................................................................................................9

Legal Representation of Individuals with Developmental Disabilities ....................................9

Issues Surrounding H.R. 2839, H.R. 3995, and Proposed Regulations ...................................9

Individuals with Autism ...................................................................................................... 10

Considerations for the 111th Congress........................................................................................ 11

Legislation Related to the Protection and Advocacy Systems Authorized Under the

DD Act ............................................................................................................................ 11

Reauthorization of the Developmental Disabilities Act ........................................................ 11

Tables

Table 1. Protection and Advocacy Programs ................................................................................4

Table 2. Developmental Disabilities Programs: Appropriations, FY2002 - FY2011 (est.) ............7

Table A-1. State Councils on Developmental Disabilities Allotments, FY2002 - FY2011

(est.) ...................................................................................................................................... 13

Table A-2. Protection and Advocacy Allotments, FY2002 - FY2011 (est.) ................................. 16

Appendixes

Appendix A. Allotments for State Councils on Developmental Disabilities and Protection

and Advocacy Programs, FY2002 - FY2011 (est.) .................................................................. 13

Appendix B. Current Projects of National Significance (PNS)................................................... 19

Appendix C. Acronym Glossary................................................................................................ 27

Contacts

Author Contact Information ...................................................................................................... 27

Congressional Research Service

The Developmental Disabilities Act

Acknowledgments .................................................................................................................... 27

Congressional Research Service

The Developmental Disabilities Act

Background

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) provides federal

financial assistance to states and public and nonprofit agencies to support community-based

delivery of services to persons with developmental disabilities (DD). The aim of the programs

established by the DD Act is to help persons with DD maximize their work potential, facilitate

their ability to live independently, and foster their integration into the community. The protection

of the legal rights of individuals with DD is another major objective of the DD Act. Current law

encourages coordination and collaboration among the State Councils on Developmental

Disabilities (SCDDs), various independent living centers, and its state Protection and Advocacy

(P&A) programs to support the legal rights of individuals with DD. Although the DD Act does

not provide direct services, its programs are intended to plan and better coordinate the delivery of

services and to advocate on behalf of individuals with DD. The Administration on Developmental

Disabilities (ADD), part of the Administration for Children and Families (ACF) in the

Department of Health and Human Services (HHS), is the federal agency that oversees all DD Act

programs.

The DD Act was originally Title I of the Mental Retardation Facilities and Community Mental

Health Centers Construction Act of 1963 (P.L. 88-164). It was renamed the Developmental

Disabilities Assistance and Bill of Rights Act by P.L. 95-602 in 1978, and was completely

reorganized by P.L. 98-527 in 1984. Congress last reauthorized the DD Act1 (P.L. 106-402) in

2000. Authorizations of appropriations for the DD Act programs expired at the end of FY2007,

although Congress has continued to provide appropriations for the programs. Legislation to

reauthorize the DD Act has not been introduced in the 111th Congress.

Based on data from the U.S. Census Bureau, there are an estimated 4.6 million individuals with

developmental disabilities in the United States.2 Although the term “developmental disability”

originally specified disabling conditions such as mental retardation and cerebral palsy, the current

definition is based on functional limitations that manifest prior to adulthood. Section 102(8)(A) of

the DD Act defines “developmental disabilities” as

“a severe, chronic disability of an individual that (i) is attributable to a mental or physical

impairment or combination of mental and physical impairments; (ii) is manifested before the

individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial

functional limitations in 3 or more of the following areas of major life activity: (I) Self-care.

(II) Receptive and expressive language. (III) Learning. (IV) Mobility. (V) Self-direction.

(VI) Capacity for independent living. (VII) Economic self-sufficiency; and (v) reflects the

All sections referenced in this report are part of this DD Act unless otherwise noted. It is codified in 42 U.S.C. §

15001 et seq.

Precise counts on the number of individuals with developmental disabilities are difficult to attain. The U.S. Census

Bureau annually conducts the National Health Interview Survey (NHIS) on the civilian non-institutionalized population

of the United States. In 1994 and 1995, a special two-year Disability Supplement was added to the NHIS to gather

nationally representative data on the characteristics of individuals with disabilities in the U.S. The data revealed that the

overall prevalence of individuals with mental retardation and/or developmental disabilities in the non-institutionalized

population was estimated to be 14.9 per 1,000 people in the United States (see ‘Table 3’ in Sheryl Larson et al.,

Prevalence of Mental Retardation and/or Developmental Disabilities: Analysis of the 1994/1995 NHIS-D, Institute on

Community Integration, MR/DD Data Brief, Minneapolis, MN, April 2000, p. 7, http://rtc.umn.edu/docs/dddb2-1.pdf).

Assuming that the prevalence has remained relatively constant over time, there are an estimated 4.6 million individuals

with developmental disabilities in the United States, based on the July 2009 U.S. population census estimate of

307,006,550.

Congressional Research Service

The Developmental Disabilities Act

individual’s need for a combination and sequence of special, interdisciplinary, or generic

services, individualized supports, or other forms of assistance that are of lifelong or extended

duration and are individually planned and coordinated.”

The DD Act also specifies that “an individual from birth to age 9, inclusive, who has a substantial

developmental delay or specific congenital or acquired condition, may be considered to have a

developmental disability without meeting 3 or more of the criteria described ... if the individual,

without services and supports, has a high probability of meeting those criteria later in life.”3

Without appropriate services and supports, the choices open to some people with DD, including

where they live, work, and play, may be minimal. Many may be isolated rather than fully

integrated and included in the mainstream of society. Others may require individually planned

and coordinated services and supports (e.g., housing, employment, education, civil and human

rights protection, health care) from many providers in order to live in the community.

This report describes the major programs authorized under Title I of the DD Act. Federal funds

for these programs are used to help state governments, local communities, and private sector

organizations provide health care services, educational opportunities, P&A, and employment

training to persons with developmental disabilities. A list of P&A programs and their respective

administering agencies is provided in Table 1. A funding history for each of these programs is

included in Table 2. Table A-1 and Table A-2 in Appendix A detail allotments for SCDDs and

for P&A programs, respectively, by state and U.S. territory. Appendix C lists the full names of

the acronyms used in this report.

DD Act Programs

State Councils on Developmental Disabilities

Each state and U.S. territory receives federal funding to establish a SCDD, which is expected to

develop and implement a comprehensive statewide plan for delivering services to individuals

with DD—and their families—especially those not otherwise served under existing health and

welfare programs.4 Members of a state’s Council are appointed by the governor and must be

geographically, ethnically, and racially representative of the state as a whole. At least 60% of the

members of the Council must be individuals with DD, immediate relatives of persons with a DD,

or legal guardians to such individuals. Representatives from relevant state agencies are also

required to sit on each SCDD. SCDDs are given wide latitude to use the DD Act funding they

receive. Each is permitted to engage in advocacy activities that promote independent living and

social integration. These efforts may include, but are not limited to

•

training,

•

technical assistance,

•

barrier elimination, 5

§102(8) of the DD Act (42 U.S.C. 15002(8)(B)).

§§121-129 of the DD Act (42 U.S.C. §§ 15021-15029).

An environmental factor that hinders an individual with a disability from functioning in his or her daily life can be

considered a “barrier.” For example, lack of access to smooth surfaces, such as a continuous path of sidewalks, could

(continued...)

Congressional Research Service

The Developmental Disabilities Act

•

coalition development and citizen participation,

•

informing policymakers,

•

advocacy, capacity building and systems change, and

•

demonstration of new approaches to services and supports.6

Funds are allotted to states and territories based on population, the need for services for

individuals with DD, and the financial need of each state or territory (see Appendix A, Table

A-1).7 The DD Act of 2000 (P.L. 106-402) amended the previously established minimum

allotments for states and territories. P.L. 106-402 stipulates that in years when total appropriations

for SCDDs are less than or equal to $70 million, each state will receive at least $400,000 from

this program and each territory will receive $210,000. When appropriations exceed $70 million,

minimum allotments for states and territories will be $450,000 and $220,000, respectively. 8

Matching funds are required on a 75% federal-25% state basis, except in the case of projects in

“poverty areas,” where the federal share may be up to 90%. For projects conducted by Council

members or staff to implement state plan activities,9 the federal share may be up to 100% of the

aggregate necessary cost of such activities.

Protection and Advocacy

As a condition for receipt of grant funds for SCDDs, states must have in effect a system of

programs to protect and advocate for the rights of individuals with DD. P&A programs provide

information and referral services and investigate reported incidents of abuse and neglect of

individuals with DD.10 These programs have the authority to pursue legal, administrative, and

other appropriate remedies to protect and defend the legal and human rights of individuals with

DD. There are 57 P&A systems in the United States. Each state (50), each U.S. territory (5), the

District of Columbia (1), and American Indian tribes (1) receive P&A funding. Appropriations for

all entities are detailed in Table A-2 of Appendix A.

(...continued)

be considered a physical environmental barrier for a person with DD who has impaired balance and wishes to take

daily walks in order to maintain a physical fitness program. An example of a social barrier is the unavailability of

public transportation for a person with a DD to use to get to work.

For additional information about the role of SCDDs, see ADD Mission Statement, available at

http://www.acf.hhs.gov/programs/add/.

Two-thirds of the amount appropriated is allotted to each state based on relative population, weighted by the relative

per capita income for each state. One-third of the amount appropriated is allotted according to the percentage of

individuals in the state, aged 18-65, receiving benefits under the Childhood Disabilities Beneficiary Program

[§202(d)(1)(B)(ii)of the Social Security Act (42 U.S.C. 402(d)(1)(B)(ii))]. Data used to compute the allotments are

supplied annually by the Social Security Administration and the U.S. Department of Commerce.

When the DD Act was reauthorized in 2000 (P.L. 106-402), minimum allotments were also constrained so that a state

would not be given “less than the amount received by the State for the previous year.” The Birth Defects and

Developmental Disabilities Prevention Act of 2003 (P.L. 108-154) amended the minimum allotment so that each state

would receive at least as much money as was appropriated in the previous fiscal year for its SCDD, or it would receive

“the amount of Federal appropriations” received in FY2000, FY2001, or FY2002, whichever is greater.

“State plan” activities include, but are not limited to, outreach activities, training for persons with DD, technical

assistance, public education efforts, interagency coordination activities, and research that would inform policy makers

about the needs of persons with DD.

§§121-129 of the DD Act (42 U.S.C. 15001-15029).

Congressional Research Service

The Developmental Disabilities Act

Funds for P&A systems are allotted on the same basis as the SCDDs, except no matching funds

are required. The Developmental Disabilities Assistance and Bill of Rights Act Amendments of

1994 (P.L. 103-230) set the minimum allotments under this program at $200,000 for states and

$107,000 for territories in fiscal years when the total amount appropriated for the program is at

least $20 million, and current law maintains those minimum allotments.11

Although the DD Act provides a mandate for protection and advocacy of persons with DD, other

federal laws have similar mandates for P&A programs for similarly vulnerable populations. Table

1 lists other P&A programs and the federal agencies that administer them. Together, these

programs form a state, territorial, or tribal P&A system that focuses on securing the rights of

persons with all types of disabilities wherever they reside. 12 The DD Act is unique in that it

charges the SCDDs with coordination of services with the other programs in the P&A system. 13

Table 1. Protection and Advocacy Programs

Program

Administering Agency

P&A for Individuals with Developmental

Disabilities (PADD)

Administration on Developmental Disabilities, Department of

Health and Human Services

P&A for Voting Access (PAVA)

Administration on Developmental Disabilities, Department of

Health and Human Services

P&A for Individuals with Mental Illness (PAIMI)

Center for Mental Health Services, Department of Health and

Human Services

P&A for Individual Rights (PAIR)

Rehabilitation Services Administration, Department of Education

P&A for Assistive Technology (PAAT)

Rehabilitation Services Administration, Department of Education

P&A for Beneficiaries of Social Security

(PABSS)

Social Security Administration

P&A for Individuals with Traumatic Brain

Injury (PATBI)

Health Resources and Services Administration, Department of

Health and Human Services

Source: HHS, ACF, ADD, State Protection and Advocacy Agencies Systems Fact Sheet, http://www.acf.hhs.gov/

programs/add/states/pnafactsheet.html.

Note: One other program considered part of the state Protection and Advocacy System, the Client Assistance

Program (CAP), established by the 1984 Amendments to the Rehabilitation Act, provides services such as

assistance in pursuing administrative, legal, and other appropriate remedies to persons receiving or seeking

services from state rehabilitation agencies under the Rehabilitation Act. A CAP agency may provide assistance

and advocacy with respect to services that are directly related to employment for the client or client applicant.

For additional information about Protection and Advocacy/CAP System, see the National Disability Rights

Network (NDRN) at http://www.napas.org/.

When appropriations for the P&A program are not at least $20 million, the minimum allotments are $150,000 for

each state and $80,000 for each territory.

For additional information about the system of Protection and Advocacy for Individuals with Disabilities, see

National Disability Rights Network (NDRN) at http://www.napas.org/aboutus/PA_CAPext.htm.

§143(a)(D) of the DD Act (42 U.S.C. 15043).

Congressional Research Service

The Developmental Disabilities Act

University Centers for Excellence in Developmental Disabilities

Education, Research, and Service

Formerly known as “university-affiliated programs,” University Centers for Excellence in

Developmental Disabilities Education, Research, and Service (UCEDDs) are interdisciplinary

research and public service units of universities or public, not-for-profit entities associated with

universities. They provide training and technical assistance, and engage in scientific research that

is intended to be directly applicable to meeting the needs of people with DD. These centers are in

a unique position to facilitate the flow of research findings and disability-related information

from the university environment to the public at-large. UCEDDs educate policy makers,

employers, and community leaders about opportunities for persons with disabilities in an effort to

increase the capacity of such individuals to live independently and lead economically productive

lives.14

UCEDD discretionary grants are awarded on a competitive basis for a period of five years.

According to statute, existing UCEDDs receive first priority when DD Act funding is being

distributed.15 In FY2010, there are 67 such UCEDDs, with at least one center in every U.S. state,

the District of Columbia, Guam, Puerto Rico, the U.S. Virgin Islands, receiving $542,000 per year

in federal funding. 16

Projects of National Significance

This program funds grants or contracts to public nonprofit institutions to enhance the

independence, productivity, and social inclusion of people with DD. Projects of National

Significance (PNS) differ from the SCDDs and P&A programs because PNS activities focus on

emerging areas of concern, on issues that transcend the border of particular states and territories.17

Such projects may (1) provide support services for families of individuals with DD; (2) involve

data collection and analysis; (3) support the advocacy, planning, and training functions of

SCDDs; or (4) fund other projects, such as conferences and special meetings that may have an

impact on federal or state policy. Examples of PNS projects include studies of racial disparities in

access to services used by individuals with DD, or research that explores the transition from

school to work for the DD population. PNS grants are administered by ADD at the federal level.

Funding for the PNS grants in FY2010 was expected to support 46 grants for: youth activities,

family support activities, data collection, evaluations of all DD Act programs, and programs

focused on emerging issues of concern for the disability community such as Medicaid services

available to adults and children with developmental disabilities. 18

§§125-129 of the DD Act (42 U.S.C. 15062).

§152 of the DD Act, (42 U.S.C. 15062). If each of the existing Centers receives a minimum funding level of

$500,000 per fiscal year, and there are adequate funds remaining from the annual appropriation, other activities

specified under the DD Act would be funded. The activities identified in the DD Act as appropriate recipients of the

additional funding are (1) National Training Initiative and (2) grants for additional Centers, or increased funding for

Centers that operate in areas of high need.

A complete directory of UCEDDs is available online at the Association of University Centers on Disabilities

(AUCD), http://www.aucd.org/directory/directory.cfm?program=UCEDD.

§§161-163 of the DD Act (42 U.S.C. 15081-15083).

See a for a list of active PNS grant recipients by category.

Congressional Research Service

The Developmental Disabilities Act

New Programs Authorized

In addition to reauthorizing the existing programs described above, the DD Act of 2000

authorized three new programs. Title II authorized competitive grants to help states strengthen

their family support programs for families with a severely disabled family member. 19 Title III

authorized one scholarship program to provide vouchers for post-secondary education for direct

support workers who assist individuals with DD as well as a grant program for the development,

evaluation, and dissemination of a staff development curriculum.20

Funding

In FY2002, the following amounts were allocated for DD Act programs: $66.9 million for the

SCDDs, $31.9 million for P&A programs, $24.0 million for the UCEDDs, $11.7 million for PNS,

and $800,000 each for the new scholarships and staff development curriculum grants.21 Although

authorization for the staff development curriculum lapsed after FY2003, the act authorized such

sums as may be necessary for the other DD programs through FY2007, including a separate

family support program that came into existence in FY2003. Known as Family Support 360, this

program only received funding in FY2003 (for planning) and FY2004 (for implementation).

Since FY2005, ADD has funded the family support program using monies appropriated for

PNS.22

Congress appropriated $168.4 million for DD Act programs for FY2010. Table 2 shows the

recent history of total funding allocations for the programs authorized by the DD Act. Total

allocations for all the DD Act’s programs have increased from $134.5 million in FY2002 to

$168.4 for FY2010. Table A-1 and Table A-2 in Appendix A provide FY2002-FY2011 funding

allotments for the SCDDs and for P&A programs, respectively, by state and territory. 23 Although

FY2011 appropriations have not yet been finalized, estimates are provided. 24

§§202-212 of the DD Act (42 U.S.C. 15091-15101). For program details, see http://www.acf.hhs.gov/programs/add/

Factsheet.html.

§§304-305 of the DD Act (42 U.S.C. 15114-15115). No additional funds were appropriated for Title II or Title III,

personal communication, ADD, February 24, 2009.

Funding allocations for P&A exclude: 1) any funds withheld for P&A technical assistance centers under §142(a)(6)

of the DD Act, and 2) any unused P&A funds realloted under §142(c) of the DD Act.

Twenty-one states and territories have established and continue to maintain this type of program. For details, see

http://www.acf.hhs.gov/programs/add/states/pns_map.html.

P&A figures and Total figures exclude: 1) any funds withheld for P&A technical assistance centers under §142(a)(6)

of the DD Act, and 2) any unused P&A funds realloted under §142(c) of the DD Act.

The President’s FY2011 budget request for DD programs matches FY2010 levels (see Budget of the United States

Government: Appendix Fiscal Year 2011, p.498, lines 01.19-01.22 at http://www.gpoaccess.gov/usbudget/fy11/pdf/

appendix/hhs.pdf). However, a March 16, 2010 ACF announcement on FY2011 Estimated Allotments for SCDDs and

P&A programs contained figures that were lower than the budget request (see Federal Allotments to State

Developmental Disabilities Councils and Protection and Advocacy Systems Formula Grant Programs for Fiscal Year

2011 at http://www.acf.hhs.gov/programs/add/adddocs/HHS-2011-ACF-ADD-ADDDDC-0079.pdf). Allotment figures

from the ACF announcement are reported in Table 2, Table A-1 and Table A-2 for FY2011.

Congressional Research Service

The Developmental Disabilities Act

Table 2. Developmental Disabilities Programs:

Appropriations, FY2002 - FY2011 (est.)

(in millions of dollars)

Fiscal

Year

State Councils on

Developmental

Disabilities

(SCDDs)

Protection

Advocacya

(P&A)

University Centers for

Excellence in Developmental

Disabilities Education, Research,

and Service (UCEDDs)

Projects of

National

Significanceb

(PNS)

Totala

2002

66.9

31.9

24.0

11.7

134.5

2003

71.1

35.5

24.9

12.4

143.9

2004

73.1

37.6

26.8

11.6

149.1

2005

72.5

37.3

31.5

11.5

152.8

2006

71.8

37.9

33.2

11.4

154.3

2007

71.8

37.9

33.2

11.4

154.3

2008

72.5

38.2

36.9

14.2

161.8

2009

74.3

39.2

37.9

14.2

165.6

2010

75.1

40.2

38.9

14.2

168.4

2011c

72.5

38.2

38.9

14.2

163.8

Sources: Department of Health and Human Services, Budget Tables at http://www.acf.hhs.gov/programs/olab/

budget/index.html and Final Allotment tables at http://www.acf.hhs.gov/programs/add/grantsandfunding.html.

P&A figures and Total figures exclude: 1) any funds withheld for P&A technical assistance centers under

§142(a)(6) of the DD Act, and 2) any unused P&A funds realloted under §142(c) of the DD Act.

PNS funding also includes appropriations for Family Support 360 from FY2005 to FY2010. See the ‘Family

Support 360’ section in Appendix B for specific information on ADD family support programs.

FY2011 allotments figures are estimates provided by the U.S. Department of Health and Human Services.

Program Evaluation

In accordance with accountability requirements of the DD Act,25 as well as those of the

Government Performance and Results Act (GPRA) of 199326 and the Program Assessment Rating

Tool (PART),27 the Developmental Disabilities Program Independent Evaluation (DDPIE) project

has been developed to assess the overall effectiveness of the DD Act programs. The DDPIE

project was divided into two phases. Phase One of the DDPIE involved (1) the development of

evaluation tools, and (2) the implementation of a pilot study to test the accuracy, feasibility, and

utility of the evaluation tools.28 Phase One included an advisory panel of relevant stakeholders,

such as individuals with DD; families of individuals with DD; other consumers; advocates;

researchers; and representatives from various DD networks to provide input and review draft

§104 of the DD Act.

P.L. 103-62.

OMB, Assessing Program Performance, at http://www.whitehouse.gov/omb/expectmore/part.html.

Lynn Elinson, Pei-Shu Ho, Linda Lynch, Cynthia Thomas, Karen R. Stewart, Martha B. Palan, Bibi Gollapudi, and

William D. Frey (hereafter Elison, et al.), “Developmental Disabilities Program Independent Evaluation (DDPIE)

Project, Final Report”, Westat: Rockville, MD, November, 2008. Institutional review board (IRB) approval was

obtained for the pilot study to protect the rights and welfare of human subjects who participated in the study, p. xiii.

Congressional Research Service

The Developmental Disabilities Act

materials.29 A working group of DD program representatives from SCDDs, P&A programs, and

UCEDDs was established to incorporate DD program input; address concerns, such as potential

duplication of data collection; and facilitate collaboration between DD program components in

the development and piloting of evaluation tools. 30

Phase One Evaluation

Phase One evaluation activities, occurring between 2005 and 2008, were guided by the principles

of the Centers for Disease Control and Prevention’s (CDC’s) Framework for Program Evaluation

in Public Health and the American Evaluation Association.31 The DDPIE program evaluation

process included identification of DD program key functions, with the development of

measurements for each key function. 32 A select, geographically diverse group of SCDDs, P&A

programs, and UCEDDs piloted these evaluation measures.33

Several findings emerged from the Phase One evaluation activities, including recommendations

on (1) benchmarks and indicators to be used in a full-scale evaluation, (2) logistics for data

collection, and (3) ways of making use of existing data that is reported from DD Act programs to

ADD.

National Council on Disability Evaluation

A separate DD program evaluation effort has been initiated by the National Council on Disability

(NCD). This one-year project is designed to study the effectiveness of services established by the

DD Act and to develop recommendations for improvements that will enhance the quality of life

and opportunities for people with DD. Specifically, it will

•

examine how the ADD administers, supports, monitors, evaluates, and holds

accountable the programs and services under the DD Act, and

•

evaluate select programs and services authorized under the DD Act.34

Ibid, pp. 3-2 to 3-6.

Ibid, p. 3-6.

CDC, “Framework for program evaluation in public health”, MMWR, 1999, 48 (No. RR-11), p. 1-40, at

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4811a1.htm, accessed September 13, 2010.

Elison, et al., DDPIE Project, Final Report, Westat: Rockville, MD, November, 2008. The measurement matrix of

key functions included benchmarks, indicators, and performance standards. “Benchmarks were considered to be

general standards or key expectations for each key function. Performance standards, more objectively defined than

benchmarks, were statements of the expectations or requirements that DD Network programs should be achieving,

doing, or having at a nation level. Indicators were what would be measured to determine whether the benchmarks and

performance standards were being met”, p. x. Phase One took place from September 2005 through September 2008.

Report available at http://www.acf.hhs.gov/programs/add/pns/task7.html.

Ibid, pp. 3-20.

NCD, “Developmental Disabilities Assistance and Bill of Rights Act: Implementation Evaluation and

Recommendations for Reauthorization”, National Council on Disability Prerelease Notice of Funding Opportunity for a

Cooperative Agreement, May 12, 2008, at http://www.ncd.gov/research_opportunity/042908prerelease.html, accessed

September 13, 2010. Applications for proposals to implement this evaluation project were due June 20, 2008. The

estimated period of performance was September 15, 2008 - September 14, 2009. As of the date of this CRS report, the

NCD study has concluded and is in the editing stage. A final report is expected in Fall 2010.

Congressional Research Service

The Developmental Disabilities Act

Recent Legislative Efforts

Legal Representation of Individuals with Developmental

Disabilities

Legislation that directly related to the DD Act was considered, but not enacted, in the 110th

Congress. In June 2007, H.R. 2839 was introduced by Representative Barney Frank. This bill

would have amended the DD Act to require SCDDs and P&A programs to obtain authorization

from individuals or their legal guardians before pursuing legal remedies on their behalf. In effect,

litigants would have to “opt-in” to lawsuits filed on their behalf by DD Councils or P&A

programs.

In October 2007, H.R. 3995 was also introduced by Representative Frank. Intended as a substitute

for H.R. 2839, it would have extended the right of individuals or their legal guardians to “optout” of any proposed class action lawsuits. H.R. 3995 would have required federally funded

organizations representing plaintiffs in a class action to give notice to any Intermediate Care

Facility for the Mentally Retarded (ICF/MR) that was named in said lawsuit.35 In turn, this

ICF/MR would be obliged to give notice of the proposed action to its residents or their legal

guardians.

Paralleling the bills introduced by Representative Frank, the ADD proposed a new rule that would

modify the implementation regulations for the DD Act. 36 Specifically, HHS sought comment on

“…whether the current process involving class action lawsuits provides adequate protection for

individuals with developmental disabilities,” and on what criteria should be applied, or what

clearance process should be followed, to include an individual as a member of a “class.”37 In

addition, HHS asked for feedback about how to handle situations in which there is a difference of

opinion between the individual with a DD and his or her guardian regarding whether to become a

member of a class action lawsuit. The public comment period for this notice of proposed

rulemaking closed on September 29, 2008. Final rules were never issued.

Issues Surrounding H.R. 2839, H.R. 3995, and Proposed Regulations

The underlying objective of bills introduced in the 110th Congress and the proposed regulations

discussed above was to address some concerns that have been raised about the activities of some

federally funded DD Act programs. Specifically, Voice of the Retarded (VOR), an advocacy

organization, has argued that P&A organizations have been complicit in the neglect, and even

death, of some individuals with severe mental retardation by bringing class action lawsuits, which

have ultimately led to the closure of some ICFs/MR.38 VOR has contended that some low35

An ICF/MR is an institution whose primary purpose is to provide health or rehabilitation services to individuals with

mental retardation or related conditions. ICFs/MR must meet standards outlined in federal regulations (42 CFR Part

483, Subpart I, §§483.400-483.480). In addition, all ICFs/MR residents must be financially eligible for the Medicaid

program.

HHS, “Notice of Proposed Rulemaking (NPRM), Developmental Disabilities Program,” 73 Federal Register 1970719741, April 10, 2008.

Ibid p. 19709.

For evidence of higher mortality rates among persons with DD who were transferred out of ICFs/MR, see Robert

(continued...)

Congressional Research Service

The Developmental Disabilities Act

functioning persons would have preferred to remain in an institutional setting and would have

been able to do so, if P&A programs had been required to secure the approval of the families or

guardians of these individuals with DDs before filing class action suits “on their behalf.”39 In

contrast, organizations such as American Disabled for Attendant Programs Today (ADAPT) have

argued that the administrative burden associated with “opting-in” to a lawsuit is unreasonable and

would only delay or hinder efforts to deinstitutionalize services for individuals with disabilities.

Moreover, they contend, by limiting the number of class action suits brought against ICFs/MR,

the “opt-in” provision in H.R. 2839 would have insulated facilities that provide substandard care,

making it more difficult to penalize these institutions. ADAPT and other advocacy groups

welcomed Representative Frank’s substitution of H.R. 3995 for H.R. 2839.40

Individuals with Autism

Additionally during the 110th Congress, the Expanding the Promise for Individuals With Autism

Act of 2007 (S. 937, H.R. 1881), sponsored by Senator Hillary Rodham Clinton and

Representative Mike Doyle, would have awarded additional grants to UCEDDs to (1) provide

services and address the unmet needs of individuals with autism and their families, (2) make

grants to P&A programs to address the needs of individuals with autism and other emerging

populations of individuals with disabilities, and (3) award a grant to a national nonprofit

organization for the establishment and maintenance of a national technical assistance center for

autism services and information dissemination. Although individuals with autism already receive

services funded under the DD Act, these bills would have given additional monies to SCDDs and

P&A programs for the purposes of funding services specifically geared towards individuals with

autism. 41

In the 111th Congress, Representative Doyle also introduced the Training and Research for Autism

Improvements Nationwide Act (H.R. 5756), cosponsored by Representative Christopher Smith.

H.R. 5756 would award grants to UCEDDs to provide interdisciplinary training, continuing

education, technical assistance, and information to parents and healthcare professionals for the

purpose of improving services to individuals with autism and their families.

(...continued)

Shavelle, David Strauss, and Steve Day, “Deinstitutionalization in California: Mortality of Persons with Developmental

Disabilities after Transfer into Community Care,” Journal of Data Science, vol. 3 (2005), pp. 371-380.

Mary McTernan, The Need for Immediate Reform, VOR, Elk Grove, IL, January, 2007.

Personal communication with Tom Wilson, ADAPT Board Member, May 22, 2008.

Funding for autism research was also addressed late in the 110th Congress by Representatives Chris Smith and Mike

Doyle. They worked to secure funds for research to improve treatment and intervention for individuals with autism

spectrum disorders (ASDs) in the Research and Development account for the Department of Defense, Defense Health

Program in the “FY2009 Consolidated Security, Disaster Assistance, and Continuing Appropriations Act” (P.L. 110329). For additional information, see http://doyle.house.gov/newsrel_2008/

20081030AutisminFY09DoDApprops.shtml.

Congressional Research Service

The Developmental Disabilities Act

Considerations for the 111th Congress

Legislation Related to the Protection and Advocacy Systems

Authorized Under the DD Act

In the 111th Congress, the House has passed H.R. 911, the Stop Child Abuse in Residential

Programs for Teens Act of 2009. Similar legislation (H.R. 6358) also passed the House during the

110th Congress. H.R. 911 requires standards and enforcement provisions to prevent child abuse

and neglect in public and private residential programs that serve children with emotional,

behavioral, or mental health problems or disorders; or problems with alcohol or substance

abuse.42 Among other provisions, H.R. 911 would direct the Assistant Secretary of Children and

Families in HHS to (1) implement an ongoing review process for investigating and evaluating

reports of child abuse and neglect at covered programs; (2) establish public websites with

information about each covered program, as well as a national toll-free telephone hotline to

receive complaints; (3) establish civil penalties for violations of standards; and (4) establish a

process to ensure that complaints received by the hotline are promptly reviewed by persons with

appropriate expertise. H.R. 911 would require the Assistant Secretary to develop a process to

immediately notify the state, appropriate law enforcement, and appropriate P&A system of any

credible complaint of child abuse and neglect at a covered residential program.

Reauthorization of the Developmental Disabilities Act

Should reauthorization of the DD Act be considered in the 111th Congress, advocates have

identified a need to address expanded funding for the UCEDDs to meet the needs of individuals

with DD and their families across the lifespan.43 There are indications that individuals with DD

are now living longer.44 Also, there is increased recognition and appreciation of the impact of

early life experiences on later life. Therefore, clinicians, families, and people with disabilities are

increasingly recognizing the importance of long term planning for individuals with

developmental disabilities who are living beyond childhood.45 The need to address the transition

from pediatric health care services to adult care services for youth with chronic health conditions

or disabilities was also identified in the 2007 Institute of Medicine report on The Future of

Disability in America.46 The National Association of Councils on Developmental Disabilities

H.R. 911.EH. For additional information about vulnerable youth, see CRS Report RL33975, Vulnerable Youth:

Background and Policies, by (name redacted).

Association of University Centers on Disabilities (AUCD), Priority Disability Recommendations, Issue Paper for

Obama Transition Team, Silver Spring, MD, December 17, 2008, http://www.aucd.org/docs/policy/

AUCD%20Disabilitiy%20Recommendations%20-%2012-16-08.pdf.

For example, see Matthew P. Janicki, Arthur J. Dalton, C. Michael Henderson and Philip W. Davidson, “Mortality

and Morbidity Among Older Adults with Intellectual Disability: Health Services Considerations,” Disability and

Rehabilitation, vol. 21, no. 5/6, (1999), pp. 284-294.

Institute of Medicine, The Future of Disability in America, Washington, DC: The National Academies Press, 2007, p.

139, at http://www.nap.edu/catalog.php?record_id=11898.

Institute of Medicine, The Future of Disability in America, Washington, DC: The National Academies Press, 2007, p.

117, at http://www.nap.edu/catalog.php?record_id=11898. For additional information about meeting the health care

needs of individuals with DD across the lifespan, see for example: HHS Public Health Service, Office of the Surgeon

General, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation, Rockville,

MD, 2002 at http://www.surgeongeneral.gov/topics/mentalretardation/ and The Arc of Massachusetts, Left Out in the

(continued...)

Congressional Research Service

The Developmental Disabilities Act

recommended reauthorization of the DD Act; increased funding for SCDDs; provisions that

would address community-based employment of individuals with DD; and the appointment of

executive branch officials who have knowledge of DD as priorities for the incoming

administration.47

As of the date of this CRS Report, no bills to reauthorize the Developmental Disabilities Act have

been introduced in the 111th Congress.

(...continued)

Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts,

December, 2008, at http://www.arcmass.org/ArcMassHome/WhoWeAre/ServicesatTheArc/HealthCareProject/

HealthCareProjectReport2009/tabid/848/Default.aspx.

Michael Brogioli, Chief Executive Officer, National Association of Councils on Developmental Disabilities

(NACDD), NACDD Policy Concerns for President-elect Obama’s Transition Team, available at http://www.nacdd.org/

index.html.

Congressional Research Service

Appendix A. Allotments for State Councils on Developmental Disabilities and

Protection and Advocacy Programs, FY2002 - FY2011 (est.)

Table A-1. State Councils on Developmental Disabilities Allotments, FY2002 - FY2011 (est.)

(in dollars)

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Alabama

1,316,694

1,312,274

1,315,925

1,305,392

1,209,711

1,287,350

1,304,421

1,351,459

1,363,915

1,304,421

Alaska

20,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Arizona

965,108

1,144,633

1,285,145

1,274,859

1,260,522

1,257,240

1,342,090

1,440,524

1,483,202

1,342,090

Arkansas

768,612

805,462

799,015

790,029

787,972

790,801

801,192

787,972

California

5,876,564

6,517,570

6,795,666

6,741,276

6,665,465

6,648,112

6,653,416

6,850,939

6,917,900

6,653,416

Colorado

732,816

769,862

836,106

829,414

820,086

817,950

841,994

896,393

915,259

841,994

Connecticut

678,461

650,630

690,715

685,216

677,542

675,805

695,612

720,427

725,688

695,612

Delaware

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

District of

Columbia

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

46,2315

Florida

2,856,147

3,509,166

3,641,185

3,612,042

3,571,422

3,562,124

3,583,358

3,694,231

3,726,609

3,583,358

Georgia

1,657,371

1,885,140

1,904,329

1,889,087

1,867,842

1,862,979

1,962,493

2,118,374

2,173,986

1,962,493

Hawaii

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Idaho

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Illinois

2,656,686

2,669,813

2,648,445

2,618,661

2,617,997

2,624,831

2,625,937

2,638,168

2,624,831

Indiana

1,465,626

1,514,002

1,501,884

1,484,994

1,484,670

1,488,546

1,500,563

1,488,546

Iowa

795,933

756,826

774,177

767,980

765,470

772,161

774,177

Kansas

610,953

621,286

616,313

609,382

612,988

614,589

Kentucky

1,218,231

1,205,456

1,225,694

1,215,884

1,202,210

1,199,080

1,220,209

1,261,526

1,273,371

1,220,209

Louisiana

1,414,383

1,358,920

1,385,313

1,374,225

1,360,252

1,372,141

1,375,723

1,397,179

1,414,387

1,375,723

Maine

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

CRS-13

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Maryland

926,442

1,026,488

1,018,272

1,006,820

1,005,535

1,008,160

Massachusetts

1,311,359

1,308,789

1,367,725

1,356,778

1,341,520

1,338,027

1,363,763

1,395,337

1,406,159

1,363,763

Michigan

2,378,843

2,477,214

2,540,965

2,520,628

2,492,281

2,485,792

2,508,955

2,582,152

2,598,084

2,508,955

Minnesota

1,007,871

1,041,526

1,033,190

1,021,571

1,022,625

1,025,295

Mississippi

938,115

944,426

948,925

941,330

930,744

928,320

957,347

965,076

928,320

Missouri

1,326,270

1,385,181

1,374,094

1,358,641

1,355,103

1,357,989

1,378,273

1,355,103

Montana

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Nebraska

425,955

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Nevada

420,477

450,000

462,315

458,614

457,115

461,111

469,691

487,981

499,458

469,691

New Hampshire

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

New Jersey

1,493,616

1,587,659

1,589,253

1,576,533

1,558,803

1,554,744

1,555,332

1,582,012

1,598,824

1,555,332

New Mexico

462.147

514,035

521,855

517,678

511,856

510,523

New York

4,150,337

4,110,221

4,263,616

4,229,491

4,181,927

4,171,039

4,237,731

4,353,557

4,374,416

4,237,731

North Carolina

1,817,454

1,989,293

1,973,371

1,951,179

1,946,099

194,609

2,059,063

2,127,809

1,946,099

North Dakota

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

2,870,118

2,866,334

2,891,529

2,868,386

2,836,129

2,839,309

2,846,721

2,858,996

2,870,875

2,846,721

Oklahoma

912,780

914,772

907,450

897,245

894,914

897,250

Oregon

703,155

756,326

785,280

778,994

770,233

768,227

770,874

816,531

832,498

770,874

Pennsylvania

3,111,570

3,040,598

3,113,657

3,088,736

3,054,001

3,046,050

3,068,727

3,135,633

3,150,765

3,068,727

Rhode Island

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

South Carolina

1,059,459

1,132,839

1,123,772

1,111,134

1,108,241

1,110,259

1,142,792

1,108,241

South Dakota

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Tennessee

1,443,822

1,516,063

1,517,325

1,505,181

1,488,254

1,484,379

1,487,918

1,505,443

1,518,718

1,487,918

Texas

4,290,573

4,509,851

4,775,777

4,737,553

4,684,275

4,672,079

4,813,721

5,035,776

5,106,030

4,813,721

Utah

521,763

570,336

602,828

598,003

591,278

589,738

613,228

656,015

679,021

613,228

Vermont

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Virginia

1,374,780

1,524,134

1,511,935

1,494,932

1,498,018

1,501,929

Ohio

CRS-14

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Washington

1,066,152

1,165,304

1,196,582

1,187,005

1,173,656

1,170,600

1,189,607

1,240,323

1,259,859

1,189,607

West Virginia

765,828

676,145

772,441

766,258

757,640

755,667

769,832

785,287

788,440

769,832

Wisconsin

1,284,774

1,309,753

1,299,270

1,284,658

1,289,797

1,293,164

1,297,538

1,304,275

1,293,164

Wyoming

420,477

450,000

462,315

458,614

457,115

461,111

462,315

474,013

478,797

462,315

Subtotal

63,681,761

67,838,327

69,611,287

69,054,150

68,259,090

68,310,060

69,012,025

70,821,657

71,561693

69,012,025

American

Samoa

220,752

234,348

240,761

238,834

240,458

240,134

240,761

246,853

249,344

240,761

Guam

220,752

234,348

240,761

238,834

240,458

240,134

240,761

246,853

249,344

240,761

Northern

Mariana Islands

220,752

234,348

240,761

238,834

240,458

240,134

240,761

246,853

249,344

240,761

Puerto Rico

2,373,546

2,358,881

2,506,931

2,488,866

2,478,738

2,500,404

2,506,931

Virgin Islands

220,752

234,348

240,761

238,834

240,458

240,134

240,761

246,853

249,344

240,761

Subtotal

3,256,554

3,296,273

3,469,975

3,430,950

3,460,940

3,469,975

3,494,343

3,504,307

3,469,975

Total

66,938,315

71,134,600

73,081,262

72,496,352

71,771,040

71,771,000

72,482,000

74,316,000

75,066,000

72,482,000

Territories

Sources: U.S. Department of Health and Human Services, Administration for Children & Families final allotment tables at http://www.acf.hhs.gov/programs/add/

grantsandfunding.html.

CRS-15

FY2011 allotments figures are estimates provided by the U.S. Department of Health and Human Services.

Table A-2. Protection and Advocacy Allotments, FY2002 - FY2011 (est.)

(in dollars)

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Alabama

544,401

599,332

627,475

622,778

629,409

624,790

623,313

648,587

665,926

623,973

Alaska

314,319

345,429

365,940

375,316

384,693

365,940

Arizona

454,324

529,268

579,111

581,737

605,431

626,294

645,537

660,675

690,420

651,551

Arkansas

323,364

367,922

387,602

384,321

387,406

385,083

386,366

401,965

413,642

387,025

California

2,776,552

2,978,192

3,181,700

3,162,573

3,247,585

3,269,611

3,303,228

3,352,715

3,429,091

3,268,601

Colorado

344,211

387,881

415,010

411,660

414,511

419,637

429,360

446,725

461,063

433,976

Connecticut

326,619

357,896

378,592

377,613

379,833

378,401

377,744

387,497

397,033

377,168

Delaware

314,319

345,429

365,940

375,316

384,693

365,940

District of

Columbia

314,319

345,429

365,940

375,316

384,693

365,940

Florida

1,404,766

1,603,400

1,745,277

1,731,237

1,786,357

1,818,094

1,808,235

1,832,104

1,871,977

1,785,318

Georgia

766,845

861,232

933,374

919,045

953,198

982,659

1,022,625

1,067,277

1,108,738

1,040,545

Hawaii

314,319

345,429

365,940

375,316

384,693

365,940

Idaho

314,319

345,429

365,940

375,316

384,693

365,940

Illinois

1,113,210

1,219,417

1,284,415

1,268,725

1,307,848

1,291,826

1,305,530

1,339,000

1,363,241

1,304,468

Indiana

631,366

691,560

727,760

722,012

736,909

735,665

740,328

762,544

787,922

744,045

Iowa

320,978

352,266

371,121

369,484

371,021

366,994

367,599

377,062

385,684

369,868

Kansas

314,319

345,429

365,940

375,316

384,693

365,940

Kentucky

503,612

550,505

577,979

572,605

579,004

581,840

589,182

610,814

628,980

593,187

Louisiana

557,936

620,599

646,343

644,750

642,178

645,244

615,577

637,589

646,370

621,757

Maine

314,319

345,429

365,940

375,316

384,693

365,940

Maryland

427,672

468,934

498,207

491,083

488,306

483,737

484,293

490,432

498,544

479,784

Massachusetts

550,395

597,599

621,094

611,440

614,644

599,590

614,459

625,832

638,605

610,465

1,047,124

1,131,229

1,190,195

1,170,213

1,187,867

1,176,513

1,197,768

1,251,870

1,286,252

1,206,328

Michigan

CRS-16

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Minnesota

434,873

475,743

502,232

495,058

502,831

499,792

499,343

512,529

526,142

503,534

Mississippi

387,714

431,326

453,210

445,401

445,181

445,745

447,394

464,679

474,353

448,781

Missouri

574,279

632,709

665,767

658,178

674,067

673,574

679,800

706,635

728,532

686,026

Montana

314,319

345,429

365,940

375,316

384,693

365,940

Nebraska

314,319

345,429

365,940

375,316

384,693

365,940

Nevada

314,319

345,429

365,940

375,316

384,693

365,940

New Hampshire

314,319

345,429

365,940

375,316

384,693

365,940

New Jersey

658,758

725,127

764,947

758,472

765,027

758,626

765,642

780,926

791,726

754,969

New Mexico

314.319

345,429

365,940

375,316

384,693

365,940

New York

1,680,809

1,876,815

1,959,198

1,933,163

1,970,656

1,952,446

1,965,064

1,981,903

2,009,118

1,933,353

North Carolina

810,417

908,709

976,006

966,905

1,004,238

1,026,804

1,045,773

1,083,780

1,124,261

1,058,062

North Dakota

314,319

345,429

365,940

375,316

384,693

365,940

1,207,229

1,309,037

1,369,182

1,352,955

1,377,843

1,359,530

1,373,317

1,403,949

1,438,424

1,379,227

Oklahoma

380,649

417,943

437,177

433,566

429,420

426,890

426,025

437,322

443,924

424,360

Oregon

329,527

365,481

390,425

388,767

396,665

396,213

399,911

417,392

430,091

403,866

Pennsylvania

1,263,351

1,388,495

1,443,211

1,429,450

1,446,328

1,426,488

1,429,202

1,462,797

1,489,586

1,423,902

Rhode Island

314,319

345,429

365,940

375,316

384,693

365,940

South Carolina

465,271

517,436

549,365

541,745

551,953

557,541

563,354

583,782

604,012

571,416

South Dakota

314,319

345,429

365,940

375,316

384,693

365,940

Tennessee

619,765

692,425

732,439

720,876

733,173

733,221

743,002

770,304

795,921

757,679

Texas

1,860,544

2,060,863

2,232,558

2,212,680

2,289,093

2,313,870

2,377,703

2,431,616

2,498,017

2,372,501

Utah

314,319

345,429

365,940

375,316

384,693

365,940

Vermont

314,319

345,429

365,940

375,316

384,693

365,940

Virginia

637,072

696,222

739,346

734,200

740,794

737,259

746,864

759,024

776,734

746,746

Washington

487,689

532,454

567,799

561,124

575,851

589,007

607,232

616,802

634,479

609,722

West Virginia

338,198

371,782

390,425

390,577

390,830

388,670

389,196

395,722

404,155

389,808

Wisconsin

548,445

598,214

629,285

620,380

623,948

621,843

627,494

654,724

670,147

635,125

Ohio

CRS-17

States

FY2002

FY2003

FY2004

FY2005

FY2006

FY2007

FY2008

FY2009

FY2010

FY2011a

Wyoming

314,319

345,429

365,940

375,316

384,693

365,940

Subtotal

30,121,702

33,535,735

35,554,747

35,271,693

35,836,325

35,880,417

36,184,380

37,112,262

38,037,584

36,184,056

American

Samoa

168,175

184,802

195,775

200,791

205,808

195,775

Guam

168,175

184,802

195,775

200,791

205,808

195,775

Northern

Mariana Islands

168,175

184,802

195,775

200,791

205,808

195,775

Puerto Rico

897,039

1,077,750

1,114,058

1,096,931

1,112,264

1,084,348

1,080,265

1,107,303

1,136,896

1,080,589

Virgin Islands

168,175

184,802

195,775

200,791

205,808

195,775

Subtotal

1,569,739

1,816,958

1,897,158

1,880,031

1,895,364

1,867,448

1,863,365

1,910,467

1,960,128

1,863,689

168,175

184,802

195,775

200,791

205,808

195,775

31,859,616

35,537,495

37,647,680

37,347,499

37,927,464

37,943,640

38,243,520

39,223,520

40,203,520

38,243,520

Territories

American Indian

P&A

Total

Sources: CRS table using data from the U.S. Department of Health and Human Services, Administration for Children & Families final allotment tables at

http://www.acf.hhs.gov/programs/add/grantsandfunding.html.

Notes: Total figures exclude any funds withheld for PNS technical assistance centers under §142(a)(6) of the DD Act. Total figures exclude any unused funds realloted

under §142(c) of the DD Act. American Indian Consortiums are eligible to receive an allotment under §142(a)(6)(B) of the DD Act.

CRS-18

FY2011 allotments figures are estimates provided by the U.S. Department of Health and Human Services.

Appendix B. Current Projects of National Significance (PNS)

Project title, brief abstract, institute location, project period and annual funding amounts

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

Ongoing Data Collection and Information Dissemination

The State of the States

in Developmental

Disabilities

A comparative nationwide longitudinal study of public financial

commitments and programmatic trends in developmental

disabilities services and supports.

The Coleman Institute

Department of Psychiatry

University of Colorado

9/30/2007 – 9/29/2012

300,000

State of the States in

Developmental

Disabilities: 2007 –

2011, A Nationwide

Study of Financial and

Programmatic Trends

Extends 17 years of research describing day and employment

services for individuals with developmental disabilities.

Institute for Community

Inclusion

University of

Massachusetts Boston

9/30/2007 – 9/29/2012

299,999

The National Residential

Information System

Program: Ongoing Data

Collection and

Information

Dissemination on

Residential Services for

Persons with

Developmental

Disabilities

Continues more than 20 years of analysis of annual state-by-state

and national statistics on residential services for people with

developmental disabilities (DD), including state and non-state

institutional settings and community and home-based residential

services

Research and Training

Center on

Residential Services and

Community Living

Institute on Community

Integration (UCEDD)

University of Minnesota

9/30/2007 – 9/29/2012

300,000

Family Support 360:

Implementing a OneStop Center, A Project

of National Significance

from the Administration

on Developmental

Disabilities (ADD)

Serves military families who have children with developmental

disabilities and who are assigned or connected to Fort

Richardson Army Installation and Elmendorf Air Force Base, as

well as those attached to National Guard units that are activated

and/or deployed.

Stone Soup Group,

Anchorage, Alaska

9/30/2009 – 9/29/2014

200,000

Project Pendleton - For

Military Families, San

Diego State University

Research Foundation

The goal of the project is to empower and strengthen a military

family’s capacity to assist their child with developmental

disabilities in maximizing their independence, productivity,

integration, and inclusion into the community.

San Diego State University

Research Foundation

Interwork Institute,

San Diego, California

9/30/2008 – 9/29/2013

200,000

Family Support 360

CRS-19

Project Title

Brief Abstract

SE Florida Project 360

for Military Families

In collaboration with U.S. Army Garrison Miami, armed with

technology and a newly developed family assessment tool,

Mailman Center for Child Development (MCCD) will connect

military families living in Southeast Florida to the local resources,

support and services they need using technology.

Parent to Parent of

Georgia’s Navigator 360

Project

Period

Funding/year ($)

University of Miami, SE

Florida Project 360 for

Military Families,

Coral Gables, Florida

9/30/2009 – 9/29/2014

199,979

An human service model that is designed with and involves

families, is easily replicated and is based in the strengths of

private-public partnerships. The vision is that these partnerships

will work collaboratively with families with developmental

disabilities so support systems needed are integrated and

accessible when families need them and ultimately help families

stay together and thrive.

Parent to Parent of

Georgia,. Inc.,

Atlanta, GA 30349-3720

9/30/2009 – 9/29/2014

200,000

The Navigator's

Compass - For Military

Families, University of

Guam

To enhance the capabilities of families to assist their children

with developmental disabilities to achieve their maximum

potential; support the increasing ability of children with

disabilities to exercise greater choice and self-determination and

to engage in leadership activities in their communities; and

ensure the protection of children with disabilities’ legal and

human rights.

University of Guam

Center for Excellence in

Developmental disabilities,

Education, Research &

Service, Mangilao, Guam

9/30/2008 – 9/29/2013

200,000

Iowa Family Support

360 Center

To coordinate and enhance access to Iowa’s fragmented system

of services to children with developmental disabilities and their

families by building a network of navigators with accurate,

consistent and broad based information and resources, who will

serve a local one-stop access points for families.

Iowa Department of

Human Services,

Des Moines, Iowa

9/30/2009 – 9/29/2014

200,000

Family Access to a

Center of Excellence for

Support Services

(FACESS)

Family support 360 Centers empower and strengthen families by

increasing community responsiveness to the immediate needs of

families who have children with developmental disabilities and

promoting community partnerships.

The University of Southern

Mississippi, Hattiesburg,

Mississippi

9/30/2009 – 9/29/2014

200,000

Military Family Support

360 Project - For

Military Families

This project will develop, implement, and evaluate a military and

community based, coordinated and seamless multi-agency onestop center, to assist military families who have children (up to

25 years old) with a developmental disability.

The University of Southern

Mississippi, Hattiesburg,

Mississippi

9/30/2009 – 9/29/2014

200,000

CRS-20

Institute

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

Strengthening Military

Families with Children

who have

Developmental

Disabilities: One Stop

for Family Support - For

Military Families

This project will provide effective family support to active duty

military families with children who have developmental

disabilities who are connected to Camp Lejeune Marine Base.

Military families living off base within the state of North Carolina

will be able to access needed support.

The University of North

Carolina at Chapel Hill,

Chapel Hill, North

Carolina

9/30/2009 – 9/29/2014

200,000

NJ 360 Family Support

Center

Designed to serve teenagers and young adults with

developmental disabilities and their families. The Center’s

primary objective will direct services to persons within the

Latino/Hispanic community of the City of Perth Amboy who

because of cultural, economic and social barriers are traditionally

underserved.

Cerebral Palsy Association

of Middlesex, Inc., Edison,

New Jersey

9/30/2009 – 9/29/2014

200,000

Statewide Parent

Advocacy Network of

New Jersey (SPAN)

Military Family 360

Center - For Military

Families

The Statewide Parent Advocacy Network (SPAN) will provide

support and assistance to a minimum of 30 military families who

have children with developmental disabilities in 2009-2010, and

40 families each year in 2010-2014.

Statewide Parent Advocacy

Network of New Jersey,

Newark, New Jersey

9/30/2009 – 9/29/2014

200,000

Nevada’s Family support

360 Center

Children in the target population are either served in one

system that is able to address only part of their problem or they

are the “unclaimed” children who fall through the cracks and do

not get the services that they require. Because of the complexity

of their needs, rarely can one system provide the comprehensive

services and supports the children and their families require.

Nevada P.E.P., Inc,

Las Vegas, Nevada

9/30/2009 – 9/29/2014

200,000

Fort Hood 360 - For

Military Families, The

University of Texas at

Austin

For military families caring for children with developmental and

other disabilities, to enhance their capability to navigate social

service and educational systems that assist children to achieve

their maximum potential.

Texas Center for Disability

Studies University of Texas

at Austin, Austin, Texas

9/30/2008 – 9/29/2013

200,000

Utah Military Family

Support 360 - For

Military Families

This project will assist with enhancing and strengthening the

capacity of Hill Air Force Base personnel and coordinating

communication between military and civilian systems, The

project will identify the military and civilian supports and services

and guide a coordinated effort based on lessons learned through

Utah’s 360 Support for Families.

Utah State University,

Logan, Utah

9/30/2009 – 9/29/2014

200,000

CRS-21

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

Family Support 360

Family to Family

Network in Virginia

The Partnership’s Center for Family involvement will house the

greater Richmond Virginia Family to Family Network, a one-stop

center where families who have children aged birth to 26 years

with developmental disabilities can receive information and

referral regarding education, early intervention, health care,

disability services and various other community resources.

Virginia Commonwealth

University, Richmond,

Virginia

9/30/2009 – 9/29/2014

200,000

Wraparound 360 Family

Support Project

The ARC of King County will establish a Family Support Center

for low income individuals who are underserved by virtue of

poverty, race, language, or immigration status.

The Arc of King County,

Seattle, Washington

9/30/2009 – 9/29/2014

200,000

PAVE 360 - For Military

Families, Washington

PAVE

Through coordination with its partners, Washington PAVE will

identify families in need of a higher level of support and

assistance than can be provided through current military and

civilian resources.

Washington PAVE,

Tacoma, Washington

9/30/2008 – 9/29/2013

200,000

Youth Information, Training, and Resource Centers

Northwest Arkansas

Youth Center

The Center’s primary goal will be to help people complete their

high school education, pursue post high school education or job

training, seek and maintain employment, build personal assets or

otherwise improve their lives.

Northwest Arkansas

Youth Center,

Springdale, Arkansas

9/30/2007 – 9/29/2010

99,997

Set Yourself Free

Southwest Institute for Families and Children with Special Needs

(SWI) proposes to expand the role of the Arizona Youth Action

Council (YAC-AZ) to initiate the Set Yourself Free project.

Established in 2003, YAC-AZ, organized youth and emerging

leaders with disabilities and special health care needs. YAC-AZ

is virtually linked, has a governance structure, assesses needs and

wants, engages in recreational activities, and participates in AZ

Legislative Awareness events.

Southwest Institute for

Families and Children,

Scottsdale, Arizona

9/30/2007 – 9/29/2010

149,792

Center for Emerging

Leadership: Empowering

Youth, Building

Community, and

Enhancing Lives (CEL)

The overall goal of the Center for Emerging Leadership:

Empowering Youth, Building Community, and Enhancing Lives

(CEL) is to improve community inclusion outcomes for youth

(aged 13-17) and emerging leaders (aged 18-30) with

developmental disabilities through a replicable Empowerment

Model of Peer Mentorship.

Center for Emerging

Leadership

Interwork Institute/San

Diego State University

Research Foundation, San

Diego, California

9/30/2007 – 9/29/2010

149,636

CRS-22

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

National Consortium on

Leadership and

Disability for Youth

(NCLD/Y)

The Institute for Educational Leadership (IEL) serves as a

national youth-led information, training, and resource center. IEL

has a four-pronged focus on working on developing leaders,

developing the capacity of centers for independent living to

serve those leaders, the capacity of the staff working directly

with the leaders, and supporting the cadre of youth with

disabilities-related organizations.

NCLD-Youth

Institute for Educational

Leadership, Washington,

9/30/2007 – 9/29/2010

99,995

Training and Resource

Self Advocacy

Empowerment Center

This project builds on the success of the Training and Resource

Self-Advocacy Empowerment Center for Youth and Emerging

Leaders in the District of Columbia. This initiative provides

District of Columbia youth and emerging leaders training,

opportunities and information on employment, education,

housing, and transportation in the city.

Inclusion Research

Institute, Washington, DC

9/30/2007 – 9/29/2010

100,000

Youth Information,

Training and Resource

Center

In its implementation of the Youth Information, Training and

Resource Centers program, The Family Café will provide youth

and emerging leaders with disabilities in Florida with the

information, supports and resources they need to move from

passenger seat to the driver’s seat when it comes to navigating

their own transition planning.

The Family Café, Inc,

Tallahassee, Florida

9/30/2007 – 9/29/2010

150,000

My Voice, My Choice

“My Voice, My Choice” will create a Youth Information,

Training, and Resource Center to infuse self-advocacy into

existing adult self-advocacy activities in Hawaii and the region.

The center will respond to the following areas of emphasis:

education, employment, and quality assurance (self-advocacy).

The purpose of the Center is to improve education and

employment outcomes for youth by giving them a greater voice

in the development of policies and services that affect their

choices.

University of Hawaii,

Honolulu, Hawaii

9/30/2007 – 9/29/2010

100,000

Center for Youth

Information, Education

and Leadership for

Developmental

Disabilities (YIELDD)

Current AYLP Chicago members and emerging leaders of the

YIELDD leadership training will come together to choose an

issue that affect persons with developmental disabilities. The

new groups will hold forums and network with other

organizations to address the issue(s). The overall outcome is to

ensure the independence of future generations of people with

developmental disabilities.

Access Living of

Metropolitan Chicago,

Chicago, Illinois

9/30/2007 – 9/29/2010

100,000

CRS-23

Project Title

Brief Abstract

The Pathways Center

The primary areas of focus will be employment, education,

housing, and quality assurance. The Pathways Center will expand

eligibility for Pathways Center activities to all youth and

emerging leaders with developmental disabilities (DD) in North

Minneapolis. The Pathways Center will provide youth friendly

products via the IPSII Inc. website, national, state, local forums

and other partners.

Youth LEAD:

Leadership, Education,

and Advocacy for Youth

with Disabilities

Period

Funding/year ($)

IPSII, Inc, Richfield,

Minnesota

9/30/2007 – 9/29/2010

100,000

The overall goal of this project is “to create a sustained

community infrastructure through which to support the

leadership development of youth and merging leaders with

developmental disabilities.” The focus areas of this project are

continuing education, inclusive recreation, and community

employment via person centered planning and mentoring.

Curators, University of

Missouri, Kansas City,

Missouri

9/30/2007 – 9/29/2010

150,000

Youth Information,

Training, and Resource

Centers, Project TRIAD

(Training, Resources

and Information for the

Advancement of

Degrees)

The primary purpose of this project is to assist youth that are

transitioning from school to adult life in accessing postsecondary

training opportunities that will focus on the academic and

leadership development skills necessary for employment, selfdetermination, and community engagement and leadership. The

center will focus on unserved and underserved youth and

emerging leaders enrolled in post-secondary institutions.

University of Southern

Mississippi, Hattiesburg,

Mississippi

9/30/2007 – 9/29/2010

150,000

Montana Transition

Training, Information

and Resource Center

The MT-TIRC activities and outcomes will focus on education,

employment, and inclusive recreation and housing. Through

collaboration with the Montana Advocacy Program,

Developmental Disabilities Council, Office of Public instruction,

Parent Training and Information Center, ADAPT, MonTECH and

the Developmental Disabilities Program, MT-TIRC will increase

access to employment and inclusive community living for young

people with developmental disabilities.

Rural Institute on

Disabilities, University of

Montana, Missoula,

Montana

9/30/2007 – 9/29/2010

150,000

Youths for Advocacy

(Y4A)

Youth 4 Advocacy (Y4A) is a three-year Youth Information,

Training and Resource Center project designed to link youths

with developmental disabilities and emerging leaders across

North Carolina, empowering youths to transition successfully

from school to adult life in their communities.

University of North

Carolina – Chapel Hill,

Chapel Hill, North

Carolina

9/30/2007 – 9/29/2010

100,000

Center on Youth

Empowerment Services

(YES)

YES will serve as a source of information and referral for youth

and young adults with developmental disabilities. YES will also

provide leadership and self-advocacy training to 15 young people

annually, aged 16-24 through its Youth Leadership Series, and

also enroll them in two transition related planning and support

systems.

Institute on Disabilities

University of New

Hampshire, Concord, New

Hampshire

9/30/2007 – 9/29/2010

139,186

CRS-24

Institute

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

El Poder de Los Jovenes

(Empowerment of

Youth)

The Arc of New Mexico goal is to promote positive outcomes

for young people with developmental disabilities in the areas of

education, employment, transportation, and healthy lifestyles.

The Arc of New Mexico,

Albuquerque, New Mexico

9/30/2007 – 9/29/2010

100,000

Oklahoma Alliance for

Youth

The Oklahoma Alliance for Youth (OKAY) proposed to create

new exemplary practices and products to support youth and

adult with developmental disabilities in self-advocacy, leadership,

health, and transportation.

Oklahoma Alliance for

Youth National Center for

Disability Education &

Training, University of

Oklahoma, Norman,

Oklahoma

9/30/2007 – 9/29/2010

100,000

Oregon Emerging Youth

Leaders Consortium

This project will address the need for full participation in daily

life and active community engagement by youth and young adults

using a multi-agency, multi-model approach. The project will

develop a community and web-based youth information, training,

and resource center that address multiple areas.

Incight Company,

Portland, Oregon

9/30/2007 – 9/29/2010

100,000

National Youth

Leadership Network

(NYLN), National

Youth Information

Center (NYIC)

The NYIC will serve as a support for state YIC development in

North Carolina, New York, and Idaho; for curriculum and

resource development; for organizational collaboration, public

awareness, education, , and outreach; and for information

exchange, empowerment, full inclusion and accessibility. These

efforts will place specific emphasis on outreaching to and

including young people with underrepresented disabilities (i.e.,

cognitive, psychological, emotional), culturally diverse youth, and

areas of need (i.e., areas of low socioeconomic status, rural

communities).

National Youth Leadership

Network, Pierre, South

Dakota

9/30/2007 – 9/29/2010

150,000

Becoming Leaders for

Tomorrow (BLT)

The three areas of emphasis for the BLT project are education,

employment, and health. The targeted communities that would

most benefit from this project are youth (aged 13-17) and young

adults (aged 18-30) with developmental disabilities and their

families who have completed the application process for the

Division of Services for People with Disabilities, but have been

placed on the "waiting list."

Center for Persons with

Disabilities, Utah State

University, Logan, Utah

9/30/2007 – 9/29/2010

100,000

Virginia Center for SelfAdvocacy Leadership

The Virginia Center for Self-Advocacy Leadership will provide

information, training, and resources to increase self-advocacy

leadership skills. The target groups are youth (aged 13 to 17)

and young adults (aged 18 to 30) who are emerging leaders,

including individuals living in poverty or from unserved or

underserved communities.

Partnership for People

with Disabilities

Virginia Commonwealth

University, Richmond,

Virginia

9/30/2007 – 9/29/2010

147,184

CRS-25

Project Title

Brief Abstract

Institute

Period

Funding/year ($)

Wisconsin Youth

Information Training

and Resource Center

The Wisconsin Youth Information and Training and Resource

Center (YITRC) is a three-year project, built on a collaborative

partnership of four core agencies: Wisconsin Family Assistance

Center for Education & Training Support, Inc, Independence

First, a Developmental Network Partner, and Department of

Vocational Rehabilitation. WI FACETS proposed to establish a

community-based center which will (1) deliver intensive training,

information and support to Milwaukee area young adults with

developmental disabilities (aged 13-30) and (2) build community

awareness and capacity so that young adults with developmental

disabilities are able to pursue self-directed adult lives which are

independent, healthy and rich with community involvement.

WI FACETS, Milwaukee,

Wisconsin

9/30/2007 – 9/29/2010

112,500

The Medicaid Reference Desk Project continues the design and

implementation of an interactive website to provide people with

developmental disabilities, their families, and others with timely,

accurate state and national level information on Medicaid

services. The project will serve as a nationwide resource by

providing research, translation, and audio/video recording of

comprehensive Medicaid information for each state and

territory.

The Arc of the United

States, Silver Spring,

Maryland

9/30/2007 – 9/29/2012

150,000

Medicaid

The Medicaid Reference

Desk: A Web-Based

Information Resource

for Adults and Children

with Developmental

Disabilities, Families,

Service Brokers, Service

Providers, and

Policymakers

Source: U.S. Department of Health and Human Services, Administration for Children & Families.

Notes: This CRS table excludes information on PNS technical assistance centers. PNS abstracts have been shortened in this CRS report for brevity. For full abstracts on

active PNS grants see http://www.acf.hhs.gov/programs/add/pns/pns.html.

CRS-26

The Developmental Disabilities Act

Appendix C. Acronym Glossary

Acronym

Term

ACF

Administration for Children and Families

ADAPT

American Disabled for Attendant Programs Today

ADD

Administration on Developmental Disabilities

AUCD

Association of University Centers on Disabilities

CDC

Centers for Disease Control and Prevention

Developmental Disabilities

DDPIE

Developmental Disabilities Program Independent Evaluation

Fiscal Year

GPRA

Government Performance and Results Act

HHS

Health and Human Services

H.R.

House of Representatives

ICF/MR

Intermediate Care for the Mentally Retarded

NCD

National Council on Disability

P&A

Protection and Advocacy

PART

Program Assessment Rating Tool

P.L.

Public Law

PNS

Projects of National Significance

SCDDs

State Councils on Developmental Disabilities

UCEDDs

University Centers for Excellence in Developmental Disabilities

VOR

Voice of the Retarded

Author Contact Information

(name redacted)

Analyst in Disability Policy

[redacted]@crs.loc.gov, 7-....

Acknowledgments

This report was updated with research assistance from Armaad Norman, and it expands a report that was

originally written by (name redacted) and updated by Scott Szymendera. Janet L. Valluzzi contributed

to earlier versions of this report.

Congressional Research Service

EveryCRSReport.com

The Congressional Research Service (CRS) is a federal legislative branch agency, housed inside the

Library of Congress, charged with providing the United States Congress non-partisan advice on

issues that may come before Congress.

EveryCRSReport.com republishes CRS reports that are available to all Congressional staff. The

reports are not classified, and Members of Congress routinely make individual reports available to

the public.

Prior to our republication, we redacted names, phone numbers and email addresses of analysts

who produced the reports. We also added this page to the report. We have not intentionally made

any other changes to any report published on EveryCRSReport.com.

CRS reports, as a work of the United States government, are not subject to copyright protection in

the United States. Any CRS report may be reproduced and distributed in its entirety without

permission from CRS. However, as a CRS report may include copyrighted images or material from a

third party, you may need to obtain permission of the copyright holder if you wish to copy or

otherwise use copyrighted material.

Information in a CRS report should not be relied upon for purposes other than public

understanding of information that has been provided by CRS to members of Congress in

connection with CRS' institutional role.

EveryCRSReport.com is not a government website and is not affiliated with CRS. We do not claim

This is a copy of a public record, reproduced as it was published. It is not legal advice, and it may not be the version a court would rely on. Check the official source before you cite it.