The Developmental Disabilities Act

The Developmental Disabilities Act
Updated June 26, 2008
Andrew R. Sommers
Analyst in Public Health and Epidemiology
Domestic Social Policy Division

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, which it defines as severe, life-long disabilities
attributable to mental and/or physical impairment. Authorizations of appropriations
for the DD Act programs expired at the end of FY2007. A bill to reauthorize the DD
Act has not been introduced in this session, though a number of amendments to the^th
DD Act have been proposed during the 110 Congress (H.R. 1881, H.R. 2839, H.R.

3995, S. 937).

The DD Act aims to help individuals with developmental disabilities maximize
their potential through increased independence, productivity, inclusion, and
integration into the community. The Act authorizes appropriations for (1) State
Councils on Developmental Disabilities, (2) each state’s Protection and Advocacy
system for individuals with developmental disabilities, (3) University Centers for
Excellence in Developmental Disabilities, and (4) Projects of National Significance.
These grant programs are designed to help state governments, local communities, and
private sector organizations provide developmentally disabled persons with health
care services (e.g., diagnosis, therapy, early intervention), education, employment
training, and recreational or leisure opportunities.
The Administration’s FY2009 budget proposal requests $162.6 million for the
DD Act programs, which would represent no change from the FY2008 level of
funding. Action is pending on the appropriations bills in both the House and the
Senate. This report will be updated as legislative developments warrant.

Contents
Background ......................................................1
DD Act Programs..................................................2
State Councils on Developmental Disabilities........................2
Protection and Advocacy (P&As).................................3
University Centers for Excellence in Developmental Disabilities
Education, Research, and Service (UCEDDs)....................5
Projects of National Significance (PNS)............................5
New Programs Authorized.......................................6
Funding .........................................................6
Legislation in the 110^th Congress......................................7
Appendix. Allotments for State DD Councils and Protection and
Advocacy Programs, FY2000-FY2008............................10
List of Tables
Table 1. Protection and Advocacy Systems..............................4
Table 2. Developmental Disabilities Programs: Appropriations for
FY2000-FY2009 ..............................................7
Table 3. State Developmental Disabilities Council Allotments for
FY2000-FY2008 .............................................10
Table 4. Protection and Advocacy Allotments for FY2000-FY2008.........13

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. The aim of the programs established by the DD Act is to help persons
with developmental disabilities maximize their work potential, facilitate their ability
to live independently, and foster their integration into the community. The protection
of the legal rights of persons with developmental disabilities is another major
objective of the DD Act. The current law encourages coordination and collaboration
among a state’s developmental disabilities council, various independent living
centers, and its protection and advocacy system. Although the 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 developmental disabilities.
The Administration on Developmental Disabilities (ADD), part of the Administration
for Children and Families in the Department of Health and Human Services, 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 then amended generally and completely reorganized by P.L.

98-527 in 1984. Congress last reauthorized the Developmental Disabilities¹

Assistance and Bill of Rights Act (P.L. 106-402) in 2000. Authorizations of
appropriations for the DD Act programs expired at the end of FY2007. A bill to^th
reauthorize the DD Act has not been introduced in the 110 Congress.
According to the ADD, there are approximately 4.5 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 are
manifest prior to adulthood. Section 102(8) of the Act defines developmental
disabilities as severe, life-long disabilities attributable to mental and/or physical
impairments, manifested before age 22. These impairments must result in substantial
limitations in three or more of the following areas of major life activities: capacity
for independent living, economic self-sufficiency, learning, mobility, receptive and
expressive language, self-care, and self-direction.

¹ All sections referenced in this report are part of this Act unless otherwise noted. It is
codified in 42 U.S.C. 15001 et seq.
² See [http://www.acf.hhs.gov/programs/add/Factsheet.html].

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 developmental disabilities, 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 programs authorized under the DD Act, including State
Councils on Developmental Disabilities, Protection and Advocacy systems,
University Centers for Excellence in Developmental Disabilities, and Projects of
National Significance. These grant programs are designed to help state governments,
local communities, and private sector organizations provide health care services,
educational opportunities, and employment training to persons with developmental
disabilities. A funding history for each of these programs is included is Table 2;
Table 3 and Table 4 in the Appendix detail allotments for State Councils on
Developmental Disabilities and for Protection and Advocacy systems, respectively,
by state and U.S. territory.
DD Act Programs
State Councils on Developmental Disabilities
Each state and U.S. territory receives funding to establish a State Council on
Developmental Disabilities (SCDD), which is expected to develop and implement
a comprehensive statewide plan for delivering services to individuals with
developmental disabilities (and their families), especially those not otherwise served⁴
under existing health and welfare programs. 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 developmental disabilities (DD), immediate relatives of
persons with 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, public education
campaigns, outreach to employers, and the provision of information to policy makers.

³ §102(8) of the Act (42 U.S.C. 15002(8)).
⁴ §§121-129 of the Act (42 U.S.C. 15021-15029).

Funds are allotted to states and territories on the basis of population, extent of
need for services for persons with developmental disabilities, and the financial needs
of the respective states (see Table 3).⁵ The DDS Act of 2000 (P.L. 106-402)
amended the established minimum allotments for states and territories. P.L. 106-402
stipulates that in years when total appropriations for SSCDs are less than or equal to
$70 million, each state will receive at least $400,000 from this program; each
territory, $210,000. When appropriations exceed $70 million, minimum allotments
for states and territories will be $450,000 and $220,000, respectively.⁶ 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 projects⁷
conducted by Council members or staff to implement state plan activities, the federal
share may be up to 100% of the aggregate necessary cost of such activities.
Total FY2008 funding for the State Councils on Developmental Disabilities was
$72.5 million; the President’s FY2009 budget request for these organizations is for
the same amount.
Protection and Advocacy (P&As)
As a condition for receipt of state grants for developmental disabilities councils,
states must have in effect a system to protect and advocate for the rights of⁸
individuals with developmental disabilities. P&As provide information and referral
services and investigate reported incidents of abuse and neglect of individuals with
developmental disabilities. 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 developmental disabilities. There are 57 protection
and advocacy (P&A) systems in the United States. Each state (50), each U.S.
territory (5), the District of Columbia (1), and Indian tribes (1) receive P&A funding.
Appropriations for all except Indian tribes are detailed in Table 4.

⁵ 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 to 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.
⁶ 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 fiscal year 2000, 2001, or

2002, whichever is greater.”

⁷ “State plan” activities include, but are not limited to, outreach activities, training for
persons with developmental disabilities, technical assistance, public education efforts,
interagency coordination activities, and research that would inform policy makers about the
needs of persons with developmental disabilities.
⁸ §§121-129 of the Act (42 U.S.C. 15001-15029).

Funds for protection and advocacy systems are allotted on the same basis as the
SSCDs, 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 the current law continues those minimum allotments.⁹
Although the DD Act provides a mandate for protection and advocacy of
persons with developmental disabilities, other federal laws with similar mandates
provide protection and advocacy services for similarly vulnerable populations. Table
1 lists protection and advocacy programs that serve persons with developmental
disabilities and are administered by federal agencies. These P&A programs require
the P&A system designated under the DD Act to implement their program.
Table 1. Protection and Advocacy Systems
^Program^Admⁱ^nis^t^{ering Agency}
^P&^A^f^o^{r In}^di^vⁱ^du^al^s^wⁱ^t^h^D^e^v^e^l^opm^en^t^a^l^A^d^mⁱⁿⁱ^str^a^tioⁿ^oⁿ^Dev^e^lo^p^m^en^{tal Disab}^ilities
^Disab^{ilities (}^P^A^DD)^Departm^eⁿ^t^of^Health^an^{d Hu}^m^aⁿ^Serv^ices
^P^&^A^f^o^r^Vo^tin^g^A^{ccess (}^P^A^V^A⁾^A^d^mⁱⁿⁱ^str^a^tioⁿ^oⁿ^Dev^e^lo^p^m^en^{tal Disab}^ilities
^Departm^eⁿ^t^of^Health^an^{d Hu}^m^aⁿ^Serv^ices
^P^&^A^f^o^r^Iⁿ^dⁱ^vⁱ^d^u^{als w}^ith^Men^t^{al I}^lln^ess^Su^bs^tan^{ce A}^b^u^s^{e an}^{d Men}^t^{al Health}^Serv^ices
^(P^A^I^MI)^A^d^mⁱⁿⁱ^str^a^tioⁿ
^Departm^eⁿ^t^of^Health^an^{d Hu}^m^aⁿ^Serv^ices
^P^&^A^f^o^r^Iⁿ^dⁱ^vⁱ^d^u^{al Rig}^h^t^{s (}^P^A^I^R)^Reh^a^b^ilitatioⁿ^Ser^v^{ices A}^d^mⁱⁿⁱ^str^a^tioⁿ
^D^e^part^m^eⁿ^t^of^Edu^catⁱ^oⁿ
^P^&^A^f^o^r^A^ssistiv^{e T}^echⁿ^o^lo^g^y⁽^P^A^A^T⁾^R^eh^ab^ilitatioⁿ^Ser^v^{ices A}^d^mⁱⁿⁱ^str^a^tioⁿ
^D^e^p^a^r^t^m^e^nt^o^f^E^d^uc^a^tⁱ^oⁿ
^P^&^A^f^o^{r B}^eⁿ^e^fⁱ^ciaries^of^{Social Secu}^rity^{Social Secu}^rity^A^d^mⁱⁿⁱ^s^t^ration
⁽^P^A^B^SS)
^P^&^A^f^o^r^Iⁿ^dⁱ^vⁱ^d^u^{als w}^ith^T^r^au^m^a^{tic B}^r^ain^Health^R^e^s^o^u^r^ces^an^{d Serv}^ices^A^d^mⁱⁿⁱ^s^t^ration
^In^j^u^ry^(P^A^T^BI)^Departm^eⁿ^t^of^Health^an^{d Hu}^m^aⁿ^Serv^ices
^Source:^St^at^{e Pr}^ot^ectⁱ^{on and Advocacy A}^g^eⁿ^cⁱ^es^Sys^t^em^s^Fact^Sheet^,^A^d^mⁱⁿⁱ^st^r^a^tⁱ^o^{n o}ⁿ
^Dev^e^lo^p^m^en^{tal Disab}^{ilities, Un}^ited^{States Dep}^a^rtm^eⁿ^t^o^f^Health^an^d^Hu^m^aⁿ^Serv^ices,^Decem^b^e^r⁶^,
^{2006, at [h}^ttp://^www.^a^c^f^.^h^h^s^.^g^o^v^/^p^r^o^g^r^a^m^s^/^a^d^d^/^s^t^a^t^e^s^/^pⁿ^a^f^a^c^t^s^h^e^e^t^.^h^t^m^l^]^.
Total FY2008 funding for the P&A programs, authorized by the DD Act, was
$39.0 million; the President’s FY2009 budget request for P&As is for the same
amount.

⁹ When appropriations for the Protection and Advocacy program do not exceed $20 million,
the minimum allotments are $150,000 for each state and $80,000 for each territory.

University Centers for Excellence in Developmental
Disabilities Education, Research, and Service (UCEDDs)
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) that provide training and
technical assistance, and engage in translational research with a focus on meeting the
needs of people with developmental disabilities. 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 live¹⁰
independently and lead economically productive lives.
UCEDD grants are awarded on a competitive basis for a period of five years.
Currently, there are 67 such Centers for Excellence across the nation.¹¹ According¹²
to the statute, existing UCEDDs receive first priority when DD act funding is being
distributed.¹³ The FY2008 appropriation for the UCEDDs was $36.9 million; the
Administration’s FY2009 request is identical to the previous year’s appropriation.
Projects of National Significance (PNS)
This program funds grants or contracts to public nonprofit institutions to
enhance the independence, productivity, and social inclusion of people with
developmental disabilities. Projects of National Significance differ from the DD
Council and P&A programs, because PNS activities focus on emerging areas of
concern, on issues that transcend the border of particular states and territories.¹⁴ Such
projects may (1) provide support services for families of individuals with
developmental disabilities; (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 developmentally disabled individuals, or research exploring the

¹⁰ §§125-129 of the Act (42 U.S.C. 15025-15029).
¹¹ A complete directory of UCEDDs is available online at [http://www.aucd.org/directory/
displayallprog.cfm?program= UCEDD&CFID=15386&CFT OK EN=58012620].
¹² P.L. 106-402, §152, (42 U.S.C. 15062).
¹³ If each of the existing Centers reaches a maximum 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. This situation last occurred in FY2008. The
activities identified in the DD Act as appropriate recipients of the additional funding are (1)
National Training Initiatives and (2) grants for additional Centers, or increased funding for
Centers that operate in areas of high need.
¹⁴ §§161-163 of the Act (42 U.S.C. 15081-15083).

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 FY2008 totaled $14.2 million; the President’s
budget for FY2009 requested the same amount. This funding would support 56
grants for youth activities, family support activities, data collection, evaluations of
all the DD Act programs, and programs focused on emerging issues of concern for
the disability community such as emergency preparedness.
New Programs Authorized
In addition to reauthorizing the existing programs described above, the
Developmental Disabilities Assistance and Bill of Rights 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.¹⁵
Title III authorized one scholarship program to provide vouchers for post-secondary
education for direct support workers who assist individuals with developmental
disabilities, and a second grant program for the development, evaluation, and
dissemination of a staff development curriculum.¹⁶
Funding
The DD Act of 2000 authorized the following amounts for FY2001: $76 million
for the State Councils on Developmental Disabilities, $32 million for Protection and
Advocacy, $30 million for the University Centers of Excellence, $16 million for
Projects of National Significance, and $800,000 each for the new scholarships and
staff development curriculum grants. The Act authorized such sums as may be
necessary for these programs for FY2002 through FY2007. Authorization for the
staff development curriculum lapsed after FY2003, while such sums as may be
necessary were authorized through FY2007 for the family support program. 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 Projects of National Significance.¹⁷
Congress approved $162.6 million for DD Act programs for FY2008. Table
2 (below) shows the recent history of appropriation levels for the programs funded
by the Act. Appropriations for all the DD Act’s programs have increased from
$122.3 million in FY2000 to $162.6 for FY2008. Table 3 and Table 4 in the
Appendix provide FY2000-FY2009 appropriation levels for the Developmental

¹⁵ §§202-212 of the Act (42 U.S.C. 15091-15101). For program details, see
[ ht t p: / / www.acf .hhs.gov/ pr ogr ams/add/ pns/ f s360f act sheet .ht ml ] .
¹⁶ §§304-305 of the Act (42 U.S.C. 15114-15115).
¹⁷ 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].

Disabilities Councils and for Protection and Advocacy programs, respectively, by
state and territory.
Table 2. Developmental Disabilities Programs:
Appropriations for FY2000-FY2009
($ in millions)
^Protection^Projects^of
^Fis^c^al^Dev^e^lo^pm^enta^l^a^nd^N^a^ti^on^al^a
^Yea^r^Disa^bilit^{ies Co}^uncils^Adv^o^c^a^c^y^UCE^DDs^Sigⁿ^if^icaⁿ^ce^To^t^a^l
²⁰⁰⁰^65.8^28.1^18.2^10.2^122.3
²⁰⁰¹^67.8^33.0^21.8^10.9^133.5
²⁰⁰²^69.8^35.0^24.0^11.6^140.4
²⁰⁰³^71.1^36.3^25.0^12.4^144.8
²⁰⁰⁴^73.1^38.4^26.8^11.6^149.9
²⁰⁰⁵^72.5^38.1^31.5^11.5^153.7
²⁰⁰⁶^71.8^38.7^33.2^11.4^155.0
²⁰⁰⁷^71.8^38.7^33.2^11.4^155.1
²⁰⁰⁸^72.5^39.0^36.9^14.2^162.6
^{2009 req.}^72.5^39.0^36.9^14.2^162.6
^Source:^P^u^b^lish^e^d^an^d^uⁿ^p^u^b^lish^e^d^coⁿ^g^r^essioⁿ^{al d}^o^c^u^m^en^{ts an}^d^th^{e b}^u^d^g^{et j}^u^stif^icatioⁿ^f^o^r^th^e
^A^d^mⁱⁿⁱ^str^a^tioⁿ^f^o^r^Ch^ild^r^eⁿ^an^d^Fam^{ilies, HHS.}
^a.PNS funding includes appropriations for the Family Support Program (FY2001- FY2009).
Legislation in the 110^th Congress
Legislation that directly relates to the Developmental Disabilities Assistance and
Bill of Rights Act has been introduced in the 110^th Congress. H.R. 2839 was
introduced by Representative Barney Frank in June 2007. This bill would amend the
DD Act to require State Councils on Developmental Disabilities and Protection and
Advocacy organizations 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
organizations. H.R. 2839 was referred to the House Energy and Commerce
Committee, Subcommittee on Health.
H.R. 3995 was also introduced by Representative Frank, intended as a substitute
for H.R. 2839. H.R. 3995 reverses the centerpiece of H.R. 2839 — its “opt-in”
provision. Introduced in October 2007, H.R. 3995 requires federally funded
organizations representing plaintiffs in a class action to give notice to any
Intermediate Care Facility for the Mentally Retarded (ICF/MR) that is named in said

lawsuit.¹⁸ In turn, this ICF/MR would be obliged to give notice of the proposed
action to its residents or their legal guardians. Each resident would then have the
right to “opt-out” of the suit before it is filed. H.R. 3995 was referred to the House
Committee on the Judiciary.
Paralleling the bills introduced by Representative Frank, the Administration on
Developmental Disabilities has recently proposed a new rule that would modify the
implementation regulations for the DD Act. Specifically, the Department of Health
and Human Services (HHS) is seeking 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.”¹⁹ In
addition, HHS has asked for feedback about how to handle situations in which there
is a difference of opinion between the individual with a developmental disability and
his or her guardian regarding whether to become a member of a class action lawsuit.
The underlying objective of H.R. 2839, H.R. 3995, and the proposed regulations
discussed above is 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.²⁰ VOR contends that
some low-functioning persons would have preferred to remain in an institutional
setting and would have been able to do so, if P&As had been required to secure the
approval of the families (or guardians) of these developmentally disabled individuals
before filing class action suits “on their behalf.”²¹
By contrast, organizations like 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,

¹⁸ 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.
¹⁹ Department of Health and Human Services, Notice of Proposed Rulemaking (NPRM), 45
CFR Parts 1385, 1386, 1387, and 1388, Developmental Disabilities Program, Federal
Register, vol. 73, no. 70 (April 10, 2008), pp. 19707-19741, at [http://www.acf.hhs.gov/
programs /add/NPRM.html ].
²⁰ For some evidence of higher mortality rates among persons with DD who were transferred
out of ICFs/MR, see Robert Shavelle, David Strauss, and Steve Day, “Deinstitutionalization
in California: Mortality of Persons with Developmental Disabilities after Transfer into
Community Care, 1997-1999,” Journal of Data Science, vol. 3 (2005), pp. 371-380.
²¹ Mary McTernan, The Need for Immediate Reforms, Elk Grove, Illinois, January 2007, at
[http://vor.net/V ORDDAct2007Presentation2.doc].

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. 2839.²²
Finally, the Expanding the Promise for Individuals With Autism Act of 2007 (S.
937, H.R. 1881) deals with DD Act programs. Sponsored by Senator Hillary
Rodham Clinton and Representative Mike Doyle, respectively, these companion bills
would award 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
systems 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 give additional monies to SCDDs and P&A organizations for the purposes of
funding services specifically geared towards autistic individuals.

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

CRS-10
Appendix. Allotments for State DD Councils and Protection and
Advocacy Programs, FY2000-FY2008
Table 3. State Developmental Disabilities Council Allotments for FY2000-FY2008
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
^a^t^es
^abam^a^$1,262,258^$1,280,704^$1,283,663^$1,312,274^$1,315,925^$1,315,925^$1,303,⁷⁴⁹^$1,287,350^$1,304,421
^as^k^a^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
ⁱ^z^on^a^852,424^864,880^1,056,129^1,144,633^1,^285,145^1,285,145^1,273,²⁵⁴^1,257,240^1,342,090
^k^aⁿ^s^as^736,835^747,603^762,418^805,⁴⁶²^805,462^805,462^798,009^787,972^787,972
ⁱ^{ki/CRS-RL34507}^lⁱ^f^ornⁱ^a⁵^,577,058^5,658,558^6,543,380^6,517,⁵⁷⁰^6,795,666^6,795,666^6,^732,793^6,648,112^6,653,416
^g/w^l^o^rado^702,519^712,785^733,877^769,⁸⁶²^836,106^836,106^828,370^817,950^841,994
^s^.orⁿⁿ^ectⁱ^c^u^t^636,590^645,893^639,635^650,⁶³⁰^690,715^690,715^684,377^675,805^695,612
^le^ak
^l^a^w^a^re^403,093^408,984^446,374^450,⁰⁰⁰^462,315^462,315^461,733^461,111^462,315
^://wiki^s^t^{. of}^C^o^l^u^m^bⁱ^a^403,093^408,984^446,³⁷⁴^450,000^462,315^462,315^461,733^461,111^462,315
^h^ttp
^ori^d^a²^,738,067^2,778,080^3,311,207^3,509,166^3,641,185^3,641,185^3,607,⁴⁹⁷^3,562,124^3,583,358
^orgⁱ^a¹^,588,851^1,612,070^1,807,722^1,885,140^1,904,329^1,904,329^1,866,⁷¹⁰^1,862,979^1,962,493
^w^aⁱⁱ^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
^o^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
^ois²^,546,852^2,584,071^2,^624,831^2,669,813^2,669,813^2,669,⁸¹³^2,645,112^2,617,997^2,624,831
^di^an^a¹^,405,033^1,425,566^1,488,546^1,514,002^1,514,002^1,514,002^1,499,⁹⁹⁴^1,484,670^1,488,546
^a^763,027^774,177^743,276^756,826^774,177^774,177^773,202^772,161^774,177
ⁿ^s^as^585,694^594,253^614,589^621,286^621,286^621,286^615,537^612,988^614,589
ⁿ^t^u^c^k^y^1,167,866^1,184,933^1,187,596^1,205,456^1,225,694^1,225,694^1,214,³⁵⁴^1,199,080^1,220,209
^uⁱ^sⁱ^an^a¹^,355,909^1,375,723^1,315,691^1,358,⁹²⁰^1,385,313^1,385,313^1,^373,991^1,372,141^1,375,723
ⁿ^e^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315

CRS-11
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
^l^aⁿ^d^888,140^901,119^1,008,160^1,026,488^1,^026,488^1,026,488^1,016,⁹⁹⁰^1,005,535^1,008,160
^s^ach^u^s^et^t^s^1,232,540^1,250,⁵⁴³^1,298,126^1,308,789^1,367,725^1,^367,725^1,355,070^1,338,027^1,363,763
^chⁱ^g^an^2,260,428^2,293,461^2,469,330^2,477,214^2,540,965^2,540,965^2,517,⁴⁵⁶^2,485,792^2,508,955
ⁿⁿ^e^s^o^t^a^966,203^980,322^1,025,295^1,041,526^1,^041,526^1,041,526^1,031,⁸⁸⁹^1,022,625^1,025,295
^s^sⁱ^s^sⁱ^ppi^899,331^912,473^914,238^944,⁴²⁶^948,925^948,925^940,145^928,320^928,320
^s^s^o^u^rⁱ¹^,271,438^1,290,019^1,353,961^1,385,181^1,385,181^1,385,181^1,372,³⁶⁵^1,355,103^1,355,103
^t^an^a^403,093^408,984^446,374^450,⁰⁰⁰^462,315^462,315^461,733^461,111^462,315
^bras^k^a^408,345^414,312^446,374^450,⁰⁰⁰^462,315^462,315^461,733^461,111^462,315
^v^a^da^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^469,691
^w^H^a^m^p^s^hⁱ^r^e^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
ⁱ^{ki/CRS-RL34507}^w^Jers^ey^1,431,866^1,452,791^1,553,320^1,587,⁶⁵⁹^1,589,253^1,589,253^1,^574,549^1,554,744^1,555,332
^g/w^w^Mexⁱ^co^443,040^449,515^490,241^514,⁰³⁵^521,855^521,855^571,026^510,523^510,523
^s^.or
^le^ak^w^Y^o^rk^3,978,194^4,036,228^3,964,223^4,110,221^4,263,616^4,263,616^4,224,¹⁶⁹^4,171,039^4,237,731
^rt^h^C^a^rolⁱⁿ^a¹^,742,316^1,767,777^1,910,719^1,^989,293^1,989,293^1,989,293^1,^970,887^1,946,099^1,946,099
^://wiki^rt^h^D^a^k^o^t^a^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
^h^ttp
ⁱ^o^2,751,460^2,791,669^2,846,721^2,866,334^2,^891,529^2,891,529^2,864,⁷⁷⁶^2,839,309^2,846,721
^l^a^h^o^m^a^875,043^887,831^897,250^914,⁷⁷²^914,772^914,772^906,308^894,914^897,250
^eg^on^674,084^683,935^729,341^756,326^785,280^785,280^778,013^768,227^770,874
ⁿ^s^y^l^v^aⁿⁱ^a²^,982,930^3,026,⁵²¹^2,979,345^3,040,598^3,113,657^3,^113,657^3,084,849^3,046,050^3,068,727
^{ode Is}^l^aⁿ^d^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
^u^t^h^C^a^rolⁱⁿ^a¹^,015,658^1,030,500^1,097,001^1,^132,839^1,132,839^1,132,839^1,^122,357^1,108,241^1,108,241
^u^t^h^D^a^k^o^t^a^403,093^408,984^446,374^450,000^462,315^462,315^461,733^461,111^462,315
ⁿⁿ^e^s^s^e^e¹^,384,131^1,404,358^1,461,395^1,516,063^1,517,325^1,517,325^1,503,²⁸⁷^1,484,379^1,487,918
^x^a^s⁴^,113,190^4,173,299^4,384,764^4,509,851^4,775,777^4,775,777^4,731,⁷⁷⁷^4,672,079^4,813,721
^ah^500,192^507,501^545,015^570,336^602,828^602,828^597,250^589,738^613,228
^rm^on^t^403,093^408,984^446,374^450,⁰⁰⁰^462,315^462,315^461,733^461,111^462,315

CRS-12
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
^rgⁱⁿⁱ^a^1,317,943^1,337,203^1,501,929^1,524,134^1,524,134^1,524,134^1,510,⁰³²^1,498,018^1,501,929
^hⁱⁿ^g^t^on^1,022,074^1,037,010^1,149,422^1,165,304^1,196,582^1,196,⁵⁸²^1,185,511^1,170,600^1,189,607
^t^Vⁱ^rgⁱⁿⁱ^a^728,693^739,342^674,547^676,145^772,441^772,441^765,293^755,667^769,832
^s^c^on^sⁱⁿ¹^,231,658^1,249,657^1,293,164^1,309,⁷⁵³^1,309,753^1,309,753^1,^297,635^1,289,797^1,293,164
^omⁱⁿ^g^403,093^408,984^446,374^450,⁰⁰⁰^462,315^462,315^461,733^461,111^462,315
^t^ates^61,681,182^62,582,458^66,355,677^67,838,327^69,611,287^69,611,287^69,064,578^68,310,060^69,012,025
^eri^can^S^a^m^o^a^211,625^214,718^234,³⁴⁸^234,348^240,761^240,761^240,458^240,134^240,761
^am^211,625^214,718^234,348^234,348^240,761^240,761^240,458^240,134^240,761
^h^e^rn^Mari^an^a
ⁱ^{ki/CRS-RL34507}^aⁿ^d^s^211,625^214,718^234,348^234,³⁴⁸^240,761^240,761^240,458^240,134^240,761
^g/w^ert^o^Rⁱ^co^2,275,418^2,308,670^2,506,931^2,358,⁸⁸¹^2,506,931^2,506,931^2,^503,776^2,500,404^2,506,931
^s^.or^rgⁱⁿ^Is^l^aⁿ^d^s^211,625^214,718^234,³⁴⁸^234,348^240,761^240,761^240,458^240,134^240,761
^le^ak
^o^t^a^l^,
^://wiki^3,121,918^3,167,542^3,444,323^3,296,273^3,469,975^3,469,⁹⁷⁵^3,465,608^3,460,940^3,469,975
^h^ttp^tal^64,803,100^65,750,000^69,800,000^71,134,600^73,081,262^73,081,262^72,530,¹⁸⁶^71,771,000^72,482,000
^:^P^u^b^lish^e^d^an^d^uⁿ^p^u^b^lish^e^d^coⁿ^g^r^essioⁿ^{al d}^o^c^u^m^en^{ts an}^d^th^{e b}^u^d^g^{et j}^u^stif^icatioⁿ^f^o^r^th^{e A}^d^mⁱⁿⁱ^str^a^tioⁿ^f^o^r^Ch^ild^r^eⁿ^an^d^Fam^ilie^{s, HHS.}

CRS-13
Table 4. Protection and Advocacy Allotments for FY2000-FY2008
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
^t^es
^a^$440,488^$465,705^$577,381^$599,³³²^$627,475^$629,286^$616,974^$624,790^$631,160
^k^a^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^z^on^a^366,883^388,730^481,860^529,²⁶⁸^579,111^587,829^593,445^626,294^632,690
^aⁿ^s^as^263,838^277,337^342,954^367,⁹²²^387,602^388,340^379,748^385,083^389,010
ⁱ^f^ornⁱ^a²^,238,705^2,347,035^2,944,722^2,978,¹⁹²^3,181,700^3,195,668^3,^183,331^3,269,612^3,302,985
^o^rado^281,419^294,498^365,076^387,⁸⁸¹^415,010^414,702^408,703^419,637^422,685
ⁿ^ectⁱ^c^u^t^262,297^276,297^346,433^357,⁸⁹⁶^378,592^378,998^376,728^378,401^379,761
ⁱ^{ki/CRS-RL34507}^a^w^a^re^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
^g/w^t^{. of}^C^o^l^u^m^bⁱ^a^254,508^267,768^333,⁴⁰⁰^345,429^365,940^365,940^365,940^365,940^365,940
^s^.or^d^a¹^,107,462^1,188,948^1,489,867^1,603,400^1,745,277^1,749,350^1,751,⁰¹⁹^1,818,094^1,836,650
^le^akⁱ^a^615,186^653,949^813,299^861,²³²^933,374^928,659^934,345^982,659^992,686
^://wiki^aⁱⁱ^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^h^ttp^o^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^ois^899,454^951,104^1,180,647^1,219,417^1,284,415^1,281,⁹⁸⁷^1,281,999^1,291,826^1,305,000
^an^a^504,761^536,953^669,613^691,⁵⁶⁰^727,760^729,561^722,342^735,665^743,167
^a^260,532^273,978^340,450^352,266^371,121^370,786^368,535^366,994^368,238
^s^as^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^t^u^c^k^y^407,830^435,383^534,120^550,⁵⁰⁵^577,979^578,589^567,565^581,840^587,769
ⁱ^sⁱ^an^a^465,862^478,649^591,736^620,⁵⁹⁹^646,343^651,487^629,491^645,244^651,820
ⁿ^e^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^l^aⁿ^d^344,455^364,046^453,580^468,⁹³⁴^498,207^496,219^478,650^483,737^488,672
^s^ach^u^s^et^t^s^445,897^466,490^583,738^597,599^621,094^616,816^602,505^599,590^605,699
ⁱ^g^an^829,459^893,221^1,110,559^1,131,229^1,^190,195^1,182,440^1,164,⁴⁰⁰^1,176,513^1,188,505

CRS-14
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
ⁿ^e^s^o^t^a^348,788^378,784^461,218^475,⁷⁴³^502,232^500,234^492,891^499,792^504,889
^sⁱ^s^sⁱ^ppi^314,344^332,243^411,202^431,³²⁶^453,210^450,056^436,384^445,745^450,289
^s^o^u^rⁱ^461,734^490,603^609,069^632,⁷⁰⁹^665,767^665,060^660,742^673,574^680,443
^t^an^a^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
^k^a^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
^a^da^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^H^a^m^p^s^hⁱ^r^e^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^Jers^ey^524,188^551,995^698,666^725,¹²⁷^764,947^766,400^749,910^758,626^766,360
^Mexⁱ^co^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
^Y^o^rk^1,392,058^1,423,590^1,782,631^1,876,815^1,959,198^1,953,358^1,931,⁷³²^1,952,446^1,972,345
ⁱ^{ki/CRS-RL34507}^rt^h^C^a^rolⁱⁿ^a^648,421^690,481^859,512^908,⁷⁰⁹^976,006^977,015^984,385^1,026,804^1,037,277
^g/w^rt^h^D^a^k^o^t^a^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^s^.or
^le^akⁱ^o^978,964^1,037,007^1,280,363^1,309,037^1,^369,182^1,367,093^1,350,⁶¹⁹^1,359,530^1,373,390
^l^a^h^o^m^a^310,330^329,068^403,708^417,⁹⁴³^437,177^438,101^420,929^426,890^431,245
^://wiki^on^266,748^281,919^349,503^365,481^390,425^391,568^391,212^396,213^399,022
^h^ttp
ⁿ^s^y^l^v^aⁿⁱ^a¹^,028,682^1,073,⁰⁸⁰^1,339,885^1,388,495^1,443,211^1,^444,385^1,417,757^1,426,488^1,441,027
^l^aⁿ^d^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^t^h^C^a^rolⁱⁿ^a^369,392^395,715^493,458^517,436^549,365^547,408^541,043^557,541^563,226
^t^h^D^a^k^o^t^a^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
ⁿ^e^s^s^e^e^495,137^525,514^657,310^692,⁴²⁵^732,439^728,411^718,684^733,221^740,697
^a^s¹^,546,785^1,594,404^1,973,255^2,060,863^2,232,558^2,235,839^2,243,⁷⁹⁶^2,313,870^2,337,493
^254,508^267,768^333,400^345,429^365,940^365,940^365,940^365,940^365,940
^on^t^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
ⁱⁿⁱ^a^513,852^543,539^675,665^696,²²²^739,346^741,878^726,148^737,259^744,779
^hⁱⁿ^g^t^on^396,806^413,862^517,232^532,⁴⁵⁴^567,799^566,996^564,196^589,007^595,017
^t^Vⁱ^rgⁱⁿⁱ^a^274,742^289,650^358,713^371,782^390,425^392,097^388,931^388,670^390,134

CRS-15
^FY²⁰⁰⁰^FY²⁰⁰¹^FY²⁰⁰²^FY²⁰⁰³^FY²⁰⁰⁴^FY²⁰⁰⁵^FY²⁰⁰⁶^FY²⁰⁰⁷^FY²⁰⁰⁸
^s^c^on^sⁱⁿ^444,030^470,485^581,669^598,²¹⁴^629,285^626,865^611,617^621,843^628,184
^omⁱⁿ^g^254,508^267,768^333,400^345,⁴²⁹^365,940^365,940^365,940^365,940^365,940
^t^ates^24,630,673^25,934,486^32,280,294^33,535,735^35,554,747^35,560,401^35,277,676^35,880,418^36,169,234
^eri^can^S^a^m^o^a^136,161^143,255^178,³⁶⁷^184,802^195,775^195,775^195,775^195,775^195,775
^am^136,161^143,255^178,367^184,802^195,775^195,775^195,775^195,775^195,775
^h^e^rn^Mari^an^a^136,161^143,255^178,367^184,802^195,⁷⁷⁵^195,775^195,775^195,775^195,775
ⁿ^d^s
^o^Rⁱ^co^853,915^897,039^1,271,871^1,077,750^1,114,058^1,108,404^1,090,²⁶⁹^1,084,348^1,095,411
ⁱⁿ^Is^l^aⁿ^d^s^136,161^143,255^178,³⁶⁷^184,802^195,775^195,775^195,775^195,775^195,775
ⁱ^{ki/CRS-RL34507}^1,398,559^1,470,059^1,985,339^1,816,958^1,897,158^1,891,504^1,873,369^1,867,448^1,878,511
^g/w^26,029,232^27,404,545^34,265,633^35,352,693^37,451,905^37,451,905^37,151,⁰⁴⁵^37,747,866^38,047,745
^s^.or
^le^ak^:^P^u^b^lish^e^d^an^d^uⁿ^p^u^b^lish^e^d^coⁿ^g^r^essioⁿ^{al d}^o^c^u^m^en^{ts an}^d^th^{e b}^u^d^g^{et j}^u^stif^icatioⁿ^f^o^r^th^{e A}^d^mⁱⁿⁱ^str^a^tioⁿ^f^o^r^Ch^ild^r^eⁿ^an^d^Fam^ilie^{s, HHS.}

^://wiki
^h^ttp