DISABILITY POLICY COLLABORATION · 1660 L Street, NW, Suite 702 Washington, DC 20036-5602 Phone:...

Legislative AgendaLegislative Agenda

In Partnership WithAmerican Association on

Intellectual andDevelopmental Disabilities

American Network of CommunityOptions and Resources

Association of UniversityCenters on Disabilities

National Association of Councilson Developmental Disabilities

for the 111th Congressfor the 111th Congress

DISABILITY POLICY COLLABORATION

2009 - 2010

Disability Policy Collaboration1660 L Street, NW, Suite 701Washington, DC 20036-5602

Phone 202-783-2229Fax: 202-783-8250

The Arc of the United States1010 Wayne Avenue, Suite 650

Silver Spring, MD 20910Phone 301-565-3842Fax: 301-565-3843

Web: www.thearc.org

United Cerebral Palsy1660 L Street, NW, Suite 700Washington, DC 20036-5602

Phone: 202-776-0406Fax: 202-776-0414Web: www.ucp.org

American Association on Intellectual andDevelopmental Disabilities (AAIDD)444 North Capitol Street, NW, Suite 846

Washington, DC 20001-1512Phone: 202-387-1968

Fax: 202-387-2193Web: www.aaidd.org

American Network of Community Optionsand Resources (ANCOR)1101 King Street, Suite 380

Alexandria, VA 22314Phone: 703-535-7850

Fax: 703-535-7860Web: www.ancor.org

Association of University Centers onDisabilities (AUCD)

1010 Wayne Avenue, Suite 920Silver Spring, MD 20910

Phone: 301-588-8252Fax: 301-588-2842

Web: www.aucd.org

National Association of Councils onDevelopmental Disabilities (NACDD)

1660 L Street, NW, Suite 702Washington, DC 20036-5602

Phone: 703-739-4400Web: www.nacdd.org

This document is also available on the Web sites of theparticipating organizations.

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TABLE OFCONTENTS

I. INTRODUCTION . . . . . . . . . . . . . . . 4WHAT IS THE ROLE OF FEDERAL POLICY IN DISABILITY? 4WHAT IS THE DISABILITY POLICY COLLABORATION? . 5WHAT IS THE ARC?. . . . . . . . . . . . . . . . . . . . . . . . 5WHAT IS UNITED CEREBRAL PALSY?. . . . . . . . . . . . . 6WHAT IS AAIDD? . . . . . . . . . . . . . . . . . . . . . . . . 6WHAT IS ANCOR? . . . . . . . . . . . . . . . . . . . . . . . 7WHAT IS AUCD?. . . . . . . . . . . . . . . . . . . . . . . . . 7WHAT IS NACDD? . . . . . . . . . . . . . . . . . . . . . . . 8WHAT IS A DEVELOPMENTAL DISABILITY? . . . . . . . . . 8WHAT IS AN INTELLECTUAL DISABILITY . . . . . . . . . . . 8WHAT IS CEREBRAL PALSY? . . . . . . . . . . . . . . . . . . 9USE OF TERMS . . . . . . . . . . . . . . . . . . . . . . . . . . . 9DEVELOPMENT OF THE NATIONAL POLICY AGENDA . 10

THE ARC AND UNITED CEREBRAL PALSY IN

COLLABORATION . . . . . . . . . . . . . . . . 10OTHER PARTNERSHIPS . . . . . . . . . . . . . . . . . . 10SHAPING PUBLIC POLICY . . . . . . . . . . . . . . . . 10DEVELOPMENT OF LEGISLATIVE AGENDA . . . . . . 12MONITORING LAWS AND POLICIES . . . . . . . . . 12

II. FEDERAL FISCAL POLICYAGENDA . . . . . . . . . . . . . . . 12

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . 12BUDGET, ENTITLEMENTS, AND APPROPRIATIONS . 13REVENUE POLICY . . . . . . . . . . . . . . . . . . . . . 15

III. PROGRAMMATIC AGENDA. . . . . 16INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . 16

A. CRITICAL AGENDA . . . . . . . . . . . . . . 17MEDICAID . . . . . . . . . . . . . . . . . . . . . . . . . . 18LONG TERM COMMUNITY SERVICES AND

SUPPORTS FOR INDIVIDUALS. . . . . . . . . 24DIRECT SUPPORT WORKERS . . . . . . . . . . . . . . 25HEALTH CARE. . . . . . . . . . . . . . . . . . . . . . . . 26EMPLOYMENT, TRAINING, AND WAGES . . . . . . . 29HOUSING . . . . . . . . . . . . . . . . . . . . . . . . . . 31FAMILY SUPPORT. . . . . . . . . . . . . . . . . . . . . . 33EDUCATION . . . . . . . . . . . . . . . . . . . . . . . . . 35SOCIAL SECURITY/INCOME MAINTENANCE . . . . . 38TRANSPORTATION . . . . . . . . . . . . . . . . . . . . . 42

B. PRIORITY AGENDA . . . . . . . . . . . . . . 44CIVIL RIGHTS . . . . . . . . . . . . . . . . . . . . . . . . 44CRIMINAL JUSTICE . . . . . . . . . . . . . . . . . . . . . 46DATA COLLECTION . . . . . . . . . . . . . . . . . . . . 48DEVELOPMENTAL DISABILITIES ACT. . . . . . . . . . 49EMERGENCY MANAGEMENT. . . . . . . . . . . . . . . 51FOSTER CARE AND ADOPTION . . . . . . . . . . . . 53IMMIGRATION AND NATURALIZATION . . . . . . . . 54LIABILITY INSURANCE PROTECTIONS . . . . . . . . . 54NONPROFIT ORGANIZATIONS . . . . . . . . . . . . . 55PREVENTION . . . . . . . . . . . . . . . . . . . . . . . . 55QUALITY OF SERVICES . . . . . . . . . . . . . . . . . . 57RESEARCH . . . . . . . . . . . . . . . . . . . . . . . . . . 58SOCIAL SERVICES. . . . . . . . . . . . . . . . . . . . . . 59TAX POLICY . . . . . . . . . . . . . . . . . . . . . . . . . 60TECHNOLOGY . . . . . . . . . . . . . . . . . . . . . . . 60TEMPORARY ASSISTANCE FOR NEEDY FAMILIES

(TANF) . . . . . . . . . . . . . . . . . . . . . . 613

Legislative Agendafor the 111th Congress

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For many decades, the six national dis-ability advocacy organizations thatendorse the legislative agenda containedin this document have recognized thevital role the federal government plays inthe everyday lives of children and adultswith developmental disabilities and theirfamilies. From civil rights protections tocommunity housing, from special educa-tion to Social Security benefits, from jobtraining to basic health care, from trans-portation to long term supports and serv-ices and more, the federal governmentspends billions of dollars, both directlyand in partnership with state government,on people with developmental disabili-ties. These programs are funded thoughentitlement programs such as Medicaidand Medicare and discretionary programssuch as vocational rehabilitation, HUDhousing, and education. Many familiesand even some professionals in the fieldare, however, unaware of the huge impactof this federal funding since most of itflows through state and local govern-ments.

State and local governments, particularlyduring economic crises such as what ournation is now experiencing, are increas-ingly dependent on federal dollars. Inaddition to providing funding for disabili-ty benefits, services, and supports, the fed-eral government also monitors state andlocal governments to assure quality serv-ices and protection against the abuse ofvarious civil rights. It also conductsresearch and prevention programs,improves preparation and response inmajor emergencies, and collects vital dataon disability.

State and local governments and the pri-vate and nonprofit sectors cannot in anyway replace the funding and other rolesplayed by the federal government in dis-

I. INTRODUCTIONWHAT IS THE

ROLE OF

FEDERAL

POLICY IN

DISABILITY?

4



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WHAT IS THE

DISABILITY

POLICY

COLLABORATION?

WHAT IS

THE ARC?

ability policy. It is critical, then, that peo-ple with disabilities, their families andadvocates, and the disability service sys-tem help protect, enhance, and modern-ize the federal approach to disability poli-cy. The legislative agenda below sets forthcritical and priority goals that the U.S.Congress needs to respond to in thisCongress.

The Arc and United Cerebral Palsy (UCP)have combined their resources and talentsto advance federal disability public policythrough a merged government affairsoffice known as the Disability PolicyCollaboration (DPC). Begun in 2003, thecollaboration assures cost-effective per-formance for its parent organizations,while combining for a more powerfulvoice for people with disabilities. TheDPC leads efforts in mobilizing chapters,affiliates, self-advocates, families, andother supporters to become active playersin national public policy.

The Arc is a membership organizationmade up of people with intellectual (suchas mental retardation, an old and outdat-ed term seldom used anymore), develop-mental and other disabilities, their fami-lies, friends, interested citizens, and pro-fessionals in the disability field. Togetherthey form state and local chapters of TheArc, making up the largest volunteer-based organization in the United Statesdevoted solely to working on behalf of thisconstituency.

The Arc also advocates for people withother disability labels who, at times, willneed similar supports and services inorder to be as productive and independ-ent as possible.

For almost 60 years, approximately 800state and local chapters of The Arc haveworked throughout the nation to ensurethat their constituents have the supportsand services they need, are accepted intheir communities, have a voice in poli-cies that affect them, and have control oftheir own lives.

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United Cerebral Palsy (UCP) is one of thenation’s leading organizations servingand advocating for the more than 54 mil-lion Americans with disabilities. Its mis-sion is to advance the independence, pro-ductivity, and full citizenship of peoplewith disabilities through an affiliate net-work. Over half of UCP consumers arepeople with disabilities other than cere-bral palsy. Through its nationwide affili-ate network, UCP offers to individuals,families and communities such servicesas job training and placement, physicaltherapy, individual and family support,early intervention, social and recreationprograms, community living, state andlocal referrals, and advocacy. UCP affil-iates directly serve more than 170,000children and adults with disabilities andtheir families every day.

The American Association on Intellectualand Developmental Disabilities (AAIDD,formerly AAMR) is the world’s oldest andlargest interdisciplinary organization ofprofessionals concerned about intellectu-al and developmental disabilities. TodayAAIDD has more than 40,000 membersand service recipients, and this year theorganization is celebrating more than133 years of vision and professional lead-ership. AAIDD’s commitment to innova-tion and progress is as strong today as itwas in the Association’s earliest days.

AAIDD is the source of credible disabili-ty information based on research find-ings. The Association also provides aunique forum where professionals, par-ents, advocates, and policy makers cancome together to discuss disabilityresearch, policy, and service issues.

The AAIDD network strives to provide thebest information, resources, supports, andservices designed to enhance the qualityof life and ensure full societal inclusion ofpersons with intellectual and develop-mental disabilities.

WHAT IS

AAIDD?

6


WHAT IS

UNITED

CEREBRAL

PALSY?

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The American Network of CommunityOptions and Resources (ANCOR) is anational, nonprofit membership organiza-tion representing private providers of sup-ports and services to people with disabili-ties. For more than 35 years, ANCORhas distinguished itself in the field by itsbalance of leading practices, resources,and advocacy for member agencies andthe people and families they serve andsupport. ANCOR’s mission is to inform,educate, and network service providers tosafeguard, develop, grow, and extendtheir capacity to support the choices ofpeople with disabilities. Together,ANCOR’s nationwide network of 825providers; 395,000 direct support profes-sionals; and 45 state provider associa-tions daily support more than 385,000individuals with developmental and otherdisabilities, promoting an optimal qualityof life to advance full participation.

The Association of University Centers onDisabilities (AUCD) is a nonprofit organi-zation that represents the national net-work of university centers on disabilities,which includes University Centers forExcellence in Developmental DisabilitiesEducation, Research, and Service(UCEDD), Leadership Education inNeurodevelopmental and RelatedDisabilities (LEND) Programs and EuniceKennedy Shriver Intellectual andDevelopmental Disabilities ResearchCenters (IDDRC).

The mission of AUCD is to advance policyand practice for and with people livingwith developmental and other disabilities,their families, and communities by sup-porting its members to engage in research,education, and service that support inde-pendence, productivity and satisfyingquality of life. AUCD members representevery state and most territories in the USAand over 80 universities and medicalschools. Through its members, AUCDserves as a resource for local, state,national and international agencies,organizations, and policy-makers con-cerned about people living with develop-mental and other disabilities and theirfamilies.

WHAT IS ANCOR?

7


WHAT IS AUCD?

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The National Association of Councils onDevelopmental Disabilities (NACDD) is anational membership organization repre-senting the 55 State and TerritorialCouncils on Developmental Disabilities.NACDD is a 501(c) 3 organization withthe purpose of promoting and enhancingthe outcomes of our member councils indeveloping and sustaining inclusive com-munities and self-directed services andsupports for individuals with develop-mental disabilities.

Developmental Disabilities are physicalor mental impairments that begin beforeage 22, and alter or substantially inhibit aperson’s capacity to do at least three ofthe following:

Take care of themselves (dress, bathe, eat,and other daily tasks)

• Speak and be understood clearly

• Learn

• Walk/Move around

• Make decisions

• Live on their own

• Earn and manage an income

Some common types of developmentaldisabilities are cerebral palsy, intellectualdisabilities, autism spectrum disorders,and epilepsy.

Intellectual disability is a disability char-acterized by significant limitations bothin intellectual functioning and in adaptivebehavior, which covers many everydaysocial and practical skills. This disabilityoriginates before the age of 18. The termintellectual disability covers the samepopulation of individuals who were diag-nosed previously with mental retardationin number, kind, level, type, and durationof the disability and the need of peoplewith this disability for individualizedservices and supports. Furthermore, everyindividual who is or was eligible for adiagnosis of mental retardation is eligiblefor a diagnosis of intellectual disability.

Most federal laws that serve people withdisabilities through established eligibility

8


WHAT IS

NACDD?

WHAT IS AN

INTELLECTUAL

DISABILITY?

WHAT IS A

DEVELOPMENTAL

DISABILITY?

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categories use the term “mental retarda-tion.” Because the disability communityno longer uses that term, the Congressshould substitute the term “intellectualdisability” for the term “mental retarda-tion” whenever a law that uses that term issubject to reauthorization. This changeshould not in any way alter the eligibilityrequirement since the change in terms isnot intended to do so. However, becausecourt decisions and federal law regardingthe death penalty use the term “mentalretardation,” that term should remain inuse until the official disability classifica-tion systems conform to the use of theterm “intellectual disability.”

Cerebral Palsy (CP) is a number of disor-ders of the developing brain affectingbody movement, posture and musclecoordination. CP is caused by damage toone or more specific areas of the brain,usually occurring during fetal develop-ment; before, during, or shortly after birth;during infancy; or early childhood. It isnot a disease, not progressive, nor com-municable. The United Cerebral PalsyResearch and Educational Foundationestimates between 1.5-2.0 million chil-dren and adults have cerebral palsy in theUnited States

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD support and advocate withand for individuals with intellectual,developmental and other disabilities, theirfamilies and others who support them. Inthis document, we often refer to thesegroups as “constituents” or “our con-stituency” if a legislative goal applies toeveryone represented by our collectiveorganizations.

9


USE OF TERMS

WHAT IS

CEREBRAL PALSY?

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The Arc and UCP have combined theirresources, talents, and strong legacy ofgrassroots involvement in national publicpolicy into the formal Disability PolicyCollaboration. Working together, welead efforts in convincing policymakers ofthe vast unmet needs of our constituentsand in mobilizing people with disabili-ties, their families, and our chapters andaffiliates as active players in national pub-lic policy.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD each have a rich history ofbuilding and participating in coalitionsand collaborating with each other andwith other organizations in pursuit ofnational public policy goals. All sixorganizations are leading members of theConsortium for Citizens with Disabilities(CCD). CCD is a Washington, D.C.-based coalition of more than 100 nation-al organizations representing consumers,family members, providers, professionals,and other advocates. Because our con-stituents share the same needs and inter-ests as other Americans, The Arc, UnitedCerebral Palsy, AAIDD, ANCOR, AUCD,and NACDD also participate in non-dis-ability coalitions which help further ourpolicy goals.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD base their public policyviews on the understanding that our con-stituents are full citizens and full partici-pants in a democratic society. We workto shape a state/federal partnership thatprovides benefits, supports, and servicesfor our shared constituency. These indi-viduals and their families have an interestin learning about and having an influenceon the laws that affect them. All peoplewith disabilities have the right to advo-cate for themselves at all levels of gov-ernment. The vast majority of our con-stituents have the right to vote.

While all six organizations support thesepolicy goals, each organization maychoose to emphasize goals specificallyrelated to the nature of the individualorganization and its respective con-stituents.

OTHER

PARTNERSHIPS

10


SHAPING

PUBLIC POLICY

DEVELOPMENT OF

THE NATIONAL

POLICY AGENDA

THE ARC AND

UNITED CEREBRAL

PALSY IN

COLLABORATION

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Our system of government was set up togive states substantial responsibility forthe health, education, and well-being ofour constituents. Since state and localgovernments often cannot or will not ade-quately meet the needs of our con-stituents, an increased federal role inensuring and providing supports is neces-sary.

In recent years there has been an ongoingeffort to shift some federal responsibilitiesto state and local governments. In manyinstances, this shift has weakened or elim-inated the very services and supports chil-dren and adults with disabilities and theirfamilies need to survive. Despite the factthat the United States is the one of thewealthiest countries in the world, thereare unmet needs for too many of our con-stituents and their families.

During their Senate tenures, PresidentObama and Vice President Biden haveconsistently demonstrated an apprecia-tion for the needs of persons with disabil-ities and the imperative to address thoseneeds. Our organizations understand thatthe Administration is faced with signifi-cant challenges – a severe economicdownturn, two wars, and an ever growingdeficit. The weakened economy con-tributes to the daunting challenges facingour constituents. The ObamaAdministration’s pledge of change isexpected to offer new opportunities toimprove, modernize, and expand sup-ports and benefits for our constituency.

Nationwide, hundreds of thousands ofpeople with developmental disabilitieswait, often for many years, for funding forservices and supports that will enablethem to live, thrive, and contribute to theircommunities. This is unfair to people withdisabilities and to American families.Countless others have either not soughtservices, are in states that do not maintainwaiting lists for services, or have given upseeking assistance. The Arc, UCP, AAIDD,ANCOR, AUCD, and NACDD will contin-ue to advocate for needed changes andadditions to public policy that will addresstheir needs.

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The foundation for the legislative agendafor the 111th Congress is built on missionstatements, principles, core values, posi-tion statements and current policies ofThe Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD and on input from volun-teers, members, and professionals fromacross the country. We have taken intoconsideration expected proposals fromthe White House and Congress, as well asthe laws that need reauthorization in the111th Congress. We will also deal withunexpected issues as they arise.

For the 111th Congress, we present twotiers of priorities for our programmaticlegislative agenda. The tiers are criticalagenda and priority agenda. The ration-ale for the tiered scheme is contained inthe programmatic goals section of thisdocument. The DPC will address any andall of these issues as they arise.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD closely follow how laws andpolicies are carried out so that our con-stituency is appropriately served. Thisincludes influencing any changes in regu-lations as well as how the federal govern-ment implements, monitors, and enforcesrelevant federal programs.

Federal fiscal policy is the primary toolused by Congress and the Administrationto address critical societal problems.Fiscal policy has and is being wieldedwith force in an effort to address the cur-rent economic crisis in the financial serv-ices and other industries. So too, federalfiscal policy can and should be used todecisively address the crises facing peo-ple with disabilities and their families.The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD support full and adequatefunding for the program services and sup-ports that are needed to enable peoplewith disabilities and their families to befully included in society.

Reductions in entitlement spendingthreaten our constituents. Adverse admin-istrative Medicaid policy changes set inmotion by the previous Administration aswell as changes at the state level couldadversely affect our constituents. Since

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DEVELOPMENT OF

LEGISLATIVE

AGENDA

MONITORING

LAWS AND

POLICIES

II. FEDERALFISCAL

POLICYAGENDA

INTRODUCTION

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Medicaid finances lifesaving health careand long term supports for most of ourvulnerable constituency who receive sup-ports, their futures are inextricably linkedto any shift in Medicaid policy – at eitherat the federal or state level. The very livesof our constituents are at stake in thesepolicy deliberations. Some of the changesthat have been proposed to the SocialSecurity system, such as changes in thebenefit payment formula resulting inreduced benefits, could have a devastat-ing impact on beneficiaries and on humanservices funding.

Federal fiscal policy is also criticalbecause state funding is often based onthe amount of federal money available.When federal funding for programs is cut,state funding rarely increases to make upthe difference, and services to our con-stituents will be reduced, if not eliminat-ed. Like most Americans, we support theneed for a strong economy. However, atruly strong and secure nation can only beachieved if:

• Federal funding decisions and tax pol-icy do not result in a federal budgetthat is crafted at the expense of peoplewith disabilities;

• Services, supports, and benefits criti-cal to the well-being of people withdisabilities and their families are pro-tected, improved, and expanded; and

• When needed, the federal govern-ment leads or assists states in beingfair and efficient in carrying out theirresponsibilities to people with disabil-ities and their families.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD promote cost-effectivenesswhen such efforts do no harm to our con-stituents and allow them to live as inde-pendently as possible in the community.

Congress sets annual fiscal policy by:

1. Adopting a budget resolution that setsannual revenue and spending limits.The budget resolution is the blueprintfor discretionary and entitlementspending;

2. Adopting annual appropriations bills13


BUDGET,ENTITLEMENTS,AND

APPROPRIATIONS

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which set spending levels for themany discretionary programs; and

3. Enacting a reconciliation bill requir-ing relevant committees to revise taxpolicy and entitlement spending(such as Medicaid, Medicare, SocialSecurity, Supplemental SecurityIncome, and Food Stamps) to complywith the budget resolution.

The combination of these three major fis-cal actions determines the actual fundingfor all disability benefits, programs andservices for the year.

The 111th Congress must:

• Address the significant unmet needsof people with disabilities and theirfamilies by increasing existing federalfunding and expanding the federalgovernment’s investment in peoplewith disabilities to enable them tolive and work as independently aspossible in the community withappropriate flexible long term indi-vidual and family supports;

• Ensure that eligibility for services andbenefits is not restricted and that thelevel of services and benefits for enti-tlement programs (such as Medicaid,Medicare, and Social Security) is notreduced or limited in order to achievebudget cuts;

• Ensure that the current economic cri-sis does not severely impact our con-stituents by enacting a significanttemporary increase to the federalshare of Medicaid spending; and

• Remove the Social Security Admini-stration’s administrative budget fromany budget cap requirements for theDepartments of Labor, Health andHuman Services, and Education.

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• Address the unmet needs of peoplewith disabilities and their familiesbefore making further tax cuts orreforming tax policy so that it nega-tively impacts low wage earners andother vulnerable people;

• Protect low income tax payers frompaying higher taxes;

• Enable people with disabilities to beindependent and productive;

• Protect and enhance, not erode, serv-ices and benefits for people with dis-abilities;

• Assure that tax policies represent asound investment and will not jeop-ardize the long term stability of peo-ple with disabilities and their families;

• Protect the Social Security trust fundsfor use by current and future benefici-aries;

• Raise sufficient revenues to balancethe annual budget and finance thefederal government’s role in providingessential supports, services, and bene-fits for people with disabilities andtheir families;

• Roll back or repeal tax cuts and adjustother tax policies that create a deficitor put existing disability programs atrisk;

• Avoid creating impediments to thestates’ ability to raise sufficient rev-enue to meet human needs; and

• Assure the continuing ability of non-governmental entities to support peo-ple with disabilities and their families.

15


REVENUE

POLICY

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The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD recognize the vital role thatthe federal government plays in providingservices, supports, and benefits for ourconstituents and in supporting programsthat help prevent the causes and mitigatethe effects of mental and physical disabil-ities. Our constituents have highlydiverse needs based on their personalpreferences and desires, the severity oftheir disabilities, their ages, and theirindividual or family circumstances.Many people with disabilities will contin-ue to depend on the federal governmentfor certain services, supports, and bene-fits throughout their lives.

Federal spending for people with disabil-ities living in the community, most ofwhom live with their families, is aninvestment that is proven to save taxpay-er money by lessening the need for morecostly out of home long term supports.Nonetheless, most federal programs thatsupport our constituents and their fami-lies are grossly underfunded, leaving hun-dreds of thousands underserved or con-tinually waiting for services, and thesenumbers are constantly growing.

There is also an explosive national crisisin the availability of appropriately quali-fied direct support workers, due to factorssuch as low pay, inadequate benefits, andlimited career options. This situationleads to high turnover among workersand severely limits the ability of providersto maintain or expand their services andsupports. Worse, this crisis puts the livesof our constituents at risk. These prob-lems also affect the availability of otherprofessionals in the field.

American society continues to supporttremendous mobility of all families with-in and between states. However, peoplewith disabilities who receive any level ofsupports from state systems are oftenunable to move to join family in otherstates, for example, when their parentsmove for employment or retirement, orwhen their parents die and they need tomove nearer adult siblings. Researchdemonstrates that wage earners in manyfamilies decline promotions, transfers,

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III.PROGRAMMATIC

AGENDAINTRODUCTION

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and overtime in order to care for theirfamily member with a disability, thus lim-iting that entire family’s income andfuture. It is time for the nation to developmechanisms to ensure portability of feder-ally funded supports so that the moneycan truly follow the person.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD recognize that the Congressdrives the disability agenda and some ofour priority policy agenda may not bedealt with in this Congress. Our organi-zation will respond as appropriate to allCongressional activity related to disabilitypolicy.

The Arc, UCP, AAIDD, ANCOR, AUCD,and NACDD acknowledge that many vitalfederal laws affect our constituency. Someof these laws rise in importance due topending Congressional attention and thecritical role they play in the lives of ourconstituents. Medicaid and SocialSecurity provide vital supports to our con-stituents; potential changes to either pro-gram, therefore, require significant atten-tion to the possible impact on people withdisabilities. The relationship betweenMedicaid and direct support workersrequires very close policy coordination.Availability of affordable, accessible hous-ing remains a major issue for people withdisabilities in communities across thecountry. A free, appropriate education forstudents with disabilities remains thelynchpin to a productive and independentadulthood. Family support, althoughseverely underfunded, is very cost effec-tive and best reflects the type of carefavored by our nation. Thus, the agendarelated to Medicaid, Long TermCommunity Services and Supports forIndividuals, Direct Support Workers,Health Care, Employment Training andWages, Housing, Family Support,Education, Social Security/IncomeMaintenance, and Transportation consti-tute our highest priorities for the 111thCongress.

With appropriate supports, our con-stituents can be employed, become tax-payers, develop friendships, and partici-pate in community life. Such successes

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A. CRITICAL

AGENDA

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are very fragile for many, and it is vitalthat government assures our constituentsopportunities similar to those that areenjoyed by most other Americans. Onlythrough receiving supports and servicescan many people with intellectual, devel-opmental and other disabilities havechoices in housemates, employment,transportation, and other essential aspectsof community life that most Americanstake for granted.

Medicaid is the lifeline for most peoplewith significant disabilities. TheMedicaid program is overwhelmingly thelargest funding source of long term indi-vidual and family supports in the feder-al/state mental retardation/developmentaldisabilities system, and the primarysource of health care payment for most ofour constituents. For the increasing num-ber of individuals with disabilities livingwith aging parents, Medicaid will be thesolution to meet their needs. The state ofthe national economy has already placedundue pressure on the states. Many stateshave scaled back eligibility, frozenalready inadequate reimbursement rates,and reduced services, with devastatingimpact on people with disabilities, theirfamilies, and their communities. Today,many of our constituents cannot gethealth and long term care services.Further shifting responsibility forMedicaid to the states and increasingflexibility that allows states to reduce eli-gibility and benefits is placing many ofour constituents and our nation’s health,therapeutic and long term care systemsfor vulnerable populations at enormousrisk. Medicaid should evolve instead intoa national program.

Medicaid is a powerful driver of econom-ic activity at the state and local levels.Research has shown temporary increasesin the federal medical assistance percent-ages (FMAP) to be an effective tool foreconomic stimulus because Medicaidgenerates jobs. When Medicaid serviceprovider agencies are able to retain staffpositions, unemployment is reduced andmoney gets put into the hands of individ-uals who will spend it. In addition,

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MEDICAID

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Medicaid reduces health care costs byallowing people with disabilities to notutilize costly and unwanted institutional-ization.

Due to the severe economic downturnfacing an overwhelming majority of statesacross our nation, most states are cuttingMedicaid spending. Such cuts will have adramatic impact on our constituents whodepend on this program for critical healthand long term services. DecreasedMedicaid budgets also mean that hun-dreds of thousands of people with devel-opmental disabilities will remain on wait-ing lists across the country. Equally dis-concerting is the loss of many qualifiedstaff when jobs are eliminated due toMedicaid cuts.

In order to accomplish true Medicaidreform, the 111th Congress must:

Overall Structure

• Maintain the individual entitlement toa full range of Medicaid health andlong term supports and services for alleligible children and adults with dis-abilities;

• Oppose Medicaid deconstruction orany moves to provide states with flex-ibility that eliminates basic protec-tions for eligible individuals withdevelopmental disabilities or theimposition of entitlement caps,Medicaid block grants, per capitacaps, allocations, allotments, or othermechanisms that cause reductions ineligibility, services, or protections forour constituents;

• Extend moratoria on the rehabilitativeservices, targeted case management,and school based administrative serv-ices/transpiration regulations if theyare not withdrawn;

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Responding to State Budget Crises

• Provide a significant temporaryincrease in the federal share ofMedicaid spending (FMAP) toaddress the economic crises facingstates across the country and ensurethat states maintain their level ofeffort;

Eligibility

• Encourage state implementation ofthe option in state Medicaid plans forfamilies of children with disabilitiesto buy into Medicaid if private healthinsurance is not available or does notmeet their needs;

• Encourage full implementation bystates of options to establishMedicaid buy-in programs for peoplewith disabilities who work;

• Ensure that Medicaid eligibility rulesand processes do not place undueburdens on applicants and benefici-aries who do not have access to birthor citizenship documentation.

Benefits

• Prohibit issuance or implementationof any regulations that limit or elimi-nate services;

• Ensure that Medicaid eligible chil-dren with disabilities continue toobtain health related services duringthe school day under the student’sIndividualized Education Programand receive any necessary transporta-tion to those services;

• Secure protections for people whoare dual (Medicaid and Medicare) eli-gibles with disabilities to ensure thatthey have timely and affordableaccess to all medically necessarymedications under Medicare pre-scription drug plans;

• Protect the entitlement to the Earlyand Periodic Screening, Diagnosis,and Treatment (EPSDT) program andsupport sanctions against states thatfail to properly implement it;

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NG

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• Require the Centers for Medicare andMedicaid Services (CMS) to issueguidance to states that will result inexpanded coverage of appropriateassistive technology for Medicaid ben-eficiaries;

• Ensure Medicaid reimbursement for a30-day emergency supply of medica-tion in anticipation of potential disas-ters, epidemics, or other emergencies;

• Support the continuation and expan-sion to all states of states’ current abil-ity to provide habilitation servicesunder the Medicaid rehabilitationoption and ensure that our con-stituents have supports, services, andtraining available to teach them toachieve self-determination andincrease independence, productivity,and full citizenship through greatermental, physical, and social develop-ment.

Home and Community-Based Services(HCBS)

• Change Medicaid policy to mandatehome and community-based serviceswhile requiring a waiver to providenew services in large institutions;

• Change Medicaid law so that con-sumers and families can choose toexercise control over resources to bet-ter meet their individual needs;

• Revise Medicaid law to require statesto serve all federally Medicaid eligiblepeople with developmental disabili-ties and not a subset of the populationunder HCBS;

• Amend the Medicaid state plan optionfor home and community-based serv-ices that was enacted under theDeficit Reduction Act to increase theincome limit (to at least that allowedfor institutional and waiver services);allow the full range of services avail-able under the home and communitybased services waiver; and otherwiseimprove it for supporting people withdisabilities;

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• Ensure that people with disabilitiesusing HCBS waiver or option serviceslive in settings of their choice;

• Enact a requirement that states pro-vide community attendant servicesand supports;

Removal of Institutional Bias

• Address unmet needs in the commu-nity by removing the institutional biasfor Medicaid long term services byamending the Medicaid formula forcost-sharing with the states to providea greater fiscal incentive for support-ing individuals in the communityrather than in institutions;

• Decouple eligibility for the home andcommunity based waiver from eligi-bility for institutional services;

Portability

• Improve Medicaid so that beneficiar-ies and families are not disadvan-taged by moving from one state toanother;

Reimbursement Rates

• Establish an increased FMAP forhome and community based services(HCBS);

• Ensure that states set and updatereimbursement rates annually so thatthey reflect the actual cost of provid-ing Medicaid funded services andsupports, particularly adequate wagesand benefits for direct support work-ers;

• Ensure that states increase, and annu-ally update, reimbursement rates andfees for health practitioners and clini-cal specialists to reflect the cost ofproviding services;

Other

• Protect the ability of families andindividuals to establish trusts to bene-fit Medicaid eligible beneficiaries andensure the integrity of pooled trustswhich serve such families and indi-viduals;

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• Establish an incentive program ofincreased Federal Medical AssistancePercentage (FMAP) for states that com-mit to eliminating the wage differen-tial between workers in communityservices and workers in government-run Medicaid services by increasingthe wages and benefits of the commu-nity workers;

• Prior to action by CMS on anyMedicaid waiver and state planchanges, require states to provideenhanced public notification and out-reach, opportunity for comment, andreporting mechanisms;

• Require that Medicaid managed careprograms provide primary and acutecare based on individual needs andinformed choices as determined bythe individuals and their doctors andinclude appropriate consumer protec-tions and enforceable quality stan-dards;

• Reject the placement of Medicaidlong term services and supports with-in a managed care system;

• Maintain the prohibition against themandatory placement of children withdisabilities into Medicaid managedcare without an approved waiver;

• Ensure effective quality assurancemechanisms, oversight, and enforce-ment of state governments’ implemen-tation of federally supported commu-nity services and supports and theintermediate care facilities programfor people with “mental retardationand related conditions” (ICF/MR),including the involvement of peoplewith developmental disabilities andtheir families in statewide qualityassurance systems;

• Restore the annual resident reviewand maintain the preadmissionscreening protections under thePreadmission Screening and AnnualResident Review (PASARR) programfor people with intellectual disabilitiesliving in nursing homes, so that theywill have access to home and com-

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munity services and supports whennursing home care is unnecessary orinappropriate;

• Require that CMS recognize con-sumers and consumer advocacyorganizations as their primary “cus-tomers” and that CMS develop appro-priate training and information mate-rials that allow its customers tounderstand their rights and responsi-bilities under Medicaid.

The demand for long term supports is acritical issue in the 21st century. Yet, thenation lacks a comprehensive, proactivenational public-private system for deliver-ing long term supports. The current sys-tem is a patchwork of inadequate fund-ing—with the largest source of federalfunds provided by the Medicaid programthat requires most people to be impover-ished to receive supports. With the first ofthe “baby boomers” now retiring, theneed for qualified support workers andfamily caregivers will exacerbate severeinequities in the ability of individualswith significant disabilities of all ages tolive in homes of their own choice. Inorder to meet this national challenge, thefederal government must take the lead indeveloping a coordinated, comprehen-sive approach to long term supports andservices. Since Medicaid has become thecore of federally-supported long termservices and supports, the philosophy ofthe Medicaid program must be changedto reflect the preference for communitybased services over institutional services.

To meet this challenge, the 111thCongress must:

• Expand, modernize, and, whereappropriate, maintain national poli-cies that provide individual supports.Such supports should encourage indi-vidual control of services, self-suffi-ciency, and personal responsibilityamong our constituents. Such servic-es and supports must be:

– consumer controlled;

– inclusive of personal assistanceservices;

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LONG TERM

COMMUNITY

SERVICES AND

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INDIVIDUALS

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– designed and implemented tomeet individual needs;

– widely accessible; and

– provided in the community.

Such a system should avoid the need forpeople to impoverish themselves to quali-fy for services.

• Support legislation to create a nation-al, long term supports insurance pro-gram that is premium-based and non-means-tested, that will cover mostworkers, and that will provide cashbenefits to assist beneficiaries inavoiding the need to impoverishthemselves to qualify for Medicaid;

• Ensure adequate funds for federalmonitoring and implementation of theU.S. Supreme Court’s Olmstead deci-sion;

• Establish pilot projects to encouragehome health agencies to utilize homemonitoring and communicationstechnologies; and

• Amend federal law to allow militarysurvivor benefits to be paid to a trustestablished for an individual with dis-abilities, to allow for the long-termsupport of the individual.

A well-trained, adequately compensateddirect support workforce is essential toproviding the necessary supports andservices to our constituents, who consti-tute a very vulnerable population. Thecurrent Medicaid reimbursement system,and cost cutting actions by state legisla-tures and Medicaid officials, has allowedstates to create a workforce crisis evi-denced by low wages, a lack of healthinsurance, high turnover, and a shortageof staff. These problems have been com-pounded over three decades, leading to acrisis that presents a grave threat to thelives of our constituents and their families.Medicaid is the primary source of fundingfor the programs employing these work-ers. The 111th Congress must:

• Ensure adequate funding so that directsupport workers are paid a livingwage, including appropriate benefits,at the same level of pay and benefits 25


DIRECT SUPPORT

WORKERS

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that states provide for staff working instate-operated programs.

• Require that states develop andimplement a plan to address all rele-vant components that drive the crisis,including low wages and reimburse-ment rates, high turnover, and inade-quate training;

• Require any state and federal mini-mum wage increases be reflected instate reimbursement rates for servic-es;

• Support authorizing legislation andcontinuing financial support to pro-vide pre-service and in-service train-ing and other relevant educationalopportunities for direct support work-ers to meet the diverse needs of indi-viduals with disabilities; and

• Implement programs aimed at thedirect support labor market toincrease the pool of available workersand improve recruitment, retention,training, and supervision of directcare workers to better serve individu-als with disabilities.

Health care reform is a top priority for the111th Congress. Our organizations arefirmly committed to universal access tohigh quality, affordable health care for allAmericans. We recognize the impor-tance of comprehensive primary and spe-cialty care for our constituents. Peoplewith disabilities are among the most med-ically underserved populations in ourcountry. Community health supports forour constituents must address mental andphysical health needs (including dentalcare), as well as issues unique to agingwith a disability. These supports must beaccessible, non-discriminatory, compre-hensive, coordinated, and affordable andbe delivered by well trained, experi-enced, and culturally competentproviders.

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To achieve these goals, the 111thCongress must:

Medicaid/Medicare

• Protect existing health care entitle-ments such as Medicare andMedicaid;

• Ensure that Medicare continues toserve people with disabilities, isresponsive to the unique health careneeds of our constituents, andexpands access to health care anddurable medical equipment forMedicare beneficiaries with disabili-ties.

• Enact legislation to phase-outMedicare’s two-year waiting periodunder which people with disabilitiesqualify for Medicare coverage 24months after receipt of Social SecurityDisability Insurance (SSDI) benefits;

• Enact legislation to eliminateMedicare’s “in the home” restrictionfor coverage of mobility devices (e.g.,wheelchairs and scooters) for thosewith expected long-term needs;

• Ensure that cost-cutting measuresallowed under Medicare andMedicaid do not harm beneficiarieswith disabilities;

• Provide a subsidy to purchase healthcare coverage for individuals with dis-abilities who lose their Medicare orMedicaid eligibility by taking a joband cannot afford coverage;

Health Care Reform

• Enact health care reform legislationthat meets the needs of our con-stituents for quality, accessible, appro-priate, comprehensive, affordable,portable, and non-discriminatory cov-erage;

• Ensure that our constituents havemeaningful choice and control overtheir health care and enjoy strongconsumer protections;

• Reject initiatives that would furthersegment the insurance market orweaken existing state insurance man-

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dates because such initiatives wouldincrease the number of our con-stituents who are uninsured andundermine the goal of universalaccess to health care;

State Children’s Health InsuranceProgram (SCHIP)

• Protect and expand the StateChildren’s Health Insurance Program(SCHIP) as a dedicated program forinsuring currently uninsured childrenand include dental and mental healthbenefits;

Benefits

• Fund individual care coordination forindividuals with disabilities, particu-larly those who have complex andchronic health care needs;

• Prevent insurance companies fromusing arbitrary and discriminatoryclassifications to limit coverage forparticular diseases or conditions;

• Include preventive and restorativedental coverage under all applicablefederal health care programs;

• Provide funding for primary and sec-ondary prevention and wellness pro-grams for individuals with disabilities;

• Expand funding for training of allhealth care providers about the needsof children and adults with disabili-ties, including practices to preventsecondary conditions and to helptransition youth with disabilities toadult care providers;

• Support efforts to ensure that peoplein public and private health planshave access to affordable prescriptiondrugs;

Other

• Support a full range of managed carereforms that meet the needs of chil-dren and adults with disabilities,including a broad definition of med-ical necessity, enforceable federalstandards, and legal remedies; and

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• Revise relevant law to declare peoplewith disabilities an underserved popu-lation.

The 111th Congress should recognize thatthe vast majority of our constituents whoare of working age remain unemployed orunderemployed. In 2005, an estimated38 percent of people with a disabilitywere employed. Meanwhile the work-force participation rate of similar popula-tions without disabilities is almost 80 per-cent. This trend is not improving. By anydefinition this vast disparity should be rec-ognized as a crisis. People with disabili-ties want to work and pay taxes.

Thus, the 111th Congress should help ourconstituents reach their full potential andbecome as independent as possiblethrough integrated employment by:

Vocational Rehabilitation

• Reauthorizing the Rehabilitation Actand the Workforce Investment Act(WIA), including strengthening thelinkage between WIA and theRehabilitation Act, preserving theintegrity of the Rehabilitation Act,increasing the emphasis on employ-ment by strengthening and expandingthe supported employment and cus-tomized programs, improving transi-tion policy, expanding work experi-ence opportunities, removing barriersto participation by people with dis-abilities, creating demonstration pro-grams and incentives to replicate bestpractices and ensuring full dueprocess protections;

• Increasing funding for the state voca-tional rehabilitation program signifi-cantly above the required ConsumerPrice Index (CPI) level, transitions topostsecondary opportunities, support-ed employment, projects with indus-try programs, and workforce develop-ment programs that help our con-stituents find and keep jobs and havemore career options;

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WAGES

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Economic Stimulus

• Assuring that people with disabilitiesbenefit through increased integratedemployment opportunities from anyemployment related provisions of theeconomic stimulus efforts;

Procurement and Contracting

• Modernizing the Javits-Wagner-O’Day (JWOD) Program to expandintegrated employment opportunitiesand ensure that people with signifi-cant disabilities remain a priority forparticipation in the program;

• Expanding employment opportunitiesby establishing federal procurementpreferences for employers whoemploy significant numbers of peoplewith disabilities;

• Assuring that federal employees withdisabilities do not lose their federalemployment status due to outsourc-ing;

Subminimum Wage and Sheltered Work

• Creating incentives for employers orother solutions that will allow a phaseout of the issuance of subminimumwage certificates without harming theemployment opportunities of peoplewith significant disabilities;

• Assuring that people currently earn-ing sub-minimum wages in supportedor sheltered employment have theirfederal and other benefits and sup-ports protected if any wage and hourpolicy shift would result in the loss ofemployment, benefits, or supports;

• Conducting oversight on theDepartment of Labor’s monitoring ofcompliance under the Fair LaborStandards Act and other federal non-discrimination requirements;

Employment Standards and Benefits

• Supporting policies that expand workplace flexibility;

• Assuring that part-time, supported, orperiodic employees are included inany proposal that expands or extendsfringe benefit coverage;

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• Expanding access to family and med-ical leave and supporting paid leavepolicies, including mandatingemployers to provide a reasonableamount of paid sick leave, and requir-ing payors to recognize these costs intheir reimbursement;

Other

• Assuring people with intellectual dis-abilities, cerebral palsy, and other dis-abilities can access all relevant workprograms, including business devel-opment opportunities;

• Restoring the funding and requiringthe Department of Labor’s Office ofDisability Employment Policy to fulfillits role regarding policy, programs,and research to advance the employ-ment of people with significant dis-abilities; and

• Permanently extend the WorkOpportunity Tax Credit (WOTC) andhave it apply to nonprofit organiza-tions.

Across the nation, people with intellectu-al, developmental, and physical disabili-ties face a crisis in the availability ofdecent, safe, affordable, and accessiblehousing. Over 700,000 people withdevelopmental disabilities live with agingparents (at least one of whom is over age65). For people who use wheelchairs orother mobility devices, finding housingwith even basic accessibility features (e.g.an entrance with no steps) ranges fromdaunting to impossible. While there areunique issues in urban, suburban, andrural areas, this difficulty is magnified inrural areas where there is a scarcity of anyrental housing and new units are rarelydeveloped. For people with disabilitieswhose resources are limited toSupplemental Security Income benefits,the affordability crisis is even worse.

Therefore, the 111th Congress mustincrease the supply of affordable andaccessible housing options that are inte-grated in the community, including homeownership and rental housing, to meet thegrowing unmet needs of people with dis-abilities and their families by:

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HOUSING

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• Significantly increasing funding for,and protecting the integrity of U.S.Department of Housing and UrbanDevelopment (HUD) programs suchas the Section 8 Housing ChoiceVoucher program, the Section 811Supportive Housing for Persons withDisabilities program, the HOMEInvestment Partnerships program, theCommunity Development BlockGrant program and increase fundingfor U.S. Department of Agriculturehousing programs as well as all otherfederal housing programs providingfunding for people with disabilities;

• Providing funding to address the needfor safe, affordable and accessiblehousing for individuals with disabili-ties due to weather related emergen-cies and the housing foreclosure andfinance crisis;

• Providing increased funding for theNational Affordable Housing TrustFund with deeply targeted eligibilitycriteria to increase the availability ofaffordable and accessible housing forpeople with disabilities;

• Reforming and restructuring theSection 811 Supportive Housing forPersons with Disabilities programusing proven “best practice” modelsto increase the number of units creat-ed, improve leveraging of otheraffordable housing funding streams,and develop a range of appropriatelysized and integrated permanent hous-ing opportunities;

• Opposing efforts to limit housingoptions, including efforts to weakenfair housing protections;

• Removing barriers that prevent peo-ple from renting or buying their ownhomes, through:

– simplifying programs;

– ensuring appropriate fair-marketrents;

– eliminating discrimination basedon source of income (such asSSI);

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– permitting people to acquireassets;

– providing funding to educate andtrain public housing authoritiesand service providers on thehousing needs of people withdisabilities;

– ensuring that nonprofit disabilityorganizations can administertenant-based rental assistance;and

– ensuring fairness and equity.

• Enacting legislation requiring newlyconstructed, federally assisted hous-ing, to incorporate universal designand visitability standards (elementsthat afford accessibility to at least adwelling’s first floor);

• Requiring that projects developedthrough the Low Income Housing TaxCredit apply design standards identi-cal to those in Section 504 of theRehabilitation Act; and

• Providing oversight of HUD’s man-agement of housing programs toensure that they meet the housingneeds of people with disabilities.

There are approximately 7 million individ-uals with intellectual and developmentaldisabilities in the United States. Whileover 75% live at home with family, mostfamilies receive little or no services andface long waiting lists for needed sup-ports. Life-long caregiving for individualswith disabilities, without support or assis-tance, has long-term negative economic,health, and social impacts on the well-being and quality of life of families.Families with relatives who have develop-mental disabilities are more likely to livein poverty than other families. Women,providing the bulk of informal caregiving,often juggle caregiving and employment.As people with disabilities are livinglonger, siblings are playing increasinglyimportant roles across the lifespan andfrequently assume primary caregivingresponsibilities when aging parents are nolonger able. Currently, there are over711,000 aging caregivers (over 60 years of

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age) of adults with developmental dis-abilities, a population rapidly growingand in great need of services and sup-ports.

The 111th Congress must strengthen theability of families to support their relativeswith disabilities by:

• Significantly increasing funding andestablishing a separate authorizationlevel for the Family Support Program;

• Maintaining full funding and ensureoversight for a national clearinghouseand technical assistance center onfamily support;

• Expanding the Family Medical LeaveAct to cover more workers by reach-ing smaller employers and part timeworkers; providing paid leave; andexpanding the definition of coveredfamily members to include, for exam-ple, siblings, grandparents, anddomestic partners;

• Fully funding the Lifespan RespiteCare Act to help ensure the availabil-ity of respite care for families withmembers of all ages with disabilities;

• Restoring funding to the Child Careand Development Block Grant(CCDBG) to expand child care servic-es and provide technical assistance tochild care providers so that they arebetter able to meet the needs of chil-dren with disabilities;

• Improving and expanding adoptionassistance and foster care programs tobetter address the multiple challengesfacing children with disabilities andtheir adoptive or foster families;

• Improving and expanding adoptionassistance and foster care to promoteand support parents with disabilitieswho wish to adopt or be foster par-ents;

• Addressing inequities in access toand funding for direct support care-giver services for all Medicaid-eligi-ble developmental disability popula-tions;

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• Creating a registry, consistent withrights to privacy, to facilitate re-unifi-cation of individuals with disabilitieswho were somehow separated fromtheir families;

• Expanding and increasing funding forthe National Family Caregiver Supportprogram to fully include older care-givers of adults with disabilities; and

• Providing a caregiver tax credit tofinancially assist families with out-of-pocket costs for disability-relatedexpenses.

Public education for all is a cornerstone ofour democracy. It is the mechanism bywhich this nation prepares all students topursue the benefits of freedom and toexercise fully their rights and responsibili-ties as citizens. The Individuals withDisabilities Education Act (IDEA) ensuresthat all children with disabilities not onlyhave the right to attend public schools buthave access to the general education cur-riculum and meaningful educationalexperiences. The Elementary andSecondary Education Act, also known asthe No Child Left Behind Act (NCLB),must ensure that all children have accessto a high quality education and continueto align special education and generaleducation laws. Students with disabilitiesmust be held to the same high expecta-tions as their non disabled peers and theiracademic progress accurately measuredand reported. Students with disabilitiesface multiple attitudinal, environmental,financial, and support barriers in access-ing postsecondary education. The HigherEducation Opportunity Act (HEOA) offersan opportunity for students with intellec-tual disabilities to overcome some ofthose barriers and have access to a post-secondary education that was untilrecently unavailable.


IDEA

• Fully fund all components of IDEAand provide a significant infusion offunds into Part C, Head Start, andother early intervention programs;

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• Amend IDEA to place the burden ofproof on school systems rather thanparents under the due process provi-sion;

• Amend IDEA to allow courts to awardfees to expert witnesses who are notattorneys;

• Provide oversight to ensure that themajor components of IDEA, such asleast restrictive environment (LRE),due process, transition, and individu-alized education programs (IEPs) areproperly and fully implemented;

Elementary and Secondary Education Act(as amended by NCLB)

• Reauthorize ESEA and continue toalign IDEA to ensure access to thegeneral education curriculum and ameaningful education;

• Ensure appropriate assessments for allstudents with disabilities by develop-ing a variety of universally-designedassessments that accurately measurethe progress of students with disabili-ties;

• Adopt and utilize a consistent calcu-lation and reporting of a graduationrate that accurately accounts for theacademic achievement of all stu-dents;

• Adopt new policies to significantlyreduce the unacceptably high dropout rate of students with disabilities;

• Support training and research initia-tives to enhance effective transitionservices from secondary education topostsecondary and employment;

• Enhance adult education, vocationaltraining, post-secondary educationand lifelong learning opportunitiesfor students with disabilities, particu-larly students with intellectual and/ormultiple impairments;

• Ensure that initiatives such as charterschools, vouchers, and individualeducation savings accounts do notadversely affect public education; theaccess of students with disabilities,especially those categorized as hav-

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ing intellectual disabilities (who his-torically have extremely low rates ofinclusion in these initiatives), to inclu-sive educational settings; and theguarantee of a free, appropriate publiceducation for all students with disabil-ities;

• Require any federal funds used to con-struct and renovate schools to enablesuch schools to become fully accessi-ble;

Early Intervention and Preschool Programs

• Increase funding for early interventionand preschool programs;

• Ensure adequate funds are allocatedto conduct research and the develop-ment of evidence-based practicesfrom early intervention through post-secondary education to support learn-ing of students with disabilities;

Higher Education

• Fully fund current and new disabilityprovisions in Title VII of the HigherEducation Opportunity Act, includingthe Model Comprehensive Transitionand Postsecondary Programs andCoordinating Center, NationalTechnical Assistance Centers; andPrograms to Provide Students withDisabilities with a Quality HigherEducation;

• Ensure students with intellectual dis-abilities enrolled in ComprehensiveTransition and PostsecondaryPrograms have access to work studyprogram and Pell grants; and

Personnel

• Expand and improve in-service andpre-service personnel preparationunder Part D of IDEA, NCLB and theHigher Education Act so that all spe-cial education teachers can meet thenew “highly qualified” standard andto develop programs to expand thepool of undergraduates majoring inspecial education.

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38


Social Security is not only a retirementprogram. It is an insurance program toprotect against poverty in retirement or asa result of disability or death of a familywage earner. More than one-third of allSocial Security checks go to non-retirees,including nearly seven million peoplewith disabilities. These beneficiariesinclude workers with disabilities andpeople with disabilities who are depend-ents and survivors of disabled workers,retirees, and deceased workers. Manydepend solely on their Social Security orSupplemental Security Income benefitsand related health coverage for theirbasic survival. Discussions about SocialSecurity reform, however, usually focuson retirement benefits and seldomaddress potential effects on people withdisabilities in the retirement, disabilityand survivors programs. We supportefforts to ensure the solvency of theSocial Security Trust Funds over a 75-yeartime frame while preserving the pro-gram’s basic structure and strengtheningits insurance functions. We do not sup-port efforts to create private accounts outof the Social Security Trust Funds. Theimpact of the resulting market risk, bene-fit cuts, or additional trillions of dollars indeficits would be devastating for peoplewith disabilities.

People with severe disabilities have expe-rienced increasingly long delays anddecreased service in accessing criticalSocial Security benefits. Processing timeshave grown, especially at the hearinglevel where delays have reached intolera-ble levels. In some hearing offices,claimant representatives report thatclaimants wait more than two years toreceive a hearing and decision. Peoplewith severe disabilities have been bearingthe brunt of the backlog crisis. Behind thenumbers are individuals with disabilitieswhose lives have unraveled while waitingfor decisions – families are torn apart;homes are lost, medical conditions dete-riorate, once stable financial securitycrumbles, and many individuals die.Local SSA field offices have been threat-ened with closing or having their hoursopen to the public reduced. Despite dra-

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matically increased workloads, staffinglevels throughout the agency are at recordlows.


Overall structure

• Protect and expand the effectivenessof income support programs and theirrelated health coverage programs inthe Social Security Act, including theOld Age, Survivors, and DisabilityInsurance (Title II) programs,Supplemental Security Income (SSI)(Title XVI) program, Medicare (TitleXVIII), and Medicaid (Title XIX);

• Reject any proposal to privatize orotherwise diminish Social Securitytrust funds or revenues dedicated tothe trust funds;

• Support proposals to ensure the long-term solvency (over 75 years) of theSocial Security Trust Funds throughadjustments that spread the costs andare as minimal as possible;

• Maintain the insurance protections ofthe Title II programs for people withdisabilities;

• Recognize that intellectual disabili-ties, cerebral palsy, and most otherdevelopmental disabilities are lifelongconditions. Therefore, maintain SSIand Title II as cash assistance pro-grams that are relevant and viable forchildren and adults with these condi-tions;

Definition of Disability

• Reject any proposal that would furthernarrow the definition of disability andlead to the loss of critical supports andservices for children and adults withsignificant disabilities;

• Increase the Substantial GainfulActivity (SGA) level to the level usedfor people who are blind;

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Administrative Issues

• Fully fund the administrative expens-es of the Social SecurityAdministration (SSA) to ensure thatthe service needs of the public aremet, particularly for people applyingfor disability benefits and those whorequest a hearing;

• Monitor changes in the process fordetermining disability and ensure theprotection of claimants’ due processrights, including the right to a full andfair administrative hearing by anindependent decision-maker whoprovides impartial fact-finding andadjudication;

• Permanently extend the attorneys’fees payment system to people in theSSI program.

• Require the Social SecurityAdministration (SSA) to minimizeoverpayments by establishing an effi-ciently working, beneficiary-friendly,system for collection of earningsreports and adjustments of benefitspayments. Require SSA to waivenon-fraudulent overpayments whenSSA has failed to notify the benefici-ary within a reasonable time period;

• Provide oversight to review andimprove the representative payee sys-tem;

Supplemental Security Income

• Substantially increase the resourcelimit for SSI to the level it would havebeen had it been indexed for inflationsince inception. Annually index theSSI resource limit for inflation;

• Increase the SSI earned and unearnedincome exclusions to the level theywould be had they been indexed forinflation since inception, and indexfor inflation annually thereafter;

• Extend continued Medicaid eligibilityfor SSI/Medicaid beneficiaries whoearn their way into the Title IIDisability Insurance program so thatthey may continue to have the sup-ports necessary to work;

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• Permanently extend eligibility for SSIto refugees, asylees and other immi-grants who are disabled or elderly;

• Enact a program to allow SSI benefici-aries to maintain resources dedicatedfor housing purposes;

• Ensure that SSI beneficiaries can par-ticipate in appropriate IndividualDevelopment Accounts, retirementplans (such as 401(k) accounts), andother similar accounts without jeop-ardizing their eligibility for SSI;

Retirement, Survivors, and DisabilityInsurance

• Eliminate the 5-month waiting periodfor eligibility for Title II disability ben-efits and eliminate the additional 24-month waiting period for Medicare forTitle II beneficiaries with disabilities;

• Enact an earnings offset work incen-tive for Title II beneficiaries that paral-lels work incentives for SSI;

• Allow on-going presumptive re-enti-tlement to Title II disability benefits forthose who lose benefits due to workbut continue to be disabled;

Disabled Adult Child (DAC) Benefits

• Improve requirements for “disabledadult child” eligibility to eliminatework disincentives;

• Exempt Disabled Adult Child benefi-ciaries from the Family Maximumwhen they are not living in the house-hold of the parent/spouse;

• Ensure that individuals who adoptspecial needs children are not affectedby application of the family maximumwith respect to those adopted chil-dren;

Employment Issues

• Ensure that people who work in shel-tered or other subsidized settings haveFICA taxes paid on their behalf andreceive appropriate work credits forTitle II and Medicare eligibility;

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• Enact technical and substantivechanges to the Ticket to Work andWork Incentives Improvement Act toensure the Act operates as intendedfor our constituents;

Other

• Ensure adequate benefit levels andprotect buying power through appro-priate cost of living adjustments;

• Eliminate marriage penalties in SocialSecurity disability policy;

• Permanently authorize the SocialSecurity Administration’s authority toconduct demonstration programs, solong as beneficiaries are protectedfrom any disadvantage as a result ofparticipating in demonstration proj-ects;

• Exclude the AmeriCorps State andNational and AmeriCorps NationalCivilian Community Corps programpayments for purposes of determiningTitle II Disability program eligibilityand benefit amounts; and

• Support the development of interdis-ciplinary teams of clinicians with spe-cialized developmental and assess-ment expertise to provide expertisefor adjudicators who determine eligi-bility for disability benefits.

Millions of Americans with disabilitieshave difficulties obtaining transportation.Transportation provides a vital lifeline forpeople with disabilities to access employ-ment, education, healthcare and commu-nity life. With the upcoming reauthoriza-tion of the Safe, Accountable, Flexible,Efficient Transportation Equity Act – aLegacy for Users (SAFETEA-LU) and theurgent need for economic stimulus, sig-nificant expansion of public transporta-tion is possible. These investments willachieve many important societal goalssuch as more jobs, a cleaner environmentand better mobility options for seniorsand people with disabilities. Principles ofuniversal design should be integrated inthe development of new transportationdevices and projects to ensure greatermobility for people with disabilities. The

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TRANSPORTATION

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111th Congress should expand transporta-tion opportunities for people with disabil-ities by:

• Increasing funding for the FederalTransit Administration programsincluding mass transit programs(including paratransit), the Section5310 program for the elderly and peo-ple with disabilities, the Section 5317of the New Freedom program, theUnited We Ride interagency initiative,and other critical programs;

• Streamlining the 5310 program so thatit is readily available for nonprofitorganizations for the purpose forwhich they are established;

• Expanding mobility management andtravel training services for individualswith disabilities in order to createmore public and private coordinatedtransportation systems;

• Simplifying the coordinated planningprocess for the programs that servepeople with disabilities and creatingtransparency and accountability at theDepartment of Transportation;

• Promoting tax policy that encouragesgreater mobility for people with dis-abilities;

• Improving accessibility in and aroundtransit locations;

• Promoting policies that expand theavailability of accessible taxis, busesand other transportation vehicles andsystems, particularly for rural andunderserved communities;

• Providing funding to Amtrak toimprove station accessibility;

• Improving airline accessibility; and

• Requiring new federally supportedtransportation technologies to meetuniversal design standards.

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The legislative agenda delineated belowreflect major laws and programs that areexpected to receive scrutiny in the 111thCongress. These laws and programs alsoplay key roles in the lives of our con-stituents and their families. In particular,they provide the essential health care,employment, family, transportation, andtechnology supports to make communityliving a reality for our constituents.Essential civil rights protections, criminaljustice, data collection, theDevelopmental Disabilities Act, emer-gency preparedness, foster care andadoption, immigration and naturaliza-tion, liability insurance protection, non-profit organizations, prevention and qual-ity of services are addressed by this agen-da. Given their importance, and theexpectation that they will be addressed inthis Congress, they are deemed our prior-ity agenda (for convenience, they are list-ed alphabetically).

Voting Rights Reform

Individuals with disabilities, individuallyand collectively, offer an important andneeded voice within the voting public.Ensuring voting independence, accuracy,and access continue to be key issues forthis constituency. The Help America VoteAct (HAVA) of 1992 required fully acces-sible polling places for people with dis-abilities by January 1, 2006. This promisehas not been fulfilled. According to vot-ers who reported their experiences in the2008 elections, too many polling placesand voting technologies throughout thecountry remain inaccessible.Additionally, state laws requiring voteridentification and/or voting machineswith “paper trails” have created inconsis-tency in voting technology and confusionamong voters with disabilities.Deceptive, misleading and intimidatingpractices on the part of some electionofficials and others have made it moredifficult for many individuals with disabil-ities to become properly registered and/orto vote.

The 111th Congress should:

• Conduct oversight (e.g. hearings,

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CIVIL RIGHTS

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reports) to document the progressachieved in implementing the HelpAmerica Vote Act (HAVA) of 1992addressing the right of people withdisabilities to vote privately and inde-pendently in any election, to rectifycontinuing failures to meet the provi-sions of the law and to make recom-mendations for improvement;

• Pass legislation that will protect peo-ple with disabilities from deceptive,misleading and intimidating practiceson the part of election officials andothers; and

• Ensure that any new voting reform leg-islation provides equal and full accessto voting systems and polling placesfor voters with disabilities;

Other Civil Rights


• Pass legislation that will include dis-ability in the federal definition of“hate crime” and provide resources tostates for the prosecution of hatecrimes based on disability;

• Protect and promote stronger enforce-ment of existing civil rights laws forpeople with disabilities, particularlythe Americans with Disabilities Act,Individuals with Disabilities Edu-cation Act (IDEA), Fair Housing Act,Civil Rights of InstitutionalizedPersons Act (CRIPA), Sections 503,504 and 508 of the Rehabilitation Act,Help America Vote Act (HAVA),National Voter Registration Act(“motor voter”), and Air Carrier AccessAct;

• Increase funding for federal govern-ment entities that enforce disabilityrights laws, including the EqualEmployment Opportunity Com-mission (EEOC), the ElectionAssistance Commission (EAC) andcivil rights offices in the Departmentsof Justice, Health and HumanServices, Housing and UrbanDevelopment, Labor, Education,Homeland Security, andTransportation;

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LIP

NO

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• Pass new legislation to protect indi-viduals from discrimination in areassuch as victimization or criminaliza-tion based on disability.

• Preserve and enhance all federal pro-grams that support protection andadvocacy services for people withdisabilities;

• Preserve and enhance legislation andsocial programs that protect the rightsof children and youth with disabili-ties, particularly those who are servedby foster care systems;

• Enact protections, including sanc-tions, against abuse, neglect, andinappropriate use of physical andchemical restraints and seclusion inall settings;

• Ensure that legislation dealing withissues such as physician-assisted sui-cide, stem cell research and researchutilizing human subjects includesprotections against abuse and dis-crimination on the basis of disability;

• Take action to ensure that the UnitedStates is an active leader in promotingthe human and civil rights of childrenand adults with disabilities in all partsof the world, specifically by ratifyingthe UN Convention on the Rights ofPersons with Disabilities; and

• Create and fund a research and train-ing effort focusing on internationalcooperation on disability.

Statistics clearly indicate that more andmore individuals with disabilities areending up in penal institutions and juve-nile justice facilities. Many end up insuch placements due to the lack of otheralternate treatment programs. Such indi-viduals are frequently the victims ofabuse and neglect. Too little is beingdone to protect these individuals and pre-vent systemic mistreatment.


• Expand the authority and the fundingfor the Department of Justice to carryout criminal justice initiatives andactivities that affect individuals with

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CRIMINAL

JUSTICE

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disabilities, including those unique toindividuals with intellectual disabili-ties, cerebral palsy, and other relateddisabilities in the following areas:

– Training of all personnel in thecriminal justice system aboutissues unique to our constituents,including identification of a dis-ability;

– Providing for research to assistthe Attorney General in collect-ing valid, reliable national datarelating to crimes against individ-uals with developmental andrelated disabilities for theNational Crime Victims Surveyconducted by the Department ofJustice;

– Developing and disseminatingmodels of best practices;

– Providing appropriate crime vic-tim assistance to people with dis-abilities;

– Preventing discrimination by thecriminal justice system againstvictims, witnesses, and thoseaccused of crimes on the basis ofdisability;

– Ensuring appropriate treatmentof prisoners with intellectual dis-abilities or psychiatric diagnoses,and ensuring that penal andjuvenile justice facilities are notused as “dumping grounds” forsuch individuals;

– Ensuring that appropriate med-ical interventions, includingpharmaceuticals, are available toindividuals with disabilities, par-ticularly those with behavioraldisabilities, to ensure that theyare not inappropriately relegatedto the criminal justice system;

– Prosecuting individuals thatcommit, and entities that areparty to, physical, psychological,or sexual abuse, mistreatment, orneglect of children or adults withdisabilities; and

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– Ensuring inexpensive and timelyaccess by families, providersand states to Federal criminalbackground checks for anyoneemployed in the disability serv-ice system.

The collection of accurate data on theincidence, prevalence and wellbeing ofindividuals with developmental disabili-ties is essential to informing public policy.Significant gaps in data collection exist.Many national surveys still do not includequestions that identify disability in a con-sistent manner. Different measures of dis-ability across various surveys make it dif-ficult to assess the status of people withdisabilities and identify trends.Consequently, there is no comprehensivedata on individuals with developmentaldisabilities and their families.


• Establish an Office of DisabilityStatistics;

• Insert a common set of questionsabout disability in national surveys,such as those included in theAmerican Community Survey and theCurrent Population Survey;

• Provide funding to improve andexpand the collection and publica-tion of population-based and otherdata regarding our constituents, andas appropriate, other disabilities,including:

– Federal health, income mainte-nance, educational, employ-ment, housing, transportation,social, economic, and criminaljustice demographics and statis-tics;

– Information on unmet needs ofindividuals with disabilities whoare unserved or underserved,including specific data on statewaiting lists;

– Information on the incidenceand prevalence of cerebralpalsy, intellectual and develop-mental disabilities;

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COLLECTION

RY

OR

ES

F)

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49


– Health status in national initia-tives such as Healthy People2010 and Healthy People 2020;

– Projected demographic trendsamong individuals with devel-opmental and other disabilities;

– Projected demand for directsupport workers, including sta-tistics related to recruitment,training and retention innova-tions;

– Abuse, neglect, hate crimes,capital punishment, and otherforms of victimization againstpeople with intellectual disabili-ties (formerly referred to as men-tal retardation) cerebral palsyand, as appropriate, other dis-abilities;

– Effective health promotion andprimary, secondary, and tertiarydisability prevention strategies;and

– Identify individuals who areMedicaid eligible but not able toaccess services, and ascertainimpact on families.

The Developmental Disabilities and Billof Rights Act (DD Act) is the fundamen-tal law supporting states to enhance thelives of people with developmental dis-abilities and their families. This law helpsthe approximately 4.5 million peoplewith developmental disabilities achieveindependence, productivity, integrationand inclusion in society.


• Reauthorize the DevelopmentalDisabilities Assistance and Bill ofRights Act (DD Act);

• Increase funding for programs author-ized under the DD Act, including:

1.State Grant Programs (Councilson Developmental Disabilities);

2.Protection and AdvocacySystems;

DEVELOPMENTAL

DISABILITIES ACT

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3. University Centers for Excellencein Developmental Disabilities,Education, Research, andService;

4. Projects of National Significance;

• Reauthorize the Title III Program forDirect Support Workers to addressthe direct support workforce shortageand improve the recruitment, train-ing, support, and retention of a quali-fied direct service professional work-force in each state;

• Provide a formula grant to every stateand territory for the Family SupportProgram under the Act with a sepa-rate appropriations line item;

• Give states the option to provide tra-ditional family support systemschange activities and/or service inte-gration activities;

• Protect and expand the authority ofProtection and Advocacy Systems toinvestigate abuse, neglect, anddeaths, and to pursue class action lit-igation on behalf of our constituentswherever they live;

• Increase the meaningful participationof people with disabilities and fami-lies in the advisory and/or governingbodies of state DD Act programs;

• Support federal funding for self-advo-cacy leadership activities directed byself-advocates with appropriate orga-nizational and infrastructure sup-ports;

• Initiate a leadership developmentprogram for public and privatehuman service organizational leader-ship;

• Ensure that any expansion in cover-age or activities in the reauthorizationof the DD Act be accompanied withincreased funding so as not to resultin negative fiscal effects or programoutcomes for the programs currentlyauthorized under the Act; and

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• Expand the areas of emphasis that areaddressed by the UCEDDs and StateCouncils to include post secondaryeducation

Recent natural, public health and manmade disasters continue to demonstratethat both preparedness and relief effortsremain critically inadequate with regardto people with disabilities. People withdisabilities still disproportionately repre-sent those who remain uprooted and atrisk in communities around the country,as well as on the Gulf Coast. While signif-icant legislative action to address the situ-ation of people with disabilities in emer-gency preparedness and relief efforts hastaken place, much remains to be done.Furthermore, the legislative progress thatwas achieved must be built upon.

The 111th Congress should build on theprogress made in addressing the needs ofthe disability community in emergencypreparedness and response efforts by:

• Conducting oversight (e.g. hearings,reports) of existing laws to documentprogress to date, address the needs ofpeople with disabilities in emergencypreparedness and response efforts,and address continuing failures andchallenges and to make recommenda-tions for improvement;

• Passing additional legislation that will:

– Require fully accessible tempo-rary and long-term relief housingof at least 10% of available ordeveloped housing resources;

– Provide housing for individualswith disabilities in general shel-ters using ‘medical shelters’ onlyas specifically needed;

– Exclude institutionalization as asolution to housing needs forpeople with disabilities, exceptin a dire emergency and for anextremely short period of time;

– Provide specifically for disabili-ty-related service coordination;

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MANAGEMENT

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– Provide specifically for mentalhealth and substance abuseservices related to disasters andemergencies;

– Provide for legal services offeredby legal experts with specialtraining in disability rights andother disability law;

– Provide for a well coordinatednetwork of regional disabilitycoordinators to work with thedisability coordinators at thefederal level;

– Develop resources and trainingof first responders and other per-sonnel in the specialized needsof people with disabilities andfamilies; and

– Provide that direct support pro-fessionals are considered“essential personnel” in emer-gency preparedness plans andresponse;

• Assuring that all federal agencies,federally contracted entities and otherrelevant organizations are account-able for developing and participatingin coordinated approaches to disasterand emergency preparedness that areefficient, non-duplicative and addressthe needs of people with disabilities;

• Appropriating and targeting adequateresources throughout the U.S. tocoordinate state and local effortsspecifically to ensure the effectiveinvolvement of people with disabili-ties and their representatives in disas-ter and emergency preparednessefforts; and

• Establishing an Office on Disability inFederal Emergency ManagementAgency (FEMA) and provide adequateauthority and resources for the role ofDisability Coordinator to fulfill theexpectations expressed in the StaffordAct.

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At least one third of the more than500,000 children and youth in Americanfoster care systems today have disabilities.The very systems intended to protect chil-dren were not designed to identify, assessand manage the needs of children withdisabilities and their foster families. Oncein the foster care system, children withdisabilities may face a full range of sys-temic problems that prevent positive lifeexperiences and often experience abuseand neglect. Caseworkers lack the toolsto identify and assess disabilities; fosterparents lack even basic information aboutthe special needs of children placed intheir homes, and foster children with dis-abilities are often considered “unadopt-able.”


• Fully fund all programs designed tosupport and assist children and youthin foster care systems, including:

– Title IV-E Foster Care Program

– Title IV-E Adoption AssistanceProgram

– Title IV-B Child Welfare ServicesProgram

– Title XX Social Services BlockGrant Program

– Child Care and DevelopmentBlock Grant

– Child Abuse Prevention andTreatment Act (CAPTA)

– Head Start

– Medicaid services for foster chil-dren

• Pass legislation requiring theDepartments of Health and HumanServices and Education to collaborateto:

– Develop and establish a uniformnational data tracking system,consistent throughout the statesthat identifies children and youthin foster care systems who havedisabilities and to assess thequality of their lives as a result ofthe government provided servic-es and supports they receive; 53


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AND ADOPTION

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– Establish a coordinatedapproach to information, sup-port and training for foster fami-lies, child welfare workers andeducators that will serve toenhance the supports providedand the quality of life for allinvolved;

– Establish planning protocols andservices for youth with disabili-ties who are transitioning out offoster care due to their age; and

– Strengthen efforts to identify andsupport adoptive families forchildren and youth with disabil-ities in foster care systems.


• Ensure that non-citizens with anytype of disability have a fair opportu-nity to enter and reside legally in theUnited States and to become citizens,without unnecessary or discriminato-ry restrictions;

• Ensure that our constituents who arelegal residents have access to essen-tial supports and services, such as SSI,food stamps, and Medicaid; and

• Pursue appropriate waivers of immi-gration law to allow for the activerecruitment of qualified immigrantsin order to bolster the direct supportand professional work force.


• Ensure fair compensation to our con-stituents for the negligence of anotherperson or a corporate entity, includ-ing health insurance and managedcare plans, and nonprofit organiza-tions; and

• Ensure that no entity can be absolvedof liability because the individualaffected has a disability.

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IMMIGRATION

AND

NATURALIZATION

LIABILITY

INSURANCE

PROTECTIONS

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The voluntary and religious nonprofit sec-tor has provided, and must continue toprovide, the overwhelming majority ofservices and supports for our constituents.The nonprofit sector must also be allowedto maintain its traditional role of advoca-cy.


• Assure the continuing ability of pri-vate sector nonprofit organizations toserve and advocate for people withdisabilities and their families;

• Assure fair eligibility for nonprofitgroups under any new charitable taxcredit or deduction;

• Assure that federal procurement rulesnot discriminate against nonprofitsand that nonprofits are afforded thesame privileges and benefits as smalland minority businesses;

• Support oversight activities that assureaccountability by nonprofits, whilemaking certain that this does notplace undue burdens on nonprofits,does not duplicate existing require-ments and is coordinated with stateoversight efforts; and

• Oppose any provision that wouldlimit the ability of nonprofit organiza-tions to engage in voter registrationand outreach activities.

The 111th Congress should endeavor toincrease the prevention of causes of dis-abilities by:

• Increasing funding for the NationalCenter on Birth Defects andDevelopmental Disabilities at theCenters for Disease Control andPrevention, the National Institutes ofHealth, the Environmental ProtectionAgency, and for other existing federaleducation and prevention initiatives,including but not limited to:

– Autism spectrum disorders;

– Cerebral palsy;

– Developmental disabilities;

– Environmental hazards;

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ORGANIZATIONS

PREVENTION

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– Fetal alcohol spectrum disor-ders;

– Food and drugs;

– Intellectual disabilities;

– Lead poisoning preventionthrough detection and abate-ment;

– Product safety;

– Secondary disabilities;

– Sexual exploitation and abuse;

– Smoking; and

– Transportation safety.

• Requiring public and private insur-ance payors to pay for medical foodsthat prevent disabilities such asPhenylketonuria (PKU);

• Ensuring full implementation of themandated Medicaid Early andPeriodic Screening, Diagnosis, andTreatment (EPSDT) program;

• Protecting and expanding the existingdisability-related warnings on alcoholproducts;

• Enacting legislation to limit the adver-tising of alcohol products to at-riskpopulations;

• Supporting legislation that will pro-vide nationwide tracking for theprevalence of developmental disabil-ities and associated environmentalcauses;

• Enhancing efforts to prevent theoccurrence of secondary conditionsfor individuals with life long disabili-ties through increasing resources tothe National Center on Birth Defectsand Developmental Disabilities andby expanding the State Disability andHealth program.

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The federal government has an importantrole in quality assurance, particularlyregarding health and safety issues. Ratherthan divest more of this responsibility tostates, the federal government should befulfilling its role in monitoring andenforcement of the quality of services toour constituents.

In order for this to happen, the 111thCongress must:

• Assure high quality services, supports,and access in all programs serving ourconstituents in which federal fundsare used;

• Require federal agencies to includefamilies, people with disabilities, serv-ice providers, and DevelopmentalDisabilities Act programs in allaspects of development and assess-ment of quality;

• Require training and technical assis-tance to states in order to implementcomprehensive systems of person-centered quality assurance;

• Assure that people with disabilities,through enforceable standards, havethe option to hire or fire their own staffand have a voice in how the servicesystem operates;

• Maintain, strengthen, and, whereappropriate, modernize federal moni-toring, oversight, and enforcementroles. This must include assessment ofconsumer outcomes and satisfactionto assure appropriate outcomes forbeneficiaries, as well as upgradingand enhancing data collection andmanagement information systems;

• Strengthen federal enforcement mech-anisms to include criminal, civil,and/or financial sanctions for states,communities, and other entities thatviolate federal requirements;

• Assure a well trained, well compen-sated, and stable workforce to supportpeople with disabilities and their fam-ilies by enacting legislation andincreasing financial support to pro-vide pre-service and in-service train-ing of professionals and other workers

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QUALITY OF

SERVICES

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to meet the diverse needs of individu-als with disabilities;

• Require CMS to develop and publisha comprehensive annual report toCongress on state level consumer sat-isfaction and outcomes; and

• Require CMS to publish annual dataon health and safety quality oversightof services, including ICF/MR andhome and community based servicesprograms.

A variety of federal agencies are responsi-ble for undertaking vital research activi-ties to prevent and ameliorate disabilityand to improve the quality of life for chil-dren and adults with developmental dis-abilities. Some of these research effortsdirectly target our constituents while oth-ers are more broad based.


• Significantly expand federal fundingof basic and applied research at theCenters for Disease Control andPrevention, the National Institutes ofHealth, the National Institute onDisability and RehabilitationResearch, and the EnvironmentalProtection Agency designed to bothimprove the quality of life for ourconstituents and to prevent the caus-es and effects of intellectual disabili-ties, cerebral palsy, and related dis-abilities;

• Support and expand the researchefforts of the Eunice Kennedy ShriverIntellectual and DevelopmentalDisabilities Research Centers to dis-cover the causes, effective treatmentsand supports for persons with devel-opmental and related disabilities;

• Provide funding for all relevant agen-cies to translate and disseminate topractitioners, families and policymak-ers new knowledge into effectivepractices;

• Assess the financial and social impactof the failure of government toaddress the unmet needs of our con-stituents;

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RESEARCH

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• Support training of existing andemerging scholars to conduct relevantresearch;

• Promote the prompt publication anddissemination of appropriate findings,written in commonly understood lan-guage;

• Support research that examines theeffects of multiple chemical exposureson the developing nervous system;

• Require the National Institute onDisability and Rehabilitation Researchto prioritize and fund field initiatedand other research in the areas ofphysical, intellectual, and develop-mental disabilities that represents amixture of methodological approach-es, including qualitative research, pol-icy analysis, survey research andexperimental design;

• Promote the implementation of accu-rate and independent research find-ings that assist people with develop-mental and other disabilities to leadquality lives in the community;

• Support research on disability andaging;

• Fully fund the National Children’sStudy to continue research examiningthe effects of the environment on chil-dren’s health and development; and

• Incorporate disability status in anyhealth related research

The 111th Congress should recognize thatsocial services programs are under fundedand that a wide variety of needs remainunmet. Title XX of the Social Security Act,the Social Services Block Grant, providesstates with flexible funding to providemany community based services to peo-ple with disabilities and others targetedlow income populations. The Congressshould:

• Increase funding for Title XX to $2.8billion.

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SOCIAL SERVICES

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In enacting tax policy, the 111th Congressmust:

• Reject repeal or reform of the estatetax and other tax reform that helpsonly the most wealthy;

• Protect low income taxpayers withdisabilities from paying higher taxes;

• Enable families of people with dis-abilities to stay intact, independent,and self-sufficient, and allow familiesto fund tax-favored savings plans forlong term support needs which willnot negatively impact eligibility for orbenefits in government programs;

• Incentivize the private sector to pro-vide cost effective supports for indi-viduals with disabilities and theirfamilies;

• Permanently extend the WorkOpportunity Tax Credit and have itapply to non-profit organizations;

• Allow income tax deductions forcharitable donations by non-itemiz-ers;

• Reject any provisions that would like-ly serve as disincentives to charitabledonations;

• Support tax policy that promotes theemployment of people with disabili-ties; and

• Allow a tax credit for individuals ortheir families who incur expense inmeeting long term support needs.

Many people with disabilities rely onaccessible technology, assistive and oth-erwise, to maintain independent lives andmaximize health options. The AssistiveTechnology Act of 2004 called for newapproaches on the part of programsauthorized under the Act to assure thatpeople with disabilities and their familiesare able to access the assistive technolo-gy they need. Funding is key to makingprogress.

The 111th Congress, therefore, should

• Ensure that people with disabilitieshave access to affordable, useabletechnology to support and enhancetheir lives;60


TAX POLICY

TECHNOLOGY

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• Fully fund all of the provisions of theAssistive Technology Act of 2004:

– State Grant Programs – Providesufficient appropriations to bringevery state and territorial pro-gram to at least the “minimumallotment” level as defined in the2004 reauthorization, and foraffected state programs, restorefunding that has been lost inrecent years. Protect and pre-serve the effectiveness of thealternate financing programs;

– Protection and Advocacy –Provide sufficient appropriationsto ensure viable Protection andAdvocacy for AssistiveTechnology services in each stateand territory;

– National Technical Assistance –Provide sufficient funding toensure quality technical assis-tance to each state and territorialprogram; and

– Research and Development –Provide sufficient appropriationsto support a meaningful level ofresearch and development ofassistive technology devices andstandards.

The 111th Congress should improve theTANF program and take appropriate stepsto address the growing poverty rates in ourcountry. The unique needs of the nearly50% of TANF recipients who have disabil-ities and their families must be addressed.Desired provisions include:

• Improving screening and assessmentfor disability;

• Securing appropriate supports andservices, including vocational rehabil-itation;

• Allowing a more expansive under-standing of the care of a child or otherfamily member with a disability to becounted as a work activity;

• Increasing state flexibility by givingstates credit for their effort to providerehabilitative and other services and

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(TANF)

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supports over a longer period of timein order to assist more individualswith disabilities to return to work;

• Pre-sanction reviews to ensure thatTANF recipients with disabilities arenot improperly sanctioned for aninability to comply with TANF rules;and

• Affordable and accessible transporta-tion and other supports necessary toobtain and retain employment.

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Legislative AgendaLegislative Agenda

In Partnership WithAmerican Association on

Intellectual andDevelopmental Disabilities

American Network of CommunityOptions and Resources

Association of UniversityCenters on Disabilities

National Association of Councilson Developmental Disabilities

for the 111th Congressfor the 111th Congress

DISABILITY POLICY COLLABORATION

2009 - 2010

Disability Policy Collaboration1660 L Street, NW, Suite 701Washington, DC 20036-5602

Phone 202-783-2229Fax: 202-783-8250

The Arc of the United States1010 Wayne Avenue, Suite 650

Silver Spring, MD 20910Phone 301-565-3842Fax: 301-565-3843

Web: www.thearc.org

United Cerebral Palsy1660 L Street, NW, Suite 700Washington, DC 20036-5602

Phone: 202-776-0406Fax: 202-776-0414Web: www.ucp.org

American Association on Intellectual andDevelopmental Disabilities (AAIDD)444 North Capitol Street, NW, Suite 846

Washington, DC 20001-1512Phone: 202-387-1968

Fax: 202-387-2193Web: www.aaidd.org

American Network of Community Optionsand Resources (ANCOR)1101 King Street, Suite 380

Alexandria, VA 22314Phone: 703-535-7850

Fax: 703-535-7860Web: www.ancor.org

Association of University Centers onDisabilities (AUCD)

1010 Wayne Avenue, Suite 920Silver Spring, MD 20910

Phone: 301-588-8252Fax: 301-588-2842

Web: www.aucd.org

National Association of Councils onDevelopmental Disabilities (NACDD)

1660 L Street, NW, Suite 702Washington, DC 20036-5602

Phone: 703-739-4400Web: www.nacdd.org

This document is also available on the Web sites of theparticipating organizations.

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