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Legislative Goals Disability Policy Collaboration 1660 L Street, NW, Suite 701 Washington, DC 20036-5602 Legislative Goals Phone 202-783-2229 Fax: 202-783-8250 for the 110th Congress The Arc of the United States 2007 - 2008 1010 Wayne Avenue, Suite 650 Silver Spring, MD 20910 Phone 301-565-3842 Fax: 301-565-3843 DISABILITY POLICY COLLABORATION Web: www.thearc.org United Cerebral Palsy 1660 L Street, NW, Suite 700 Washington, DC 20036-5602 Phone: 202-776-0406 Fax: 202-776-0414 Web: www.ucp.org American Association on Intellectual and Developmental Disabilities (AAIDD) 444 North Capitol Street, NW, Suite 846 Washington, DC 20001-1512 Phone: 202-387-1968 Fax: 202-387-2193 Web: www.aaidd.org American Network of Community Options and Resources (ANCOR) 1101 King Street, Suite 380 Alexandria, VA 22314 Phone: 703-535-7850 Fax: 703-535-7860 Web: www.ancor.org Association of University Centers on Disabilities (AUCD) In Partnership With 1010 Wayne Avenue, Suite 920 Silver Spring, MD 20910 Phone: 301-588-8252 Fax: 301-588-2842 Web: www.aucd.org This document is also available on the web sites of the participating organizations. 94342_001-048_R4.qxd 1/8/07 12:35 PM Page 3 WHO IS THE ARC? . 4 TABLE OF WHO IS UCP? . 4 CONTENTS WHO IS AAIDD? . 5 WHO IS ANCOR?. 5 WHO IS AUCD? . 6 WHAT IS MENTAL RETARDATION? . 6 WHAT IS CEREBRAL PALSY? . 7 USE OF TERMS . 7 DEVELOPMENT OF NATIONAL POLICY GOALS . 8 THE ARC AND UNITED CEREBRAL PALSY IN COLLABORATION . 8 OTHER PARTNERSHIPS . 8 SHAPING PUBLIC POLICY . 8 DEVELOPMENT OF LEGISLATIVE GOALS . 9 MONITORING LAWS AND POLICIES . 10 I. FEDERAL FISCAL POLICY GOALS. 10 INTRODUCTION . 10 BUDGET, ENTITLEMENTS, AND APPROPRIATIONS . 11 REVENUE POLICY . 12 II. PROGRAMMATIC GOALS . 13 INTRODUCTION . 13 A. CRITICAL GOALS . 14 MEDICAID . 15 DIRECT SUPPORT WORKERS . 19 HOUSING . 20 FAMILY SUPPORT. 22 EDUCATION . 23 SOCIAL SECURITY/INCOME MAINTENANCE . 25 B. PRIORITY GOALS . 28 AMERICANS WITH DISABILITIES ACT RESTORATION . 28 ASSISTIVE TECHNOLOGY . 29 CIVIL RIGHTS . 30 DEVELOPMENTAL DISABILITIES . 32 EMERGENCY PREPAREDNESS AND RESPONSE . 33 EMPLOYMENT, TRAINING, AND WAGES . 34 HEALTH CARE. 36 LONG TERM COMMUNITY SERVICES AND SUPPORTS FOR INDIVIDUALS. 38 QUALITY OF SERVICES . 39 TAX POLICY . 40 TRANSPORTATION . 41 C. ADDITIONAL IMPORTANT GOALS. 41 CRIMINAL JUSTICE . 41 DATA COLLECTION . 42 FOSTER CARE AND ADOPTION . 43 HABILITATION. 44 IMMIGRATION AND NATURALIZATION . 44 LIABILITY INSURANCE PROTECTIONS . 45 NON-PROFIT ORGANIZATIONS . 45 PREVENTION . 46 RESEARCH . 47 SOCIAL SERVICES. 48 TEMPORARY ASSISTANCE FOR Legislative Goals for the 110th Congress NEEDY FAMILIES (TANF) . 48 3 94342_001-048_R4.qxd 1/8/07 12:35 PM Page 4 Legislative Goals for the 110th Congress WHO IS The Arc is a membership organization made up of people with intellectual (such THE ARC? as mental retardation, a term seldom used anymore), developmental and related dis- abilities, their families, friends, interested citizens, and professionals in the disabili- ty field. Together they form state and local chapters of The Arc, making up the largest volunteer-based organization in the United States devoted solely to work- ing on behalf of this constituency. The Arc also advocates for people with other disability labels who, at times, will need similar supports and services in order to be as productive and independ- ent as possible. For more than 55 years, approximately 900 state and local chapters of The Arc have worked throughout the nation to ensure that their constituents have the supports and services they need, are accepted in their communities, have a voice in policies that affect them, and have control of their own lives. United Cerebral Palsy (UCP) is one of the WHO IS nation’s leading organizations serving and advocating for the more than 54 million UCP? Americans with disabilities. Its mission is to advance the independence, productivity, and full citizenship of people with disabili- ties through an affiliate network. Over half of UCP consumers are people with disabil- ities other than cerebral palsy. Through its nationwide affiliate network, UCP offers to individuals, families and communities such services as job training and placement, physical therapy, individual and family sup- port, early intervention, social and recre- ation programs, community living, state and local referrals, and advocacy. United Cerebral Palsy affiliates directly serve more than 170,000 children and adults with dis- abilities and their families every day. Legislative Goals for the 110th Congress 4 94342_001-048_R4.qxd 1/8/07 12:35 PM Page 5 The American Association on Intellectual and Developmental Disabilities (AAIDD, WHO IS formerly AAMR) is the world’s oldest and AAIDD? largest interdisciplinary organization of professionals concerned about intellectu- al and developmental disabilities. Today AAIDD has more than 40,000 members and service recipients, and this year the organization is celebrating more than 131 years of vision and professional leader- ship. AAIDD’s commitment to innovation and progress is as strong today as it was in the Association’s earliest days. AAIDD is the source of credible disability information based on research findings. The Association also provides a unique forum where professionals, parents, advo- cates, and policy makers can come together to discuss disability research, policy, and service issues. The AAIDD network strives to provide the best information, resources, supports, and services designed to enhance the quality of life and ensure full societal inclusion of persons with intellectual and develop- mental disabilities. The American Network of Community Options and Resources (ANCOR) is a national, nonprofit membership organiza- WHO IS tion representing private providers of sup- ports and services to people with disabili- ANCOR? ties. For more than 35 years, ANCOR has distinguished itself in the field by its balance of leading practices, resources, and advocacy for member agencies and the people and families they serve and support. ANCOR’s mission is to empow- er providers and people with disabilities to celebrate diversity and effect change that ensures full participation. Together, ANCOR’s nationwide network of 825 providers; 395,000 direct support profes- sionals; and 45 state provider associa- tions daily support more than 385,000 individuals with developmental and other disabilities, promoting an optimal quality of life to advance full participation. Legislative Goals for the 110th Congress 5 94342_001-048_R4.qxd 1/8/07 12:35 PM Page 6 The Association of University Centers on WHO IS Disabilities (AUCD) is a non-profit organi- AUCD? zation that represents the national network of university centers on disabilities, which includes University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs and Developmental Disabilities Research Centers (DDRC). The mission of AUCD is to advance policy and practice for and with people living with 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 satisfying qual- ity of life. AUCD members represent every state and most territories in the USA and over 80 universities and medical schools. Through its members, AUCD serves as a resource for local, state, national and inter- national agencies, organizations, and poli- cy-makers concerned about people living with developmental and other disabilities and their families. Mental retardation is defined as a disabil- WHAT IS ity characterized by significant limitations MENTAL both in intellectual functioning and in adaptive behavior as expressed in con- RETARDATION? ceptual, social, and practical adaptive skills. This disability originates before age 18. There are approximately 7.2 million Americans living with this condition. 1. Limitations in present functioning FIVE ASSUMPTIONS must be considered within the con- ESSENTIAL TO THE text of community environments typical of the individual’s age peers APPLICATION OF and culture. THE DEFINITION 2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sen- sory, motor, and behavioral factors. 3. Within an individual, limitations often coexist with strengths. 4. An important purpose of describing limitations is to develop a profile of needed supports. Legislative Goals for the 110th Congress 6 94342_001-048_R4.qxd 1/8/07 12:35 PM Page 7 5. With appropriate personalized sup- ports over a sustained period, the life functioning of the person with mental retardation generally will improve. The term mental retardation is gradually being replaced in common usage by terms such as intellectual disability. The term mental retardation is most commonly used as an eligibility requirement in many federal laws. People with intellectual dis- abilities have endured generations of social stigma despite efforts to address their inclusion as full participants in com- munities and society. Many of our federal programs require the use of out-moded and disrespectful terminology, specifically the term “mental retardation”. States are beginning to replace this term in legisla- tion with the term “intellectual disability”, wherever possible, and federal legislation should follow suit, without abandoning eligibility criteria and protections. Cerebral palsy (CP) describes a group of WHAT IS developmental disorders of movement and posture in children
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