ADRC National Grantee Meeting Baltimore, MD February 16, 2011 Sharon Lewis Commissioner Administration on Developmental Disabilities

ADD Mission “…to assure that individuals with developmental disabilities and their families participate in the design of, and have access to, needed community services, individualized supports, and other forms of assistance that promote self- determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs…” - The Developmental Disabilities Assistance and Bill of Rights Act

Philosophy “Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities…” - The Developmental Disabilities Assistance and Bill of Rights Act

Developmental Disabilities There are nearly five million Americans with developmental disabilities Developmental disabilities (DD) are severe, chronic disabilities attributable to mental and/or physical impairments, manifested before age 22, and are likely to continue indefinitely Require individually planned and coordinated services and supports

ADD Network State Developmental Disabilities Councils (DD Councils) Protection and Advocacy System (P&As) University Centers on Excellence in Developmental Disabilities (UCEDDs)

ADD Network Works to ensure access to opportunities and supports to: be included in community life live in homes and neighborhoods of their choosing pursue employment and economic self-sufficiency make valuable contributions to communities

State DD Councils 55 Governor-appointed DD Councils Identify the most relevant challenges & opportunities for people with DD and their families, develop and implement 5-year plans Work to address issues through systems change and capacity building efforts that promote self-determination, integration and inclusion Specific activities: training, coalition development and citizen participation, educating policymakers, advocacy, information and referral, and demonstrating innovation in services and supports.

Protection & Advocacy 57 Governor-designated agencies Provide legal, advocacy and support services to individuals with disabilities, including information and referral Investigation of complaints of violation of rights, work to resolve complaints through mediation and alternative dispute resolution When necessary, pursue litigation on behalf of people with disabilities

University Centers 67 UCEDDS in a college or university Implement four core activities:  provide interdisciplinary training  exemplary services and supports  cutting edge research  disseminate findings and other information

State DD Agencies Structure varies: Human Services, Public Health, Mental Health, Developmental Disability, Intellectual Disability Both within and outside of State Medicaid agency Local structures driven by State – independent offices, counties, regional boards, provider networks

DD Services Approximately 532,000 individuals with ID/DD receive Medicaid residential services and supports: –160,000 in large congregate care –21,000 in small ICF/MR –350,000 in small community settings (groups homes, foster care, supported living) Waitlists approximately 450,000 and growing

Family Caregiving Family Caregiving: –2.8 million of 4.7 million live with families as primary support –Of these, approximately 717,000 are in families with caregiver over age 60

ADRC – DD Approaches DD Agency Collaborative: –Arizona, Hawaii, Kansas, Minnesota, South Carolina, Texas, Vermont, Wisconsin DD Agency Information Sharing: –Alabama, Montana, Virginia UCEDD involvement: –Alaska, New Hampshire, Illinois, Iowa P&A and DD Councils

Contact Information Administration on Developmental Disabilities U.S. Department of Health and Human Services Mail Stop: HHH 405-D 370 L'Enfant Promenade, S.W. Washington, D.C