Administration for Community Living U.S. Department of Health and - PowerPoint PPT Presentation

Efforts to Support Community Integration Molly Burgdorf Administration on Intellectual and Developmental Disabilities Administration for Community Living Administration for Community Living U.S. Department of Health and Human Services

AIDD Overview

The DD Act Purpose: • 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 3

Principles of the DD Act • Independence: To have control • Productivity: To work or make other contributions to a household and community • Integration: Right to the same opportunities, services, community resources as all other Americans • Inclusion: Acceptance and encouragement of presence and participation in social, educational, work and community environments. 4

Self-Determination Individuals with developmental disabilities have: • Ability and opportunity to communicate and make personal decisions • Choice and control over type and intensity of services • Authority to control resources to get needed supports • Opportunity to participate in community • Support for self-advocacy, develop leadership skills, educate policymakers, develop public policy 6

Community Integration “Most integrated setting” • DD Act – Integration and inclusion in all facets of community life • Americans with Disabilities Act – End isolation and segregation of individuals with disabilities • Olmstead Decision – "institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life." – "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment."

DD Network • The DD Councils, P&As, and UCEDDs have unique — although complementary — roles to play • DD Network roles have included: – Providing resources to test new service models – Providing training on innovative strategies and evidenced-based best practices – Research and evaluation of outcomes and effectiveness – Protecting and advocating for the legal and human rights of people with I/DD 8

• AIDD works to promote systems change toward being person-centered, best supporting people with developmental disabilities and their families, and maximizing integration and inclusion in the community. • Trends in I/DD services and financing in the U.S. – Deinstitutionalization and the Growth of Home- and Community-Based Services

Institutional Residents with I/DD in the U.S.: 1848-2011 (in thousands) 250,000 195 200,000 s 150,000 u s n e C y l i 100,000 a D 2011 50,000 33.7 29.8 2009 0 0 1848 1858 1868 1878 1888 1898 1908 1918 1928 1938 1948 1958 1968 1978 1988 1998 2008 1853 1863 1873 1883 1893 1903 1913 1923 1933 1943 1953 1963 1973 1983 1993 2003 2011 Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary. *Excludes nursing facilities [31,234 persons in 2011].

Source: Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2011

Federal-State HCBS Waiver and ICF/ID Spending 1972-2011 $30 $27.8 HCBS Waiver $26.2 $25 Billions of 2011 Dollars $20 $18.6 $17.1 $15.5 $15 ICF/ID $14.5 $12.5 $12.8 $10 $5 $0 73 75 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 Fiscal Year Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

HCBS Waiver Spending by Disability Group: 1977 – 2008 UNITED STATES $30 Intellectual Disability Billions of 2008 Dollars (Federal-State) Physical Disability Mental Health $23.8 $25 $23.1 $21.9 $20.9 $20.0 $18.6 $20 $17.5 $15.3 $14.1 $15 $13.1 $10.9 $9.5 $10 $3.7 $5 $3.4 $3.2 $3.0 $2.9 $2.6 $2.4 $2.3 $2.1 $1.9 $1.5 $1.4 $0.1 $0 97 98 99 00 01 02 03 04 05 06 07 08 Mental Health Waivers ($72.1 Fiscal Year million) Source: Braddock (2011), Univ ersity of Colorado School of Medicine, Department of Psy chiatry .

27 States Cut in I/DD Spending in 2011: the Most in 34 Years of Data Collection 1978 - 7 1990 - 4 2002 - 2 1979 - 6 1991 - 6 2003 - 20 1980 - 18 1992 - 11 2004 - 16 1981 - 15 1993 - 18 2005 - 21 1982 - 14 1994 - 8 2006 - 23 1983 - 17 1995 - 6 2007 - 15 1984 - 10 1996 - 10 2008 - 25 1985 - 5 1997 - 8 2009 - 24 1986 - 5 1998 - 4 2010 - 21 1987 - 7 1999 - 10 2011 - 27 1988 - 6 2000 - 6 1989 - 5 2001 - 10 Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

Inflation-Adjusted Growth & Decline in I/DD Spending for FY2011 by State & Percentage State % Change State % Change State % Change Texas 11% Ohio 1% District of Columbia -1% Kentucky 10% Nebraska 1% Washington -1% Idaho 10% Vermont 1% Louisiana -1% Wisconsin 7% Montana 1% Iowa -1% North Dakota 6% Arizona 0% Maryland -2% New Jersey 6% Georgia 0% Colorado -3% Alaska 5% Michigan 0% Indiana -3% Oregon 4% Connecticut -0.03% Massachusetts -3% Arkansas 4% North Carolina -0.03% Pennsylvania -4% New Hampshire 4% Minnesota -0.1% Florida -4% South Carolina 3% California -0.5% Tennessee -5% Alabama 3% Delaware -1% Maine -5% Virginia 3% South Dakota -1% Utah -6% Wyoming 3% Hawaii -1% Mississippi -6% Kansas 2% West Virginia -1% New Mexico -6% Missouri 2% Nevada -1% Oklahoma -7% New York 1% Illinois -1% Rhode Island -9% 0.5% UNITED STATES Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

Decline in Number of Families Supported in 2009-11 600,000 481,282 500,000 435,422 Number of Families Supported 467,463 400,000 372,847 393,598 319,591 282,017 300,000 212,558 200,000 $4.02 BILLION, 2011 103,819 100,000 0 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 *Drop (-13,819) in families supported 09-11 due to reductions of 35,035 families across 25 states. Four states, KS, NJ, TN, & UT, terminated cash subsidies in 2011. Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

Community Living Successfully community living may include housing, services and supports, accessible transportation, employment, asset development, meaningful opportunities for self- determination, civic participation, assistive technologies and more

Examples from AIDD and the DD Network of Efforts to Support Community Integration

Self-Advocacy • Self-Advocacy Summits – AIDD held nine regional self-advocacy summits in 2011 and 2012 to: • Find out what is happening in the states on self-advocacy • Make state team plans to strengthen self-advocacy • Make national recommendations to strengthen self-advocacy – Envisioning the Future Report, http://alliesinselfadvocacy.org/2011- summit-report/ • National Gateway to Self-Determination Project – A consortium of 5 UCEDDs, established a Web-based clearinghouse on resources, training, and information on Self-Determination. – http://www.aucd.org/NGSD/template/index.cfm 19

Self-Advocacy • Partners in Policymaking , developed by the Minnesota DD Council, evolved into a national training model – Teaches leadership skills and techniques to develop positive partnerships with policy decision makers (e.g., elected officials, school personnel) and others who make policy decisions about services used by people with developmental disabilities and their families. – Many graduates have gone on to serve as advocates in the community.

Growth of HCBS • Iowa’s Money Follows the Person (MFP) demonstration grant, funded through CMS – Collaborative partnership between the Iowa Department of Human Services’ Medicaid Division and the Center for Disabilities and Development (CDD), Iowa’s University Center for Excellence in Developmental Disabilities. • CDD assisted DHS in leveraging Iowa’s $54 million MFP grant that has three goals: – Provide transition services necessary to assure consumers can successfully move from ICF/IDs to the least restrictive living environment of their choice. – Strengthen the HCBS system with an array of services provided under Iowa's traditional ID waiver to assure the supports in place are sufficient to sustain all eligible individuals in the community of their choice. – Rebalance the expenditures in long term care to provide improved access to home and community based services. 21

Iowa’s Money Follows the Person Impact on Individuals’ Lives Impact on System • • 207 individuals have transitioned Served as an on-going needs to the community assessment successful. • • Opening first bank account Training support for 70 providers and nearly 6,000 direct support • Seeing family members for professionals. holidays for first time in many • years Assisting with adding services to waiver program . • Having own mailbox • Getting first pay check 22