THE STATE OF THE STATES IN DEVELOPMENTAL DISABILITIES

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THE STATE OF THE STATES IN DEVELOPMENTAL DISABILITIES Richard Hemp, Mary Kay Rizzolo, Shea Tanis, & David Braddock Universities of Colorado and Illinois-Chicago REINVENTING QUALITY CONFERENCE BALTIMORE, MARYLAND AUGUST 5, 2014

OUTLINE I. PUBLIC SPENDING FOR I/DD SERVICES 1977-2013 (PRELIMINARY) II. THE RIGHTS OF PEOPLE WITH COGNITIVE DISABILITIES TO TECHNOLOGY AND INFORMATION ACCESS 2

I. PUBLIC SPENDING FOR I/DD SERVICES IN THE U.S.: 1977-2013 Billions of 2013 Dollars $70 $60 2011: $57.6 $61.6 $57.8 $54.4 $50 $45.8 $40 $30 $31.3 $20 $10 $15.2 $0 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13 Fiscal Year Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 3

INFLATION-ADJUSTED FEDERAL AND STATE SPENDING FOR I/DD SERVICES IN THE U.S.: 1977-2013 $40.0 $35.0 Federal Spending State Spending $35.2 $33.4 Billions of 2013 Dollars $30.0 $28.0 $28.8 $28.2 $25.0 $26.2 $20.0 $19.2 $24.1 $21.6 $15.0 $10.5 $10.0 $5.0$3.5 $11.7 ( Great Recession : December 2007 to June 2009) $0.0 1977 1979 1981 1983 1984 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 2011 2013 1978 1980 1982 1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010 2012 Fiscal Year Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 4

37 STATES INCREASED I/DD SPENDING IN FY 2013 -- 14 STATES DID NOT State % Change State % Change State % Change Missouri 12% Delaware 3% Kansas 1% Kentucky 10% Oklahoma 3% Oregon 0% Mississippi 9% South Carolina 3% Nebraska 0% Alaska 9% Michigan 3% New York -0.1% Georgia 9% Washington 3% Arizona -0.5% West Virginia 8% Iowa 3% Maine -1% Virginia 7% Nevada 3% Indiana -1% Massachusetts 6% Texas 2% Louisiana -1% Wisconsin 6% Maryland 2% North Carolina -1% Pennsylvania 6% Montana 2% Minnesota -2% Vermont 5% New Jersey 2% Connecticut -3% District of Columbia 5% South Dakota 2% Hawaii -3% New Hampshire 4% Rhode Island 2% Colorado -3% Utah 4% New Mexico 1% Florida -4% Tennessee 4% Ohio 1% Idaho -4% California 4% Alabama 1% Wyoming -5% North Dakota 4% Illinois 1% Arkansas -7% UNITED STATES 2.1% Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 5

MEASURING STATES COMMITMENTS TO I/DD SERVICES: FISCAL EFFORT FISCAL EFFORT is a ratio that ranks states on the proportion of their total statewide personal income devoted to financing I/DD services. FISCAL EFFORT is measured in terms of a state s spending for I/DD services per $1,000 of personal income. Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2014. 6

TOTAL I/DD SERVICES FISCAL EFFORT: 2013* New York Maine Louisiana Ohio North Dakota West Virginia Minnesota Iowa Pennsylv ania Vermont District of Columbia Wisconsin Connecticut Massachusetts Alaska Indiana Rhode Island Oregon Wyoming Arkansas New Mexico Delaware Kentucky Mississippi South Dakota UNITED STATES Nebraska Montana Missouri New Hampshire New Jersey North Carolina Kansas Michigan Idaho Tennessee South Carolina California Arizona Oklahoma Virginia Washington Maryland Georgia Utah Illinois Hawaii Texas Colorado Alabama Florida Nev ada $4.43 $1.53 $0.00 $1.00 $2.00 $3.00 $4.00 $5.00 $6.00 $7.00 $8.00 $9.00 $10.00 * (U.S.) Dollars per $1,000 of Statewide Aggregate Personal Income Source: Bureau of Economic Analysis (2014) $10.00 Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 7

TOTAL FISCAL EFFORT FOR I/DD SERVICES DECLINED DURING 2011-2013 Spending ($) per $1,000 Personal Income $5.00 $4.00 $3.00 $2.24 Total Community Services Institutional Settings (16+) $2.58 $3.49 $2.18 $3.94 $3.10 $4.17 $3.40 $4.40 $4.53 $4.43 $3.85 $3.76 $3.84 $2.00 $1.72 $1.60 $1.68 $1.00 $0.98 $1.31 $0.68 $0.84 $0.56 $0.77 $0.64 $0.59 $0.00 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 13 78 80 82 84 86 88 90 92 94 96 98 00 02 04 06 08 10 12 Fiscal Year Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 8

INFLATION-ADJUSTED I/DD SENDING BY DECADE: DECLINING INSTITUTIONAL SPENDING, SLOWER GROWTH FOR COMMUNITY SERVICES 16% % REAL CHANGE 14% 12% 10% 11.5% 11.8% Community 8% 6% 4% 4.6% Institutional 7.6% 2% 1.2% 2.6% 0% -2% -4% -2.8% -2.6% 77-80 81-91 92-02 '03-13 Fiscal Period Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 9

MEDICAID WAS 78% OF TOTAL I/DD SPENDING IN 2013 --66% OF MEDICAID WAS HCBS WAIVER SPENDING Federal-State Medicaid* 12.0% 10.2% Other State Funds Other Federal Funds (SSI/ADC, Title XX/SSBG) 77.8% Total I/DD Spending: $61.65 Billion *Total federal-state Medicaid: $48.0 billion a) HCBS Waiver (66%); b) Public & Private ICFs/ID (27%); and c) Related Medicaid (7%) Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 10

FEDERAL-STATE HCBS WAIVER SPENDING SURPASSED ICF/ID SPENDING IN 2001 Billions of 2013 Dollars $35 $30 $25 HCBS Waiver ICF/ID Related Medicaid* $23.9 $27.4 $28.6 $31.6 $20 $17.9 $19.0 $15.8 $15 $10 $11.7 $14.9 $13.4 $12.9 $13.0 $5 $0.2 $4.0 $0 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 13 78 80 82 84 86 88 90 92 94 96 98 00 02 04 06 08 10 12 Fiscal Year $2.5 $2.6 $2.8 $3.2 $3.3 *Related Medicaid includes Clinic and Rehabilitative Services, Targeted Case Management, Personal Assistance, State Plan Home and Community (e.g., 91-i, 91-j) and Administrative Services. Source: Braddock, D. et al., State of the States in Developmental Disabilities, 2014, preliminary. 11

USE CREATE A CHART TO COMPARE YOUR STATE TO OTHER STATES, OTHER REGIONS EXAMPLES OF THE 16 DATA OPTIONS FOR CHARTS: Total Fiscal Effort Community Fiscal Effort Community Spending as a Percent of Total I/DD Spending Percent of Total I/DD Caregiving Families Supported by State I/DD Agencies Aging I/DD Caregivers as Percent of Total Persons with I/DD StateoftheStates.org *ORDER OUR NEW MONOGRAPH: AVAILABLE OCTOBER 2014 12

II. THE RIGHTS OF PEOPLE WITH COGNITIVE DISABILITIES TO TECHNOLOGY AND INFORMATION ACCESS 167 ORGANIZATIONS HAVE ENDORSED COLORADO LEGISLATURE ADOPTED RESOLUTION MARCH 13, 2014 Visit AAIDD s Exhibit for More Info About the Declaration 13

ENDORSE THE DECLARATION ON THE RIGHTS TO TECHNOLOGY AND INFORMATION ACCESS REGISTER FOR THE 2014 COLEMAN CONFERENCE: ColemanInstitute.org 14

THANK YOU! Financial support from the U.S. Administration on Intellectual and Developmental Disabilities is gratefully acknowledged. We also gratefully acknowledge participation of the 51 State I/DD Agencies in data collection across the country. 15