Current AIDD Grant Period (2012-2017) Two data collection cycles: - - PowerPoint PPT Presentation

University of Colorado

Sibling Leadership Network National Conference of State Legislatures National Youth Leadership Network

Advisory Committee

• Current AIDD Grant Period (2012-2017)
• Two data collection cycles:
• FYs 2012 and 2013—Completed
• FYs 2014 and 2015 (Start fall of 2015)
• Review state budget and program document review;
• Develop and implement 51 tailored state spreadsheets;
• collection with territories began in 2013
• Obtain, interpret, and verify financial and programmatic data with

state officials; and

• Disseminate and provide technical assistance.

States report State Plan Medicaid (Personal Care, Rehab, Clinic, TCM); managed care (e.g. VT, WI); 1915(b/c) Waivers (e.g. MI) and Section 1115 Research and Demonstration Waivers (e.g. AZ)

State Local Federal

General Funds Local Funds Public ICF/ID Medicaid Match Local Medicaid Private ICF/ID Other State Funds Match HCBS Waiver Rehab Services Clinic Services Targeted Case Mgt. Personal Care

• Admin. Other

Other Federal Title XX/SSGB General Funds Local Funds Federal ICF/ID Medicaid Match Local Medicaid Other Federal Other State Funds Match General Funds Local Funds Federal ICF/ID Medicaid Match Local Medicaid Other Federal Other State Funds Match

BUDGET CATERORIES/VARIABLES FOR FOR STATE SPENDING/DATA COLLECTION

STATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE PERSONS) COMMUNITY SERVICES FUNDS (15 or Fewer Persons) PRIVATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE PERSONS)

SSI/ADC for HCBS Waiver

• Overview of IDD

Financial and Programmatic Trends through FY 2013

• Just published by

AAIDD

The Impact of the Great Recession

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 $0 $10 $20 $30 $40 $50 $60 $70 Billions of 2013 Dollars

$15.2 $31.3 $45.8 $54.4 $57.8 $61.6 2011: $57.6

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

UNITED STATES

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

• 2.0%

0.0% 2.0% 4.0% 6.0% 8.0% 10.0% 12.0% Percent Real Change 7.0% 3.3% 10.3% 7.1% 2.4% 6.0% 1.6% 2.0% 1.5%

• 0.6%

4.2% 2.4%

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

State Kentucky 40.3% Mississippi 38.8% Louisiana 35.3% Virginia 35.1% Missouri 34.8% Alaska 30.1% Pennsylvania 25.7% West Virginia 23.4% Montana 20.6% Georgia 19.9% Delaware 15.7% Connecticut 14.4% Maryland 13.2% South Carolina 13.0% Maine 12.7% North Dakota 12.5% Massachusetts 12.4% % Change Iowa 12.2% New Jersey 11.8% District of Columbia 11.4% Nebraska 10.8% Texas 10.8% Indiana 9.2% Utah 8.7% Tennessee 8.1% New Hampshire 8.0% North Carolina 8.0% Michigan 6.3% Alabama 5.8% Wisconsin 5.2% New York 4.6% Ohio 4.2% California 4.2% Oregon 4.0% % Change Illinois 3.9% Oklahoma 3.5% Wyoming 2.3% Nevada 1.6% South Dakota 1.4% Washington 1.3% Minnesota 0.7% Kansas 0.3% New Mexico

• 0.2%

Idaho

• 0.7%

Arizona

• 1.4%

Colorado

• 1.6%

Arkansas

• 2.7%

Rhode Island

• 5.2%

Vermont

• 7.2%

Florida

• 9.4%

Hawaii

• 11.4%

United States 8.5% % Change State Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

1978 - 7 1990 - 3 2002 - 4 1979 - 6 1991 - 6 2003 - 16 1980 - 16 1992 - 11 2004 - 17 1981 - 14 1993 - 18 2005 - 24 1982 - 14 1994 - 8 2006 - 15 1983 - 16 1995 - 11 2007 - 15 1984 - 8 1996 - 11 2008 - 17 1985 - 5 1997 - 10 2009 - 23 1986 - 5 1998 - 4 2010 - 22 1987 - 7 1999 - 10 2011 - 31 1988 - 7 2000 - 6 2012 - 13 1989 - 6 2001 - 10 2013 - 14

3% 10% 5%3% 58% 13% 7%

$61.46 Billion

Public Institutions (16+) 6 Person or Fewer Residential & Related Community Services Family Support Private Institutions (16+) 7-15 Person Settings Supported Living/ Personal Assistance Supported Employment (1.4%) ICF/ID (6 or fewer)

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015



IL Total Fiscal Effort: $2.70

• Ranks 43rd
• US $4.40



IL Community Fiscal Effort: $2.01

• Ranks 47th
• US $3.81
• Fiscal Effort is a measure
• f how much a state spends
• n I/DD LTSS per $1,000 of

statewide personal income.

• …in other words, how

much does your state spend after you control for state wealth – this allows you to compare your state to any other state regardless of state wealth.

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

Home and Community Based Services (HCBS) Waiver:

• Authorized in 1981 as a way
• f keeping people out of

institutions while lowering costs

• Supported almost 686,000

people with DD in FY 2013

• Reimburses states for a

variety of community-based services and supports

• Allows states to determine

how many people they will serve and what services they will offer

Total I/DD Spending: $61.48 Billion

Other State Funds (12%) Other Federal Funds (10%) Other Medicaid (5%) Home and Community Based Services (HCBS) Waiver (51%) Intermediate Care Facilities for Persons with I/DD (21%)

…It made up 78% of total I/DD spending in 2013

1 New York $277 18 Maryland $128 35 Virginia $78 2 Maine $241 19 South Dakota $125 36 Oklahoma $76 3 Vermont $240 20 Nebraska $124 37 Hawaii $74 4 District of Columbia $232 21 Oregon $122 38 Georgia $66 5 Minnesota $231 22 Massachusetts $118 39 Colorado $63 6 Connecticut $212 23 Indiana $117 40 Alabama $62 7 Alaska $211 24 Ohio $117 41 North Carolina $61 8 Rhode Island $198 25 Kansas $113 42 Arkansas $61 9 North Dakota $193 26 Kentucky $107 43 California $60 10 Wyoming $182 27 Delaware $106 44 South Carolina $59 11 West Virginia $181 28 Missouri $104 45 Utah $57 12 New Hampshire $161 29 Arizona $98 46 Illinois $49 13 Louisiana $157 30 Michigan $97 47 Florida $44 14 Wisconsin $152 31 Tennessee $96 48 Texas $42 15 Pennsylvania $140 32 Montana $91 49 Idaho $40 16 New Mexico $137 33 New Jersey $88 50 Mississippi $30 17 Iowa $130 34 Washington $87 51 Nevada $27

UNITED STATES $100

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

$218 $167 $124 $115 $112 $98 $83 $65 $64 $58 $100 $0 $50 $100 $150 $200 $250

Federal-State Waiver Spending per Capita (General Population)

Northeast New England Mid-Atlantic Great Plains Great Lakes Northwest Rocky Mountain Southwest Pacific Southeast U.S.

R e g i

• n
• 2. Northeast (NJ, NY, PR, VI)
• 10. Northwest (AK, ID, OR, WA)
• 1. New England (CT, ME, MA, NH, RI, VT)
• 8. Rocky Mountain (CO, MT, ND, SD, UT & WY)
• 3. Mid-Atlantic (DE, DC, MD, PA, VA, WV)
• 6. Southwest (AR, LA, NM, OK, TX)
• 7. Great Plains (IA, KS, MO, NE)
• 9. Pacific (AS, AZ, CA, CNMI, GUAM, HI, NV)
• 5. Great Lakes (IL, IN, MI, MN, OH, & WI)
• 4. Southeast (AL, FL, GA, KY, MS, NC, SC, TN)

 88 HCBS Waiver Applications for 2010:

• types of services

▪ definitions of services (n=1,329)

• # of “users”
• average units per user
• average cost per unit

 93 HCBS Waiver Amendments

• reasons for filing amendments

Rizzolo, M. C., Friedman, C., Lulinski-Norris, A., & Braddock, D. (in press – Feb/2013). Home and Community Based Services (HCBS) Waivers: A nationwide study of the states. Intellectual and Developmental Disabilities.

Over 1,300 definitions

Gobbledygook

Jargon

Community Transition Supports Care Coordination Companion/ Homemaker/ Chore/PA/SL Assistive and Medical Technologies Residential Habilitation Supported Employment Adult Day Health Education Individual Goods and Services Prevocational Services Family Training and Counseling Day Habilitation Self-Advocacy Training Health and Professional Services Financial Support Services Recreation and Leisure Respite Transportation

Residential Habilitation 53% Homemaker/ Chore/PA/SL 11% Day Habilitation 19% Supported Employment 3% Remainder 15%

• Prevocational Services (3%)
• Family Training and Counseling (2%)
• Transportation (2%)
• Care Coordination (2%)
• Health and Professional Services (2%)
• Respite (1%)
• Assistive and Medical Technologies (1%)
• AT and Environmental Mods (0.5%)
• Med Equip and PERS (0.7%)
• Community Transition Supports (<1%)
• Financial Support Services (<1%)
• Adult Day Health (<1%)
• Individual Goods and Services (<1%)
• Self Advocacy Training (<1%)
• Education (<1%)
• Recreation and Leisure (<1%)

Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015, based on Fujiura (1998, 2013) and Larson et al. (2001).

United States 2013

634,509 786,156 3,557,246

TOTAL: 4,977,911 PERSONS

13% 16% 71%

Supervised Residential Setting Alone or with Roommate With Family Caregiver

6% 3% 33% 46% 4% 4% 4% 7-15 Group Homes 35,908 Nursing Facilities 16+ 26,678 Private Institutions 16+ 22,256 Public Institutions 16+ 24,675 7-15 ICFs/ID 20,095

6/fewer Total: 504,897 (79.6%)

6/Fewer Supported Living 293,956 6/Fewer Group, Foster & Host Homes, ICFs/ID, Apartments 210,941

634,509 Individuals Served

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

United States 2013

Caregivers Aged 60+ 863,314 Caregivers Aged 41-59 1,247,882 Caregivers Aged <41 1,446,051

TOTAL: 3,557,246 PERSONS

35% 40% 25%

Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015, based on Fujiura (1998, 2013) and Larson et al. (2001).

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

0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5

MILLIONS OF FAMILIES

0.10 0.16 0.29 0.38 0.41 0.48 0.46 0.46 2.89 2.99 3.14 3.32 3.38 3.48 3.51 3.56 Total I/DD Caregiving Families Families Supported by State I/DD Agencies Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

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 $0.0 $1.0 $2.0 $3.0 $4.0 $5.0

Billions of 2013 Dollars

28% 37% 43% 53%

64% 71% 80% 82%

$0.2 $0.5 $1.2 $1.7 $2.4 $2.9 $3.2 $4.2 $4.2 $4.1

Non-Waiver Family Support Spending Federal-State HCBS Waiver Spending

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

1969 1970 1975 1980 1985 1990 1995 2000 2005 2010 2015 2020

Year

25 50 75 100 125 150 175 200

Number of Closures 1 2 7 10 27 46 77 113 133 147 171 176

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

1. DISTRICT OF COLUMBIA (1991) 2. NEW HAMPSHIRE (1991) 3. VERMONT (1993) 4. RHODE ISLAND (1994) 5. ALASKA (1997) 6. NEW MEXICO (1997) 7. WEST VIRGINIA (1998) 8. HAWAII (1999) 9. MAINE (1999)

• 10. INDIANA (2013)
• 11. MICHIGAN (2009)
• 12. OREGON (2009)
• 13. MINNESOTA (2011)
• 14. ALABAMA (2012)

Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

Smallest Institutional Census, FY 2013 1 Idaho 36 2 Nevada 47 3 Montana 55 4 Delaware 61 5 Wyoming 78 6 North Dakota 92 7 Arizona 106 8 Nebraska 126 9 Maryland 129 10 South Dakota 140 11 Colorado 149 12 Tennessee 182

Largest Institutional Census, FY 2013 1 Texas 3,932 2 New Jersey 2,341 3 Illinois 1,790 4 California 1,348 5 North Carolina 1,300 6 Mississippi 1,157 7 Pennsylvania 1,069 8 Ohio 1,066 9 New York 1,015

Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

5 10 15 20 25 Number of Remaining Institutions

New York Texas Ohio Illinois New Jersey Connecticut Arkansas California Mississippi North Carolina Pennsylvania South Carolina Virginia Florida Kentucky Massachusetts Missouri Washington Georgia Oklahoma Wisconsin Colorado Iowa Kansas Louisiana Maryland Tennessee Arizona Delaware Idaho Montana Nebraska Nevada North Dakota South Dakota Utah Wyoming

3 7 S t a t e s w i t h R e m a i n i n g I n s t i t u t i

• n

s

24 13 10 7 7 6 5

4 3 2 1

• 10 States have
• ne state

institution remaining

• New York’s 24

“units” had an average size of 42 daily residents.

• 13 states and DC

have closed all state-operated institutions.

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

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

$0 $100 $200 $300 $400 $500 $600 $700 $800

Adjusted Costs Per Day

$236 $245 $267 $317 $397 $433 $488 $522 $562 $551 $612 $701

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

77 82 87 92 97 02 07 12 17 22 27 30

Year

20 40 60 80 100 120 140 160

Thousands of Residents

2002-13 Projection 1992-2013 Projection

150,207 24,727 (2013) 0 (2029) 0 (2024)

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

 http://www.stateofthestates.org/index.php/i ntellectualdevelopmental- disabilities/interactive-charts

www.StateoftheStates.org

• 1. Total Fiscal Effort for I/DD Services
• 2. Community Fiscal Effort for I/DD Services
• 3. Institutional (16+) Fiscal Effort for I/DD Services
• 4. Community Spending as a Percent of Total I/DD Services
• 5. Percent of Total Out-of-Home Placements in Settings for 6 or Fewer Persons
• 6. Percent of Total Statewide I/DD Care-giving Families Supported by State I/DD Agencies
• 7. Aging I/DD Caregivers as Percent of Total Persons with I/DD
• 8. Individual and Family Support Spending per Capita
• 9. Home and Community Based Services (HCBS) Waiver Federal-State Spending per Capita
• 10. Average Annual Cost of Care in State-Operated 16+ Person I/DD Institutions
• 11. Average Daily Cost of Care in State-Operated 16+ Person I/DD Institutions
• 12. Nursing Facility Residents with I/DD, Per 100,000 of the State Population
• 13. Six-or-fewer Person Community Spending as a Percent of Total I/DD Spending
• 14. Unmatched State Funds Potentially Available to Match Additional Federal Medicaid Funding
• 15. Medicaid Percent of Total I/DD Spending
• 16. Public Spending for Family Support and Supported Living as a % of Total I/DD Spending

Out-of-Home Placements

• 50th in the % of people with I/DD in supervised residential settings for 1-6 people
• p. 21

Aging Caregivers

• Approximately 33,000 people with IDD living with caregivers over age 60

(estimated) – p. 65 Individual and Family Support

• use of supported living/personal assistance $9.70 per capita (US average

$24.92) – p. 48

• supported employment per capita $0.68 per capita (vs. $2.76 US average) - p.

54

• 24th in spending per family (in family support programs) - p. 58
• 44th in # of families supported (in family support programs) per capita – p. 58

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

Financial Commitment

• 43rd in total fiscal effort (down from 42nd in 2011) – p.18
• this is a measure of state commitment to funding services with DD
• 47th in community fiscal effort (down from 45th in 2011) –

p.18

• this measures how much the state spends in the community including

residential settings for 15 or fewer people and other support services (family supports, supported employment, personal care)

 45th in spending "per capita" on HCBS Waiver - p.39

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015