3.  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.

4. 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)

5.  Overview of IDD Financial and Programmatic Trends through FY 2013  Just published by AAIDD

6. The Impact of the Great Recession

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

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

13.  IL Total Fiscal Effort: $2.70  Ranks 43rd  US $4.40  IL Community Fiscal Effort: $2.01  Ranks 47 th  US $3.81  Fiscal Effort is a measure of how much a state spends on 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

14. Home and Community Based Services (HCBS) Waiver: Authorized in 1981 as a way of 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 …It made up 78% of total I/DD spending in 2013

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

17.  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.

18. 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 RespiteTransportation

19. - 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%) o AT and Environmental Mods (0.5%) o 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%)

21. 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

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

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

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

28. 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)

29. Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015. Smallest Institutional Census, FY 2013 1Idaho36 2Nevada47 3Montana55 4Delaware61 5Wyoming78 6North Dakota92 7Arizona106 8Nebraska126 9Maryland129 10South Dakota140 11Colorado149 12Tennessee182

30. Largest Institutional Census, FY 2013 1Texas3,932 2New Jersey2,341 3Illinois1,790 4California1,348 5North Carolina1,300 6Mississippi1,157 7Pennsylvania1,069 8Ohio1,066 9New York1,015 Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

31. 10 States have one 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

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

36. 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

38. 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

39. Financial Commitment  43rd in total fiscal effort (down from 42 nd 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