1. DEVELOPMENTAL DISABILITIES 2010: TRENDS, TECHNOLOGIES & UNCERTAINTIES IN THE STATES David Braddock, Ph.D., Professor and Executive Director, Coleman Institute for Cognitive Disabilities Associate Vice President, University of Colorado System 2010 NASDDDS Annual Conference Arlington, Virginia November 18, 2010 Presentation © 2010 David Braddock

2. FINANCIAL CONDITIONS IN THE STATES TOTAL INFLATION-ADJUSTED PUBLIC I/DD SPENDING DECLINED IN THE US IN 2009. THIS IS THE FIRST SUCH DECLINE SINCE WE BEGAN COLLECTING FEDERAL SPENDING DATA IN 1972, STATE BY STATE DATA FROM 1977, AND PROBABLY SINCE THE GREAT DEPRESSION.

3. TOTAL I/DD SPENDING DECLINED IN 2009 Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary.

4. ANNUAL % CHANGE IN INFLATION-ADJUSTED I/DD SPENDING IN THE U.S.: 1978-09 Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.

5. THE AVERAGE ANNUAL RATE OF TOTAL I/DD SPENDING HAS STEADILY DECLINED BY DECADE Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.

6. NUMBER OF STATES WITH INFLATION- ADJUSTED CUTS IN I/DD SPENDING: 1978-2009 Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary. (e)

7. Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary. INFLATION-ADJUSTED GROWTH IN I/DD SPENDING IN THE STATES, 2008-09

8. INSTITUTION SPENDING GROWTH IS NEGATIVE OVER THE LAST TWO DECADES Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.

9. COMMUNITY SERVICES SPENDING ASCENDED 1970-90, THEN GROWTH SLOWED Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.

10. Discovering and Doing What Works: Evidence Based Policy NASDDDS Conference November 18, 2010

11. The NASDDDS Definition of Evidence-Based Policy Evidence-Based Policy is the responsible application of best available evidence to the design, management and reform of programs, services and supports for persons with intellectual and developmental disabilities in a manner consistent with achieving the outcomes desired by the Nation and the individual states and with the independence, productivity, inclusion and exercise of free will to individuals. Adopted NASDDDS Research Committee, 2009

12. Increasing Focus on Sustainability of Our System What can we (and future generations) afford? What can we justify based on: Relative costs of various options? Resources spent in comparison with others in need? Outcomes achieved for resources spent?

13. What We Can Afford Will Be Affected by the Growth Rate of Persons with Disabilities American Community Survey, 2006, *Assume rates of disability and institutionalization remain the same as 2006

14. And By Increases in Children and Youth with Conditions Associated with ID/DD Services (+22% from 1999-2008) Source: DOEd, IDD

15. Percentage of Participants Age Group N=12,382 (2007-2008) Number with Autism Dx= 1,002 16.5% 8.5% 6.2% The Front Edge of the Increased Number of Children Identified With Autism Is Moving into State “DD” Systems

16. 1999200120032005200720082009 66,246 69,787 75,288 83,828 88,349 114,916 And More and More People Are Waiting for Services… People Reported By States to Need Residential Services Now or Within Next 12 Months, 1999-2009 123,249

17. Because of the Demographic Trends Medicaid Spending is Projected to More than Double Between 2009 and 2017 Source: Center for Medicare and Medicaid Services, Office of the Actuary Billions of Dollars

18. Future Growth in U.S. Labor Force (in hundred millions) Will Be Much Slower Than the Needed Growth For Persons Providing Long-Term Services (in millions) 141 million158 million165 million192 million

19. Medicaid Is the Principal Support for Long-Term Services for Persons with ID/DD With Greatly Expanded Numbers of Medicaid ICF/MR and HCBS Recipients (1992-2009) Source: Residential Information System Program, 2010 (86% of residential support recipients-away from family)

20. There Have Been Rapidly Expanded Medicaid Expenditures for People with ID/DD; More Than All Medicaid Expenditures; More Than All Long-Term Services and Supports Medicaid LTSS expenditures for persons with DD.--Grown a bit faster than overall Medicaid Considerably faster than overall Medicaid LTSS

21. But Increasingly We Will Need to Make the Case for What We Have Promised and Assess When, How, and For Whom We Deliver Increasing self-determination and personal control in decisions affecting people with disabilities and their families Providing opportunities to people with disabilities to live and participate in their own communities Improving quality of life for individuals and families as they define it for themselves Supporting families as the most important and permanent unit of development, protection, and lifelong assistance to persons with disabilities Investing in each individual’s developmental potential and capacity to contribute in age-related roles as productive, respected community members Assuring access to sufficient, high-quality health and social supports to protect each person’s health, safety, rights, and well-being (From Keeping the promise: Self-Advocates Defining the Meaning of Community)

22. We Have a Long Way to Go in Opportunities for Choice in Housing Choice of Current Home No. of Places Visited Before Choice Choice of In-Home Support Staff Full Partial None 2+ 1 None Source: From CMS-funded evaluation of Medicaid HCBS in 6 states using National Core Indicators N= 2,950

23. And We Need to Attend to How States Pay for This: State Budget Shortfalls in the Hundreds of Billions? Estimate by Center on Budget and Policy P, June 29, 2010

24. Source: Center on Budget and Policy Priorities, March 2010 FY 02FY 03FY 04FY 05 Last Recession FY 09FY 10FY 11FY 12 This Recession This Period Is A Lot Different Than What We’ve Seen In Past Recessions State Shortfalls (including offset by the Recovery Act), in billions

25. What Will Happen to Medicaid LTSS for Persons with ID/DD When Federal Cost-Share Returns to Normal? Billions of Dollars

26. Total = 324,274Total =440,457 19962009 1-3 4-6 7-15 16+ We Have Made Steady Progress Toward More Integrated (at least smaller) Settings Increased people: +116,000; increased 1-6 +150,000)

27. People’s Moves to Smaller Places Have Increased their Freedom to Choose Housemates Schedule, Use of Time, and Use of Money Choice in daily schedule, use of free time, use of money, scored as 2 = complete, 1 = partial, 0 = none (Source: NCI)

28. Community Participation Events in the Past Month by Level of Intellectual Disability Total Events Source: National Core Indicators (26 states, N=6,217)

29. Different Levels of Community Participation in Different Community Housing Models Average Number of Times in Past Month Source: National Core Indicators (26 states, N= 6,217)

30. But At Least with Community Participation, Size of Smaller, Agency-Operated Settings Does Not Make a Big Difference 2-3 Res4-5 Res6-8 Res9-15 Res16+ Res Average Number of Times in Past Month Community participation is a count of the number of times people participate in the previous month in 7 areas of community activities (recreation, religious, shopping, going out to eat/drinks, running errands, social outings/entertainment, vacation). Source: NCI (26 states)

31. We’ve Found That People with ID/DD Are Generally Positive About Their Well-Being in Places of 15 or Fewer Residents; Loneliness is the Most Widespread Problem

32. Size Affects Perceptions of Well-Being, But Living in “Own Home” Seems Most Important Source: National Core Indicators

33. The Future Will Likely Demand Efficiency, But So Has Past: By Shifting from ICF/MR to HCBS, Average Real Dollar Per Person Annual Expenditures for Medicaid LTSS Decreased by 30% between 1993 and 2009 19932009

34. The Shift for ICF/MR to HCBS Is Associated with Better Outcomes: Everyday Choice Score for HCBS and ICF/MR Recipients by Level of ID Average Everyday Choice Score Source: National Core Indicators, 6 States Everyday Choice of daily schedule, use of free time, use of own money, score for 2= complete choice, 1=partial choice, 0= no choice

35. Source: MSIS and NCI data from 4 states (1,240 Individuals) Annual Expenditures (Long-Term and Health Services Family-Based Services Are Growing in Large Part Because Expenditures Are Much Lower on Average for Adults in Family-Based Settings

36. In the Past Decade We Have Increased the Number of People Receiving ID/DD Services and Supports While Living with Family Members

37. 49,262 62,462 223,164 402,438 171,037 (42.5%) 562,067 290,701 And Within Medicaid Supported Services Rapidly Growing Numbers and Proportions of HCBS Recipients Are Living with Family Members Away From FamilyWith Family

38. We’ve Seen That Adults Report Good Quality of Life Outcomes While Living with Family Members No difference on: –Feeling afraid in your neighborhood Better results for those NOT living with family on: –Home staff nice & polite Better results for those living with family on: –Loneliness –Feeling afraid at home –Feeling happy –Liking home Source: National Core Indicators

39. It Appears that “DD” Services Are Working OK for Growing Numbers of People Identified With Autism With Size Effects Comparable to Others in Agency-Operated Settings Average Number of Times In Past Month Community participation is a count of the number of times people participated in the previous month in 7 areas of community activity (recreation/sports, religious, shopping, going out to eat/drink, running errands, entertainment/social, vacation)

40. Workforce Challenges DSP Turnover – 40-55% annually High costs of turnover –Hiring & training = $2,000 - $5,000 per DSP –8%-10% vacancies: increased stress, overtime –Effects on people receiving support Training challenges –Limited quality –Rarely connected to professional competencies –Increasing challenges of access

41. So If the Struggles of the Last 2-3 Years Are The New Normal, What Can We Expect and Advocate? How will expectations for families change? Prolonged living in families Increased roles for families in out-of-family living? Increased family-directed supports/opportunities for creativity? How will expectations for cost containment change? Intolerance of costly models (institutions, high staff ratios)? Trading rules for reduced cost? Uniform individual budgeting/allocations based on characteristics What Principles/Possibilities Are We Willing to Entertain? No one gets more than needed until all get minimum needed? That compared with others with disabilities we have a rich system? That continuing in the ways we know may pose danger to future? That others deserve access and support?

42. Evidence As Key Component and Quality of Sustainability Sustainable systems are economically viable for the long term. Sustainable systems achieve outcomes valued in the society. Sustainable systems have informed, active and mobilized constituencies. Sustainable systems avoid demanding ever greater shares of public resources by being efficient and effective. Sustainable systems have built-in capacities to gather, analyze, report and use data to improve performance. Sustainable systems are flexible and change to new knowledge and/or demands. Sustainable systems can accommodate shifting priorities within society. Sustainable systems effectively develop future generations.