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Gathering and Using Data to Inform Public Policy Charlie Lakin University of Minnesota

Gathering and Using Data to Inform Public Policy Charlie Lakin University of Minnesota. NDA Annual Conference Dublin, October 13, 2010. Adaptive Behavior Changes Among Samples Leaving Public Institutions. Number of Studies. ++. +. -. --. Benefit of Leaving.

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Gathering and Using Data to Inform Public Policy Charlie Lakin University of Minnesota

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  1. Gathering and Using Data to Inform Public PolicyCharlie LakinUniversity of Minnesota NDA Annual Conference Dublin, October 13, 2010

  2. Adaptive Behavior Changes Among Samples Leaving Public Institutions Number of Studies ++ + - -- Benefit of Leaving ++/-- Statistically significant difference +/- Tendency not reaching statistical significance

  3. CDC/National Center on Birth Defects and Developmental Disability (2001): “Institutions and other forms of congregate care are inconsistent with positive public health policy and practice. They diminish people’s opportunities to realize the essential features of human well-being: choice, control, ability to establish and pursue personal goals, family and community interaction, privacy, freedom of association, and the respect of others.” National Center of Birth Defects and Developmental Disabilities (2001, December.) Healthy People 2010, Chapter 6: Vision for a decade. Atlanta: Centers for Disease Control and Prevention.

  4. The Slowest Moving States Have Become the Primary Factor in Public Institution Depopulation Slowest: AR, FL, IL, IA, MS, NE, NJ, NC, OH, TX

  5. Residential Circumstances of People with ID Receiving Services in Ireland and the USA, People in Places Per 100,000 in 2008 Not Family 9,635 37% 221.5/ Ireland (26,023) USA (1,052,309) Note: 1= per 100,000 in general population

  6. People Reported By States to Need Residential Services Now or Within Next 12 Months, 1999-2009 121,374 114,916 88,349 83,828 75,288 69,787 66,246 1999 2001 2003 2005 2007 2008 2009

  7. Residential Circumstances of People Receiving Services While Living with Other than Family, Per 100,000 of General Population, Ireland and USA, 2008 Ireland (9,635) USA (463,714) Note: Other= 75 in Ireland

  8. Residential Circumstances of People Receiving Services While Living With Other than Family, Per 100,000 of General Pop., Ireland and Minnesota, 2008 Ireland (9,635) Minnesota (13,482) Note: Other= 75 in Ireland

  9. What Is National Core Indicators (NCI)? • Carefully selected and tested nationally recognised set of performance and outcome indicators • Reliable data collection methods and tools • Baseline and trend data at state and national level • Benchmarks of performance • Data gathered with common instrumentation • Standard training program for interviewers

  10. We Have Increased People Receiving Services and Supports While Living with Family

  11. We’ve Seen That Adults Report Good Quality of Life Outcomes While Living with Family (6 States) • 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

  12. We’ve Found That Medicaid Expenditures Are Much Lower on Average for Adults in Family-Based Settings Annual Expenditures (Long-Term and Health Services Family Own Family Host Non-Family HCBS Institutional ICF/MR Source: MSIS and NCI data from 4 states

  13. We’ve Moved People Out of Institutions to the Community…But Not All 1998 2008 2008 Total = 436,311 1998 Total = 348,393

  14. People Are Generally Positive About Places of 15 or Fewer Residents; Loneliness is the Most Widespread Problem.

  15. We’ve Learned That Home Size Affects Perceptions of Well-Being Source: National Core Indicators

  16. Rights • Article 19a of the UN Convention on the Rights of Persons with Disabilities (United Nations, 2006) states: • “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. Rights and Dignity of Persons with Disabilities

  17. Choosing Whom to Live With(without help)by Level of Disability and Residence Type Level of ID Source: National Core Indicators

  18. Own Home Residents by Level of Disability Source: National Core Indicators

  19. How Sustainable are Our Systems?Sustainable Systems: • Economically viable long term. • Carry out functions valued by society. • Active and mobilized constituencies. • Avoiding demanding greater shares of public resources by being efficient and effective. • Built-in capacities to gather and use data to establish effects and improve performance. • Flexible and change to new demands. • Accommodate shifting priorities within society. • Effectively develop future generations.

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