The Evidence Is In: Where Do We Go From Here?

1. The Evidence Is In:Where Do We Go From Here? James W. Conroy, Ph.D. Center for Outcome Analysis www.eoutcome.org Arc of KY April 2013

2. A Tale of Freedom • The Arc story is a tale about Freedom • It’s a completely American story • It begins with the Right to Life, Liberty and the Pursuit of Happiness • And it will never end • But it will always point to that goal • We’re moving away from being controlled and dominated • We’re moving toward Freedom, year by year

3. Power and Domination History • Compassion is the root motivation • 1700s. Charity & Religious Model (domination) • 1800s. Medical Model (domination) • 1900s. Professional Model (domination) • IHP, IEP, IPP, ILP, ITP, IWRP • 2000s. Community nonprofit Provider Model • (still domination, but shifting – e.g. Neighbors) • Now beginning a new era of freedom • Person centered planning • Individual budgeting • Self-determination • The Affordable Care Act includes these

4. Charity Medical Professional Providers Smaller, privatized Self-Directed Self-determination KY had the first law Alms houses, asylums Institutions Assess & control Much progress Still domination Individual budgets Shifting power Still very hard to do! Shifting Power

5. Segregation • Think about the past half century • Children can go to public schools • Most people are out of institutions • We know community integrated employment is right • But that’s our next battle • And it’s a battle largely with ourselves • Workshops are covered by Olmstead’s anti-segregation mandate • Look at how far we’ve come

6. Institutional Decline, Community Rise

7. What It Was Like

8. Why Do We Think We Know That Community Leads to Greater Independence?Pennhurst Class Members:Adaptive Behavior Development

9. Why Do We Think We Know That Getting Out of Institutions Enhances Integration?Multi-State Integration Comparisons Pre and Post Community Placement

10. Why Do We Think We Know That Families Believe Community Living Is A Quality-Enhancing Approach?

11. Now That Community is “In” –How Big Should Homes Be? • The Arc movement has won the battle • Against residential segregation • Against institutions • But now we wonder – • What should we fight for in the community? • Big or small? • How small?

12. Why Do We Think We Know That Smaller Homes Yield Higher Quality?Progress in Independent Functioning by Size of Home: 2200 People in Oklahoma, 1990-1996 (100 point scale) -0.4

13. MI: Opportunities for Choicemaking

14. Loneliness – Negative ReponsesNational Core Indicators 2008, N=1580

15. Now the Arc Struggle Shifts Toward Real Control & Power • Self-determination • 20 years of research • Individual budget control • Outcomes are clear • Here’s some evidence

16. The Original Concept • Self Determination: If people gain control, Their lives will improve, And costs will decrease (or not increase)

17. Power, Control, and Quality • Jack • Jack was in and out of institutions • Doreen, his sister, was devoted and fierce • An entrepreneur, she wanted to control the money! • Jack was one of the first self-determination guinea pigs • And when he passed on Thursday …. • He was in his own home, safe, and surrounding by friends and family • 20 years of hard work on shifting power • And he ALWAYS cost less to us taxpayers. • Thank you and farewell, Jack!

18. Improvement in Perceived Quality of Life in 14 Out of 14 Areas – in Every State!

19. What Were the Largest Benefits the Families Saw?

20. Six Solid Cost Studies • NH: Down 12% to 15%, depending on estimates • MI: Down 6% to 9%, depending on estimates • NJ: The same as Waiver traditional models (much less than ICFs/MR or Special Needs Group Home) • CA: All the participants’ costs went up over 3 years, but a lot less than comparable non-participants • Allegan, MI: Superior cost-outcome ratios during time of fiscal contraction • CA – 10 year longitudinal study

21. The Evidence and Policy • Segregation: The evidence is in • Institutional models will end • That’s good – and fiscally conservative • Size: The evidence is in • Smaller is clearly better and fiscally conservative • From institutions to group homes • Evidence shows good outcomes - fiscally conservative • Employment – The evidence is in • Segregation and large settings are now being questioned • Good outcomes from Community Integrated small models • Self-determination models work - fiscally conservative • The Arc movement must aim for Freedom • That means control over resources must shift toward people and their families • This is embodied in the Affordable Care Act

22. Affordable Care Act:New Leverage for the Arc • SEC. 2402. REMOVAL OF BARRIERS TO PROVIDING HOME AND COMMUNITY-BASED SERVICES. • HHS shall promulgate regulations (make rules) to … • … provide strategies for beneficiaries receiving such services to maximize their independence, including through the use of client-employed providers; • … to design an individualized, self-directed, community-supported life; • … individual budget determinations • … provide self-directed personal assistance services.

23. And Just Think….. • What the Arc has striven for • For more than 50 years • Is fundamentally American • It’s about Freedom • The power to reach for life, liberty, and happiness • and – • It is fiscally conservative!!!

24. The Future is Bright Freedom is a fundamental American value