1. The Evidence Is In: Where Do We Go From Here?
James W. Conroy, Ph.D.
Center for Outcome Analysis
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. Shifting Power Charity Medical Professional Providers Self-Directed
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!

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

13. MI: Opportunities for Choicemaking

14. Loneliness – Negative Reponses National 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 Jack to have control of the money!
Jack was one of the first self-determination pioneers
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 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. Freedom is a fundamental American value
The Future is Bright
Freedom is a fundamental American value