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

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

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

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!

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

Institutional Decline, Community Rise

What It Was Like

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

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

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

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?

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: 2200 People in Oklahoma, 1990-1996 (100 point scale) -0.4

MI: Opportunities for Choicemaking

Loneliness – Negative Reponses National Core Indicators 2008, N=1580

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

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

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!

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

What Were the Largest Benefits the Families Saw?

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

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

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.

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!!!

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