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

– 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

0

5 0

1 0 0

1 5 0

2 0 0

2 5 0

3 0 0

3 5 0

4 0 0

In s t it u t io n C o m m u n it y

What It Was Like

Why Do We Think We Know That Community Leads to Greater Independence?

Pennhurst Class Members:Adaptive Behavior Development

59.7

70.8 71.7 72.9 75.2

0

10

20

30

40

50

60

70

80

1978 1983 1984 1985 1986

Why Do We Think We Know That Getting Out of Institutions Enhances Integration?

Multi-State Integration Comparisons Pre and Post Community Placement

6.8

3.2

7.1

2.7

4.4

0.7

8.8

2.4

12.0

0.0 2.0 4.0 6.0 8.0 10.0 12.0 14.0

California Movers

California Stayers

Oklahoma Focus Class 1995

Oklahoma Public Institutions1995

Kansas Movers

Kansas Stayers

Indiana Movers

Indiana DCs

U.S. Non-Disabled 1986

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

Perceived Changes in Qualities of Life:1999 Survey of Hissom Class Member Families

0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0

Relationship w/ family

Relationship w/ friends

Health

Safety

Food

Treatment by staff

Dental care

Happiness

Daily routine

Work or day program

Comfort

Getting out

Making Choices

Overall quality of life

Privacy

Quality Ratings On 5 Point Scales

ThenNow

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?

Progress in Independent Functioning by Size of Home: 2200 People in Oklahoma, 1990-1996 (100 point scale)

6.36.7

5.8

4.5

1.7

-0.4-1

0

1

2

3

4

5

6

7

8

1 2 3 4-5 6 7-10

Number of People in the Home

Po

ints

of

Gai

n in

Ind

epen

den

ce

-0.4

MI: Opportunities for Choicemaking

Opportunities for Choicemaking (Self-Determination)MI 2001 Self-Determination Studies, 329 Participants

84.778.1 79.6

60.7 59.5

48.0

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

90.0

1 2 3 4 5 6Size of Home

Loneliness – Negative ReponsesNational Core Indicators 2008, N=1580

% LonelySometimes or Often

40

45

50

55

60

1 2 3 to 6 7+

Residence Size

% o

f s

am

ple

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 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!

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

0.0 20.0 40.0 60.0 80.0 100.0

Wisconsin*

Texas*

Ohio*

North Carolina*

New Jersey*

New Hampshire*

Michigan*

Maryland*

Hawaii*

California*

After Before

What Were the Largest Benefits the Families Saw?

0.0 0.2 0.4 0.6 0.8

Family

Health

Food

Health Care

Safety

Privacy

Comfort

Supports

Day

Life Quality

Happiness

Friends

Choices

Getting Out

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!!!

The Future is Bright

Freedom is a fundamental

American value