INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Self-Determination: The State of the Art in Supporting People with Development Disabilities in the U.S.

James W. Conroy, Ph.D.
Supported by The Robert Wood Johnson Foundation and Monadnock Developmental Services

The Professionals Who Created This Concept Wrote A Proposal

  • To the largest health care foundation on Earth:
  • The Robert Wood Johnson Foundation
  • (RWJ money came from the invention of the Band-Aid and other health products)
  • They won the grant
  • The first ever given in developmental disabilities field by that Foundation

The U.S. Had A Well Developed Community Service System in 1993, But Advocates Were Not Satisfied!

  • Overly restrictive
  • Overly regulatory
  • Overly costly
  • Failure to be flexible
  • Failure to individualize
  • Failure to support choice
  • Failure to support development

A Brief History

  • 1993 Original Proposal to RWJF
  • 1995 Statewide in New Hampshire
  • 1996 RWJF Decision to go National
  • 1997 Grants to 19 States
  • 1998 10 More Planning Grants
  • 1998 National Evaluation Begins
  • 1998 10 More States Join With State Funds
  • 1999 Michigan shows positive results
State Funding Years People
Arizona 200 2 24
Connecticut 200 2 125
Florida 100 2  
Hawaii 400 3 125
Iowa 200 2 25
Kansas 400 3 185
Maryland 390 3  
Massachusetts 100 2  
Michigan 397 3 325
Minnesota 400 3 150
Ohio 395 3 400
Oregon 200 2.5 60
Pennsylvania 100 1.5 105
Texas 395 3 60
Utah 200 2 700
Vermont 400 3 250
Washington 100 1 40
Wisconsin 399 3 90
Totals 4,976   2,687


  • Just graduated from high school
  • Terrible car accident, fell into a coma
  • Sean's state did not have any nursing homes for head injury
  • Professionals sent Sean to another state's nursing home

Sean Lived in a Nursing Home

  • For 4 years
  • 100 miles from his parents
  • He didn't get much individual attention
  • And he didn't improve
  • His care was costing $140,000 per year
  • No one was happy

Sean's Parents Asked:

  • Isn't there another way?
  • How much is all this costing government?
  • $140,000? Really? You're kidding, right?
  • If we had control of that money, we would do things very differently.

Local Authorities Asked:

  • Really? What would you do differently?
  • That nursing home is the only one around that specializes in head injury.
  • What could you non-professionals do for Sean?

Sean's Parents Said:

  • Buy a house (not expensive in Keene)
  • Adapt the house
  • Rent out the upstairs
  • We would hire a nurse to train others
  • His high school friends and neighbors to work as his attendants
  • And we would have him close to us
  • We would adapt a house for him
  • We would hire his high school friends to work as his attendants
  • We would hire nurses part time to oversee his care
  • And we would have him close to us

Local Government Thought This Just Might Make Sense

  • Courageous local leaders went to state and federal officials
  • Explained the situation
  • Asked permission to experiment with putting family in charge of how the money was spent
  • Courageous state and federal officials agreed to "look the other way" while regulations were being "bent"

Sean Came Home

  • Government dollars were used to buy a house
  • And to make it accessible
  • And to put in special bathroom and a lift
  • Friends were hired as attendants
  • They took Sean into town on outings
  • Family visited frequently, reading to Sean, talking in his presence, and touching him


  • Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down below $70,000
  • (Even in the first year)
  • Even lower now
  • In 1996, Sean began to open his eyes and focus
  • In 1997, he began to speak
  • Most of us think that would not have happened in the nursing home--EVER

A Look at a Possible Future--What If:

  • Institutions were gone, or nearly gone?
  • And all children had the right to go to their neighborhood schools, no matter what their disabilities?
  • And most adults lived with relatives with in-home support of whatever kind needed?
  • And some adults lived in decent community group homes with 24 hour supervision?
  • But these homes were very, very expensive and people did not like them very much?

Excerpts From the Original Proposal, 1993

  • For people with severe long term and chronic conditions, specifically developmental disabilities, our service delivery practices are so outmoded, so disenfranchising, and so costly that radical departures must be demonstrated and evaluated immediately. We believe that on average many of these costs can be controlled and in many instances reduced for those in residential, day/employment services.

The Original Concept

  • Self Determination:
    • If people gain control,
    • Their lives will improve,
    • And costs will decrease.

"If People Gain Control"

  • Meaning that focus people and their freely chosen allies gain power over life choices
  • Meaning that professional domination of all life choices diminishes
  • Meaning more participation in planning process from unpaid people
  • Meaning, most of all, that INDIVIDUAL BUDGETS are developed via "targeting"

Individual Budgeting

  • Right now, our systems only have "group budgets"
  • A facility budget, divided by the number of people
  • But if we look at what's being spent for a person, we can dream about other ways to use the money

"Their Lives Will Improve"

  • But we don't necessarily know how
  • It could be in many areas of quality of life
  • Or it could be in none
  • The proper strategy: we must measure as many things as we know we can do well, within resources
  • And we must collect the perceptions of the participants themselves

"And Costs Will Decrease"

  • Non-professional control of resources will permit more precise purchasing
  • Decreased reliance on "one size fits all" mentality
  • Lessening of "over-service"
  • Increased utilization of natural and community based supports
  • Some degree of escape from the traditional human services "vortex" of over-spending and over-controlling


  • How could government possibly turn over power to families?
  • And to the people with mental disabilities?
  • Officials are naturally frightened of such a concept.

Elements of Self Determination

  • Support and encourage choicemaking
  • Control of resources
    • Signoff on service provider invoices
  • Case managers--->>Personal agents
  • Person centered planning
  • De-professionalization
  • Training, untraining, and retraining

Roots of Self-Determination

  • Deinstitutionalization
  • Person-centered planning--O'Brien et al
  • Supported living, supported employment
  • Independent living movement
  • Civil rights movements
  • Family supports, family-driven
  • Self-advocacy

Self-Determination in New Hampshire, 1994-1996

  • 45 People
  • 3 years
  • All kinds of people with all kinds of support
  • Results began to show up after just 2 years
  • We studied how planning changed, who had power, how people liked the "new way," and how money was spent

Changes in the Planning Process

Change in the Composition of the Planning Teams:
unavailable at the time of HTML conversion--will be added at a later date.

An Example of a Change in the Planning Process:

  • Who makes plans? Who's "in charge"?
  • "I thanked RWJ and self determination for giving back our lives. Because we lost our lives for those years that Josh was in an institution or a group home. We were just dictated to."
  • --Jackie - Josh's mother

The Decision Control Inventory: Shifting Power

  • The DCI Measure
  • How Decisions are Made in 26 Life Areas
    • Examples: Who to live with, What food to buy, What clothes to wear, What to do with personal money, Time and frequency of bathing and/or showering.
    • Scale: from 100% paid staff decisions to 100% person and/or unpaid loved ones.
  • Conservative Estimate of Reliability: .86
Outcomes re: Power:
unavailable at the time of HTML conversion--will be added at a later date.

Power Shift

  • This is my place! I bought it! I needed it to be on one floor, and to have a place for my trains. And it does!
  • Public funds were used to buy a home for David, with Mom's help. That's a radical departure from American practices. An "investment" in David.

Participant Satisfaction and Perceived Quality of Life

  • Individual Interviews
  • Increased overall satisfaction ratings
    • 7 point increase from Time-1 to Time-2
  • Perception of large improvements in qualities of life over the past year
    • Statistically significant in 8 of 9 areas
Quality of Life Changes From "A Year Ago" to "Now":
unavailable at the time of HTML conversion--will be added at a later date.

Mike--A Man Living in Michigan

  • Was living in a group home
  • Did not like it
  • "Behavior problems"
  • What do you like?
  • My own place.
  • Who do you like?
  • My twin sister.

Take the Same Money, And ...

  • Spend it differently
  • Mike's twin, Michelle
  • Wanted to support her brother
  • But she had to work to make money and have a home
  • With Mike's money, Michelle was "hired"
  • Public dollars are now being spent very differently!

Behavioral Development

  • Adaptive Behavior:
    • There were no expectations.
  • Challenging Behavior:
    • There were no expectations.
  • Productive Behavior:
    • There were no expectations.
Behavior Changes From Time-1 to Time-2:
unavailable at the time of HTML conversion--will be added at a later date.

Mary's Greatest Joy: Cars and Taking Drives

  • Mary now OWNS this car
  • Although she can neither drive nor speak
  • And her former Case Manager now works for her half time
  • Mary can now get out and go, go, go, whenever she wants to
  • "Behaviors" have vanished
  • Power has radically shifted away from professionals, and toward Mary and her most trusted ally

Additional Outcomes

  • Individualization - increased
  • Physical Quality - enhanced
  • Service hours per week - up, but NS
  • Number of goals in plan - down
  • Hours of day activities - up
  • Earnings - up, but NS

Costs, Expenditures, Resources

  • Could qualities of life be improved while resource utilization decreased?
  • Could increased individual and non-professional control result in lower resource utilization?
  • The results supported a clear conclusion.
Public Costs:
unavailable at the time of HTML conversion--will be added at a later date.


Changes in Individual Costs MDS Self-Determination Project:
unavailable at the time of HTML conversion--will be added at a later date.


Quality Dimension Outcome
Self Determination Scale Large +
Personal Satisfaction Scale from Interview Large +
Quality of Life Improvement in Past Year Large +
Relationships with Family No Change
Relationships with Friends No Change
Circles fo Friends, Number of Members Large +
Integration, Outings Some +
Planning Team, Proportion Invited Large +
Planning Team, Proportion Unpaid Large +
Adaptive Behavior No Change
Challenging Behavior Large +
Vocational Behavior Large +
Individualized Practices in the Home Large +
Physical Quality of the Home Large +
Minutes of Direct Service Per Day Some +
Hours of Day Program Activities Per Week Large +
Earnings Per Week Some +
Health and Health Care No Change
Costs 12-15% Lower

Michigan Data: The Only Other Pre-Post Information So Far

  • Over 750 Time-1 (baseline) PLQs
  • Now 157 Time-2 PLQs in house
  • More coming
  • Matches in baseline data: 112
Where Did People Have A Lot of Power?:
unavailable at the time of HTML conversion--will be added at a later date.


Where Did People Have Very Little Power?:
unavailable at the time of HTML conversion--will be added at a later date.


The Top Ten Changes in Power:
unavailable at the time of HTML conversion--will be added at a later date.

Choice in Context of Freedom

"I used to live in a group home. Every morning I was given a choice of hot or cold cereal. ..... I don't like cereal. Now I have my own place. The only food I have there is stuff I like."

None More contact with family
None Meet Garth Brooks, go to Disney world, walk
None Enjoy better health
None Friends
None Hair
None To go on a plane to FL to see sister, make more $
None To always be happy and grow into independence
Ham sandwich More friends
To be finished work Motorcycle
To be sleeping Ride a bike, go to Disney with Steve
Bill Clinton To be healthy, to be safe and alive
Get out of house and go to Keene (Accomplished)
Go to Disney World (Accomplished)
To go to California Would like to visit FL + CA
To live near my parents Go horseback riding
Vacation in Florida Good health
Have a brain Want to have a little boy baby
Get away from Keene housing authority To meet celebrities, to live in warm climate
Not to have a roommate To live like royalty, a queen with loyal subjects
A friend Go visit Maine someday, maybe have more money
That my father was still alive I'd like to see Richard C.
To be married To have Keene fully accessible, live in dream house

It's Not Always About Getting More Money

  • Sometimes, it's just a matter of spending it differently
  • Just as with institutions, the same money can be spent differently
  • And lives will improve
  • Even if you're flat broke, changing your thinking might lead to progress

Rapid Spread: Projects Now Under Way in 37 of our 50 States

  • Foundations gave 18 large, and 12 small grants to states
  • 7 more states are using their own money
  • We are now tracking 2,400 people involved in Self-Determination in the U.S.
  • It's really "taking off"

The Most Critical Factor?
Current Theory: Courage

In the Words of Tolstoi:

  • "I sit on a man's back, choking him and making him carry me, and yet assure myself and others that I am very very sorry for him and wish to lighten his load by all possible means -- except by getting off his back."

Power Increased

  • People and their informal (unpaid) allies clearly increased power and control over life choices
  • But formal (paid) allies also reported perception of increased power
  • How could both groups increase power?
  • Was new power created out of thin air?