National Overview of Consumer DirectionSelfDetermination: Challenges and Hopes

1

• National Overview of Consumer Direction/Self-Deter
  minationChallenges and Hopes

Valerie Bradley 6th Annual Aging and Mental
Retardation ConferenceBoston, MassachusettsSepte
mber 21, 2001
2

• I live from one tentative conclusion to the next,
  thinking each one is final
• The only thing I know for sure is that
• I am confused.
• Hugh Prather
• Notes to Myself

3
Overview of Presentation

• Recent milestones
• The power of ideas
• Consumer directionthe outlines
• Positives and negatives
• Policy implications

4
Preconditions for Consumer Direction

• Federal legislation
• Decentralization of responsibility
• Engagement of families and people with
  disabilities as advocates
• Closure and phase down of institutions
• Expansion of rights movement on community
  imperative
• Emphasis on outcomes
• Exploration of self-determination

5
Recent History

• We need residential facilities in different
  sizes, in different locations, for different
  types of residents, and above all we need courage
  on the part of state governments and our
  established private institutions to experiment
  with and test some new projects. . . that embody
  a radical departure from existing
  practices.Gunnar Dybwad, 1960

6

• Wit is the sudden marriage of ideas which before
  their union were not perceived to have any
  relation.
• Mark Twain
  Notebook

7
The Tale of Three Ideals
Normalization
Inclusion
Self-Deter- mination
1970s
1980s
1990s
8
Ideal 1 -- Illuminates Institutions
Large institutions are exposed as places that
strip individuals of their humanity and
connection with society community system is the
vision
Normalization
9
Ideal 1 2 -- Attack Segregation
Home-like and job-like programs are
criticized because they enforce segregation and
do not lead to community membership
Normalization

Inclusion
10
Elements of a Supports Approach?

• Person-Centered Planning
• Circles of Support
• Flexible Funding
• Family and individualempowerment
• Recognition of choices and preferences

11
Ideals 1 2 3 -- Shift in Power
For people to have lives that they choose and to
be supported in ways that facilitate their
preferences, people must have control over the
distribution of resources.
Normalization

Inclusion

Self-Determination
12
The Fundamental Problem
Wait List
Gary Smith, NASDDDS
13
Basics of Self-Determination

• People decide what they want
• There is support to make decisions
• There are real options to choose from
• The process is simple and person- centered
• With control comes responsibility
• An approach, not a model, not a program

14
Self-Advocates Said...
That Self Determination means that...

• I am a person like all people My life is my
  own.
• I speak for myself Speak Up Stick up for
  myself.
• I make my own choices
• I am the boss of my own life.
• I make my decisions in my own life.
• I do for myself and not depend on others so
  much.
• I am a person like all people My life is my
  own.

15
Antecedents Include...

• Family support programs,
• Personal assistance programs
• Employment voucher innovations
• Cash and counseling programs

16
It is About Changing Systems...

• Shifting authority for decision making to the
  individual.
• Changing the way supports are funded to give
  people direct control over dollars.
• Changing the role of service providers, case
  managers and support staff.
• Putting the person into the center of the
  relationship between the state and provider
  organization.

17
How Does it Work?

• Individual budgeting
• Personally controlled planning process, with
  support from family and friends.
• Help from a broker or personal assistant to
  locate and access supports.
• Using a financial intermediary to processes
  payments to support staff.
• Choice of providers who work for the individual.

18
Factors Facilitating Change
19
Influence of Self Advocacy

• Monitors of quality of life and performance
• Involvement in policy making
• Conduct of training
• Legislative lobbying

20
Use of Fiscal Intermediaries

• Organizations that provide financial management
  assistance to individuals and families (e.g.,
  payment of taxes, payment to providers, etc.)
• Utah
• Massachusetts
• Kansas
• Michigan

21
The HCB Waiver Today

• Waivers in all 50 States
• 236,000 persons enrolled
• 79 waiver program
• Total cost 5.8 billion
• Per persons costs are stable
• Average cost about 27,000 per year
• 13 live in their own homes 30 live with
  families

22
FactorsLimiting Change

• We have met the enemy
• . . . and he is us Walt KellyPogo

23
Points of Tension

• How do we set personal budgets?
• Who does the broker really work for?
• Do brokers end up with more (not less)
  authority?
• What about existing case managers?
• Do we really need a fiscal intermediary?
• For adults with disabilities, is this a person or
  family driven approach?
• Where does this leave traditional providers?

24
Tensions, continued

• Wont this cost more, not less?
• How do we assure safety and well-being?
• Can self-determination exist when another speaks
  or stands in for the person?
• Have we made the process of self-determination
  too detailed with the wrong priorities?
• How do we define the idea of want versus need in
  terms of developing a budget?
• How do we ensure equity?

25
Who Is The Self In Self-Determination?
Self Directed
Family Directed
State Directed
Provider Directed
26
Finding Balance...
High
Low
Low
High
Authority Held By Participants
27
The Fundamental Issues to Overcome Are

• TechnicalCan we figure out ways to make the
  structure work in a technical sense?
• Political
• Do we have the will to make changes to the flow
  of money?
• Can we abandon program (slot) driven approaches?
• Can we move from supply centered to demand
  centered systems?

28
Areas for Further Reform

• Support advocacy (family support councils,
  self-advocacy) and create a training network
• Build on some ripe providers
• Explore new service configurations
• Build capacity of direct support staff
• Encourage competition
• Build community capacity
• Give disenfranchised communities power over
  funding (also need competent brokers)

29
Reforms, continued

• Information should go both ways
• Support people to be present
• Create a forum to discuss issues between families
  and individuals
• Make waiver funds work for self-determination
• Standardize automated accounting and MIS
• Define and establish service coordinator roles
  and responsibilities
• Expand use of fiscal intermediaries with focus on
  consumer control

30
In Sum, Self-Advocates Said. . .

• We need to define self-determination We know
  the principles but people dont get it Its
  problems with the doing that trips people up

31
How to Preserve the Revolution
32
Thoughts on Revolution

• The first duty of a revolutionary is to get away
  with it. Jerry Rubin
• To be a revolutionary you have to be a human
  being. You have to care about people who have no
  power. Jane Fonda
• Every revolution evaporates and leaves behind
  only the slime of a new bureaucracy Franz
  Kafka