Title: 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
3Overview of Presentation
- Recent milestones
- The power of ideas
- Consumer directionthe outlines
- Positives and negatives
- Policy implications
4Preconditions 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
5Recent 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
7The Tale of Three Ideals
Normalization
Inclusion
Self-Deter- mination
1970s
1980s
1990s
8Ideal 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
9Ideal 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
10Elements 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
12The Fundamental Problem
Wait List
Gary Smith, NASDDDS
13Basics 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
14Self-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.
15Antecedents Include...
- Family support programs,
- Personal assistance programs
- Employment voucher innovations
- Cash and counseling programs
-
16It 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.
17How 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.
18Factors Facilitating Change
19Influence of Self Advocacy
- Monitors of quality of life and performance
- Involvement in policy making
- Conduct of training
- Legislative lobbying
20Use 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
21The 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
22FactorsLimiting Change
- We have met the enemy
- . . . and he is us Walt KellyPogo
23Points 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?
24Tensions, 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?
25Who Is The Self In Self-Determination?
Self Directed
Family Directed
State Directed
Provider Directed
26Finding Balance...
High
Low
Low
High
Authority Held By Participants
27The 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?
28Areas 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)
29Reforms, 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
30In 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
31How to Preserve the Revolution
32Thoughts 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