National Overview of Consumer Direction/Self ... Direction.pdf · Shifting authorityfor decision making to the individual. Changing the way supports are fundedto give people direct

Human Services Research Institute 1

National Overview of Consumer Direction/Self-

Determination:Challenges and Hopes

Valerie Bradley

6th Annual Aging and Mental Retardation ConferenceBoston, Massachusetts

September 21, 2001


I live from one tentative conclusion to the next, thinking each one is final

The only thing I know for sure is thatI am confused.

Hugh PratherNotes to Myself


Overview of Presentation

Recent milestonesThe power of ideasConsumer direction:the outlinesPositives and negativesPolicy implications


Preconditions for Consumer Direction

Federal legislationDecentralization of responsibilityEngagement of families and people with disabilities as advocatesClosure and phase down of institutionsExpansion of rights movement oncommunity imperativeEmphasis on outcomesExploration of self-determination


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


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

Mark TwainNotebook


The Tale of Three Ideals

Normalization

Inclusion

Self-Deter-mination1970’s

1980s

1990s


Ideal 1 -- Illuminates Institutions

Normalization

Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision


Ideal 1 + 2 -- Attack Segregation

Inclusion

Normalization+

“Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership


Elements of a Supports Approach?

Person-Centered PlanningCircles of SupportFlexible FundingFamily and individualempowermentRecognition of choices and preferences


Ideals 1 + 2 + 3 -- Shift in Power

Inclusion

Normalization+

+Self-Determination

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.

The Fundamental Problem

Wait List

Gary Smith, NASDDDS

IncreasingService Demand

A FlatteningResource Base


Basics of Self-Determination

People decide what they wantThere is support to make decisionsThere are real options to choose fromThe process is simple and person-centeredWith control comes responsibilityAn approach, not a model, not a program


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 choicesI 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.


Antecedents Include...

Family support programs,Personal assistance programsEmployment voucher innovationsCash and counseling programs


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.


How Does it Work?

Individual budgetingPersonally 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.


Factors FacilitatingChange


Influence of Self Advocacy

Monitors of quality of life and performance

Involvement in policy making

Conduct of training

Legislative lobbying


Use of Fiscal Intermediaries

Organizations that provide financial management assistance to individuals and families (e.g., payment of taxes, payment to providers, etc.) UtahMassachusettsKansasMichigan

Human Services Research Institute

The HCB Waiver Today

Waivers in all 50 States236,000 persons enrolled79 waiver programTotal cost: $5.8 billionPer persons costs are stableAverage cost: about $27,000 per year13% live in their own homes; 30% live with families


FactorsLimiting Change

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


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?


Tensions, continued

Won’t 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?


Family Directed

SelfDirected

Who Is “The Self” In Self-Determination?

State Directed

ProviderDirected

Finding Balance...

Authority Held By ParticipantsLow High

High

Low


The Fundamental Issuesto Overcome Are:

TechnicalCan we figure out ways to make the structure work in a technical sense?

PoliticalDo 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?


Areas for Further Reform

Support advocacy (family support councils, self-advocacy) and create a training networkBuild on some “ripe providers”Explore new service configurationsBuild capacity of direct support staffEncourage competitionBuild community capacityGive disenfranchised communities power over funding (also need competent brokers)


Reforms, continued

Information should go both waysSupport people to be presentCreate a forum to discuss issues between families and individualsMake waiver funds work for self-determination Standardize automated accounting and MISDefine and establish service coordinator roles and responsibilitiesExpand use of fiscal intermediaries with focus on consumer control


In Sum, Self-Advocates Said. . .

We need to define self-determination… We know the principles but people don’t get it…

It’s problems with the doing that trips people up


How to Preserve the Revolution


The first duty of a revolutionary is to get away with it.

Jerry RubinTo be a revolutionary you have to be a human being. You have to care about people who have no power.

Jane FondaEvery revolution evaporates and leaves behind only the slime of a new bureaucracy

Franz Kafka

Thoughts on RevolutionThoughts on Revolution

Documents

National Overview of Consumer Direction/Self ... Direction.pdf · Shifting authorityfor decision making to the individual. Changing the way supports are fundedto give people direct