Background

All over the country, there is talk of change in developmental disability service systems.  In some states, change is occurring as part of a continuing process that favors community integrated over facility-based options.  Public institutions are steadily closing their doors.  Eight states and the District of Columbia have no public institutions.  Meanwhile, community options grow more popular, including those that promote supports over services.  People with developmental disabilities have community jobs, own their own homes and otherwise lead “regular lives.” 

Beyond these changes, major system changes are being initiated in several states.  These changes primarily are designed to promote self-determination and participant-driven supports for people with developmental disabilities, as well as other system goals, such as cost containment.  The intent is to place self-advocates squarely in control of their own lives, and in ways that make for more efficient spending.  These changes will change service systems substantially, altering administrative structures, as well as the flow of money and power.

Whether the changes in your state are large or small, one thing has become clear – self-advocates must have a voice in influencing change.  The Self-Advocate Leadership Network is ready to meet this challenge. 

The purpose of the Network is to prepare self-advocates to play a leadership role in guiding developmental disabilities systems change in ways that promote self-determination, community integration and participant-driven supports.  In pursuing this mission, the Network values the contributions that both individuals with developmental disabilities, family members, and professionals bring to the change effort.  We expect that the combined effort will result in self-advocates who are more prepared than ever to shape changes that are already underway across the country.

To play a strong leadership role, self-advocates must know something about the forces and policies at work.  They must be expressive about their want for self-determination, community integration and participant-driven supports.  They must understand how they can be most effective in the policy arena.  And they must have opportunity to act, individually and together.

Frequently Asked Questions:

What is self-determination?
What are participant-driven supports?

What is self-determination?

While there is no national consensus on an exact definition of the term, the idea of self-determination generally rests on four core principles:

• The freedom to develop a personal life plan,
• Authority to control a targeted sum of resources,
• Support to achieve personal goals, and
• Responsibility for contributing to one's community and using public dollars wisely.

When implemented, these principles have great potential for changing both the substance of services, and the related flow of money and power in the system. Added to this momentum is the continuing trend to embrace service approaches that favor community integration over any that result in segregation or sheltered life.

If you are interested in learning more, click here to get to the Center for Self-Determination Website.

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What are participant-driven supports?

Reduced to its essence, in participant-driven support systems, the person with developmental disabilities decides how a fixed amount of service funds are spent. This person may welcome or need the advice of others to make such decisions. The approach is consistent with emerging trends in the field because it promotes community life, strengthens self-esteem and facilitates empowerment among service recipients.

Participant-driven supports may also contribute to cost containment. Proponents argue that the approach will improve provider performance because of its emphasis on "customer first" behavior. Customers (i.e., participants) who do not find what they want, at a price they consider fair, will go elsewhere to make their purchases.

This argument, which forms the basis of participant-driven approaches, promises cost containment within a context of "quality" that promotes self-determined lifestyles. For this to work, two shifts in practice are required:

1. Decisions about what is "important" or "needed" should be left to the individual; and
    
2. Only what is received will be paid for. Such an approach will increase efficiency and so reduce overall costs.

The underlying philosophy and evolving practices of the developmental disabilities field argue for participant-driven approaches. But how would the approach be structured and how would it work? Individuals with developmental disabilities and their families will need to be actively engaged to assure that the emerging service systems are:

• At the systems level, designed to maximally reflect the stated needs and preferences of service recipients regarding policy and practice; and
   
• At the individual level, characterized by enough flexibility that service recipients and family members (with support as needed) can direct the provision of services and supports.

At a systems or strategic level, people with disabilities (as well as family members and guardians) must have opportunities to shape policy and practice. To assure such partnership, resources must be set aside to offset the costs of participation and/or for needed training or technical support.

At a personal or individual level, participant-driven approaches require that people (with their families or other significant others), rather than third parties, exercise choice over how dollars are used; that supports be obtained within a fixed dollar budget; and the person carries some amount of risk if the budget is improperly used. While there are countless variations on this theme, the approach has four fundamental characteristics:

1. Individuals have control over pre-authorized budgets that can be used flexibly to accommodate the needs specified by the individual (within budget limits). Individuals may act alone or in association with their family members or other concerned people.
    
2. Personal advocates or brokers are made available to help individuals develop personal support plans and secure supports. This person has responsibility for assuring that the support plans: (a) honor the individual's support preferences, (b) are within budget, (c) are sufficient to meet the person's needs, and where a group is involved (d) are cognizant of the need to assure that sufficient funds are available to meet the needs of other members of the group.
    
3. An intermediary or "business agent" is available to assist individuals to manage their budgets, satisfy any associated payroll obligations, and protect individuals from various liability claims.
    
4. Individuals have a choice of service suppliers. Providers and others act as authorized merchants -- where participants may "shop." Having control of pre-authorized budgets and in consultation with a personal advocate/broker, participants will be free to decide what service provider they want to deliver needed supports. In fact, the participant may decide not to choose traditional services, opting instead for alternative or informal support arrangements.

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Participant

Over the years much attention has been directed toward the proper label to to apply to those who utilize developmental disabilities services.  Are these people "clients," or "customers"?  For a number of reasons, we do not use these words to reflect the role that people play with disabilities will play in future service systems.  Instead, the word "participant" is used because it embraces an active role that pushes beyond a reflection of client-professional relationships or simple economic symbolism (clients or customers).

In a participant-driven system, people with disabilities will help shape the structure of the system.  And at a personal level, individuals will - alone or with others - make decisions about the lives they want to lead.  In essence, they will be active participants in directing systems and their own lives.

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