Family Support in the United States

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Family Support inthe United States

• A Movement from Isolation to Choice and
  Empowerment

Valerie J. BradleyHuman Services Research
InstituteSan Antonio Texas November 9, 2000
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History of Family Support Movement

• 1950s and 1960s only alternatives were
  institutions or private placements
• 1970s major breakthroughs result from Right to
  Education, SSI, and Medicaid legislation
• 1980s Early Intervention legislation and
  beginning of state family support efforts
• 1990s Continued growth of the family support
  movement and emergence of self advocacy
• Late 1990s Funding of national family support
  provisions

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Factors that Led to Emergence of Family Support
Movement

• Women in the workforce
• Disappearance of extended family supports
• Medical and technological advances
• Increasing complexity of state systems
• Leadership training
• Loss of focus by traditional advocacy
  organizations

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Challenges Facing Families

• Isolation
• Lack of sufficient income
• Uncoordinated and erratic system
• Stigma
• Family tensions

• No public mandate for family support
• Lack of information
• Lack of focus on the family
• Exclusion from decision-making

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Resurgence of FamilyAdvocacy

• Assisted by grants from the Administration on
  Developmental Disabilities
• Aided by Partners in Policy Making
• Supported and energized by Parent-to-Parent
  organizations
• Facilitated by Developmental Disabilities
  Councils
• Brought young families into the advocacy movement

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Goals of Family Support

• To keep families together
• To enhance capacity and independence
• To improve the familys quality of life and
  inclusion in their community
• To enhance the availability of paid and natural
  supports
• To facilitate connections among families

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Family Support Pioneers

• Michigan
• Minnesota
• New Hampshire
• Louisiana
• Alabama
• Oregon
• Missouri

• West Virginia
• New Jersey
• Washington
• Pennsylvania

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Principles of Family Support

• Family centered
• Family driven
• Family controlled
• Convenient and accessible
• Culturally competent
• Actively reaching out
• Available through developmental phases

• Respectful of family expertise
• Flexible

Family Support Shall Be. . . . . .
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Components of FamilySupport Policy

• Legislative Mandate
• Flexible Funding
• Family support councils
• Broad eligibility
• Utilization of Medicaid
• Focus on family

• Range of supports
• Flexibility through developmental stages
• Choice
• Focus on natural supports

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In a Nutshell. . .

• To do whatever it takes for families of people
  with disabilities so that they can live as much
  like other families as possible.

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The Best Programs Are...

• Family driven Eachfamily leads the
  decision-making process concerning the type and
  amount of support they receive
• Easy to use Families are not overwhelmed by
  paperwork and red tape and
• Flexible Families can choose supports and
  services based on their individual needs and
  preferences.

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The Status of Things...

• Every state now has some form of a family
  support program.
• Over 30 states have family support legislation.
• Over 30 states offer some form of cash
  assistance.
• States vary greatly in program design.
• There is a great reliance on state revenue
  only.
• There is a great need for increased policy
  collaboration.

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Emerging Practices...

• Self-determination and empowerment themes.
• Use of natural supports over traditional
  services.
• Flexibility over standardized approaches (greater
  use of cash assistance approaches).
• Use of Medicaid (e.g., for voucher models).
• Expansion to adult systems.

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Monitoring Performance of Family Support Programs

• Families should participate in defining what is
  quality
• Families should be involved in measuring the
  quality of services
• Results of performance monitoring should be
  shared with families in an accessible fashion
• Families should be involved at a policy making
  level where results of monitoring are interpreted

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Current Challenges Facing Families

• Direct support staff shortages
• Waiting lists
• Stagnant budgets for family support
• No legislative mandate in some states
• Generational divide in advocacyorganizations
• Backlash
• Aging caregivers

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Top Ten Technical Assistance Needs

• 10. Using generic or non-traditional supports
• 9. Family support legislation
• 8. Maintaining Family Support Councils
• 7. Website development
• 6. Reaching out to un-served and underserved
  populations

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Top Ten Technical Assistance Needs (contd)

• 5. Enhancing cultural diversity
• 4. Strategies for collaboration coalition
  building
• 3. Potential financing (IDEA, Tech. Act, SSA)
• 2. Aging caregivers
• 1. Medicaid financing (waivers, state plans)

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Agenda for the Future

• Expand the familysupport circle
• Broaden outreach
• Improve cultural competence
• Develop leadership
• Address staff training and recruitment issues
• Take advantage of the internet
• Better use of generic and natural supports

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More Issues for the Future

• Smooth transition from family support to
  self-determination
• Rejuvenate family support councils
• Ensure collaboration among advocacy groups

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In Closing...

• Only man is not content to leave things as they
  are but must always be changing them, and when he
  has done so, is seldom satisfied with the result.

Elspeth Huxley The Mottled Lizard, ch. 4 (1962).