family support in the united states a movement from isolation to choice and empowerment valerie j....
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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
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
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
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
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
Resurgence of FamilyAdvocacy
Goals of Family Support To keep families together To enhance capacity and independence To improve the family’s quality of life and
inclusion in their community To enhance the availability of paid and
natural supports To facilitate connections among families
Family Support Pioneers Michigan Minnesota New Hampshire Louisiana Alabama Oregon Missouri
West Virginia New Jersey Washington Pennsylvania
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. . . . . .
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
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.
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.
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.
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.
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
Current Challenges Facing Families Direct support staff shortages Waiting lists Stagnant budgets for family support No legislative mandate in some states Generational divide in advocacy
organizations Backlash Aging caregivers
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
Top Ten Technical Assistance Needs (cont’d)
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)
Agenda for the Future Expand the family
support 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
More Issues for the Future Smooth transition from family support to
self-determination Rejuvenate family support councils Ensure collaboration among advocacy
groups