Family Support in the United States A Movement from Isolation to Choice and Empowerment Valerie J. Bradley Human Services Research Institute San 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 Family Advocacy

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 Family Support 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: Each family 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

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).