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

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).