What is meant by family support? In many places across the country, family support services are limited to the provision of respite care. While families benefit a great deal from access to respite services, family support can encompass much more. Family-centered supports can be designed to aid the families who wish to keep a member with a disability at home, but who need assistance to do so. In this way, family supports can be the most individualized of all services, built on the assumption that families themselves are the experts on what services they will need to support their son or daughter with a disability in their own home.

How are these services paid for? Currently over 25 states across the US offer something that they call family supports. There is wide variation in the types of services and there are several different ways that money for family supports can be spent. In general, states spend family support resources in some combination of three methods: direct payment to the provider of the needed service, reimbursement to the family upon receipt of appropriate documentation, and provision to the family of a direct cash subsidy. The funding for these services usually comes from state general funds and federal funds such as Medicaid, although some programs rely extensively on United Way donations as well. Of these three methods, the most controversial is that of cash subsidy. States such as California, Michigan, Nebraska, and Wisconsin offer a combination of specific services and an outright cash subsidy to be spent as the family sees fit. Clearly this method offers the greatest flexibility for the family, and allows the greatest amount of control to remain with the family.

How much is being spent on family support? Unfortunately, what is available for family supports depends a great deal on where you live. Approximately half of the states in the US have no family support program at this time. Of those states that do operate family support programs, there is great variation in the amount of money being spent and the numbers of people being served. In some states, pilot programs serve as few as eight to twelve families. In other states, thousands of families receive supports.

Similarly there is great variety in the size of state budgets for family supports. Some states have only a few thousands of dollars earmarked for these activities, while others spend millions. The amount of money spent on family support can be placed in perspective by comparing it to the amount spent on institutional placements. To evaluate the extent of your state's commitment to family supports, you need to ask not only how much is spent on family supports, but also what services are provided for those dollars and what percentage of the total state mental retardation budget is dedicated to family supports.

What are the public policy lessons that we have learned? After looking at family support projects across the country, we have reached a few conclusions:

• Family supports are working. Sometimes they prevent institutionalization, sometimes they only postpone the need for an out-of-home placement. But family supports are very effective at reducing the need for out-of-home placements, and they improve the quality of life for the people who use them.

 
• Currently, there is no equal access to family supports. A family's ability to gain access to the needed supports depends a great deal on the developmental disability system in the state where they live.

 
• Even where substantial resources are being spent in family support programs, in most states the family support budget constitutes only one percent or less of the total developmental disabilities budget.

 
• There is a need to create policy and funding mechanisms for family supports to provide support on an equal basis as needed for families across the country.

 

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