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Published by the Research and Training Center on Community Living, Institute on Community Integration (UCEDD) • College of Education and Human Development, University of Minnesota
Volume 12 • Number 2 • June 2001

Family Support for Families of Persons with Developmental Disabilities in the U.S.: Status and Trends

This Policy Research Brief was authored by Susan L. Parish, Associate Project Director; Amy Pomeranz, Resource and Policy Analyst; Richard Hemp, Associate Project Director; Mary C. Rizzolo, Graduate Research Assistant; and David Braddock, Head, all with the Department of Disability and Human Development, University of Illinois at Chicago. It summarizes the trends in family support services for families of persons with developmental disabilities in the U.S. based on longitudinal study conducted by the authors. For additional information the authors may be contacted at 312/413-1431 or sparish@uic.edu.

Introduction

Family support consists of services provided to families with a member who has a developmental disability. Services can include home modifications, in-home and out-of-home respite, sibling programs, family counseling, parent support groups, after-school programs, education programs, behavioral training, and essentially any service funded to assist families to continue to care for their child or adult child with developmental disabilities in the family home. Cash subsidy is a particular form of family support where families directly receive cash or vouchers that enable them to purchase the services or supports they need.

Family support developed in the states in the late 1970s, and has continued to expand (Braddock, Hemp, Parish & Rizzolo, 2000). Prior to the advent of family support, the only form of long-term service available in most states was residential care, mainly in institutions and in the fledgling community-based residential programs that were developing. Families and other advocates argued that states were providing the vast majority of resources to serve those in residential placement, and were ignoring the needs of families who provided care at home. In 1977, the 247,796 people in institutions and community-based out-of-home residential settings represented only 9% of the total population with developmental disabilities (Braddock, Hemp, Parish & Westrich, 1996). The vast majority of the remainder were cared for at home, often with no support provided to their families.

The reduction in residential populations of the nation's public institutions in recent decades has been accompanied by the development of community services in most states. Between 1977-98, the number of persons with developmental disabilities in the nation's public institutions declined by nearly 100,000 persons and the number of persons in community residential programs increased by nearly 250,000 (Braddock, et al., 2000). Part of many states' community services development efforts involved providing support to families to prevent or delay the residential placement of children and adults. Family support program development was such that by 1998, spending totaled $736 million for 328,000 families nationwide.

In this Policy Research Brief summarizing trends in family support services across the U.S., our analysis will show that while there has been dramatic growth in family support services over time, this growth has been quite variable from state to state. It will also show that in spite of tremendous relative advances, spending for family support still comprises only a small portion of total state allocations for mental retardation and developmental disabilities (MR/DD) services. We will examine the financing of family support subsidies, and provide recommendations for the future course of policy in this area.

Method of Study

The analysis presented in this brief is based on statistics collected for the State of the States in Developmental Disabilities Project, a longitudinal investigation of expenditures and services conducted at the University of Illinois at Chicago. The data are collected from a direct survey of state MR/DD agencies, who report an extensive array of spending, revenue, and programmatic information. This larger study encompasses the entire spectrum of MR/DD agency-sponsored services, including residential, employment, family support, supported living, personal assistance, case management, and other community services. MR/DD agency staff concluded reporting data for fiscal years 1997-98 in the fall of 1999 (Braddock, et al., 2000).

Results

In the family support component of this study, respondents were asked to identify spending for family support in three categories: respite, cash subsidy, and other services. States were also asked the number of families receiving these services, and the funding sources for family support. For the questions related to family support spending and numbers of recipients, item response rates of 100% were achieved. Item response rates of 80% were achieved on the questions related to revenue sources used to fund family support, with 40 states reporting.

In order to obtain information on the extent and scope of innovation in family support practices across the states, a second survey was conducted. Each state's Developmental Disabilities Council was contacted in January, 2001, to complete a survey on family support in its state. Forty-six states responded.

Family Support Services

Nationwide, family support expenditures in 1998 totaled $736 million. This represented an inflation-adjusted increase of 93% over the 1993 spending level of $381 million. By comparison, total spending for all MR/DD services, institutional and community, increased 23% in inflation-adjusted terms during the same period. In spite of the relatively rapid increase in family support spending, these allocations constituted just 2.8% of the states' total MR/DD expenditures in 1998, up from 1.8% in 1993. The 93% real dollar increase in family support spending between 1993-98 was nearly twice the 49% increase in overall spending for other community services (e.g., group homes, supported living, case management, employment services, foster care, etc.) over the same period.

The number of families receiving family support services increased by 61% between 1993 and 1998, from 203,874 families to 327,681 families. Between 1993 and 1998, the growth in family support across the nation was primarily due to the enrollment of more families in such programs, not because of large increases in spending per family. The average expenditure per family in the U.S. in 1993 was $1,869; in 1998 it was $2,245, a per-family increase of less than 7% in inflation-adjusted dollars. Figure 1 depicts the growth in family support spending and families served during the 1986-98 period. Inflation-adjusted family support spending increased by an average of 18% annually from 1986-98.

Figure 1: Family Support Spending and Families Served, 1986-98

Source: The State of the States in Developmental Disabilities Project, Department of Disability and Human Development, UIC, 2000

In 1998, funding for family support services was provided in all 50 states. Table 1 shows the total spending for family support services for each state in 1998. It shows the percent of total state MR/DD expenditures that were allocated for such services, and also presents data on family support spending per capita (of general state population) and average spending per family supported. The rankings on these latter two dimensions are also indicated in the table.

Table 1 shows clearly that the states varied widely in their expenditures for family support services. Family support spending per capita (of general state population) ranged from $0.09 in Indiana to $12.44 in Arizona. The nation's average was $2.74 per capita in 1998. Eleven states spent at least $5 per capita for family support in 1998, while 16 states spent less than $1 per capita. By comparison, state spending for public and private institutions averaged $26 per capita in the 48 states that funded public or private institutions. Even institutional spending supported only 124,946 residents while 327,681 families received family support services nationally.

An average of 3% of total MR/DD spending nationally was dedicated to family support services. Only five states allocated more than 5% of their total MR/DD budgets to family support initiatives – Arizona, Montana, Kansas, Alaska, and Florida– and 18 states allocated 1% or less.

The average annual allocation per family is another metric by which states' commitment to family support can be assessed. In 1998, the average spending per family was $2,245. It ranged from $129 per year in Idaho to $11,855 in Oklahoma. Ten states spent more than $5,000 per family in 1998, while 11 spent less than $1,000 per family.

Spending in 1998 averaged $2,735 per 1,000 citizens across the nation, and ranged from a low of $85 per 1,000 in Idaho to a high of $12,436 per 1,000 in Arizona. While 11 states spent more than $5,000 per 1,000 citizens on family support services, 16 spent less than $1,000, indicative of the variability among the states in the level of their commitment to supporting caregiving families.

Cash Subsidy Programs

States provided cash subsidies to 20,001 families nationwide, for a total expenditure of $48 million in 1998 (this does not include federal cash payments to families through Social Security Act programs for individuals with disabilities). Families received an average annual state subsidy of $2,416. Twenty-one states provided some funding for cash subsidy programs in 1998. These states are identified in Table 2, along with the number of families receiving subsidy payments, and data regarding the per capita (of general state population) subsidy spending. Cash subsidy spending constituted less than 7% of state's total family support expenditures.

The state with the most generous per-family subsidy payments was Illinois, at $9,110 annually, which was twice the amount provided in North Dakota, the state with the second highest per-family subsidy amount in 1998. Only Louisiana, Oklahoma, and North Dakota were in the top half of all subsidy states for both amount spent per family and numbers of families supported as a percent of their total state population. These three states spent comparatively high amounts per family, but also had programs that reached large numbers of families. The more common occurrence was for states with more generous subsidy programs to subsidize relatively smaller numbers of families. In Illinois, Iowa, Nevada, New Jersey, Oregon, Rhode Island, and South Carolina relatively generous subsidy amounts were provided to proportionately limited numbers of families.

Michigan has been the acknowledged leader in the nation's cash subsidy efforts for many years. The Michigan program was initiated with the 1983 passage of the state's Family Support Subsidy Act. This law provided monthly payments to families with children with severe disabilities, whose family incomes did not exceed $60,000 per annum (Act No. 249, Public Acts of 1983). The program was explicitly intended to reduce out-of-home placement of these children, and ongoing evaluations of the program by the state have indicated that it has been tremendously successful (Michigan Department of Mental Health, 1991). Twenty-five percent of all families receiving cash subsidies in the United States in 1998 were from Michigan. In 1998, the state spent an average of $2,600 per family for 4,936 families, and Michigan's per capita spending for cash subsidies led the nation at $1.31 per state resident.

Forty states reported funding sources for family support services (Table 3). Federal Home and Community-Based Services (HCBS) waiver funds comprised 28% of the resources allocated for family support services in 1998 among the 40 states reporting funding sources. Eleven states did not utilize the HCBS waiver to fund their family support programs, while 11 states relied on the HCBS waiver for at least 50% of the funding of their programs.

Partial correlation analysis showed that controlling for state population, there was a strong relationship between states' use of HCBS to finance family support and their per capita spending for family support services (r=.71, p<.001). These results indicate that states that use HCBS to leverage federal resources have been able to develop stronger family support programs.

Most states' initial programs of family support consisted of respite services and, for some, cash subsidies. By reaching beyond the traditional family support boundaries, states have developed innovative methods of providing family supports.