Abstract

Trends in family support spending and new programmatic initiatives across the country during the 1990s are summarized. Nationally, total spending for family support exceeded $1 billion in 2000. Between 1990 and 2000, spending for such services in the United States grew from 1.5% to 4% of total resources expended by state MR/DD agencies. However, we found considerable state variability in level of resources allocated to support families providing care to a member with developmental disabilities. Programmatic initiatives include trends toward family-directed services, targeted programs for special populations, such as ethnic minorities and aging caregivers, and the slow expansion of cash subsidies. Recommendations for the future course of policy in this area are provided.

The greatest responsibility for caring for people with developmental disabilities is borne by families, who constitute the largest group of care providers. Fujiura (1998) found that over 60% of people with developmental disabilities live with their family of origin compared to 15% who receive care in the formal residential service system. Braddock and his colleagues (2002) have consistently found, in spite of the preponderance of care provided by families, that they receive a disproportionately small share of the public spending allocated for developmental disabilities services. In 1990, spending for family support services constituted just 1.5% of the $14.9 billion in public funds spent nationally for developmental disabilities services (Braddock et al., 1994). This research supported the claims of advocates, who had argued for decades that families were not provided with the means to care for their children until they obtained out-of-home residential placement (Bradley, 1992; Knoll et al., 1992; Turnbull & Turnbull, 2000).

Researchers have found lifelong implications for parents of children with developmental disabilities, including greater levels of perceived burden, depressive symptoms, stress, and health problems as compared to parents of nondisabled children (Blacher, Lopez, Shapiro, & Fusco, 1997; Crnic, Friedrich, & Greenberg, 1983). Other researchers have recently found that by mid-life, parents of children with developmental disabilities, although similar to parents of nondisabled children in terms of physical health, educational and marital status, and psychological well-being, had lower rates of employment and lower rates of social participation than did their counterparts (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001). Utilization of formal support services by family caregivers has been found to play a significant role in reducing the burdens and stress associated with caring for a child with developmental disabilities (Floyd & Gallagher, 1997; Haveman, van Berkum, Reijnders, & Heller, 1997), and with helping families address their unmet needs (Heller, Miller, & Hsieh, 1999). Families who continue to provide care to their adult child at home need supports that enhance caregiving capacities (Heller & Factor, 1993).

Prior to the 1970s, families of children with developmental disabilities were limited to placing their child in an institution or keeping their child at home without services or support (Nahom, Richardson, & Romer, 2000). The emergence of effective parental advocacy, changes in parental demands and expectations, a transformation of ideals within the disability field, and simultaneous shifts in program approaches all facilitated the family support movement (Turnbull & Turnbull, 2000). Family empowerment has also emerged as an important priority in many states (Bradley, 1992).

Concurrent with dynamic changes within the developmental disabilities field are demographic shifts exerting an influence on how all families meet their caregiving responsibilities. American families are the most heterogeneous in history (Hooyman & Gonyea, 1995). The aging of our society promises to have profound implications for family caregiving as well. The convergence of increasing life expectancy for people with developmental disabilities, and the lack of available residential services, will likely precipitate a crisis, as aging family caregivers are faced with caring for their children, who are also old (Braddock, 1999). It is further likely that families of people with developmental disabilities will face increasing competition for social services funding from the needs of the aging baby boom cohort. All of these forces suggest the need for greater analysis of the availability and distribution of family support resources.

Family support services are designed to improve a family's ability to cope with and decrease the burden of providing care while the family member with developmental disabilities lives in the family home (Heller, Miller, & Hsieh, 1999). Turnbull and Turnbull (2000) suggested a broad definition of family support, comprised of the entire range of governmental and nongovernmental supports and services that “assist families to obtain the types of lives they want and need” (p. 9). Within this range exists the informal network of unpaid supports that families utilize and the formally structured service system that is funded with public resources. It is this latter component with which we are concerned in the present analysis. In our investigation we did not examine family support efforts conducted on a discretionary basis by local agencies that are not tracked by the states. For our purposes, family support services were defined as those developed with state funds, including home modifications, in-home and out-of-home respite, sibling programs, family counseling, parent support groups, after-school programs, behavioral training, and, essentially, any other funded service assisting families to continue to care for their family member with developmental disabilities. We were interested in answering three research questions: What level of financial commitment did states make for family support services, what were the recent trends in state funding for family support, and what new family support initiatives have states pursued?

Method

The analysis presented in this paper is based on statistics collected for the State of the States in Developmental Disabilities, an ongoing longitudinal investigation of expenditures and services in the United States (Braddock, 2002). The data were collected from a mail and telephone survey of the director or chief financial officer of each principal state developmental disabilities (DD) agency. Although states provide services and supports to families through other agencies as well (e.g., social services, Medicaid, welfare), DD agencies represent the single largest agencies responsible for the provision and funding of family support services in the states.

Data were collected from an extensive array of spending, revenue, and programmatic information related to all aspects of services for people with developmental disabilities and their families, including the entire spectrum of DD agency-sponsored services, including residential, employment, family support, supported living, personal assistance, case management, and other services. The most recent data collection occurred from February through August 2001 for Fiscal Years (FYs) 1999–2000 (Braddock, 2002). In previous iterations of the study, investigators had collected data for FYs 1977–1998.

For the data reported here, the family support component of the survey was used. The survey covered aggregate state spending, funding sources, and recipient numbers for FYs 1999–2000. The financial detail for FYs 1997–1998, which state officials had reported for the previous edition of the study was provided as well. Data were sought for the two means of providing family support: cash subsidy or direct payments and other services. Cash subsidies included all payments or vouchers made directly to families and represented a mechanism by which families controlled allocation of their support resources. The nonsubsidy mechanism included all services provided either directly by the state or in which third party organizations provided services. Nonsubsidy services included all those defined by a state as family support and intended to assist families to continue to care for a family member with developmental disabilities. Services included, among others, respite, home modifications, parent training, family counseling, recreational programs, sibling and caregiver support groups, and behavioral interventions.

In addition to soliciting aggregate financing levels for subsidy and nonsubsidy services, we sought data on the number of families supported and the revenue sources for family support. Revenue sources included local, state, and federal funds. We were specifically interested in obtaining data regarding the extent to which the Home and Community Based Services (HCBS) Waiver was employed to finance family support in the states. States have used the HCBS Waiver to expand their community-based services for people with developmental disabilities since its authorization by Congress in 1981. The HCBS Waiver allows states to obtain federal Medicaid reimbursement for an array of community-based services, including family support, if the state elects to do so. The HCBS Waiver was authorized in 1981 as an optional Medicaid program and has been recognized as an important catalyst for expanding community services in the states (Braddock, 2002; Lakin, Anderson, & Prouty, 1999).

Administration of the survey was accomplished through a number of steps designed to achieve high response rates with high levels of data accuracy. Survey forms were mailed to state DD directors. Upon receipt of the completed surveys, project staff members engaged in extensive written and telephone interactions with state officials to verify the accuracy of the data. They developed graphics depicting each state's financial commitment for family support over time. These graphics were shared with the state DD agency staff members, who had the opportunity to compare them with their internal records and make any needed changes. Project staff also compared the reported data with published state budgets. In the event inconsistencies were noted, project staff worked with state agency personnel to correct the reported data.

Forty-nine states reported family support spending levels, yielding an overall response rate of 98%. Forty-nine states also reported the number of families who received services, for a response rate of 98%. Minnesota officials did not report either funding levels or the number of families in their program. As such, project staff relied upon published budget records and other state documents in order to construct spending and service estimates for Minnesota. The survey also contained questions related to the revenue sources for family support programs in the state. Item response rates of 80% were achieved on these questions, with 40 states reporting revenue sources for family support services.

In order to compare relative state commitments for family support services, we divided state family support spending by Gross State Product (GSP) as reported by the U.S. Bureau of Economic Analysis (2001). Comparisons based on GSP allow for the simultaneous adjustment of state wealth and state population and are, therefore, superior to metrics that adjust only for population or income. State effort was calculated for 1999, the latest year for which GSP data were available. State economies generally did very well during the boom years that characterized the latter 1990s. We were interested in determining whether state financial commitments for family support services benefited from the economic growth that occurred in most states. In order to examine this issue, we contrasted the growth in family support spending with the growth in GSP during the 1996–1999 period. The 1999 point was chosen, again, because it was the latest date for which GSP data were available.

In order to answer our final research question regarding the types of new initiatives states were pursuing, we conducted a second telephone survey. Officials from each state's Council on Developmental Disabilities (hereafter called the Councils) were contacted in January 2001 to complete this survey. The Councils are federally funded to facilitate a coordinated service system that is consumer- and family-centered, along with engaging in advocacy activities that promote capacity building and systems change in the states (Developmental Disabilities Assistance and Bill of Rights Act of 2000, P.L. 106–402). As such, the Councils were expected to have knowledge regarding the development of new family support initiatives. Forty-six states participated in the survey, yielding a response rate of 92%. Data were collected regarding the types of new family support activities that were either underway or were planned.

Results

National Trends

Nationwide, family support expenditures in 2000 totaled $1.05 billion. This represented 4% of total spending for developmental disabilities services in 2000 compared with 1.5% in 1990 (Braddock, 2002). There has been rapid growth in family support spending in recent years. Inflation-adjusted family support spending advanced 85% nationally between 1996–2000. In 2000, a total of 384,575 families received some form of family support services. This number of recipients represented an increase of 37% during the 1996–2000 period. The amount of support a family received annually averaged $2,728 in 2000, an inflation-adjusted increase of 35% over the 1996 average. Recipient enrollment exceeded funding growth, indicating that more of the expansion in the nation's family support programs can be attributed to serving greater numbers of families and less to substantial increases in the amount of support received by individual families.

Cash subsidy spending was provided by 19 states in 2000, totaling $69 million, which represented less than 7% of total funding for family support services nationally. Services in which families did not directly receive cash or vouchers comprised the remaining $980 million in family support spending.

State Trends

National aggregate levels of support obscure considerable state variability. In 2000, funding for family support services was provided by all 50 states. Family support spending ranged from less than $500,000 in Idaho, Hawaii, and Arkansas to $233 million in California. Table 1 delineates each state's family support spending, number of families served, average annual spending per family, and number of families per capita (per person of general population). The rankings of the average spending per family and families per capita are also presented.

As is evident from a close inspection of Table 1, the states varied widely in terms of their commitment to funding family support services. One metric by which state commitments can be measured is the average annual funding level each family receives. In 2000, median spending per family was $2,649. Per-family spending ranged from $234 per year in Alabama to $13,614 per year in North Carolina. Seven states—Minnesota, Rhode Island, Louisiana, Kansas, Oklahoma, Vermont, and North Carolina—spent more than $9,000 per family in 2000, and the same number spent less than $1,000 per family. The states that spent less than $1,000 per family in 2000 included South Dakota, New York, Idaho, Hawaii, Indiana, Georgia, and Alabama.

Table 1

Family Support Spending, FY 2000

Family Support Spending, FY 2000
Family Support Spending, FY 2000

Direct payments or cash subsidies were provided to nearly 26 thousand families nationwide, for a total expenditure of $69 million in 2000. The median subsidy received by a family in 2000 was $2,607. The 19 states that provided some funding for cash subsidy programs in 2000 are identified in Table 2, along with the number of families receiving subsidy payments and data regarding the spending received per family. Illinois had the largest cash subsidy program in the United States in 2000, with over $16 million in annual spending. The program also had the most generous payment level per family, at over $8,000 per family. The Illinois program, however, reached a comparatively small number of families (1,941), given its large general population. Michigan, which was one of the earliest states to adopt a cash subsidy program, continued to have the program that reached the greatest number of families in 2000, serving 5,264 families.

Table 2

Cash Subsidy Payments, FY 2000

Cash Subsidy Payments, FY 2000
Cash Subsidy Payments, FY 2000

To evaluate state performance in the financing of family support services, we felt it was necessary to use a metric that allows for meaningful comparisons, regardless of state population or wealth. A commonly employed measure is the proportion of the state economy allocated for a particular social welfare expenditure (Gray, 1999). The state economy was represented by GSP; dividing a state's family support spending by its GSP produced this metric. Table 3 delineates state spending for family support in dollars per million of GSP, along with each state's ranking. Median family support spending per million of GSP was $69 in 1999. The variability in state spending was considerable, ranging from $8 or less per million of GSP in Maine, Georgia, Virginia, Arkansas, Hawaii, Alabama, and Indiana to rates exceeding $300 per million in Arizona, Kansas, Louisiana, Montana, and Vermont.

Table 3

Family Support (FS) Spending per $1 Million of Gross State Product (GSP)

Family Support (FS) Spending per $1 Million of Gross State Product (GSP)
Family Support (FS) Spending per $1 Million of Gross State Product (GSP)

In order to assess the growth in states' spending for family support, we compared advances in each state's economy, as represented by its GSP with advances in family support spending. Table 4 presents the inflation-adjusted growth in GSP, family support spending, and the states' rankings in family support spending growth. The 1999 period was selected because it was the latest for which GSP data were available. Forty-three states increased their family support spending at rates that exceeded the growth of their economies. Advances in family support spending were considerable in many states, as is evident in Table 4. We hypothesized that states with the smallest family support spending in 1996 would be most likely to have large increases in their family support programs. To examine this, we conducted partial correlation analysis. Controlling for states' aggregate personal income and population, we found no significant relationship between the spending level in 1996 and growth in spending during 1996–2000. This suggests a state's family support funding in 1996 was not related to whether it pursued large spending advances: There was no relationship between state's 1996 commitment to family support spending and the increases in funding that occurred during 1996–2000. A number of states with minimal levels of family support spending in 1996 had slow growth (or cut their programs) between 1996–2000 and, therefore, had persistently low levels of family support spending in 2000.

Table 4

Change in Gross State Product (GSP) and Family Support (FS) Spending, 1996–1999

Change in Gross State Product (GSP) and Family Support (FS) Spending, 1996–1999
Change in Gross State Product (GSP) and Family Support (FS) Spending, 1996–1999

We were also interested in understanding the role played by the Home and Community Based Services (HCBS) Waiver in the financing of family support services. Officials in 39 states reported family support revenue sources. Of these states, combined federal and state HCBS Waiver revenues comprised 48% of total family support revenues in 2000. Thirteen states reported not using the HCBS Waiver to finance their family support programs, whereas 14 states relied on HCBS Waiver revenues to finance at least 80% of their family support services. Table 5 delineates the amount of HCBS Waiver and other revenues used by the states to finance their family support services.

Table 5

Family Support Revenues: Home and Community Based Services (HCBS) Waiver and Others

Family Support Revenues: Home and Community Based Services (HCBS) Waiver and Others
Family Support Revenues: Home and Community Based Services (HCBS) Waiver and Others

In order to assess whether there was a relationship between states' use of the HCBS Waiver and their spending for family support, we conducted partial correlation analysis. Controlling for state population and aggregate personal income, we found a strong relationship between use of the HCBS Waiver and family support fiscal effort, r = .69, p < .01, in the states that reported their family support revenue sources. Family support fiscal effort was defined as state spending for family support per $1,000 of personal income. The fiscal effort measure was used because state GSP data were not available for 2000. Fiscal effort is a measure, like state GSP, that allows states with varying levels of wealth and population size to be fairly compared. These results suggest that states using the HCBS Waiver to obtain federal resources for family support are likely to have greater financial commitments for family support programs than states that do not.

New Initiatives in the States

Most states' initial forays into the provision of family support consisted of respite services and, for some, cash subsidies. Advocates argue that states should make available the services families individually determine they need (Agosta, 2000). By reaching beyond traditional family support boundaries, some states have developed more innovative methods of providing family supports.

To stimulate the development of innovative family support services, the Administration on Developmental Disabilities has provided funding to states since 1998. States have latitude in designing and developing initiatives under this grant program. A list of the projects supported by the Administration in 2000 follows:

  • Develop a policy council: Delaware, Kansas, Maryland, Nebraska, Virginia, Connecticut, and Kansas

  • Training and technical assistance: Illinois, Missouri, Oklahoma, Wyoming, Colorado, Minnesota, Tennessee, Oregon, Massachusetts, and Kentucky

  • Integration/coordination of services: Georgia, Nevada, South Dakota, South Carolina, Mississippi, Florida, Indiana, DC, and Pennsylvania

  • Network/resource materials/outreach: North Dakota and Utah

  • Culturally competent services: Michigan, New Mexico, New York, and Washington

  • Support to aging family members: Idaho, New Hampshire, and Ohio

  • Cash subsidy/vouchers/respite: Kentucky and Montana

  • Self- or family-directed supports: Alabama, Alaska, Rhode Island, Vermont, and West Virginia

  • Policy development: Hawaii, New Jersey, Wisconsin, Arizona, Alaska, and Texas

Most states were receiving funds at the level of $200,000 for their initiatives.

We have divided the initiatives being funded by the Administration into nine distinctive categories: developing policy councils, training/technical assistance, coordination of services, outreach, development of culturally competent services, support to aging caregivers, cash subsidies, family-directed supports, and policy development initiatives.

In addition to the programs the Administration on Developmental Disabilities has funded, in our telephone survey to state DD Councils, we found an array of new initiatives developing in different states. We have characterized these initiatives into 13 distinct categories. Some of them are indicated in the preceding bulleted list because they are funded by the Administration on Developmental Disabilities (ADD). Others, which are being financed with other state funds, are not included in the ADD list.

Development of a family support policy or advisory council

Nineteen states reported they developed a family support policy or advisory council in their state. Usually comprised of at least 51% parents and consumers, these councils are intended to serve as formal mechanisms by which parents and advocates have input into family support policy decision-making.

Self- or family-directed supports

Fourteen states reported programs directed at giving families decision-making authority over the services they receive. The goals of these initiatives included empowering families and devising family-controlled support systems.

Training, technical assistance, and technology utilization

Ten states reported training and technical assistance initiatives. The focus of many of these programs was to educate service providers, families, and support staff about available services. Many states chose to use technology, including interactive Internet websites, as a way to reach people.

Culturally competent services

Eight states reported developing projects to reach diverse minority populations and to ensure services were sensitive to the varying needs of different constituencies.

Networking/outreach

As a means of educating families and increasing communication, 8 states reported attempts to improve their capacity for reaching families in need.

Integration/coordination of services

To address the fragmentation of service delivery systems, 7 states reported projects intended to facilitate greater integration and coordination of services across programs and agencies. Efforts targeted developing comprehensive systems, reducing duplication of services, and addressing the needs of individuals who were not currently receiving services.

Support to aging caregivers

Five states reported implementing initiatives targeted at the particular needs of aging caregivers, including planning for caregiving, residence, and guardianship transitions.

Flexible funding

As discussed previously, 19 states funded cash subsidies in FY 2000. In our telephone survey we found an additional 5 states that were developing new direct payment programs intended to provide families with flexibility and the discretion to determine how their family support funds are spent.

Policy-making activities

Four states reported development of statewide policy initiatives directed at improving their family support services.

Waiting list initiatives

Four states created specific family support initiatives to address the needs of families of individuals who are waiting for residential services.

Family support specialists/coordinators

Two states reported using specialists or coordinators to more effectively provide family support services. These coordinators were either paid staff members or volunteers and sometimes included family members, who assisted other families secure needed services.

Guardianship

One state reported addressing alternatives to guardianship as one family support initiative.

Localized service management

One state reported transferring centralized services to separate, locally managed entities.

To illustrate in some depth the nature of programs that are underway, we have highlighted programs in 3 states that address critical family support issues: the needs of the aging caregiver, providing services that are culturally competent, and using technology as a method of outreach to unserved or underserved citizens.

Examples of New State Initiatives

The needs of aging family caregivers is a crucial issue confronting the states, particularly as the population is aging and the life expectancy of people with developmental disabilities increases (Braddock, 1999). By 2030, the number of people over age 65 is expected to double to more than 70 million people (U.S. Bureau of Census, 2001). To address the needs of aging caregivers, the Massachusetts Department of Mental Retardation is collaborating with the Governor's Elder Affairs office to improve information and increase supports to older caregivers with a family member who has mental retardation. By gathering and analyzing information collected through surveys and focus groups, the collaborators are implementing regional training sessions. The sessions increase awareness of the needs of older caregivers, provide information and resources, share successful strategies on collaboration, and encourage the development of local partnerships. Collaborative activities are underway to strengthen relationships among community agencies. In addition, flexible funding has been established to help older caregivers and their family members with disabilities plan for their current and future needs (Massachusetts Developmental Disability Council, 2001). Other states reporting prioritization of the needs of aging caregivers include Idaho, New Hampshire, Ohio, and Pennsylvania.

In addition to an increasing number of aging caregivers, the nation's ethnic and cultural diversity is also increasing. The U.S. Census Bureau (2001) estimated that Latinos currently represent 12% of the overall population and will increase their number to 24% in 2050, and 33% by 2100. People of Asian origin currently comprise 4% of the population, and they are estimated to grow in number to 9% by 2050, and exceed 13% by 2100. Every culture has its own perception of disability, definitions of family, and decision-making techniques, in addition to often using languages other than English (McCallion, Janicki, & Grant-Griffin, 1997). These factors must be considered when planning and providing services. To address the issues of an increasingly diverse population, Washington State developed a project to improve services for different ethnic groups. Some of their goals are to link families and agencies, improve monitoring, facilitate gatherings for families in their communities, and train staff in cultural competence (Administration on Developmental Disabilities, 2001). The Washington State Developmental Disabilities Council (2000) identified the service needs of seven different ethnic groups within the state and promoted the development of services provided in a culturally respectful manner.

Finally, a number of states have established programs designed to capitalize on the Internet and advanced technology to meet families' needs. Maryland implemented a project to use technology to enhance its family support outreach efforts. The state's Developmental Disabilities Planning Council developed an interactive website with the intent of promoting family empowerment and self-determination. Outreach was targeted at unserved and underserved families, particularly those from minority backgrounds and those with aging caretakers. Technical assistance, training, and public awareness was also provided in order to increase knowledge and understanding of family choices, needs, and supports (Administration on Developmental Disabilities, 2001). This website was intended to be family-friendly, to facilitate resource linkage, to provide an interactive discussion group and other tools to aid families define and obtain the support services they need (Maryland Developmental Disabilities Council, 2001). As a result of this project, planners hoped that families would have increased knowledge and ability to make informed choices in accessing and evaluating the quality of supports they need (Maryland Developmental Disabilities Planning Council, 2001).

Discussion and Recommendations

This study has important limitations that should be considered in interpreting the findings. Survey research is always characterized by problems inherent in relying on reported, as opposed to directly observed, data. For the state innovation part of the research, we relied on the reports of personnel from each state's DD Planning Councils, who may not have a comprehensive understanding of the innovations occurring in their state. For the financial and client data, we relied on the reports of each state MR/DD agency's chief financial officer, which may be problematic. State agency respondents may not accurately report their family support data. States may lack the management information systems to allow them to accurately track their spending. They also may be motivated to overstate spending, in order to avoid bad publicity, pressure from advocates, and litigation. States may be motivated to underreport their spending in order to avoid the appearance of committing an excessive level of resources for people with developmental disabilities and their families. To address these potential problems, we checked reported financial data against published state budget documents where possible.

The second main limitation of this research is the states' variability in defining family support services. All of the states differ in the types of family support services that they fund and administer, but they also vary in whether they characterize particular services as family support. Vermont, for example, indicated that all services provided to individuals residing with family caregivers, including employment and case management, are considered family support. Most other states do not include employment or case management as family support and limit their classification of family support to respite, cash subsidy, and other services specifically designed to prevent out-of-home placement. This variability clearly has important implications for our findings, which must be interpreted as estimates of state differences.

The majority of people with developmental disabilities are cared for in their family homes, yet state developmental disabilities resources are allocated disproportionately for the care of those who live in residential settings, not with their families. There have been calls from advocates around the nation to push states to remedy this fundamental inequity in the distribution of services and support. Even after 2 decades of recognition that family support services are vital to caregivers, the programs continue to comprise a tiny portion of state developmental disabilities resource allocations.

The tremendous growth in family support spending during the past decade and a half, as well as more recent advances, is deceptive. Although it is true that advances in family support expenditures have far outpaced increases in other sectors of the developmental disabilities field, this has not resulted in parity between family support and other developmental disabilities services spending. In 2000, states allocated just 4% of their total developmental disabilities resources to family support, even after such spending grew at the seemingly astounding rate of 85% during 1996–2000. Although states have clearly devoted more resources to family support, the result of decades of neglect has not been eliminated.

A number of research and policy recommendations emerge from this analysis. Given the centrality of the states in funding and directing these initiatives, it is with an eye toward state implementation that these recommendations are made. We address the need for further research first. In this study where states are the unit of analysis, we do not address the actual impact of services on families. Future researchers should address the ways in which different state policies directly affect families.

A number of important research questions should be examined. How are families supported to manage or direct the subsidies they receive, if support is needed? Cash subsidies may pose considerable administrative burden on the families who receive them, and they may lack the resources to independently obtain services. How do families manage these issues, and are supports in place to assist them as necessary? What steps are states taking to have equity in the provision of limited family support resources? Are families with the greatest needs being served? How are family needs assessed? How do state practices that compel family leadership in policy development actually work? Are families providing real leadership, and what is the impact of this leadership? Finally, although this list of questions is by no means exhaustive, what are the implications of state quality assurance initiatives? Are families satisfied with the services they receive? Do the objectives of family support programs actually meet the families' service needs?

Our first policy recommendation is that states should aggressively seek HCBS Waiver funds to support and expand their family support programs. The HCBS Waiver provides an otherwise unequaled opportunity for states to leverage their resources and secure extensive federal matching funds for community-based services. Family support can be expanded well beyond the current level in most states if existing state family support allocations are deployed to aggressively leverage federal funds.

Second, states should pursue the expansion of programs that invest resources in families and facilitate family-directed services and supports. Researchers and advocates alike have argued that families are usually best positioned to determine the services they need. Although most families will benefit from close collaboration with professionals, and a subset of families are abusive or neglectful of their family member with developmental disabilities, policies should be adopted that generally place the families' desires at the core of the services they receive. Families should receive the services and supports needed to avail themselves of the best options for their own particular situation. Policies should be developed that firmly establish families as the final arbiter of the services they are given. Representative family policy councils should have authority to provide direction to states in the development of services, and families should be integral in quality assurance processes. These roles must be expanded beyond commission representation to positions with authority and decision-making power. Special attention should be given to recruiting leaders from the broad range of families, including ages, ethnicity, marital status, and income levels. Meetings and events must be held at times and places that are accessible given families' other obligations, and special provisions for the care of family members with developmental disabilities should be made so caregivers can fully participate in all levels of decision-making and policy implementation.

The provision of culturally appropriate, respectful, and competent supports should be a mandate for all states and service providers, not the isolated innovation they currently represent. The same issue is true for the needs of aging caregivers. The demographic changes that confront the nation are among the most dynamic forces that will shape our society in the decades to come. It is imperative that policy makers and service providers formulate strategies to meet the needs of a changing constituency of families.

NOTE: The authors thank Richard Hemp and Mary C. Rizzolo for their research assistance.

Table 1

Continued

Continued
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Table 3

Continued

Continued
Continued
Table 4

Continued

Continued
Continued
Table 5

Continued

Continued
Continued

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Author notes

Authors: Susan L. Parish, PhD, Waisman Center, University of Wisconsin-Madison, 1500 Highland Ave., Madison, WI, 53705-2280 ( PARISH@Waisman.Wisc.Edu). Amy Pomeranz-Essley, MSW, MPA, Program Coordinator, Big Brothers Big Sisters of Central Indiana, 2960 N. Meridian, Suite 150, Indianapolis, IN 46208. David Braddock, PhD, Associate Vice President, University of Colorado System, and Executive Director, Coleman Institute, 4001 Discovery Drive, Suite 210 (SYS 586), Boulder, CO 80309. Requests for reprints should be sent to the first author