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| Figure 1: United States: Distribution of Individuals with MR/DD by Living Arrangement, 2004 | ||||||
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Source: From The State of the States in Developmental Disabilities, by D. Braddock et al., 2005, Boulder, CO: Coleman Institute for Cognitive Disabilities and Department of Psychiatry, University of Colorado. Based on Fujiura (1998). |
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Family support programs have historically been centered around public and private service agencies. However, consumer, family, and advocate demand for more consumer-directed services has resulted in the establishment of cash subsidy programs in 22 states. Research on consumer and family-directed supports indicates that increased control over respite and personal care services can result in numerous benefits including reduced stress (Herman, 1991; Meyers & Marcenko, 1989; Zimmermann, 1984), reduced financial worries (Herman, 1991), increased self-efficacy (Heller, Miller, & Hsieh, 1999; Zimmerman, 1984), increased satisfaction with services (Caldwell & Heller, 2003), decreased need for out-of-home placement (Heller et al., 1999; Meyers & Marcenko, 1989), and increased maternal employment (Caldwell & Heller, 2003).
Certainly studies have demonstrated the cost effectiveness of family support programs to states. Nevertheless, families incur additional costs than those reimbursed by formal programs. Fujiura, Roccoforte, and Braddock (1994) estimated that families spent an additional $6,300 per year (in 1990 dollars) on out-of-pocket expenses for their adult child with a developmental disability. Similar results were reported by Birenbaum et al. (1990), and Lewis and Johnson (2005) discussed the shift in “financial burden from taxpayers to the families themselves” (p. 85). Despite potential individual and family hardships, most individuals with disabilities wish to remain at home – a desire shared by their families (Johnson, Kastner, and the Committee on Children with Disabilities, 2005). The availability of external supports has been shown to increase families’ willingness and ability to keep their children at home (Birenbaum, Guyot, & Cohen, 1990; Cole & Meyer, 1989; Fujiura, et al. 1994).
This brief reports on data on the levels of family support spending and the numbers of families supported in each state and the District of Columbia. The following questions are addressed:
Family support data were collected during the most recent 2003-04 extension of the ongoing State of the States study (Braddock et al., 2005). Family support data were a subset of all data collected for the study. Project staff developed a set of three Exceltm data collection worksheets, particularized to each state, and including the 2001-02 data collected from the state in the previous study (Braddock, Hemp, & Rizzolo, 2004; Rizzolo, Hemp, & Braddock, 2004). The worksheets contained empty cells for the data requested from the state for 2003-04. Project staff obtained the requested data from one or more state budget/program staff identified by the state ID/DD agency director, from state budget documents, and from secondary federal data sources. Upon receipt of the data, project staff returned to the state a draft series of charts and tables depicting spending, revenue and participant trends in the state, including trends in family support. The state data contacts were asked to review the data for accuracy and to make any necessary additions or revisions. (A more detailed discussion of the study’s methodology is provided in Braddock et al., 2005.)
The majority of long-term care for persons with ID/DD is provided in family homes, but only a fraction of public long-term spending has been directed towards family care (Braddock et al., 2005). In 2004, $1.98 billion, or 6% of community developmental disabilities funding (5% of total ID/DD spending) was allocated to family support services across the nation (see Figure 2). Since 1986, family support spending has been outpaced by consolidated spending for supported employment and supported living (see Figure 3).
Family support spending in FY 2004 increased 16% in real economic terms over the FY 2002 spending level. All 50 states reported a family support initiative in either cash subsidy or other family support activity (the District of Columbia did not fund family support services). However, there was tremendous variability across the states in family support spending levels. Twenty-one states increased both inflation-adjusted family support spending and the number of families supported during 2002-04 (Arizona, California, Connecticut, Florida, Georgia, Hawaii, Indiana, Iowa, Louisiana, Maine, Maryland, Mississippi, Nevada, New Jersey, New Mexico, North Dakota, South Carolina, South Dakota, Washington, West Virginia, and Wisconsin). Six states increased family support spending yet decreased the number of families supported (Illinois, Missouri, Montana, Nebraska, Pennsylvania, and Wyoming). Eight states reduced spending levels while increasing the number of families supported (Arkansas, Delaware, Massachusetts, Minnesota, Ohio, Oklahoma, Rhode Island, and Vermont), and 14 states decreased both family support spending and the number of families supported (Alaska, Colorado, Idaho, Kansas, Kentucky, Michigan, New Hampshire, New York, North Carolina, Oregon, Tennessee, Texas, Utah, and Virginia). Alabama decreased spending, while supporting the same number of families (see Table 1).
Figure 4 illustrates the growth in family support spending across the U.S. during 1990-2004. In 2004, 395,978 families received family support services, an increase of only 2,249 families from the number supported in 2002. This was the lowest rate of increase in families supported for any two-year period since we began collecting family support data in 1986 (Braddock, Hemp, Fujiura, Bachelder, & Mitchell, 1990). In 2004, the average spending per family across the states was $5,005, ranging from $235 per year per family in Alabama to over $10,000 in nine states (see Table 1).
In 2004, 22 states financed cash subsidy programs (see Table 2) totaling $95.1 million in cash payments to 33,334 families. The State of the States in Developmental Disabilities Project first collected cash subsidy payments in 1986. Cash subsidy funding that year totaled $9.3 million in seven states (Florida, Louisiana, Michigan, Minnesota, Nevada, North Dakota, and South Carolina). The number of states providing cash subsidies increased steadily to 19 in 1992, declined to 17 in 1993, and ranged from 19 to 22 states during 1994-04. Cash subsidy spending increased 5% in 2002-04; however, there was a 2% spending decline from 2003-04. This was the first adjusted spending reduction in cash subsidy payments since the project began collecting data in 1986.
The average annual subsidy payment to a family in the U.S. in 2004 was $2,853. Payments ranged from $567 in Utah to $11,739 in Illinois. The combined cash subsidy programs in Illinois, Michigan, New Jersey, Texas, and Louisiana accounted for 66% of all subsidy payments in the U.S. during 2004. The number of families receiving cash subsidies in participating states varied greatly. Delaware, New Mexico, North Dakota, and Rhode Island each subsidized fewer than 100 families, while Michigan and New Jersey each provided subsidies to more than 6,000 families (see Table 2).
Eight states, including Washington State which initiated cash subsidies in 2003, increased both cash subsidy spending and families supported during 2002-04 (Connecticut, Delaware, Kansas, Michigan, Nevada, New Jersey, New Mexico, and Washington). Three states increased cash subsidy spending but reduced the number of families supported (Arizona, Florida, and Illinois). Five states reduced cash subsidy spending but increased the number of families supported (Arkansas, Louisiana, Minnesota, Oklahoma, and South Carolina) and five states reduced both cash subsidy spending and the number of families supported (Alaska, North Dakota, Rhode Island, Texas, and Utah). Missouri discontinued its cash subsidy programs in 2003 and Iowa had no growth (0%) in both cash subsidy spending and in the number of families supported.
The federal government requires that all states provide certain “mandatory” services through their Medicaid plans including inpatient hospital; outpatient hospital; Early and Periodic Screening; Diagnosis; and Treatment (EPSDT); and some nursing facility services. There are numerous “optional” services that a state may choose to provide in its state plan, including six that are critically important to individuals with developmental disabilities – two health care services (clinic and rehabilitative services), one institutional long-term care service (ICF/MR), and three community-based long-term care services (HCBS Waiver, personal assistance services, and targeted case management) (Braddock, 2002). These optional Medicaid services constituted 78% of the $38.55 billion in total ID/DD long-term care spending in the United States in 2004 (Braddock et al., 2005).
The Medicaid Home and Community Based Services (HCBS) Waiver (P.L. 97-35), enacted in 1981, has been instrumental in helping states reduce their reliance on institutional settings while developing community service programs. Some of the HCBS Waiver services a state may offer include case management, homemaker assistance, home health aides, personal care, residential and day habilitation, transportation, supported employment, home modification, occupational, speech, physical, and behavioral therapy, and family support and respite care. In 2004, the HCBS Waiver financed 57% of all family support services in the U.S. – more than double the proportion funded by the Waiver in 1998 (see Figure 5). States varied greatly in the extent to which they utilized HCBS Waiver dollars to finance their family support initiatives. Seventeen states opted to finance their family support initiatives solely through state funding. Conversely, 13 states funded 90% or more of their family support system with the Medicaid HCBS Waiver (see Table 3).
States varied in the extent to which they provided family support services to children versus adults. In 2004, with 34 states reporting, 59% of families receiving family support services were providing care for a child with a developmental disability (generally states considered children to be 17 years of age or younger). This is slightly lower than the percentage reported in 1998, the last year in which data were collected. That year, with 35 states reporting, 65% of recipients of family support services were families of children below the age of 18.
An analysis of the 25 states that reported numbers of minor children and adult children receiving family support in both 1998 and 2004 was conducted. For these states, there was an overall increase in the number of families served between 1998 and 2004. However, this increase was not consistent across age of the family member with developmental disabilities. The number of families having adult children with developmental disabilities increased significantly (t24 = 2.45, p = 0.02) while the number of families with minor children with developmental disabilities remained about the same (t24 = 0.20, p = 0.84). The increase in the number of families receiving family support who had adult children with developmental disabilities was larger for states that had family support HCBS Waivers in 2004 (mean increase = 1,638 families with adults) than for states that had no family support HCBS Waiver (mean increase = 419 families with adults).
In 1998, the Administration on Developmental Disabilities (ADD), U.S. Department of Health & Human Services, began providing grants to the states to encourage innovation in family support initiatives. States used this funding to develop family support councils (7 states); conduct training and technical assistance activities (10 states); promote the integration and coordination of services to families (9 states); conduct outreach (2 states); promote the provision of culturally competent services (4 states); support aging caregivers (3 states); increase cash subsidy, voucher, and respite services (2 states); promote consumer and family-directed supports (5 states); and for policy development (6 states) (Parish, Pomeranz-Essley, & Braddock, 2003). Some states conducted more than one activity.
The most recent initiative by the ADD is the funding of multiple Family Support 360 grants. The goal of the Family Support 360 program is to develop family-driven, one-stop support centers targeting unserved or underserved populations. State developmental disabilities service systems often involve multiple state agencies with numerous points of entry. These one-stop family support centers are designed to foster interagency collaboration and efficiency and streamline family access to services. Since 2003, the ADD has provided funding for 21 Family Support 360 implementation grants and 9 Family Support 360 “planning” grants in the states (ADD, 2005a). Current implementation grants may offer family support navigators to help families find their way through the system, support groups, family advisory councils, resource centers, financial future planning, and parent training (ADD, 2005a; ADD, 2005b).
In 2004 the Centers for Medicare and Medicaid Services (CMS) awarded funding to 10 states to develop Family-to-Family Health Care Information and Education Centers. These family-led centers provide information and referral services, parent education, support groups, and information on the HCBS Waiver to families of children with special health care needs (“Family-to-Family Health Care,” 2005).
