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Trends & MilestonesEdited by K. Charlie Lakin and David Braddock

Family Support Services for Persons with Intellectual andDevelopmental Disabilities: Recent National Trends

Mary C. Rizzolo, Richard Hemp, David Braddock, and Abigail Schindler

DOI: 10.1352/1934-9556-47.2.152

Family support data have been collected for thepast 21 years by the State of the States in

Developmental Disabilities project. New data wererecently collected from the states for fiscal years(FYs) 2005 and 2006 (Braddock, Hemp, & Rizzolo,2008). This article summarizes trends in familysupport services and spending nationally and in theindividual states.

Support for children and adults with intellec-tual and developmental disabilities living in thefamily home, hereafter referred to as familysupport, varies greatly across the nation. Stateshave great latitude in determining what servicesand supports will be included in their family

support program as well as in determining whetherchildren, adults, or both, will be eligible to receivethe supports. Services and supports that states offerto families with children or adults with intellectualand developmental disabilities may include respiteservices; financial services, such as cash subsidiesand vouchers; in-home supports, such as personalassistance or homemaker services; assistive tech-nology and environmental modification; adaptivemedical equipment; health and professional servic-es; therapies; family counseling; family training;parent support groups; transportation; recreationactivities; and specialized clothing and dietaryservices.

Family support has been a rapidly growingservice model in recent years. As shown inFigure 1, between FYs 2000 and 2006, the numberof individuals receiving family support servicesincreased by over 108,000 (34%). Total adjustedexpenditures for family support increased from $1.3billion to $2.3 billion during that same period. Inthe 2 years between FYs 2004 and 2006, there wasan increase of 43,000 families supported nation-

wide, from 385,579 to 428,803 families. Inflation-adjusted family support spending increased 7% from

FYs 2004 to 2005, but the growth rate was only 2%from FYs 2005 to 2006.

Table 1 presents family support programexpenditure, revenue, and participant data for thestates in FY 2006. Family support spendingnationwide in FY 2006 constituted only 5% oftotal intellectual and developmental disabilitiesspending ($43.84 billion). Of particular note hasbeen the dramatic increase in the percentage oftotal family support spending reimbursed by theMedicaid Home and Community Based Services(HCBS) waiver, increasing from 62% of total

family support funding in FY 2004 to nearly 70%in FY 2006. Fifteen states financed 90% or more oftheir family support services with Medicaid HCBS;11 states financed their family support activitiessolely through state funding.

In FY 2006, annual nationwide family supportspending per family averaged $5,376, ranging from$232 per year per family in Alabama to over$10,000 in 11 states. Spending per capita (spendingdivided by the states general population) variedwidely, ranging from $0.14 per state resident inAlabama to over $35.00 in Arizona and Minnesota.

Financial subsidies refer to assistance that statesprovide families to offset the cost of supportingtheir child in the home. The subsidy may be in theform of a monthly stipend, reimbursement, orvouchers that enable families to purchase theservices or supports they need. In FY 2006, financialsubsidy programs constituted 5% of total familysupport spending and were almost exclusivelyfinanced with state funds. Families in 24 statesreceived financial subsidy payments in FY 2006, anincrease from the 22 states that reported providing

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financial subsidies in FY 2004. Between FYs 2004and 2006, there was a 19% increase in the numberof families receiving financial subsidies nationally,from 34,212 families to 40,866. The average annualsubsidy payment to a family in the United States inFY 2006 was $3,046. Subsidy payments ranged from$931 per family in Connecticut to $13,815 inIllinois.

The proportion of adults with intellectual anddevelopmental disabilities living in their familieshome is growing. In FY 1998, according to the 35states that reported data, 35% of support recipientswith intellectual and developmental disabilitiesliving in the family home were adults, generallyaged 18 years and older. The proportion of adultsincreased to 41% in FY 2004, based on 34 reportingstates. The increase in adults supported in thefamily home is especially evident in states using theMedicaid HCBS to finance respite care and otherfamily support services (Rizzolo, Hemp, Braddock,& Schindler, 2008). A reported 44% of families

supported in a 6-state, nonrandom sample in FY2006 were families with adult children (Braddock& Hemp, 2008). These 6 states were Arizona,Connecticut, Georgia, New York, South Carolina,and South Dakota, which together accounted forapproximately 20% of all families in the UnitedStates receiving family support services in FY 2006.

In FYs 20052006, the State of the States inDevelopmental Disabilities project content-analyzeddata from 34 states on the types of family support

services they provided in FY 2004. The analysisyielded 10 major service categories, 11 subcatego-ries, and 61 discrete family support services(Braddock & Hemp, 2008; Rizzolo et al., 2008).The resulting taxonomy will contribute to extend-ing and expanding the State of the States projectslongitudinal database on participants and spendingin family support through FY 2009.

With growing waiting lists for out-of-homeplacements in most states, families increasinglyserve the role of de facto service delivery systems(Davenport & Eidelman, 2008; Fujiura & Brad-dock, 1992; Fujiura, Roccoforte, & Braddock,1994). The growing cohort of aging familymembers caring for persons with intellectualand developmental disabilities nationally onlyheightens the importance of enhancing familysupport services. Improving understanding of thenature and quality of family support throughimproved data collection is a necessary part ofthis process.

(Sources:Braddock, D., & Hemp, R. (2008).Afamily support services taxonomy in intellectual and

developmental disabilities. Boulder: University ofColorado, Department of Psychiatry and ColemanInstitute for Cognitive Disabilities; Braddock, D.,Hemp, R., & Rizzolo, M. C. (2008). The state of thestates in developmental disabilities (Seventh edition).Washington, DC: American Association on Intel-lectual and Developmental Disabilities [see www.colemaninstitute.org for state-by-state spending and

Figure 1 Family support spending and number of individuals supported in the family home, FiscalYears 19902006.

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The emergence of the family. In L. Rowitz (Ed.),Mental retardation in the year 2000. New York:Springer-Verlag; Fujiura, G. T., Roccoforte, J. A., &Braddock, D. (1994). Costs of family care for adults

with developmental disabilities. American Journal onMental Retardation, 99, 250261; Rizzolo, M. C.,Hemp, R., Braddock, D., & Schindler, A. (2008).Family support services in the United States: 2008:

Boulder: University of Colorado, Department ofPsychiatry.)

The State of the States in Developmental Disabilitiesproject is financed in part by the Administration onDevelopmental Disabilities, U.S. Department ofHealth and Human Services.

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