Service Delivery

Changes in service recipients and expenditures in Medicaid long-term services and supports programs for persons with intellectual and developmental disabilities, 1998-2008.

Lakin et al. (2010) · Intellectual and developmental disabilities 2010
★ The Verdict

Medicaid moved billions from institutions to home care, so BCBAs must plan for more clients, smaller budgets per person, and uneven mental-health coverage.

✓ Read this if BCBAs who write waiver behavior plans or manage HCBS-funded caseloads.
✗ Skip if Clinicians who only work in private-pay or school-only settings.

01Research in Context

01

What this study did

Lakin et al. (2010) tracked Medicaid spending for people with intellectual and developmental disabilities. They compared 1998 to 2008. They counted who got services and where the money went.

02

What they found

Home and community services grew fast. More than twice as many people used them. Large state centers lost one-fourth of their residents. Total dollars rose, but each person cost less on average.

03

How this fits with other research

Friedman (2023) shows the trend kept going. By 2021, spending per person hit $47,315. The move out of institutions is still climbing.

Dinora et al. (2020) adds a twist. More money does not always mean better life quality. People in small sponsored homes joined more community activities than those in larger places.

Friedman et al. (2025) zooms in on mental-health dollars. States now spend almost one billion on ABA and crisis help, yet coverage is patchy. The cash shift Charlie spotted now reaches behavior-analytic services.

04

Why it matters

Your waiver referrals are rising because funds left big centers. Use the lower per-person rate to plan realistic budgets. Push for sponsored-home placements when you write support plans; they link to fuller community days. Track your state’s mental-health line item—some still short-change ABA even as total HCBS dollars grow.

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Check your state’s FY 2025 waiver mental-health allocation—if ABA is underfunded, add justification language that ties goals to community participation outcomes.

02At a glance

Intervention
not applicable
Design
other
Population
intellectual disability, developmental delay
Finding
not reported

03Original abstract

The decade between 1998 and 2008 brought a significant expansion of Medicaid-financed long-term services and supports (LTSS) for persons with intellectual and developmental disabilities (ID/DD). During this time, the combined total end of fiscal year (FY) service recipients in the Medicaid intermediate care facility (ICF/MR) and home and community based services (HCBS) programs for persons with intellectual and developmental disabilities increased by 69.6%, from 364,601 to 618,283 (see Table 1). This occurred as ICF/MR residents decreased by 25.0% and HCBS recipients more than doubled, from 240,321 to 525,119, a 118.5% increase. Between FY 1998 and FY 2008, the combined federal and state expenditures for the Medicaid ICF/MR and HCBS programs doubled (increased by 102%), from $16.967 billion to $34.273 billion. This combined increase in Medicaid LTSS expenditures included a 22% increase for ICF/MR programs, from $9.833 billion to $11.963 billion, and a 213% increase in expenditures for Medicaid HCBS programs for persons with intellectual and developmental disabilities, from $7.133 to $22.310 billion. States varied considerably in their contributions to these national trends. One third of all states (17) more than doubled their total Medicaid LTSS recipients during the decade. Forty-eight states decreased or maintained the same number of ICF/MR residents during the decade, but reductions in these states ranged from more than 50% in 10 states to less than 10% in 9 states. In contrast, every state increased HCBS recipients between June 1998 and June 2008, with 31 states more than doubling HCBS recipients (including the District of Columbia, which went from no HCBS recipients to 1,203 during the decade). Although 48 states decreased or maintained the same ICF/MR populations, only 16 states decreased ICF/MR expenditures during the decade. During the same period, all states increased HCBS expenditures, with HCBS expenditures more than doubling in all but 5 states and more than tripling in most (27) states. Controlling for changes in the Consumer Price Index (CPI) between 1998 and 2008, the increases in expenditures between 1998 and 2008 were considerably less. Specifically, when adjusted for the CPI increase of 32%, the $9.833 billion spent for ICF/MR services in FY 1998 would have been worth about $12.933 billion in 2008 inflation-adjusted (“real”) dollars. Similarly, in CPI-adjusted 2008 dollars, the total increases in HCBS expenditures went from $9.382 billion in 1998 (in 2008 dollars) to $22.310 billion in 2008, a 138% increase. Overall, in 2008 dollars, the total expenditures for Medicaid LTSS for persons with intellectual and developmental disabilities increased from $22.314 billion to $34.273 billion in 2008 (53.6%).Figure 1 presents on a national level the effects of the dynamics noted above on per-person Medicaid LTSS expenditures in CPI-adjusted 2008 dollars. It shows the real-dollar per-person expenditures for Medicaid ICF/MR and HCBS programs and for the two programs combined. As shown, between FY 1998 and 2008, the real-dollar average per-person expenditures for ICF/MR residents increased from $104,087 to $128,406, an increase of 23.4%. HCBS per-person real-dollar expenditures increased slightly during the decade, from $39,039 to $42,486 (an 8.8% increase). The average per-person real-dollar expenditures for ICF/MR and HCBS recipients combined between FY 1998 and FY 2008 actually decreased from $60,401 in FY 1998 to $55,433 in FY 2008, a decrease of 8.2%. The primary factor in the lower average real-dollar expenditure was the decrease of 22% in the number of persons enrolled in the considerably more costly ICF/MR program ($128,406 per person in FY 2008) and the 213% increase in the number of people enrolled in the much less costly HCBS program ($42,486 per person in FY 2008).(Sources: Research and Training Center on Community Living. (2009). Residential services for persons with developmental disabilities: Status and trends through 2008. Minneapolis, MN: Author; U.S. Bureau of the Census. (2009). Statistical abstract of the United States. Washington, DC: Author.)

Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.1.80