Edited by K. Charlie Lakin, David Braddock, and Gary Smith

During the decade between June 1990 and June 2000, there was substantial national change in the use and total expenditures for residential and Medicaid-financed services for persons with intellectual and developmental disabilities (I/DD). The changes evident nationally were, however, by no means uniform across the states. At the end of the decade, as was the case at its beginning, the services received by Americans with I/DD were very much affected by the state in which they lived.

The tables presented later show statistics on selected indicators of change between June 30, 1990, and June 30, 2000, in the areas of residential services, Medicaid long-term care program participation, and expenditures for services.

Residential Service

Table 1 presents three indicators of changes in residential service use during the decade. The indicators include large public residential facilities populations, total residential I/DD residential service recipients, and residents of settings of 6 or fewer.

Table 1

Indicators of Change in Residential Services for Persons With Intellectual and Developmental Disabilities: Decade Ending June 30, 2000

Indicators of Change in Residential Services for Persons With Intellectual and Developmental Disabilities: Decade Ending June 30, 2000
Indicators of Change in Residential Services for Persons With Intellectual and Developmental Disabilities: Decade Ending June 30, 2000

Large State Facility Residents

Nationwide, the three populations of large state facilities with 16 or more residents decreased over the decade from 84,732 residents to 47,329 residents (44.1%). All states had decreasing populations, but decreases ranged from 100% in 9 states (including DC) to less than 15% in 4 states.

All Residential Service Recipients

Between June 1990 and June 2000, there was substantial growth in the total number of people receiving out-of-family home services in public state and nonstate residential service programs for persons with I/DD. Nationally, residential programs grew by one third (33.6%), from 277,455 to 370,725 service recipients. All states increased the size of residential programs during the decade; increases varied from more than 100% in 4 states to less than 10% in 4 other states.

Persons in Settings of 6 or Fewer

Between June 30, 1990, and June 30, 2000, there was rapid growth in the number of persons residing in settings of 6 or fewer residents in the United States, from 98,336 persons to 236,325 persons (140%). Thirty-six states more than doubled the number of people living in settings of 6 or fewer. Every state increased by at least 30%. States with relatively lower rates of growth in residents of smaller settings included some with overall higher percentages of total residents living in such settings (e.g., Michigan, North Dakota).

Medicaid Service Use

Table 2 presents indicators of changing patterns in Medicaid program use by states between June 30, 1990, and June 30, 2000. Indicators include use of Intermediate Care Facilities for the Mentally Retarded (ICFs/MR), Home and Community Based (“Waiver”) Services (HCBS), and nursing facilities for individuals with I/DD.

Table 2

Patterns of Medicaid Long-Term Care Use by Persons With Intellectual and Developmental Disabilities Between FY 1990 and FY 2000

Patterns of Medicaid Long-Term Care Use by Persons With Intellectual and Developmental Disabilities Between FY 1990 and FY 2000
Patterns of Medicaid Long-Term Care Use by Persons With Intellectual and Developmental Disabilities Between FY 1990 and FY 2000

ICFs/MR

Between June 1990 and June 2000, there was a substantial decrease (20.7%) in the total number of persons residing in ICFs/MR in the United States. There were notable differences in patterns of change among states. Ten states actually increased their ICF/MR residents; 15 states decreased ICF/MR residents by more than 50%.

HCBS

In the decade between June 1990 and June 2000, the HCBS option grew from a modest “alternative” to ICF/MR, with 39,838 total HCBS recipients (only 21.3% of the combined total of 186,713 ICF/MR and HCBS recipients) to the primary program for financing long-term care services. In June 2000, the 291,003 total HCBS recipients made up 71.4% of the combined total of 407,144 ICF/MR and HCBS recipients. States' expansions of HCBS populations were universal over the decade, but the rates of growth differed substantially. In nearly half of all states (24), HCBS populations grew by more than 400%; in only 2 states was the growth less than 100%.

Nursing Facilities

During the decade between June 30, 1990, and June 30, 2000, Medicaid nursing facility residents with I/DD reported by states decreased modestly from a reported 41,167 to 32,195 (21.8%). Most states (40) reported decreased numbers of nursing facility residents with I/DD.

Expenditures

Table 3 presents three indicators of changing patterns in expenditures for persons with I/DD between the fiscal years (FYs) June 30, 1990, and June 30, 2000, including daily per person expenditures in large state facilities and annual state expenditures for ICF/MR and HCBS.

Table 3

Changes in Average Daily Expenditures in Large State Facilities and Total ICF/MR and HCBS Expenditures Between FY 1990 and FY 2000

Changes in Average Daily Expenditures in Large State Facilities and Total ICF/MR and HCBS Expenditures Between FY 1990 and FY 2000
Changes in Average Daily Expenditures in Large State Facilities and Total ICF/MR and HCBS Expenditures Between FY 1990 and FY 2000

Large State Facilities

Between FY 1990 and FY 2000, the average daily per person expenditures for large state residential facilities nationally increased by 58.9%, from $196.33 to $311.95. Average daily expenditures increased during the decade in all 42 states still operating state institutions at the end of the decade. In 10 states per person daily costs more than doubled; in 6 states they increased by less than 50%.

ICF/MR Expenditures

Despite a decrease from 146,875 to 116,441 ICF/MR residents between FY 1990 and FY 2000, ICF/MR expenditures during the decade actually increased by 30.0%. Thirty-four states increased ICF/MR expenditures over the period; 17 reduced them.

HCBS Expenditures

Along with the very rapid growth in the number of HCBS recipients between 1990 and 2000 (630%), there was an even more rapid growth in HCBS expenditures (1,065%). Federal and state Medicaid expenditures for HCBS increased from $827.5 million in FY 1990 to $9.6445 billion in FY 2000; HCBS expenditures more than tripled in every state during the decade.

Total Medicaid Long-Term Care Expenditures

Between FY 1990 and FY 2000, total ICF/MR and HCBS expenditures increased from $8.4419 billion to $19.5466 billion (131.5%). Per recipient Medicaid expenditures for the combined ICF/MR and HCBS programs increased much less, from about $45,200 to $48,000 per year, as ICF/MR use decreased and HCBS use increased.

Table 1

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Table 2

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Table 3

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