Annual Per Resident Expenditures: The national average expenditures for state community ID/DD residential settings were $346.99 per resident per day in settings of 6 or fewer residents, and $374.56 in settings with 7-15 residents.

Individual Large State ID/DD Facility Populations and Per Diem Rates: The total number of residents with ID/DD in individual large state facilities on June 30, 2003 ranged from a high of 826 residents in California’s Sonoma Developmental Center to 25 or fewer residents in eight state facilities. Nationally per diem rates ranged from $110.77 to $800.00.

Congregate Care: Nationally of the estimated 260,490 residents of congregate care settings 189,894 (72.9%) lived in settings with 15 or fewer residents and 135,569 (52.%) lived in settings with six or fewer residents.

Host Family/Foster Care: A home owned or rented by an individual or family where they live and provide care for one or more unrelated persons with ID/DD. Of the 45,759 persons with ID/DD reported in host family settings, all but 22 lived in settings with six or fewer residents.

Own Home: A home owned or rented by one or more persons with ID/DD as their personal home where personal assistance, instruction, supervision, and other support is provided to them. It was estimated that nationally a total of 73,623 homes were owned or rented by 90,957 residential service recipients with ID/DD. A reported 31.3% of HCBS recipients lived in a residence owned, rented, or managed by an agency and the agency provides care. The estimated national total of HCBS recipients living in such arrangements was 125,962. The third largest group of HCBS recipients (17.8%) lived in their own homes and had people come in to provide services.

Family Home Setting and Residents: States had an estimated total of 500,004 persons with ID/DD receiving services in their family home. In 24 states the number of people receiving services while living in their family home was equal to or greater than one-half of the combined total number. An estimated 171,037 HCBS recipients (42.5% of the total) lived with other family members.

Non-state ICFS-MR: There were 63,910 residents of non-state ICFs-MR, making up 59.7% of all ICF-MR residents, the same percentage as in June 2002. There are 24,060 people with ID/DD living in large non-state ICFs-MR, representing an average decrease of 521 people a year. On the other hand, non-state community ICFs-MR (15 or fewer residents) made up 87.7% of all ICFs-MR, although only 37.2% of all ICF-MR residents lived in them. Further broken down, on June 30, 2003 of the 39,850 people living in non-state community ICFs-MR, 47.3% (18,865) were living in ICFs-MR of six or fewer residents. In comparison, on June 30, 1982, 28.3% (2,364) of the 8,358 community non-state ICF-MR residents, were living in ICFs-MR of six or fewer residents.

State ICF-MR Utilization: The proportion of ICF-MR residents living in state facilities has been decreasing steadily since 1982. FY 2003 was the eleventh year that fewer ICF-MR residents lived in state settings than in non-state settings (40.3% of all ICF-MR residents on June 30, 2003). The population of large state ICFs-MR was 42,226 (out of a total residential population of all large state institutions of 43,155). In 2003, 39.4% of ICF-MR residents lived in large state ID/DD facilities. There were only 115 state community ICFs-MR still operating in the United States and only 929 (0.9%) of all ICF-MR residents lived in these settings.

Home and Community-Based Waivers: The Medicaid Home and Community Based Services (HCBS) program is dedicated to people who would be at risk of an ICF-MR placement. All states have received authorization to provide HCBS Services as an alternative to ICF-MR services. In 2003 the 40,779 community ICF-MR residents were only 12.4% of all community residents, a decrease from 18.1% in 1997. The expanded use of the HCBS option is reflected in the rapid growth in the non-ICF-MR residential services since 1992. Children and youth are more likely to be served under HCBS than ICF-MR and as a result “day program” costs are more likely to be covered by educational agencies.

ICF-MR and HCBS for Persons with ID/DD as a Proportion of All Federal Medicaid Expenditures: In 2003 the average federal contribution for each Medicaid beneficiary was an estimated $3,700. This is compared to an average federal expenditure of $28,416 for each ICF- MR and HCBS recipient with ID/DD. State and federal ICF-MR and HCBS expenditures for persons with ID/DD equaled 9.9% of all state and federal Medicaid expenditures.

Persons Presently Not Receiving Residential Services on Waiting Lists for Residential Services: Thirty-six states provided statistics on the number of people waiting for residential services on June 30, 2003. Among these states a total of 51,131 persons were reported to be waiting for services. Assuming the same ratio of people waiting for residential services to people receiving residential services in the 15 states not reporting waiting list data as in reporting states, on June 30, 2003, an estimated national total of 75,288 people with ID/DD were waiting for residential services.

Populations of Large State ID/DD Facilities: Of the 42 states operating large facilities on June 30, 2003, thirty-five reported a decrease in their population, 27 (77.1%) reported a decrease of less than 10%, 6 (17.1%) reported a decrease of 10-20%, and two states (5.7%) reported a decrease of more than 20%.

Total State Residential Services Systems: Of the total 145,581 residential settings, an estimated 142,869 (98.1%) were operated or supported by employees of non-state agencies. An estimated 137,407 (94.4%) settings had 6 or fewer residents, 7,091 (4.9%) settings had 7 to 15 residents and 1,083 (0.7%) settings had 16 or more residents. By 2003, three-fifths (63.0%) of all residents lived in ID/DD settings of 6 or fewer persons, with an additional 12.4% living in settings of 7 to 15 persons. Only an estimated 72,474 (16.6%) were in ID/DD settings of 16 or more residents, 59.1% of whom were in state facilities. Generic nursing facility residents with ID/ DD were 8.0% of the estimated total population. Less than one-quarter, or 107,500 people with ID/DD receiving long-term services received them in institutional settings.

Average Daily Population: The average daily population is the sum of the number of people living in a facility on each of the days of the year divided by the number of days of the year. In FY 2003, the average daily population of large state ID/DD residential facilities was 43,289 people, a reduction of 1,309 people from 2002. The total reduction in state institution ADP in the FY 2001-2003 period (4,583 people) was by far the smallest of any 3-year period since FY 1968. More than four-fifths (80.4%) of the states reduced their populations in large state ID/DD facilities by more than 50% during the period.

Patterns in Residential Systems: The number of residential settings with 16 or more residents decreased by 662 (36.5%) between 1977 and 2003, with large non-state facilities declining by an estimated 529 (38.4%). The net increase in all non-state residential settings (132,326) accounted for 98.3% of the overall increase in all residential settings. There was a decrease of 93 large (16 or more residents) state residential settings (28.4%), and an increase of 2,340 state community residential settings (15 or fewer residents) during the same period (1,695.7%). Almost all (96.5%) of the new community settings were for six or fewer residents. Between 1992 and 2003 community residential settings were increased by 96,662 (202.1%), or an estimated average of about 8,787 new settings per year.

Number of Residential Service Recipients: The number of residents of large non-state residential settings (16 or more residents) decreased by 23,079 (43.8%) between 1977 and 2003. There was a dramatic decrease in the number of people receiving residential services directly from state agencies. While the total population of all residential settings for persons with ID/DD increased by 62.4% between 1977 and 2003, the number of residents of large non-state and large state residential facilities declined significantly (43.8% in non-state facilities; 72.3% in state facilities; and 65.0% in all large facilities). The total population of state and non-state community residential settings increased dramatically (707% in non-state settings; 1,009% in state settings; 716% in all settings). Small settings with 6 or fewer residents were most prominent in these increases, increasing more than thirteen-fold (about 255,061 individuals) between 1977 and 2003. During 1997-2003 these trends have continued with an increase of 80,493 (41.3%) people living in residential settings of 6 or fewer residents.

Admissions: During FY 2003, a total of 2,117 persons with ID/DD were reported admitted to large state ID/DD residential facilities.

Discharges. During FY 2003, a total of 2,679 persons with ID/DD were reported discharged from large state ID/DD residential facilities. Discharges equaled 6.2% of the average daily population of large state ID/DD residential facilities during the year.

Deaths. During FY 2003, a total of 873 people with ID/DD died while residing in large state ID/DD residential facilities. Deaths equaled 2.0% of the average daily population of the large state ID/DD residential facilities. Average residential settings size. An estimated average of 2.8 persons with ID/DD lived in each “non-family” setting where residential services are provided. For each setting the average number of persons ranged from five or more in one state to two or fewer in ten states.

Expenditures for ICF-MR Services: Since 1993, national expenditures for ICFs-MR have increased from $9.2 billion in FY 1993 to $11.5 billion dollars in FY 2003. Between June 30, 1982 and June 30, 2003, average per person ICF-MR expenditures have increased by a compounded average of 6.7% per year. Between 1992 and 2003 interest was expressed in efforts to depopulate and close ICFs-MR, in efforts to simply “decertify” community ICFs-MR to finance them under HCBS, and in the explosive growth in HCBS enrollments (545% increase) as ICF-MR populations decreased by 27.5%.

Expenditures for HCBS Recipients: In the sixteen years between June 30, 1987 and June 30, 2003, the number of states providing HCBS increased from 35 to 51. HCBS expenditures were greater than for ICFs-MR for the first time in 2001. In 2003 HCBS expenditures increased from $293,938,668 to $14,122,912,497 (4,704.7%) as the number of HCBS recipients rose from 22,689 to 402,438 recipients (1,673.7%).

Utilization of and Expenditures for Medicaid Institutional and Home and Community Based Services:

• Over five-sixths (86.2%) of the 6,645 ICFs-MR were in the 13 states with 100 or more ICFs-MR each. Of these, over one-half (57.9%) were concentrated in four states with more than 500 ICFs-MR each.
• Alaska reported no ICFs-MR.
• Nineteen states reported no ICFs-MR with six or fewer residents and twelve states reported no community ICFs-MR of any size.
• In three states HCBS recipients made up less than 45% of combined HCBS and ICF-MR recipients and nineteen states HCBS recipients were more than 90% of the total HCBS and ICF-MR populations.
• Fourteen states had at least 50% of their total ICF-MR population in community settings.
• Twenty-seven states reported less than 20% of their residents in ICF-MR certified settings.
• In four states more than 60% of their total residential care population lived in ICF-MR settings.
• Thirty-eight states have closed one or more facilities to a total of 168 closures.
• Nine states with a total of 22 large state ID/DD residential facilities have closed all of them.
• Of the total 929 residents of state community ICFs-MR, 72 (61.6%) live in Mississippi.
• Six states reported increases in the populations of their large state facilities, ranging from 0.5% in Louisiana to 7.4% in Oklahoma.

Large State ID/DD Residential Facilities:

• Of the 42 states still operating large state ID/DD residential facilities, five states reported discharges equal to 20% or more of their average daily residents.
• Four of the 42 states with large state ID/DD facilities reported no deaths during the year.

Per Capita cost Variations: While nationally in FY 2003 the average daily expenditure for ICF-MR services was $40.77 per U.S. resident, the average varied from well over three times the national average in the District of Columbia and New York to less than one-third the national average in thirteen states.

HCBS Recipients and Residents of Community ICFs-MR: In all of the 50 states and the District of Columbia the majority of recipients of the Medicaid-financed long-term care for persons with ID/DD were served in HCBS or ICF-MR funded community programs.

• Forty states were serving three-quarters or more of their Medicaid-financed long-term care recipients with ID/DD in community settings.
• Thirteen states had more than 200 HCBS recipients per 100,000 of the state’s population and two states had fewer than 50 HCBS recipients per 100,000 of the state’s population

Variations in State Financial Benefit for Combined ICF-MR and HCBS Programs: Relatively rich states share total expenditures on an equal basis with the federal government; relatively poor states may have federal involvement in financing Medicaid services up to 83%. Because states vary considerably in their ICF-MR and HCBS utilization rates, proportions of ICF-MR and HCBS recipients, and expenditures per recipient, some variation is expected among states in relative benefit from federal matching funds beyond that built into the actual cost-share rate for Medicaid. Mississippi received the highest federal share at 77%.

State Benefit Ratio: To assess the differences among states in their relative “return” on current contributions to Medicaid, a “state benefit ratio” was computed. The state Medicaid benefit ratio represents a ratio of all federal ICF-MR and HCBS reimbursements paid to each state divided by the proportion of all dollars contributed to the program through personal income tax paid by citizens of the state. In 2003, seven states got back over two dollars in federal reimbursements for every dollar contributed. Two states got back less than $.50 in reimbursements for every dollar contributed.

Community Residential Setting: New York had the greatest number of community residential settings with 1,000 settings, with 40.4% of all such settings. More than one-half (52.8%) of New York‘s state community residential facilities had between 7 and 15 residents.

Where people live: From the total 3,020 HCBS recipients:

• 1745 people lived in large institutions,
• 445 lived in foster homes,
• 2,539 lived their own home,
• 517 lived in their family homes,
• 29,169 people live in family homes or residential setting, 43% of all service recipients,
• Ohio was one of ten states with the greatest number of non-state community ICF-MR residents. Of the 5,267 people lived in non-state ICFs-MR, 332 people lived in facilities for one to six people; 1,828 people lived in facilities for seven to fifteen people and 3,107 people lived in residents for sixteen or more people.
• 4,969 people lived in facilities for sixteen or more people,
• 9,042 people lived with six or fewer people,
• From the 16,634 people who lived in state-operated facilities, 70% lived with fifteen or fewer people and 54.4% lived with six or fewer people,
• 1,854 people lived in state-operated ICF’s-MR,
• Ohio is one seven states that has more than 2,000 people living in large ICFs-MR,
• Ohio operated twenty-three large facilities between 1960 and 2003; closed eleven between 1960 and 2003, with twelve remaining open and all of them are facilities for sixteen or more people,
• Ninety-three new people were admitted the Ohio’s institutions in 2003,
• Forty-nine people died in institutions in 2003,

Expenditures:

• The average daily expenditure for ICF-MR was $86.64 per state resident,
• Ohio’s average per resident daily expenditure was $293.91,
• The average per diem rate of the eleven developmental centers was $291.05,
• Ohio the annual HCBS expenditure was $43,721 per resident,
• Ohio is one of three states where HCBS recipients as a proportion of all recipients exceeded HCBS expenditures as a proportion of all expenditures by a factor of 2 or greater,
• The federal government Medicaid share in Ohio is almost 59% and the state’s benefit ratio was $1.60 in 2003.

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