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The State of the States in Developmental Disabilities-2004
http://www.cusys.edu/ColemanInstitute/stateofthestates/summary_2004.pdf
Introduction
The State of the States report examines the financing and programming trends in the United States through fiscal year 2002 and pays particular attention to trends in services from 2000 through 2002.
The National Good News
During 2000-2002, the number of individuals served in all types of out-of-home residential settings in the U.S. advanced 7%, from 429,093 to 460,455. The number of people living in settings for 6 or fewer people also grew by 15% and settings for 7 to 15 persons increased by 2%. In contrast, residents living in the nation’s public and private institutional facilities for 16 or more persons declined by 6%.
In 2000, 61% of the total number of individuals receiving residential services was served in settings with six or fewer people, 12% in settings for 7 to 15, and 27% resided in settings for 16 or more people. In 2002, the proportion of persons living in settings for 1 to 6 increased to 65%, settings for 7-15 remained at 12%, while institutional placements that housed 16 or more people dropped to 24%. There is great variation in the use of residential settings of different sizes.
Community Services Trends
Community residential services for fifteen or fewer people include public and private Intermediate Care Facilities for the Mentally Retarded (ICF/MR), group homes, foster care, apartments, and supported living. Supported living as defined in the study included housing in which individuals choose where and with whom they live, ownership is by someone other than the support provider, and the individual has a personalized support plan that changes as her or his needs and abilities change. Nationally only thirty-five percent of people with MR/DD living in publicly funded housing live with six or fewer people. In Ohio, fifty-one percent of that same group lives with six or fewer people.
Where People with Developmental Disabilities Live in the US
| 1-6 People | - | 7-15 People | - | 16+ People | - | Total |
| Number | % | Number | % | Number | % | - |
| 298,375 | 35% | 55,187 | 12% | 106,893 | 23% | 460,455 |
Where People with Developmental Disabilities Live in Ohio
| 1-6 People | - | 7-15 People | - | 16+ People | - | Total |
| Number | % | Number | % | Number | % | - |
| 10,079 | 51% | 2,555 | 13% | 7,284 | 37% | 19,918 |
Between 2000 and 2002, utilization rates (per 100,000 of state general population) in community residences for 1 to 15 persons advanced 8% while institutional utilization rates declined 10%. Nationwide, there were 123 community placements (for 15 or fewer persons) per 100,000 in 2002.
Cost by Setting
The rapid growth from 1960 to 2002 in the number of individuals living in community residential settings in the United States for 6 or fewer people is especially noteworthy. The average annual per resident cost in the thirty-five states funding private ICFs/MR for 15 or fewer people was $67,348. The average annual cost of care in state operated institutions for 16 or more people ranged from less than $100,000 in Arkansas, Georgia, Mississippi, Nebraska, South Dakota, and Texas, to more than $200,000 in Connecticut, Idaho, Minnesota, New York, Oregon, and Tennessee. The national average cost was $81,483. Connecticut terminated use of publicly operated ICFs/MR where fewer than 15 people lived in 2001 and Nevada ceased operation of its only community public ICF/MR in 2001. In 2002, Ohio spent $119,437 for each resident living in a public institution with 16 or more people, only $51,055, or less than half, per resident, for supported living or personal assistance services.
Sources of Revenue
In 1977, federal funds constituted 23% of the total allocation for community services. By 2002, that proportion had increased to 50% of total community services spending. Between 1990-2002, federal spending as a proportion of total community services spending rose from 27% to 50%. State government general revenues, including state augmentation of federal Supplemental Security Income (SSI) payments, comprised 46% of total community services revenues in 2002. Federal funds, primarily Medicaid, constituted 50% of community services spending, while local funds made up the 4% balance. As a portion of total community spending, state funds declined from 52% in 2000 to 46% in 2002, due primarily to the rapid expansion of federal Medicaid HCBS Waiver funding accessed by the states. State funds comprised 63% of all community services spending in 1981. However, in 2002, federal HCBS Waiver funds and federal income maintenance payments (SSI/ADC) for Waiver participants represented 71% of federal funding for community services, 36% of all funding allocated for community services that year.
The HCBS Waiver
The HCBS Waiver has emerged as the principal Medicaid program underwriting MR/DD long-term care, surpassing Medicaid ICF/MR spending in the states in 2001. In 2002, the HCBS Waiver supported 367,456 participants across the nation. Waivers have been in effect in Ohio for twelve years. The state spent a total of $261,444,704 on 7,797 participants, or $33,532 per resident. In Ohio waiver spending only constitutes 15% of its total MR/DD budget ranking it forty-one out of the fifty states.
U.S. HCBS Wavier Spending
| Years in effect | People | Spending | Cost per person | % of total MR/DD budget | Waiver spending per capita |
| 21 | 367,456 | $12,940,097,886 | $35,215 | 37% | $45 |
Ohio’s HCBS Waiver Spending
| Years in effect | People | Spending | Cost per person | % of total MR/DD budget | Waiver spending per capita |
| 12 | 7,797 | $261,449,704 | $33,532 | 15% | $23 |
Local Funding
Local government resources allocated for community MR/DD services are derived from county, township, or municipal entities, and grew from $908.1 million in 2000 to $1.085 billion in 2002, an inflation-adjusted advance of 19%. Twenty-eight percent of local government resources were used as part of the required state matching funds for the Medicaid HCBS Waiver or ICF/MR programs. The remaining funds supported county government-operated group homes, day programs, or other community supports. Local resources constituted major revenue components in several states, most notably in Ohio with 45%. Fifty-three percent of all local funding supporting community services in the U.S. in 2002 was attributable to a single state, Ohio.
Variations in State Commitments for MR/DD Services
Public spending for community services in the U.S. first exceeded institutional spending in 1989. In 2002, all states but Mississippi were spending more for community services than for institutional services. Twenty states reached this benchmark of community spending during 1990-96.
The proportion of total MR/DD resources dedicated to community services activities for 15 or fewer people in 2002 were another significant aspect of state MR/DD financing. Nationally, 78% of total MR/DD resources was dedicated to community services and supports in 2002. Nationally, an estimated 68% of total MR/DD resources were dedicated to smaller settings for 6 or fewer persons. Ohio spends 64% of its total MR/DD budget on community settings for 6 or fewer people.
Individual and Family Support
Annual per family spending ranged from $233 in Alabama to $14,367 in Oklahoma. Ohio spent an average of $954 per family on family support with a ranking of 44. Similar to the majority of the states, Ohio didn’t participate in a cash subsidy program. Ohio is one of only three states that support aging family members.
U.S. Spending on Family Support in 2002
| Total family support | - | Spending per family | Cash subsidy | - | Other family support | - |
| Families | Spending | - | Families | Spending | Families | Spending |
| 406,704 | $1,378,689,875 | 3,390 | 30,628 | $85,815,113 | 359,366 | $1,292,874,998 |
Ohio Spending on Family Support in 2002
| Total family support | - | Spending per family | Rank |
| Families | Spending | - | - |
| 12,038 | $11,481,296 | $954 | 44 |
Supported Employment
The term "supported employment" includes small business enterprise, work crews, enclaves within industry, and individualized job placements. Supported employment as defined for the study, consisted of MR/DD state agency-financed programs for long-term employment support, with the goal of developing independent work skills leading to competitive wages for individuals with MR/DD. In 2002 Ohio spent $25,123,855 on 8,556 participants in support employment programs.
U.S. Supported Employment- Participants and Spending in FY 2002
| Participants | Utilization Rate | Spending | Spending per Capita | Supported/competitive % |
| 112,417 | 39 | $662,768,320 | $2.30 | 24% |
Ohio's Supported Employment Programs
| Participants | Utilization Rate | Spending | Spending per Capita | Supported/competitive % |
| 8,556 | 75 | $25,123,855 | $2.20 | 22% |
The Ticket to Work and Work Incentives Improvement Act (Pub. L. 106-170) provided $150 million in grants to the states so that workers with disabilities who return to work could continue to receive coverage through a "Medicaid buy-in" provision. By the end of 2002, over 24,000 individuals with disabilities had enrolled in the TWWIIA Medicaid Buy-In program. Although there has been vigorous lobbying, Ohio has yet to participate in a Medicaid buy-in program.
Supported Living and Personal Assistance
Ohio was one of the first states to initiate supported living in the mid 1980’s. The increased funding to emphasize individual choice, control over housing, and individualized, person-centered planning reflected in part, the growing strength of self-advocacy organizations. Self-advocates articulated where they wished to live and the types of support they preferred. Supported living includes housing in which individuals choose where and with whom they live, in which ownership is by someone other than the support provider and in which the individual has a personalized support plan that changes as her or his needs and abilities change. According to this definition, 47 states reported providing supported living services to 95,223 individuals in 2002 at a cost of $2 billion.
Personal assistance services were defined as support provided to people living in their own homes financed by either state funds or federal/state Medicaid funds and defined by the state as "personal assistance." In 2002, initiatives in personal assistance were identified in 22 states. From 2000 to 2002, inflation-adjusted growth in personal assistance funding advanced 90%. Ohio does not fund personal assistance.
Public and Private Institutions
Reliance on the use of residential settings for 16 or more persons continues to decline steadily. Since 1977, total spending for the nation’s public institutions declined 15% in inflation-adjusted terms. Average adjusted daily costs per person rose dramatically, however, from $128 in 1977 to $369 in 2002. Improved staffing levels and physical plants accounted for most of the cost increase. Total inflation-adjusted spending for state-operated institutions decreased by 0.08% from 2000 to 2002. From 2000 to 2002, the population residing in these facilities dropped by 7%, from 47,372 to 44,252 persons.
U.S. Average Daily Residents of State-Operated 16+ MR/DD Institutions
| 2002 | 2000 | % Change 2000-02 | 2002 Utilization Rate |
| 44,252 | 44,372 | -7% | 15.4 |
Ohio’s Average Daily Residents of State-Operated 16+ MR/DD Institutions
| 2002 | 2000 | % Change 2000-02 | 2002 Utilization Rate | - |
| - | - | - | Rate | Rank |
| 1,936 | 1,990 | -3% | 17.0 | 31 |
State-Operated Institutional Closures
The present study has identified 120 closures, or planned closures by 2005, in 36 states. Ohio has closed three facilities in the twenty years but is one of five states that still have more than ten state institutions.
Nursing Facility Utilization
Between 2000-2002, the number of people with MR/DD reported to be residing in nursing facilities in the U.S. declined by 5%, from 32,790 to 30,308 residents. Population declines were reported by 26 states. During 2002, only seven people with MR/DD received support in nursing homes in Alaska. Kansas supported only 13 persons with MR/DD in nursing facilities. The national average utilization of nursing facilities for people with developmental disabilities was eleven per 100,000 of the state population. Ohio decreased its nursing facility residents by eleven percent between 2000 and 2002.
Nursing Facilities Residents with MR/DD in the U.S.
| 2002 | 2000 | % Change 2000-02 | Utilization Rate 2002 |
| 30,308 | 32,790 | -8% | 11 |
Nursing Facilities Residents with MR/DD in Ohio
| 2002 | 2000 | % Change 2000-02 | Utilization Rate 2002 |
| 2,160 | 2,430 | -11% | 19 |
General Trends in System Financing:
Total public spending for MR/DD services in the U.S. expanded from $29.15 billion (unadjusted) in 2000 to $34.64 billion in 2002, an inflation-adjusted increase of 13%. Inflation-adjusted spending for community services, including individual and family support, advanced 17% from 2000 to 2002. In contrast to the vigorous growth of community spending, inflation-adjusted spending for public and private institutions with sixteen or more people declined 0.2% during 2000-2002. Spending for community services for 15 or fewer persons first surpassed institutional spending in 1989. Growth in MR/DD spending was extremely strong in most states during 2000-2002. In absolute terms (i.e., aggregate growth in constant dollars from federal, state, and local funding), growth in total MR/ DD spending grew more rapidly between 2000- 2002 than in any two-year period in the last 25 years. Inflation adjusted increases of 30% or more were realized in four states (Florida, Georgia, Hawaii, and Minnesota) during the 2000-2002 period.
The size of typical community residences has declined steadily over the years, as states and community agencies have attempted to more closely approximate "family scale" settings for persons with developmental disabilities. By defining "community services" as settings for 6 or fewer people instead of 15 or fewer, a markedly different picture of the nation’s progress toward family scale services is revealed.
When "institutional services" are defined to include residential settings for seven or more people, community services spending (i.e., settings for 6 or fewer people, and related day programs and individual and family support) did not surpass institutional spending until 1994. By 2002, community services thus defined as settings for 6 or fewer individuals constituted 68% of total MR/DD spending. Community spending for 6 or fewer persons increased 19% from 2000 to 2002.
Gross State Product and MR/DD Spending Growth
During the 1999-2001 period, nationwide aggregate MR/DD spending advanced 9%, significantly exceeding the gross state product (GSP) advance of 1%. Adjusted gross state product percentage change rates ranged from a 5% decline in Michigan to an 11% increase in Wyoming, and Missouri. Ohio’s gross state product decreased three percent, but spending on MR/DD services increases two percent.
Inflation adjusted Change in Gross State Product and Total MR/DD Spending in 1999 through 2001 in the U.S.
Inflation-Adjusted Change in Gross State Product and Total MR/DD Spending in 1999 through 2001 in Ohio
Significance of Medicaid
The Medicaid program is the single most important public sector program in the United States for people with mental retardation and developmental disabilities. Federal-state Medicaid spending in 2002 constituted 77% of the $34.6 billion in MR/DD long term care spending. State Medicaid programs differ in terms of mandatory services that states must provide, instead of elected or optional services that each state may provide, as specified in its state plan. For example, inpatient hospital, outpatient hospital, Early and Periodic Screening, Diagnosis, and Treatment (EPSDT), and some nursing facility services are mandatory services that are provided by all states. The Home and Community Based Services (HCBS) Waiver, ICF/MR, personal care services, and case management services are optional services the states may choose to provide. Six optional services are critically important to individuals with developmental disabilities because they are significant programmatic components of service delivery systems in the states. The six most significant optional services are 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).
HCBS Waiver spending first surpassed combined institutional and community based ICF/MR spending in 2001. Continued expansion of family-scale homes and individual and family support initiatives hinges on continued efforts by the states to redirect institutional ICF/MR funding to community alternatives. During the past decade the vast majority of states have demonstrated that individualized supports are effectively financed by the Waiver and by other noninstitutional Medicaid programs including personal assistance, targeted case management, and clinic/rehabilitative services.
Medicaid is a powerful tool to promote community integration and can be an important source of financing for assistive technology devices and services maintaining people with disabilities in their own homes and communities.
Medicaid’s category of durable medical equipment can fund medically necessary devices, and such funding may also be available through Medicaid’s inpatient hospital care program and the HCBS Waiver. Typical areas funded by these Medicaid programs include aids for daily living, prostheses, aids for vision and hearing impairments, wheelchairs and other mobility aids, augmentative communication and assistive technology services. Medicaid "optional" programs including rehabilitative services and physical therapy have been accessed to finance augmentative communication, mobility, and other assistive technology devices. In addition to inpatient hospital services, other "mandatory" Medicaid services that can finance assistive technology include Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) and home health. HCBS Waiver has a specific "assistive technology" service available among the list of potential Waiver services.
Assessing Fiscal Effort in the States
Great variation exists in the commitment to MR/DD funding in each of the states. To assess this commitment, fiscal effort was calculated for each of the states in terms of total spending, institutional spending, and community spending. Fiscal effort is a ratio that can be utilized to rank states according to the proportion of their total statewide personal income devoted to the financing of developmental disabilities services. Ohio’s fiscal effort increased nine percent between 2000 and 2002.
Fiscal Effort for MR/DD Services in the U.S.
| 2002 | 2000 | % Change |
| $3.94 | $3.60 | 10% |
Fiscal Effort for MR/DD Services in Ohio
| 2002 | 2000 | % Change | Rank |
| $5.23 | $4.79 | 90% | 24 |
Between 2000-2002, almost every state posted increases in total MR/DD fiscal effort. Increases of 25% or more were realized in Florida, Georgia, Hawaii, and Minnesota. Total fiscal effort declined from 1% to 3% during 2000-2002 in Delaware, the District of Columbia, Michigan, Missouri, North Dakota, Rhode Island, and South Carolina. Community services fiscal effort exhibited the same variability as total spending fiscal effort in 2002. Community fiscal advances in community services fiscal effort during the 2000-2002 period were posted by 45 states, with the most significant increases, those exceeding 40%, in Florida, Georgia, and Minnesota.
Ohio’s Fiscal Effort Ranking
| Total Spending | - | Community | - | Insitutional | - |
| 2002 | 2000 | 2002 | 2000 | 2002 | 2000 |
| 11 | 11 | 17 | 17 | 9 | 8 |
Aging Caregivers and the Growing Demand for Services
The aging of our society directly influences the demand for developmental disabilities services. This occurs because the majority of people with developmental disabilities in the United States currently reside with family caregivers. As these caregivers age beyond their caregiving capacities, formal living arrangements must be established to support their relatives with disabilities. In the U.S., 36% of people 65 years of age and over have one or more functional limitations as opposed to eight percent of the population under age 65. By 2050, the number of people 60 years or older in the world is projected to exceed the number of people 59 years or younger for the first time in history. Based on the 1994/95 data from the National Health Interview Survey- Disability Supplement (NHISD), using a rate of 1.58% was recommended to estimate prevalence for persons with mental retardation, cerebral palsy, autism, epilepsy, and other childhood disabilities originating prior to 22 years of age. Surveys indicate that 2.79 million of the 4.56 million persons with developmental disabilities in the U.S. population in 2002 were receiving residential care from family caregivers. This "informal" system of residential care served about six times the number of persons served by the formal out-of-home residential care system (460,455 persons). State-by-state estimates can be generated by taking into account differences in states’ utilization of out-of-home placements and the number of the states’ caregivers who are over age 60. In Ohio 29,708 people with MRDD lived with aging caregivers in 2002.
Increased Longevity of Persons with MR/DD
A second factor impinging on the growing demand for MR/DD services is the increase in the lifespan of individuals with developmental disabilities. The mean age at death for people with mental retardation was 66 years in 1993—up from 19 years in the 1930s and 59 years in the 1970s. The mean age at death for the general population in 1993 was 70 years. There also was a continued improvement in their health status. As people with developmental disabilities live longer, they require services and support for longer periods of time. This directly impacts the finite capacities of state service delivery systems. The increased life expectancy of people with developmental disabilities since 1970 accounts for a significant percentage of the increased demand for residential services in the states today. The likelihood of older people with developmental disabilities living into their own retirement and outliving their family caregivers has increased substantially in recent years.
Waiting Lists in the States
In 2000, states reported over 58,000 people with developmental disabilities were on formal state waiting lists for residential services.
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