Public spending for MR/DD services grew rapidly during FYs 2000–2002. This rapid growth was followed by reductions in spending for MR/DD services as the nation's economy declined during 2002–2004. However, convergent factors stimulating future expansion of funding and services for persons with MR/DD include rapidly expanding cohorts of aging caregivers in the states, increasing longevity of persons with MR/DD, and extensive litigation in the states promoting access to services.
The State of the States in Developmental Disabilities Project is a comparative nationwide longitudinal study of the financial and programmatic structure of residential and community services for persons with mental retardation and developmental disabilities (MR/DD) in the United States. The project has produced over 140 publications over the past 2 decades and provided more than 600 presentations in 49 states and 6 foreign countries on this topic (see http://www.cu.edu/ColemanInstitute/stateofthestates/pubhistory.htm) along with descriptive profiles of the structure and financing of MR/ DD services in each state during Fiscal Years (FYs) 1977–2002.
During the 25-year period encompassed by our study, the number of persons residing in state-operated MR/DD institutions declined from 149,892 in FY 1977 to 44,252 in FY 2002, and the number of individuals with MR/DD residing in settings for 6 or fewer persons increased from about 20,000 to 298,375. Total public spending for MR/DD services more than tripled during the FYs 1977–2002 period, from $9.8 to $34.6 billion on an adjusted basis (2002 constant dollars). In this update of our study, we describe recent financial and programmatic trends in the states during FYs 2000–2004, a period first of rapid growth and then of subsequent decline in the U.S. economy. In the article we summarize some of the information presented in a recently published monograph (Rizzolo, Hemp, Braddock, & Pomeranz-Essley, 2004).
Approach and Analysis
As in previous studies of public spending for MR/DD services in the states (e.g., Braddock, 2002a), we initiated the present study by obtaining copies of published executive budget documents directly from the 50 states and the District of Columbia. Content analysis of state budget documents began in January 2003, and communication with state officials continued through October 2003. Although activities of the principal mental retardation and developmental disabilities state agencies were our primary focus, we also included state health and welfare and social services agencies because, in many states, these organizations administered key service programs for individuals with developmental disabilities such as Medicaid and the Social Services Block Grant.
State-specific survey instruments were mailed to each director of the 50 MR/DD state agencies plus the District of Columbia and to relevant leadership in state health and social services agencies. We collected data from each state on (a) revenue and spending for public and private institutional facilities serving 16 or more persons; (b) revenue and spending for community residential services for 15 or fewer individuals and related community supports, including supported living, personal assistance, family support, and supported employment; and (c) the average daily number of individuals served in various sizes and types of out-of-home residential settings, in day and work programs (e.g., supported employment, through Medicaid Home and Community Based Services—HCBS Waivers), and in family support programs.
Following transmittal of the individualized survey instruments to the states, we engaged in repeated electronic correspondence with over 100 state program and budget officials from the MR/DD, Medicaid, social services, and health and public welfare departments in the states. The purpose of this intensive follow-up activity was to establish the reliability and validity of data acquired from various published and unpublished state budget and program documents. The states' responses to the survey instruments and to our follow-up initiatives were then used to construct preliminary FYs 2000–2002 financial and programmatic profiles for each state. State profiles and the underlying data sets were then sent to the relevant state program directors and their staffs for multiple interactive reviews.
Two broad categories were employed in the classification of state-by-state revenue and spending data: institutional services funds (funds supporting persons in public or private facilities for 16 or more individuals) and community services funds (funds supporting persons in settings for 15 or fewer individuals). The institutional services category was subdivided into state-operated institutional 16+ residential services programs and privately operated 16+ residential programs. Special analyses were also completed using 6 or fewer persons as the defining size metric for community services. These analyses are presented in the monograph that this article summarizes (Rizzolo et al., 2004) and on our website in the profiles section on states.
Classification categories utilized for the analysis of community MR/DD spending in the states included (a) state Medicaid matching funds, (b) state general funds not utilized to match Medicaid funds, (c) local and county government funding (including funds used to match Medicaid), (d) state supplement payments for Supplemental Security Income (SSI), and (e) other miscellaneous state funds. The classification of federal spending for Medicaid-funded community services and supports included federal funds associated with (a) public and private Intermediate Care Facilities for the Mentally Retarded (ICFs/MR, (b) HCBS Waivers, and (c) other federal Medicaid funding that supports rehabilitation services, clinic services, targeted case management, and personal care services; additional federal classification categories for measuring community services spending levels in the states included (d) Title XX/Social Services Block Grant, (e) HCBS Waiver-related Supplemental Security Income/Adults Disabled in Childhood funds, and, (f) other miscellaneous federal funds. Institutional services funds were subclassified into state and federal funding categories associated with public and private settings for 16+ persons in a manner similar to the approach used to classify community services spending. However, no HCBS Waiver funds were utilized in institutional settings The categories used in the classification of MR/DD spending in the states for FYs 1977 to 2002 were as follows:
Institutional Services Funds for 16+ Persons
ICF/MR Medicaid match
General funds (not including state ICF/MR match)
Other state funds (not including state ICF/MR match)
Local funds in excess of rematch
Title XX/Social Services Block Grants
Other federal funds
Private 16+ Institutional Services Funds
ICF/MR Medicaid match
General funds (not including state ICF/MR match)
Other state funds (not including state ICF/MR match)
Local funds in excess of match
Other federal funds
Community Services Funds for 15 or Fewer Persons
ICF/MR Medicaid match
General funds (not including state ICF/MR match)
Other state funds (not including state ICF/MR match)
Local/county funds in excess of match
SSI state supplement funds
ICF/MR Medicaid match
Small public ICF/MR (<16)
Small private ICF/MR (<16)
Other Medicaid services Title XX/Social Services Block Grants
Other federal funds
SSI Adults Disabled in Childhood (HCBS Waiver Participants)
Reliability of the classification of the MR/DD spending and revenue data into the various classification categories utilized in this study has been demonstrated to be high (Braddock & Fujiura, 1991). Winer's (1971) unbiased intraclass correlation coefficients were between .88 and 1.00 in each of the state data sets. Less than perfect reliabilities for classification have typically been due to identifying additional expenditures overlooked in a previous edition of the study (e.g., fringe benefits in a given state) or, occasionally, to reclassifying expenditures from the institutional to the community services category or the reverse as more accurate information was provided by the state agency or became otherwise available to the researchers.
In addition to producing a statistical summary of trends in the states and nationally, we computed fiscal effort for each state. This calculation, which controls for differences in state wealth, involved dividing the level of MR/DD spending in a given state for a given FY by aggregate statewide personal income for that state in the same FY. States were ranked in terms of funds allocated for MR/DD services per $1,000 of statewide aggregate personal income in FYs 2000 and 2002. Fiscal effort was also evaluated to ascertain rates of change across the FYs 2000–2002 period. Financial data collected for the study were adjusted to constant 2002 dollars using the state and local subindex of the Gross National Product Implicit Price Deflator (Bureau of Economic Analysis, 2003).
Trends in MR/DD Spending: FYs 2000–2002
Total federal, state, and local spending for MR/ DD services in the states grew 13% in real economic terms, from $29.1 billion (unadjusted) in FY 2000 to $34.6 billion in FY 2002. Seventy-eight percent of these resources was allocated for residential services and the related array of day programs and other community services, such as supported employment. The remaining 22% of funds financed care in the nation's public and private institutions for 16 or more persons. Inflation-adjusted spending for community services advanced 17% from FY 2000 to FY 2002. In contrast to the vigorous growth of community spending, inflation-adjusted spending for public and private 16+ institutions declined by less than 1% during FYs 2000–2002.
Most of the growth in MR/DD spending during FYs 2000–2002 was financed with the HCBS Waiver. Spending for the HCBS Waiver first surpassed spending for the ICF/MR program on a nationwide basis in FY 2001. In FY 2002, state–federal HCBS Waiver funds comprised $13.0 billion MR/DD spending (Figure 1). The second largest source of revenue for financing MR/DD services was the ICF/ MR program, which represented $10.9 billion of total funding nationally. As can be seen in the figure, 8% of residential and community services, funding in the U.S. financed other Medicaid services, including personal care, rehabilitative services, clinic services, and targeted case management. In total, state–federal Medicaid funding constituted 77% of the funding for MR/DD services in the states in FY 2002. The remaining funding consisted of $2.4 billion in federal Supplemental Security Income (SSI) and Adult Disabled Child (ADC) payments, $0.5 billion for the Federal Social Services Block Grant Program, $4.1 billion in “unmatched” state funds, and $0.8 billion in local/county funding.
Unmatched state general funds and local/county government funds are those monies potentially available to match additional federal Medicaid funding. States with the highest levels of potentially unmatched state/local funding included California ($959 million), Ohio ($550 million), Texas ($373 million), New Jersey ($310 million), and Illinois ($289 million). (Consult Rizzolo et al., 2004, or our previously noted website of state profiles for additional information on estimated levels of unmatched funds in other states.)
Growth in Spending in the States
Growth in MR/DD spending was extremely strong in most states during FYs 2000–2002. In absolute terms (i.e., aggregate spending growth for institutional and community MR/DD services in constant dollars from federal, state, and local/county sources), total nationwide spending grew more rapidly between FYs 2000–2002 than in any 2-year period in the 26 years for which data have been collected in our project. Total MR/DD funding in the states increased by $4.0 billion in constant 2002 dollar terms. Every state, with the exception of the District of Columbia, Michigan, and Missouri, increased MR/DD spending in real economic terms during FYs 2000– 2002. However, for the first time, in FY 2000, federal funding exceeded state and local funds allocated for MR/DD services in the United States.
Total MR/DD adjusted spending increased by 34% to 41% in four states: Minnesota (41%), Hawaii (39%), Florida (34%), and Georgia (34%). The dramatic growth in spending in these four states (Table 1) can largely be attributed to the substantial expansion of HCBS Waiver services. In FY 2001, Minnesota had a period of “open enrollment,” allowing counties to expand Waiver enrollment and conduct outreach efforts. This initiative was in response to advocacy efforts by The Arc of Minnesota (2002) to “unlock the waiting list.” The average number of persons receiving HCBS Waiver services in Minnesota increased from 7,607 persons in FY 2000 to 14,514 persons in FY 2002. Total state and federal spending for HCBS Waiver services in the state exceeded $700 million in FY 2002 (Minnesota Department of Human Services, 2003).
The substantial spending increases in Florida were attributable to the rapid expansion of the HCBS Waiver following settlement of the Doe v. Bush (2001) case. In FY 2002, Florida's HCBS Waiver supported over 25,000 persons with MR/ DD. Total MR/DD spending in Florida exceeded $1 billion in FY 2002—almost double what the state spent when Governor Jeb Bush took office in 1999. Governor Bush stated that he remained “steadfastly committed to do all I can as Governor to improve the quality of life for people with developmental disabilities, giving each person the opportunity, resources and training needed to enable them to reach their full potential” (“Governor Bush,” 1999). Georgia also dramatically expanded HCBS Waiver services, more than doubling the number of persons served between FYs 2000–2002, from 3,612 to 8,190. Waiver spending in Hawaii increased by two thirds and the number of Waiver participants increased by 43%, from 1,089 in FY 2000 to 1,560 in FY 2002.
Eight states increased total MR/DD spending by 20% to 30%: Alaska, Idaho, Iowa, Kentucky, Nevada, New Mexico, Oregon, and West Virginia. An additional 19 states allocated 10% to 19% increases in funding: Alabama, Arizona, Arkansas, California, Indiana, Louisiana, Maine, Maryland, Mississippi, New Hampshire, New Jersey, New York, Ohio, Oklahoma, Pennsylvania, Tennessee, Vermont, Virginia, and Washington. Single-digit increases in spending over the 2-year period were implemented in 17 states: Colorado, Connecticut, Delaware, Illinois, Kansas, Massachusetts, Montana, Nebraska, North Carolina, North Dakota, Rhode Island, South Carolina, South Dakota, Texas, Utah, Wisconsin, and Wyoming. Only 2 states and the District of Columbia reduced total MR/DD spending. Michigan's spending declined 5% and the District of Columbia and Missouri reduced total MR/DD spending by less than 1% during FYs 2000–2002.
Community services spending
As previously noted, community services was defined in this study to include residential services provided in settings for 15 or fewer persons and related community-based day program services and individual and family supports. Using this definition, we found that spending for community services grew from $21.9 billion to $27.0 billion nationally during FYs 2000–2002, an inflation-adjusted increase of 17% (see Table 1). Had we utilized the 6 or fewer person metric to define community services across the states, total community services spending would have been $18.9 billion and $23.2 billion during FYs 2000 and 2002, respectively.
Spending for individual and family supports, a subcomponent of community services that includes family support, supported living/personal assistance, and supported employment, comprised $4.4 billion of the $27.0 billion for community services spending in 2002. Individual and family support spending grew by 26% in real economic terms during the 2000– 2002 period, over 50% faster than the growth rate for community services generally. However, the $1.38 billion in funds committed for family support spending constituted only 5% of total nationwide community services spending; and only 6% of all family support funding in the states was being utilized in direct cash subsidy payments to families. Twenty states were providing direct cash subsidy payments. Three of these states (Illinois, Michigan, and Texas) provided a large majority of this funding.
As can be seen in Table 1, the states with the most extensive percentage increases in community services spending during FYs 2000–2002 were Georgia, Florida, Minnesota, Hawaii, Nevada, Kentucky, Arkansas, Mississippi, Tennessee, Iowa, and Virginia. Growth in community services spending advanced 20% to 29% in 13 states: Alabama, Alaska, California, Delaware, Idaho, Indiana, Louisiana, New Jersey, New Mexico, Oklahoma, Oregon, Pennsylvania, and West Virginia. Another 12 states increased community spending by 10% to 19%: Arizona, Illinois, Maine, Maryland, New Hampshire, New York, North Carolina, Ohio, Utah, Vermont, Washington State, and Wyoming. Twelve states allocated increases of 2% to 9% (Colorado, Connecticut, Kansas, Massachusetts, Montana, Nebraska, North Dakota, Rhode Island, South Carolina, South Dakota, Texas, and Wisconsin). Only 3 jurisdictions reduced spending for community services. Michigan and Missouri reduced such spending by 3% and the District of Columbia reduced spending by less than 1% during FYs 2000–2002.
Public/private spending for 16+ institutions
Spending for public and private facilities serving 16 or more persons constituted 22% of total MR/DD nationwide spending in FY 2002. Of the $7.7 billion total in institutional spending (Table 1), 78%, or $6.0 billion, was allocated to support the 44,252 residents of the nation's state-operated 16+ institutions. The remaining $1.7 billion supported 32,333 persons residing in privately operated 16+ person institutional facilities.
The majority of the states continued to reduce spending for state-operated 16+ institutions during FYs 2000–2002 (n = 24 of the 42 states that operated such facilities). However, 18 states committed additional funding, in inflation adjusted terms, for such facilities (see Table 1). The most notable increases in public spending for state-operated 16+ institutions (10% or more growth) were in Kentucky (30%), Nevada (11%), and Connecticut (10%). Idaho, Iowa, Louisiana, Massachusetts, Missouri, Nebraska, New York, South Dakota, and Texas allocated increases of between 5% and 9%; and 6 states increased state-operated 16+ institutional spending by 1% to 4%: Arizona, Illinois, New Jersey, South Carolina, Virginia, and Wisconsin.
Private 16+ spending decreased by less than 1% nationally during FYs 2000–2002 (Table 2). Spending decreased by 5% to 19% in 12 states, by 20% to 55% in 4 states, and by less than 1% in 2 states. Spending increased by 1% to 14% in 15 states and 15% to 26% in 7 states. Alaska, Colorado, Massachusetts, Michigan, Montana, Nevada, Vermont, and Wyoming did not operate 16+ private institutional facilities during FYs 2000–2002. Data for FY 2002 were not available for Alabama and South Dakota.
Costs by Setting
Costs of care in residential programs varied widely by state and type of residential setting. The nationwide annual cost per average daily resident for the reporting states ranged from $19,211 in supported living to $134,619 in state-operated 16+ institutions. Table 2 presents annual costs of care in five settings: private institutions for 16 or more persons (both ICFs/MR and non-ICFs/MR), state-operated 16+ institutions, private ICFs/MR for 15 or fewer persons, public ICFs/MR for 15 or fewer persons, and supported living/personal assistance.
Costs in private facilities
In FY 2002, 32,333 persons with MR/DD resided in private facilities for 16 or more persons. The majority of persons served in private facilities (24,708 of the 32,333 persons) were in certified ICF/MR settings. The average annual per person cost of care across all private institutions, $52,585, varied dramatically, ranging from less than $30,000 in California, Connecticut, and Washington to more than $150,000 in Arizona, Delaware, Oregon, and Rhode Island (see Table 2). Private 16+ facilities consisted of ICFs/MR in 36 states and non-ICFs/MR in 20 states. Some states offered both. Nationwide, the average ICF/MR cost was $59,799 per participant and the non-ICF/MR private institution cost was $29,637 per participant.
In FY 2002, 40,653 persons were served in private ICFs/MR for 15 or fewer persons. The average annual cost per resident in the 35 states that offered these settings was $67,348. Costs ranged from below $40,000 in Alabama, Colorado, and Oklahoma to more than $100,000 in Connecticut, Iowa, Kansas, Maine, New York, Tennessee, Vermont, and Virginia.
Costs in public facilities
Since 1968, the number of individuals with developmental disabilities served in 16+ person state-operated facilities has declined an average of 4% each year for 35 consecutive years. From FY 2000 to FY 2002, the population residing in these facilities dropped by 7%, from 47,372 to 44,252 persons. The average annual per person cost of care in state-operated 16+ institutions, based on the number of average daily residents during the year, 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 (see Table 2).
Publicly operated ICFs/MR for 15 or fewer persons were provided to 2,204 individuals in 10 states in FY 2002. The annual public ICF/MR cost per average daily resident ranged from $40,955 in Louisiana to over $100,000 in Arizona, Kentucky, New York, and Rhode Island. The national average cost was $81,483.
Costs for supported living/personal assistance settings
The last column in Table 2 presents the combined average annual per person cost for supported living and personal assistance services. Supported living was defined for purposes of this study to include housing in which individuals choose where and with whom they live, in which ownership is by someone other than the support provider (i.e., by the individual, the family, a landlord, or a housing cooperative), and in which the individual has a personalized support plan that changes as his or her needs and abilities change (Karan, Granfield, & Furey, 1992; Racino & Taylor, 1993; Smith, 1990; Smull, 1989). According to this definition, 47 states reported providing supported living services to 95,223 individuals in FY 2002 at a cost of $2.0 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” (Braddock, Hemp, Bachelder, & Fujiura, 1995). In FY 2002, personal assistance services were provided to 26,927 persons in 22 states.
Every state except Kansas provided supported living or personal assistance services in FY 2002. Spending per participant ranged from below $2,000 per annum in Mississippi and West Virginia to over $50,000 in Maine, New Mexico, Ohio, Oklahoma, Rhode Island, and Tennessee. Obviously, there was considerable variation across the states in the mix of supported living and personal assistance services provided.
Fiscal Effort in the States
Total MR/DD Fiscal Effort
Fiscal effort is a measure of the states' commitments to fund MR/DD services that controls for differences in states' wealth or economic capacity. As previously noted, it is defined as a state's spending for MR/DD services from federal, state, and local sources, per $1,000 of aggregate state personal income. The MR/DD fiscal effort increased 9.4% nationally in FY 2002 over the 2000 level—$3.60 to $3.94 per $1,000 of personal income (Figure 2). Between FY 2001 and FY 2002 alone, total MR/DD fiscal effort in the states rose from $3.70 to $3.94 per $1,000 of total state personal income, a 6.4% increase. This represented the second largest annual percentage increase in fiscal effort in the quarter of a century for which the State of the States in Developmental Disabilities Project has collected data (1977–2002).
Between FYs 2000–2002, 44 states posted increases in total MR/DD fiscal effort. As can be seen in Table 3, the most substantial growth in fiscal effort between FYs 2000 and 2002 occurred in Minnesota, Hawaii, Oregon, Georgia, Florida, and Idaho. Maine led the nation in total fiscal effort for FY 2002, spending $7.39 per $1,000 of state personal income on MR/DD services. Other states with the most substantial financial commitments to MR/DD services in FY 2002 included Minnesota, Rhode Island, and New York. At the other end of the spectrum, Nevada committed $1.26 per $1,000 of state aggregate wealth to MR/DD services. Hawaii was the only other state that allocated less than $2.00 per $1,000 of state personal income to finance MR/ DD services. Table 3 presents state-by-state fiscal effort data for MR/DD spending from FY 2000 to FY 2002.
Community services fiscal effort
Community services fiscal effort grew by 14% from FY 2000 to FY 2002—advancing from $2.70 per $1,000 of personal income in FY 2000 to $3.07 per $1,000 in FY 2002. Most of this growth occurred during 2001–2002, when community services fiscal effort increased 9%, or by 26¢ per $1,000 of personal income.
Community services fiscal effort varied across the states. However, advances in such effort were posted by 45 states during FYs 2000–2002, and increases exceeded 40% in Florida, Georgia, and Minnesota. Community services fiscal effort declined by between less than 1% to 6% in the District of Columbia, Michigan, Missouri, North Dakota, Rhode Island and South Carolina.
Institutional fiscal effort
In contrast to community services, 16+ public/private institutional services fiscal effort peaked nearly 2 decades ago in FY 1983 at $1.62 per $1,000 of state personal income. It has declined each year since 1983 to a low of $0.87 per $1,000 in FY 2002 (Figure 2). It was $0.90 in FY 2000.
Twenty seven states and the District of Columbia reduced their levels of fiscal effort between FYs 2000 and 2002. Thirteen states increased fiscal effort for 16+ person settings (Arizona, Connecticut, Iowa, Kentucky, Louisiana, Massachusetts, Missouri, Nebraska, Nevada, New Hampshire, New Mexico, Oregon, and South Dakota). Eight states (Florida, Hawaii, Illinois, Maine, New York, South Carolina, Texas, and West Virginia) retained their FY 2000 levels of fiscal effort in FY 2002. Alaska and Vermont reported no funding for any private or public 16+ person residential settings.
Deteriorating Fiscal Conditions in the States During FYs 2003–2004
Advances in spending for MR/DD services during FYs 2000–2002 were realized despite declining economic conditions in most states during FY 2002. Raymond Scheppach, executive director of the National Governors Association, called the states' economic condition during FY 2002–2003 “the worst budget crisis states have faced since World War II” (Brownstein, 2002; Pear, 2002). States faced deficits totaling $53.5 billion in FY 2004. This represented 10% of the aggregate of states' general fund budgets (National Conference of State Legislatures, 2003). The fiscal shortfalls exceeded 20% of state general fund budgets in Alaska, Arizona, California, and New York. Shortfalls were over 10% of budgets in 9 other states and over 3% in 15 states.
Cutbacks in state MR/DD funding were implemented in many states during FYs 2003 and 2004. In response to state budget constraints, some states have proposed the closure or substantial downsizing of state-operated institutions (see Table 4). In Alabama, Governor Riley recommended the closure of the Wallace, Brewer-Bayside, and Tarwater Developmental Centers (“Alabama Governor,” 2003). One of the three centers, the Lurleen B. Wallace Developmental Center in Decatur, Alabama, closed October 30, 2003, with the remaining 6 residents moving to the Partlow Developmental Center in Tuscaloosa (“Wallace Closing Difficult,” 2003). Ohio's Department of Mental Retardation/Developmental Disabilities announced the closure of Apple Creek and Springfield Developmental Centers (Ohio DMR/DD, 2003; State of Ohio, 2003). In Kansas, the House Appropriations Committee (2003) endorsed the creation of a commission to study the closure of one or more of the state's three mental health and two developmental disabilities institutions.
Budget reductions are also impacting community services funding. New Mexico's general fund-spending for the developmental disabilities Waiver program, for example, was reduced by 9% from FY 2002 to FY 2003 (New Mexico Legislature, 2003). To address the $9 billion shortfall in Texas, Governor Perry, Lieutenant Governor Dewhurst, and Speaker of the House Craddick in January 2003 instructed agencies and boards to reduce FY 2003 spending by 7%. For mental retardation programs, this meant an 11% reduction in 2003–2004 general funds, consolidation of mental retardation Waivers, and reduction in the number of Waiver participants. A proposed reorganization would also relocate mental retardation services from the Texas Department of Mental Health/Mental Retardation to the umbrella Health and Human Services Agency (Texas Department, 2003; Texas Health and Human Services Commission, 2003).
However, state MR/DD programs, especially optional Medicaid programs, such as the ICF/MR program and HCBS Waiver services, will benefit fiscally from the implementation of the recently enacted Jobs and Growth Tax Relief Reconciliation Act of May 2003. This act temporarily increased Medicaid's federal medical assistance percentage rate for states, thus lowering states' share of Medicaid spending by approximately $10 billion during April 1, 2003, through June 30, 2004 (Ku, 2003). The amount of relief will be a percentage of states' Medicaid spending. States have a strong incentive to incorporate this enhanced federal revenue into their FY 2004 budget planning (Ku, 2003).
We expect to see a slowing in the rate of growth of MR/DD spending nationally due to the aforementioned general budget reductions being implemented in many states during FYs 2003–2004 (Ku, Nathanson, Park, Cox, & Broaddus, 2003). We anticipate absolute spending reductions in several states as well. One of the unavoidable weaknesses of the present study, however, was that although we were able to obtain quite comprehensive and reliable data from the states for FYs 2000–2002, we relied on essentially anecdotal data obtained from secondary sources to preliminarily assess “real-time” budgetary developments during FYs 2003– 2004. In the next formal update of our study, planned for 2004–2005, we will comprehensively evaluate developments in the states during FYs 2003–2004. The impact of the recent recession will be assessed more accurately than has been possible in the present study, which primarily focused on the FYs 2000–2002 period.
Although the FYs 2003–2004 outlook for state budgets is grim in many states, three powerful sociodemographic and legal forces are at work to sustain longer term pressure on the states, and on the federal government, to continue to increase public financial commitments for MR/DD services (Braddock, Rizzolo, Hemp, & Parish, in press). First, the number of persons over age 65 will double over the next 30 years (U.S. Census Bureau, 2002), and this rapid aging of our society will increase demand for services by people with MR/DD who currently reside with family caregivers. As family caregivers age beyond their caregiving capacities, they will attempt to mobilize political support to create and fund the additional supervised living arrangements that will need to be established to support their relatives with disabilities (Braddock, 1999). In FY 2002, approximately 2.79 million of the 4.56 million persons with MR/DD in the United States were receiving residential care from family caregivers (see Figure 3), and an estimated 708,000 of these persons (25%) were residing with caregivers age 60+. State-by-state estimates of the number of aging caregivers in FY 2002 is presented in Table 5 (Rizzolo et al., 2004).
A second key factor promoting growing demand for MR/DD long-term care services is an increasing lifespan. The mean age at death for persons with mental retardation in the United States was 66 years in 1993, up from 59 years in the 1970s. The mean age at death for the general population in 1993 was 70 years. Janicki (1996) has noted that with continued improvement in their health status, individuals with mental retardation, particularly those without the most severe impairments, are expected to have a lifespan equal to that of the general population. The increased life expectancy of persons with MR/ DD has accounted for an unknown, but no doubt, significant percentage of the growth in demand for residential services in recent decades. This longevity-induced demand for residential and community services seems likely to continue to grow as lifespans increase for persons with MR/DD at a faster rate than for the general population.
Third, class-action litigation has also emerged once again in the United States as a force shaping the funding and development of service delivery systems for persons with MR/DD. In the 1990s, three types of class-action litigation emerged: lawsuits filed (a) to force states to expand services to people on waiting lists; (b) to force states to meet the requirements of the community integration mandate in the Olmstead Supreme Court decision; and (c) on behalf of individuals eligible for Medicaid services, but who did not receive them. By April 2004, 26 waiting list lawsuits, 10 Olmstead lawsuits, and 19 Medicaid-access lawsuits were pending or completed (Smith, 2004). A number of these cases have resulted in agreements that led to the appropriation of substantial new funding for residential and community services.
Thus, as a consequence of demographic dynamics and legal rights initiatives, the states and the federal government will increasingly be pressed to expand long-term care resources for people with developmental disabilities and their families. However, greater demands will also appropriately be placed on the states and on the federal government to expand home and community-based long-term care services for the long-neglected population of persons with physical disabilities and with severe, persistent mental illness (Braddock, 2002b). Confronting this rapidly growing broad-based demand for long-term care services in a context of budgetary uncertainty presents formidable challenges for the states, for the federal government, and for the field of developmental disabilities.
Six of the more obvious challenges for the field of developmental disabilities include (a) building stronger political and programmatic alliances with mental and physical disability long-term care constituencies and with the elderly population (Janicki, 1996; Johnson, 2003); (b) developing thousands of additional, Medicaid-funded, flexible, person-centered, residential community services and family support programs to reduce waiting lists in the states (“Money Follows,” 2003; Parish, Pomeranz-Essley, & Braddock, 2003; Polister, 2002); (c) enhancing the near-poverty level wages and benefits of direct support staff in community programs and the quality of services they provide (Test, Flowers, Hewitt, & Solow, 2003); (d) reducing the 75% to 80% unemployment rates for persons with MR/DD through the expansion of supported employment programs (President's Committee, in preparation); (e) developing and implementing health promotion and disease prevention initiatives in residential and community services settings nationwide (Rimmer & Braddock, 2002; U.S. Department of Health, 2000); and (f) developing and promoting the utilization of emerging assistive technologies for people with MR/ DD that support independent living, productivity, educational achievement, and health and safety, thereby reducing the rapidly growing “cognitive digital divide” (Rizzolo, Bell, Braddock, Hewitt, & Brown, in press).
People with developmental disabilities and their families and advocates have confronted and substantially prevailed over many challenges during the past 4 decades, including repressive segregation in overcrowded, understaffed institutions; near total lack of community and family supports until fairly recently; and blatant discrimination in employment, housing, education, and health care. But much remains to be done. The six continuing challenges noted above remind us of the adage that “abuses removed call attention to the more galling ones that remain.”
Preparation of this manuscript was supported in part by Grant 90DN0076 from the Administration on Developmental Disabilities, U.S. Department of Health and Human Services.
Authors:David Braddock, PhD, Associate Vice President, University of Colorado System; Coleman-Turner Chair and Professor in Psychiatry; Executive Director, The Coleman Institute for Cognitive Disabilities; Richard Hemp, MA, Senior Professional Research Assistant, University of Colorado Health Sciences Center; and Mary C. Rizzolo, MA, Professional Research Assistant, University of Colorado Health Sciences Center, University of Colorado, Department of Psychiatry and Coleman Institute for Cognitive Disabilities, 4001 Discovery Dr., Suite 210, Boulder, CO 80303