Within broad national guidelines established by federal statutes, regulations, and policies, each state:

• establishes its own eligibility standards;
• determines the type, amount, duration, and scope of services;
• sets the rate of payment for services; and
• administers its own program.

While states generally have discretion in determining which groups their Medicaid programs will cover, including the financial criteria for eligibility, to be eligible for federal funds, states are required to provide Medicaid coverage for certain individuals to include the following:

• low-income people who are over age 65;
• blind or disabled;
• members of families with dependent children;
• low-income children and pregnant women;
• recipients of SSI in most states;
• certain Medicare beneficiaries; and
• in many states, medically needy individuals.

As with the eligibility criteria, states have considerable flexibility within their plans; however, there are mandatory requirements if federal matching funds are to be received. A state’s Medicaid program must offer medical assistance for certain basic services to most categorically needy populations such as “home health care for persons eligible for skilled nursing services.” States may also use federal matching funds to provide optional services to include the following:

• Diagnostic services
• Clinic services
• ICF/MRs
• Prescribed drugs and prosthetic devices
• Optometrist services and eyeglasses
• Nursing facility services for children under age 21
• Personal care
• Transportation services
• Rehabilitation and physical therapy services
• HCBS

While Section 1902(a) (23) of the Social Security Act establishes the right of Medicaid beneficiaries to choose their own provider, consumer direction beyond this provision varies considerably.

Medicaid LTC expenditures in FY 2002 equaled $82.1 billion, approximately 34 percent of total Medicaid expenditures, which equaled $243.5 billion for 39 million enrollees. Medicaid LTC expenditures in FY 2003 equaled $83.8 billion, approximately 32 percent of total Medicaid expenditures, which equaled $259.6 billion for approximately 41.9 million enrollees. Financial assistance to states ranged from $2.4 million to $28.2 billion with an average of $3.3 billion. ,

Medicaid Home- and Community-Based Services Waiver Program

In addition to the Medicaid state plan, states have the option, upon federal approval, to provide HCBS for Medicaid-eligible people who might otherwise be institutionalized. HCBS may be offered as a supplement to, or instead of, optional services available through the state plan. Section 1915(c), which authorizes HCBS waivers, was added to Title XIX of the Social Security Act by P.L. 97-35, the Omnibus Budget Reconciliation Act of 1981, to encourage the provision of cost-effective services to Medicaid recipients in noninstitutional settings. Before P.L. 97-35, the Medicaid program provided little coverage for LTC services in a noninstitutional setting, but offered full or partial coverage for such care in an institution. In an effort to address these concerns, Section 2176 of P.L. 97-35 was enacted, adding Section 1915(c) to the Act. ,

The HCBS waiver program affords states the flexibility to develop and implement creative alternatives to institutionalizing Medicaid-eligible individuals. The program recognizes that many individuals at risk of institutionalization can be cared for in their homes and communities, preserving their independence and ties to family and friends, at a cost no higher than that of institutional care.

Two primary criteria determine eligibility for 1915(c) waiver programs: financial eligibility for Medicaid and functional eligibility for the services provided, which is generally tied to eligibility for institutional care. Recipients of waiver services must meet both criteria.

Before the creation of the HCBS waiver program, financial eligibility requirements for Medicaid were less stringent for institutional services than for home-based services, which made it easier for people to enter institutions than to receive care in the home. The waiver program helped to correct this institutional bias by allowing states to set financial eligibility limits for income that were as much as 300 percent of the federal SSI benefits, generally the same level used for a nursing facility. The functional eligibility criteria for waiver services vary widely from state to state and vary by waiver target population within a given state. Currently, there are 285 waivers nationwide serving 900,000 individuals with disabilities. The service mix includes case management, personal care, environmental adaptations, habilitation, transportation, assisted living services, and respite care.

Forty-nine states now have HCBS programs under §1915(c) of the Social Security Act, the HCBS waiver program. (Arizona offers its HCBS program under a §1115 waiver.) These and other programs allow states to target specific population groups and limit the number of participants to control costs. Individuals with developmental disabilities or mental retardation constitute 38 percent of waiver program participants and 75 percent of expenditures. The elderly and people with physical disabilities account for 62 percent of participants and 25 percent of program expenditures.

Table 1.4. Medicaid HCBS Waivers by Population

Population Number of States

Elderly/people with disabilities 49

Mental retardation/developmental disabilities 46

Technology-dependent children 17

HIV/AIDS 17

Brain injury 15

Mental illness 3

Medicare Programs (Part A and Part B)

Medicare provides the foundation for our nation’s financing of health care for older Americans. Authorized by Congress in 1965 as Title XVIII of the Social Security Act, Medicare is a federal health insurance program for eligible elderly people or eligible people with disabilities. Known in 1965 as Health Insurance for the Aged and Disabled, Medicare generally covers individuals age 65 and over to complement the retirement, survivors, and disability insurance benefits under Title II of the Social Security Act.

Traditionally, Medicare has consisted of Part A, Hospital Insurance (HI), which reimburses hospitals and other covered entities of the program, and Part B, Supplementary Medical Insurance, which provides supplemental medical insurance benefits. The Balanced Budget Act (BBA) of 1997 (P.L. 105-33) established Part C, the Medicare+Choice program, which expanded beneficiaries’ options for participation in private sector health care plans. Since 2004, the Supplementary Medical Insurance component has included Medicare Part B and Part D. Part B pays for physician, outpatient hospital, home health, and other services for the aged and disabled; and Part D will initially provide access to prescription drug discount cards and transitional assistance to low-income beneficiaries. In 2006 and later, Part D will provide subsidized access to drug insurance coverage on a voluntary basis for all beneficiaries and premium and cost-sharing subsidies for low-income enrollees.

Medicare Part A—Hospital Insurance Component

Individuals eligible for Medicare Part A include people who are age 65 or over and eligible for Social Security or Railroad retirement benefits; people who have been eligible for Social Security or railroad retirement disability benefits for at least 24 months; and/or workers who are insured and have end-stage renal disease (ESRD), as well as their spouses and children.

The Medicare HI component covers the following services:

• inpatient hospital care—initial deductible required if admitted, in addition to copayments for stays beyond 60 days;
• skilled nursing care—if the care follows within 30 days of a hospital stay of 3 days or more and is considered medically necessary, limited to 100 days;
• home health agency—covers the first 100 visits only after a 3-day hospital stay or a skilled nursing facility stay. There is no copayment or deductible for home health under Part A; and
• hospice care—provided to terminally ill patients with life expectancies of 6 months or less. No deductible to be paid by enrollee, but there is coinsurance for prescriptions and inpatient respite care.

Medicare Part A is financed mainly through a mandatory payroll tax at a tax rate of 1.45 percent of earnings, paid by each employee, and matched by the employer. People who are self-employed pay at a rate of 2.90 percent. According to the Centers for Medicare and Medicaid Services (CMS), additional funding sources for Part A include the following:

• a portion of the income taxes levied on Social Security benefits paid to high-income beneficiaries;
• premiums from certain people who are not otherwise eligible and choose to enroll voluntarily;
• reimbursements from the general fund of the U.S. Treasury for the cost of providing HI coverage to people of certain ages who retired when the program began and were unable to earn sufficient quarters of coverage;
• interest earnings on its invested assets; and
• other small miscellaneous income sources.

In 2003, according to CMS, 40.9 million people utilized Part A of Medicare, including 34.9 million people age 65 and over and 6 million individuals with disabilities. It is estimated that in 2004, there will be 41.6 million enrollees (35.3 aged and 6.4 disabled), and by 2010, 46.3 million. ,

Medicare Part B—Supplementary Medical Insurance Component

Individuals age 65 and older, and all people entitled to coverage under Part A or the HI component of Medicare, are eligible for enrollment in Part B of Medicare, also known as Supplementary Medical Insurance, on a voluntary basis by payment of a monthly premium.

Services provided under Medicare Part B must be deemed medically necessary or prescribed as preventive by a physician. Services that are not covered by Medicare include nursing care that is long term, custodial care, dentures and dental care, eyeglasses, hearing aids, and most prescription drugs. Services that are covered include the following:

• physicians’ and surgeons’ services (including some authorized services rendered by chiropractors, podiatrists, dentists, and optometrists);
• emergency department or outpatient clinic, including same-day surgery and ambulance services;
• home health not covered under Part A;
• laboratory tests, X-rays, and other diagnostic radiology services, and certain preventive care screening tests;
• ambulatory surgical center services in a Medicare-approved facility;
• most physical and occupational therapy and speech pathology services;
• comprehensive outpatient rehabilitation facility services, mental health care prescribed by physician;
• radiation therapy, renal dialysis, and some organ and bone marrow transplants;
• approved durable medical equipment for home use; and
• drugs and biologicals that cannot be self-administered.

Financing for Part B of Medicare includes premium payments paid by enrollees ($66.60 in 2004) in combination with funds from the general fund of the U.S. Treasury. According to CMS, beneficiary premiums cover only 25 percent of expenditures, making the general fund from the U.S. Treasury the largest source of funding for Medicare Part B. Supplementary Medical Insurance benefits in 2003 served 38.5 million (33.1 million aged and 5.3 million disabled). It was estimated that, in 2004, there would be 40 million enrollees, and by 2010, 43 million.

Medicaid and Medicare

Combined, the federal-state Medicaid and federal Medicare programs provide states with more than 50 percent of their LTSS funding. Originally, the programs had different goals, different target audiences, and different funding mechanisms with no provision for home- and community-based LTSS. As we have read in previous sections of this report, just understanding what the different eligibility criteria for services and supports are for the various populations requesting them is pretty complex. When we look at what actually is mandated under Medicaid and Medicare, we realize that today’s LTSS programs are add-ons and are funded primarily (outside of institutional care) as optional services. The rising need for LTSS caused by the changing demographics over the past decade has not been acknowledged by Congress as an issue that needed to be addressed. States have been challenged to find creative ways to provide services and supports through the use of federal waivers. In a way, the granting of waiver authority was a little like giving states a credit card to buy LTSS that were not yet budgeted for, either on the state or federal level.

States are at a crossroads and cannot continue to meet the LTSS needs of their citizens without federal assistance. The dually eligible population—the most fragile of all the populations and the most in need of services and supports—is consuming an inordinate amount of Medicare and Medicaid dollars. In a December 2004 letter to Congress and the Administration, the NGA wrote that it was “unacceptable” that Medicaid costs were growing at a rate of 12 percent per year and averaging 22 percent of state budgets. The letter cited two main causes of this growth: a 33 percent increase in caseloads over the past four years and LTC costs. Medicaid currently finances 70 percent of all care for nursing home residents.

It should be no surprise to policymakers that the baby boomers are getting older and will have an increasing need for services and supports to remain independent. And it is old news that people with disabilities have always needed access to services and supports to compensate for their disabilities so they can live fully engaged lives.

Other Quality-of-Life Domains

Out of the quality-of-life domains identified social support, personal assistance, and home care are possibly the most important for individuals requiring LTSS. Unfortunately, these are also the most fragmented domains and perhaps the most underfunded, depending on how one measures and defines them relative to specific programs. Independent Living State Grants, Centers for Independent Living, Special Programs for the Aging, the Senior Companion Program, the Medicaid HCBS waiver program, and the Social Services Block Grant are the six related federal programs associated with this quality-of-life domain.

Appendix 1.F, table 2 highlights the fact that no fewer than five federal agencies are responsible for the programs that attempt to mediate these important domains. Additionally, eligibility criteria vary tremendously by age, disability, and income. Only two of the programs are designed to support both frail elders and individuals with disabilities.

The degree of consumer direction is difficult to identify because the majority of these federally funded programs have delegated decision making to the local level. The variance relative to the scope of services is just as difficult to measure because of the same issues but does vary from support of the operation of Independent Living Centers to implementation and coordination of social services and home health through Medicaid state plan options and waivers.

Eligibility criteria vary for each program but are most variable with respect to the Medicaid and HCBS waiver programs that exist in those states. The states have discretion with respect to eligibility and the services that are provided.

Housing

Of the quality-of-life domains analyzed, none is more underfunded than affordable and accessible housing. According to HUD’s latest Worst Case Housing Needs Report, people with disabilities make up at least 25 percent (estimated by HUD as 1.1 million to 1.4 million people) of the households with worst-case housing needs in the United States. Some of these individuals are actually homeless and without housing of any kind. An Urban Institute study on homelessness indicates that of the 800,000 people who are homeless on any given night, 46 percent of adults have some type of disability.

HUD and the U.S. Department of Agriculture (USDA) are the two federal agencies identified that administer federal-related programs that address the housing needs of the elderly and adults with disabilities. Nine programs are administered by HUD and one by USDA. Appendix 1.F, table 4 highlights the relevant federal housing programs.

Across the nation, the reconfigurations relative to accessible and affordable housing initiatives that are under way at the state level, in general, include two primary efforts: (1) developing more state and local programs that help keep people who are disabled, frail, or cognitively impaired at home; and (2) community-based residential alternatives for people who are elderly and disabled who can no longer manage at home but do not need the 24-hour subacute care/skilled nursing environment provided in nursing homes. To make these institutional alternatives available to people with low incomes, states use a variety of state- and Medicaid-funded approaches to deliver home-based and residential services.

Nationally, on average, a person with a disability receiving SSI benefits would be priced out of the private housing market because he or she would need to pay over 105 percent of the monthly SSI check to rent a modest one-bedroom unit at the published HUD Fair Market Rent. Without housing assistance, through some type of government-funded direct support to the individual or subsidized housing to a developer, low-income individuals who are aging and/or disabled will not find an affordable place to live. Without some type of housing assistance—such as government-funded subsidized housing—low-income people with disabilities and frail elders are unable to afford decent and safe housing of their choice in the community.

In the past 30 years, states have continued to evolve their approach to housing and related services for people with disabilities. In general, states have moved away from an institutional model of segregated facilities that tie together housing and service needs to a variety of smaller community-based living options. To varying degrees, these community living alternatives are intended to provide more choices and independence for the targeted populations. With the authorization by Congress in 1981 of the Medicaid HCBS waiver, there have been new options for states to consider in supporting community integration. However, despite these increases, Medicaid payment policy does not cover housing or meal costs in a home- or community-based setting, although Medicaid does factor these costs into payments for nursing homes. In recent years, people with disabilities and individuals who are aging have been consistent in articulating essential principles to frame housing choices and related services to meet their needs. People with disabilities have pushed to separate housing choices that are affordable and accessible from the provision of LTSS.

Federal and state housing programs can target households with incomes up to 50–60 percent of the median income, or even higher in some cases. Although government housing agencies are producing new “affordable” housing every year, in many instances, this new supply of housing is not affordable to people with SSI incomes. This is true because most federal and state programs help pay for the one-time cost of developing the housing (e.g., the cost of acquisition/rehabilitation or new construction of housing) but do not fund the ongoing cost of operating the housing (e.g., insurance, maintenance/repairs, reserves, property management costs, utilities, etc.).

To make “affordable housing” truly affordable to people with disabilities and frail elders, an ongoing rent subsidy or operating subsidy is needed to ensure that all of the operating costs can be covered.

Of the quality-of-life domains of the long-term support system identified, housing appears to be the least fragmented; however, access remains a problem. While most of the federal-related programs are funded by HUD, they are underfunded, the eligibility criteria are restrictive, and consumer choice and control are limited. The trend toward shifting institutional care to home- and community-based support and services will not be realized if housing is not considered a priority area relative to LTSS for people with disabilities.

Transportation

Appendix 1.F, table 5 highlights the important transportation programs. The ability to access transportation is critical to living a full life. Having access to transportation is one of the quality-of-life domains that enable individuals requiring LTSS to maintain their independence and dignity; that is, for many it represents the vehicle to participation. For instance, transportation is the key to connecting individuals to the services and supports they need, such as visiting family and friends and participating in community activities (social, recreation, and community participation); taking care of their health needs, such as doctor and hospital visits, as well as the ability to purchase needed medical supplies, including prescriptions; securing and maintaining employment; advancing their educational goals and careers (attending school and educational advancement institutions); and providing for their nutritional and routine needs, such as the ability to access shopping centers.

The Department of Transportation funds programs that focus on the specific transportation needs of transportation-disadvantaged populations. The programs include the Job Access and Reverse Commute Grants, which are aimed at connecting low-income individuals to employment and support services; the Capital Assistance Program, which provides financial assistance to nonprofit organizations for meeting the transportation needs of elderly people and people with disabilities; and the United We Ride State Coordination Grants, which assist states that want to strengthen or jump-start efforts to coordinate human service transportation.

According to a recent GAO report on the transportation-disadvantaged populations, there are 62 federal programs that can fund transportation services for certain transportation-disadvantaged populations, which include some elderly people, people with disabilities, or low-income people who have transportation needs, such as the ability to provide their own transportation, or who have difficulty accessing conventional public transportation. Most of these programs are administered by four federal agencies: the Departments of Transportation, HHS, Labor, and Education. Programs that can fund incidental transportation services include health and medical programs or job-training programs. For example, the Medicaid program (administered by HHS) spent an estimated $976.2 million on transportation in FY 2001. The Community Transportation Association of America (CTAA) identified several programs that provide transportation for the target audience, including Workforce Investment Act programs (administered by the Department of Labor), and Vocational Rehabilitation Grants (administered by the Department of Education).

Although it appears that numerous federal programs exist to assist the transportation-disadvantaged population, research conducted by the GAO relative to these programs concluded that fragmentation and lack of coordination within supporting agencies continue to be a challenge; therefore, there is a need to coordinate the transportation services offered by these federal programs to provide “improved customer service and substantial cost savings.” Efforts toward coordinating transportation services were identified and addressed in 1986 through the creation of the Coordinating Council on Human Services Transportation by the Department of Transportation and HHS, which was renamed the Coordinating Council on Access and Mobility in 1998. In January 2004, the Departments of Labor and Education joined the council. The council was charged with coordinating and addressing issues of transportation access and mobility in their respective programs.

One significant effort of this council was the launch of the United We Ride initiative in December 2003. The United We Ride program represents a five-part transportation coordination initiative developed by the four federal agencies. This initiative moves to improve federal leadership and commitment “by establishing coordination as a priority and providing some dedicated financial support and proactive technical assistance.”

The members of this council and its mandate were further enhanced through Executive Order 13330 on Human Service Transportation Coordination, issued by President Bush on February 24, 2004, “to enhance access to transportation to improve mobility, employment opportunities, and access to community services for persons who are transportation-disadvantaged.” The order established the Interagency Transportation Coordinating Council on Access and Mobility within the Department of Transportation, which expands the members of the 1998 council. The membership of this council now includes secretaries from the Departments of “Transportation, Health and Human Services, Education, Labor, Veterans Affairs, Agriculture, Housing and Urban Development, and the Interior, the Attorney General and the Commissioner of Social Security and such other federal officials as the Chairperson of the Council may designate.” According to the language of the Executive Order, it was issued based on the following findings and principles:

(a) A strong America depends on citizens who are productive and who actively participate in the life of their communities.

(b) Transportation plays a critical role in providing access to employment, medical and health care, education, and other community services and amenities. The importance of this role is underscored by the variety of transportation programs that have been created in conjunction with health and human service programs, and by the significant Federal investment in accessible public transportation systems throughout the Nation.

(c) These transportation resources, however, are often difficult for citizens to understand and access, and are more costly than necessary due to inconsistent and unnecessary Federal and State program rules and restrictions.

(d) A broad range of Federal program funding allows for the purchase or provision of transportation services and resources for persons who are transportation-disadvantaged. Yet, in too many communities, these services and resources are fragmented, unused, or altogether unavailable.

(e) Federally assisted community transportation services should be seamless, comprehensive, and accessible to those who rely on them for their lives and livelihoods. For persons with mobility limitations related to advanced age, persons with disabilities, and persons struggling for self-sufficiency, transportation within and between our communities should be as available and affordable as possible.

(f) The development, implementation, and maintenance of responsive, comprehensive, coordinated community transportation systems is essential for persons with disabilities, persons with low incomes, and older adults who rely on such transportation to fully participate in their communities.

Nutrition

Nutrition, like housing and transportation, represents another essential LTSS that the elderly and people with disabilities require to maintain quality of life and to help them maintain independent living. At the beginning of the 20th century, life expectancy was less than 50 years—at that time individuals did not face things such as chronic long-term illness or the need for special care that can come from aging into one’s 70s, 80s, and even 90s. However, by 1950, with the advent of provisions such as better nutrition, clean water, pasteurized food, and refrigeration, life expectancy had increased to 63 years.

According to a USDA report to Congress, the investment in nutrition assistance in the United States has been a critical tool in fighting undernutrition and related health problems. It is well established that good nutrition is fundamental to proper growth, development, health, and performance. Diet is widely recognized as a central component of health promotion and disease prevention. Scientific evidence increasingly supports the fact that good nutrition is essential to health, self-sufficiency, and quality of life. ,

People with disabilities and special health care needs frequently have nutrition problems, including growth alterations, metabolic disorders, poor feeding skills, medication-nutrient interactions, and partial or total dependence on enteral or parenteral nutrition. Poor health habits, limited access to services, and long-term use of multiple medications are considered risk factors for additional health problems.

There are three main federal-related nutrition programs that address the nutritional needs of the elderly and individuals with disabilities: the Elderly Nutrition Program (HHS), and the Senior Farmers’ Market Nutrition Program and Food Stamps Program (Department of Agriculture).

The relationships among appropriate nutrition services, positive health outcomes, and reduced health care costs for older adults and individuals with disabilities continue to be established. , Good nutritional status and personal well-being benefit both the individual and society: Health is improved, dependence is decreased, hospitalization stays and time required to recuperate from illness are reduced, and utilization of health care resources is contained. , , While food is sustenance required by every living being to survive, access to proper nutrition remains a substantial problem for the elderly and people with disabilities. Many of these individuals have low incomes and do not receive enough in retirement or disability benefits to meet all of their expenses and to purchase healthy and nutritious meals.

Assistive Technology

LTC encompasses a broad range of services and supports that the elderly and individuals with disabilities require to maintain a long-term quality of life. Assistive technology (AT), like health care and social support services, can play an important part in helping individuals to maintain their independence by improving access and coordination. AT represents any item, piece of equipment, or product system—whether acquired commercially off the shelf, modified, or customized—that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities.

AT can be as simple as a walker to make moving around easier or an amplification device to make sounds easier to hear (for example, talking on the telephone or watching television). It could also include a magnifying glass that helps someone who has poor vision read the newspaper, or a small motor scooter that makes it possible to travel over distances that are too far to walk. In short, anything that helps the elderly and people with disabilities continue to participate in daily activities is considered AT.

AT services also include things like home modification, such as architectural changes and permanent installation of equipment. Architectural changes can include adding ramps and other structures to enter, move about in, or exit the home; widening doorways; retrofitting a bathroom; and lowering countertops and making other modifications to an eating area or kitchen.

Other examples of AT include large-screen computer monitors and remote control devices to operate lamps, radios, and other appliances. AT devices can assist most people—of all ages—to be more functional and independent; they can make the difference between dependence and independence.

The Assistive Technology Act (ATA) of 1998, reauthorized with amendments in 2004, is a federal program that acknowledges and addresses the benefits of providing AT to enable individuals with disabilities to participate in society.

The ATA has three main purposes: to sustain and strengthen the capacity of states to address the AT needs of people with disabilities; to support investment in technology across federal agencies; and to support microloan programs for the purchase of AT devices or services.

For the elderly and individuals with disabilities, AT may make the difference between being able to live independently and having to get long-term nursing or home health care. AT for both target groups is critical to the ability to perform simple ADLs, such as bathing and going to the bathroom, as well as more complex tasks, such as using a computer.

According to the executive summary from the NCD report Federal Policy Barriers to Assistive Technology, individuals of all ages can benefit from AT; however, the benefit for individuals with disabilities “changes the most ordinary of daily activities from impossible to possible. In an ideal climate, no person with a disability should be denied the opportunity to obtain assistive technology and transfer its inherent potential into viable, life-fulfilling endeavors.” Furthermore, in its concluding remarks, the NCD report states that “it is clear that the current patchwork of federal policies has barriers and gaps, leaving many people with disabilities without the benefits of assistive technology.”

Currently, no single private insurance plan or public program will pay for all types of AT; however, Medicare will cover up to a percentage of the cost of AT for items that are traditionally considered “medical and/or medically needy.” However, the need for LTC often extends well beyond the “medically needy” period; therefore, these LTSS would not be covered. Some state-run Medicaid programs may cover AT, and seniors eligible to receive veterans benefits may be able to purchase needed AT through this program.

In 2000, money was appropriated for Title III of the Assistive Technology Act of 1998 (P.L. 105-394) authorizing the Alternative Financing Program (AFP), which is designed to assist states in establishing or maintaining alternative financing projects to increase access to AT for individuals with disabilities. This program allows individuals with disabilities and their family members to access a funding alternative to public assistance programs to purchase AT devices and services.

Existing funding sources for the acquisition of AT devices and services do not meet the needs of all individuals with disabilities of all ages. These individuals may encounter barriers to obtaining AT devices because they either do not quality for services from these systems or are unable to obtain payment for their particular piece of equipment. Some states have attempted to reduce or eliminate these barriers through the establishment of an AFP. Unfortunately, these programs are underfunded and not every state has one. According to the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) Alternative Financing Technical Assistance Project, FY 2003 grantees only include 23 states and three territories.

Caregiver Support

While some federal and state programs exist to provide LTSS to the elderly and individuals with disabilities, most long-term support is provided in the United States by family members or other informal caregivers. These caregivers include spouses, adult children, and other relatives or friends.

The HHS report Delivering on the Promise states that recent studies confirm that the majority of direct care (about 64 percent) to people with disabilities is provided by families, friends, and neighbors. This same report cites that 95 percent of the elderly who need assistance have family members involved in their care. This report concurs with other studies that state that these caregivers receive little, if any, direct assistance and often “face tremendous financial and emotional pressures.” Finally, the inadequacy of caregiver supports, such as respite care, “poses significant challenges to community integration for individuals with disabilities and their families.” Evidence does suggest that the provision of supportive services “can diminish caregiver burden, permit caregivers to remain in the workforce, and enable people with disabilities [this can also apply to the elderly] to remain in community settings.”

It is clear, then, that because caregivers play such an important role, services that sustain a caregiver’s role and maintain his or her emotional and physical health are an important component of any HCBS system. Respite care is one program option that may provide the support needs that caregivers require. Respite care represents “short-term supervision, assistance, and care provided due to the temporary absence or need for relief of recipient’s primary caregivers. This may include overnight, in-home or out-of-home services.”

The National Family Caregiver Support Program (NFCSP), the federal-related program that addresses the quality of life domain of caregiver support, recognizes the role of families in providing LTSS.

The NFCSP calls for all states to work in partnership with Area Agencies on Aging, as well as local community service providers, to provide the following five basic services for family caregivers:

• information to caregivers about available services;
• assistance to caregivers in gaining access to supportive services;
• individual counseling, organization of support groups, and caregiving training to assist caregivers in making decisions and solving problems related to their caregiver roles;
• respite care to enable caregivers to be temporarily relieved from their caregiver responsibilities; and
• supplemental services on a limited basis, to complement the care provided by caregivers.

Respite care is also an allowable service under the HCBS waivers and is included in a majority of state waivers to targeted eligible individuals. Policymakers have traditionally designed Medicaid benefits based upon specific eligibility criteria defining needs of individuals. Both in-home and out-of-home respite services introduce additional complexities from a policy perspective as they require an assessment of family need.

Conclusion

Changing demands and expectations of individuals with disabilities and families continue to pressure states to reevaluate their approach to deliver consumer-responsive services and supports. Regardless of the identified quality-of-life domain and analysis of the current menu of federally supported services, there was a lack of choices for the targeted audience to effectively respond to growing demand. There is a level of complexity that leaves consumers and professionals bewildered by the rules and procedures to determine eligibility for specific supports and services. States are developing client assessment instruments to assess a person’s ability to perform ADLs (eating, bathing, dressing, mobility, and toileting); cognitive and emotional status; social, housing, and environmental circumstances; and nutrition and family/friend support networks. Several states also use this instrument to determine qualifications for (and to help a client choose from) a menu of program options, including Medicaid waiver and state plan services, state-funded services, and Social Services Block Grant programs.

States also reported efforts to make their delivery systems more efficient and user friendly by establishing single-entry-point systems or no-wrong-door systems to help eliminate the confusion consumers have about choices for LTSS.

Thirty-one states and the District of Columbia have implemented single-entry-point systems, which combine information and referral, client assessment, eligibility determination, care plan development, authorization, and quality assurance in one entity at the local level. Some of these systems also coordinate with the client’s physician or hospital discharge planner to facilitate movement among services and settings.

These new state efforts build upon a no-wrong-door philosophy. Regardless of which agency one may access to seek assistance, that agency is prepared to provide information and connect the individual to needed services and supports. Despite these efforts at systems reform, at a community level, there remains great confusion among consumers and government agencies about who should supply which services, whether some services even exist, and who may be eligible. As one commenter explained before the Federal Commission on Affordable Housing and Health Needs for Seniors in the 21st Century, “The current ‘crazy-quilt’ tapestry of services and shelter options make it difficult to fully grasp their complexities, let alone try to access them.”

Part VIII

Pushing Tugboats

An overview of promising practices that are moving the current system toward reform.

Many state demonstration projects for LTC, which are funded in part by federal and private foundation funds, are responsible for the current innovations occurring in states for people with disabilities and senior Americans. Initiatives such as the Real Choice Systems Change (RCSC) grants from CMS are facilitating demonstrations and compliance with Olmstead, greater alliance among the aging and disability communities, and a “lifespan” approach to policy change. Cash and Counseling and Independence Plus consumer-directed care and caregiving programs that allow greater autonomy for people with disabilities (of any age) to direct the hire and choice of personal caregivers, single-point-of-entry programs to create more effective access to services, and affordable assisted living and housing options for low-income seniors (such as NCB Development Corporation’s and the Robert Wood Johnson Foundation’s Coming Home Program) are all pushing forward the possibilities of new thinking.

As the second Administration of President George W. Bush begins to unveil its priorities, multiple demonstration initiatives launched in the first term continue to support state efforts to expand consumer choices to live independently at home and in community settings coordinated with needed services. Appendix 1.C highlights four initiatives that are the “tugboats” pushing forward state changes in service delivery, financing, administration, consumer direction, and quality oversight.

Cash and Counseling Demonstrations

The Cash and Counseling Demonstrations are offering states the opportunity to experiment and innovate with cost-effective choices between institutional and community-based systems.

The Cash and Counseling Demonstrations jointly funded by the AOA and the Office of Planning and Evaluation at HHS builds on an initial partnership that began in 1996 with the Robert Wood Johnson Foundation to pilot and evaluate consumer-directed models for long-term supports in three states: Arkansas, Florida, and New Jersey (see Appendix 1.D). Under these demonstrations, each state provided beneficiaries with disabilities with a flexible monthly allowance to pay for personal care services according to a budget developed by the individual and approved by the state. The individual hired, supervised, and managed the services provided by direct care workers that include family members. Appendix 1.D describes the primary features of each state’s demonstrations.

Based on a comparison with a control group of individuals who received services through a traditional agency-based provider, participants in the demonstration (1) were more satisfied with the services they received; (2) reported a higher quality of life; (3) had fewer unmet needs for personal care; (4) received more paid care (especially adults under age 65); and (5) did not have more adverse events or health problems.

Based on preliminary positive findings, HHS awarded on a competitive basis new Cash and Counseling Demonstration projects in 11 states in October 2004.

The Cash and Counseling Demonstrations are not without criticism from some members of the disability community. In testimony before the House Energy and Commerce Committee, Bob Williams, co-director of Advancing Independence—a forum that promotes responsible changes to Medicare and Medicaid needed to enhance the health and independence of Americans with disabilities of all ages—articulated a number of specific concerns, including the following:

• The notion that self-directed individual budgets is an approach that everyone can or wants to use: It might not work well for someone without a natural support network to turn to that can help manage the relationships with service providers and resulting costs.
• The methods for calculating individual budgets must be fair and reflect changing levels of need over time.
• The need for consumer education and individual assistance in assessment of needs, the creation and management of an individual budget, and the management of service provider relationships.

Establishment of Aging and Disability Resource Centers

During the past two years, FY 2003 and FY 2004, CMS teamed up with the AOA to create one-stop Aging and Disability Resource Centers (ADRCs) to assist individuals and families learn about and access LTSS. CMS and AOA funded on a competitive basis projects in 23 states to design, pilot, and evaluate a more coordinated approach to LTSS through a single point of entry. The pilot projects are now building on the earlier experience that began in the late 1990s in Wisconsin. The centers in Wisconsin serve as clearinghouses for information about LTC and LTSS options and eligibility. As an information clearinghouse, the ADRC offers advice and assistance to individuals with disabilities across the age spectrum as well as to physicians, hospital discharge planners, and other professionals who work with older people or people with disabilities. Services offered through the single entry point can be grouped into six major areas:

• Information and Assistance. Provide information to the general public about services, resources, and programs in areas such as disability and LTC-related services and living arrangements, health and behavioral health, adult protective services, employment and training for people with disabilities, home maintenance, nutrition, and family care. Resource center staff will provide help to connect people with those services and to also apply for SSI, Food Stamps, and Medicaid as needed.
• LTC Options Counseling. Offer consultation and advice about the options available to meet an individual’s LTC needs. This consultation will include discussion of the factors to consider when making LTC decisions. Resource centers will offer pre-admission consultation to all individuals with LTC needs entering nursing facilities, community-based residential facilities, adult family homes, and residential care apartment complexes to provide objective information about the cost-effective options available to them. This service is also available to other people with LTC needs who request it. • Benefits Counseling. Provide accurate and current information on private and government benefits and programs. This includes assisting individuals when they run into problems with Medicare, Social Security, or other benefits.
• Emergency Response. The resource center will ensure that people are connected with someone who will respond to urgent situations that might put someone at risk, such as a sudden loss of a caregiver.
• Prevention and Early Intervention. Promote effective prevention efforts to keep people healthy and independent. In collaboration with public and private health and social service partners in the community, the resource center will offer both information and intervention activities that focus on reducing the risk of disabilities. This may include a program to review medications or nutrition, home safety review to prevent falls, or appropriate fitness programs for older people or people with disabilities.
• Access to the Family Care Benefit. For people who request it, resource centers will administer the LTC Functional Screen to assess the individual’s level of need for services and eligibility for the Family Care benefit. The Wisconsin Family Care benefit combines HCBS waiver funds with non-state waiver-only funds. Once the individual’s level of need is determined, the resource center will provide advice about the options available to him or her: to enroll in Family Care or a different case management system (if available), to stay in the Medicaid fee-for-service system (if eligible), or to privately pay for services.

It is too early to determine the impact of the ADRC demonstrations on the target populations. AOA and CMS will evaluate whether the Resource Centers increase informed decision making and consumer satisfaction with access to needed LTSS in the most integrated setting. Over a three-year period, each of the pilot states is expected to have at least one operating center that demonstrates improvements in the state’s ability to manage public resources, monitor program quality and costs, and improve assessment of need and effective coordination of services to limit unnecessary use of high-cost options, including nursing facilities.

Real Choice Systems Change Grants

As part of the President’s New Freedom Initiative (NFI), funds competitively awarded to states during the past four years are intended to be catalysts for systems change to enable people of all ages with a disability to (1) live in the most integrated community setting suited to their needs; (2) have meaningful choices about their living arrangements; and (3) exercise more control over the services they receive. The four rounds of competition have challenged states to focus on specific areas of intervention to help rebalance funding toward expanded community choices, improve consumer participation and direction, monitor quality, and build better links between housing and services. CMS has awarded more than 200 grants and over $200 million, with the typical grant period extending for three years and the majority of states having at least one award. Findings from the Second Annual Report on Grantee Activities include relevant activities that are laying the foundation for LTSS reform. In the area of consumer direction, grantees in 41 states are incorporating principles of consumer direction in service delivery through changes in administrative rules and regulations, and training and education for consumers, families, and providers. Grantees in 22 states have successfully transitioned a total of 1,214 individuals with disabilities from institutional to community settings. The state budgeting and reimbursement grantees in 38 states are developing changes to their long-term support systems that adapt individualized budgeting, strategies to allow dollars to follow a person from institutional settings to the community, and new payment rates and reimbursement methods. The workforce recruitment and quality grantees in 39 states have initiatives to increase wages and benefits, have training to improve skills and development of career ladders, and are testing new recruitment strategies. The quality assurance grantees in 25 states are implementing initiatives to redefine quality measures, adding a consumer focus to monitoring activities, and developing data systems for quality monitoring. Appendix 1.E provides an overview of all 50 states with initiatives to improve access to LTSS.

The current findings of the Research Triangle Institute Report for CMS recognize the limitations of the data analyzed, which primarily comes from grantee self-reporting. As grantees continue to design and implement multiple systems change strategies made possible by federal RCSC funding during the next four years, new understanding and knowledge will become available to shape future decisions about the structure and design of consumer-responsive LTSS. An additional new round of competitive funding for states in the summer of 2005 will invite states to propose further activities to support comprehensive systems reform.

Independence Plus Initiative

Independence Plus was first announced in May 2002 to encourage individual or family direction of supports and services that keep people in the community through the development and direction of individualized budgets. In August 2004, California became the sixth state approved by CMS under the Independence Plus program. It is expected to benefit more than 60,000 Californians with disabilities who will be allowed to direct their own personal care services rather than have their care designed by a home health agency. Under the Independence Plus waiver, consumers and families will be involved in planning all aspects of service delivery of personal assistance services, including but not limited to the hiring, direction, and appraisal of service providers. According to Mark McLellan, administrator of CMS, “Allowing persons with disabilities and their families to engage in self-direction is a high priority for the Bush Administration and my agency.”

The Independence Plus waiver approach to self-direction is a part of the Bush Administration’s efforts to expand funding resources for LTSS at home and in community settings. State and federal expenditures have increased under HCBS waivers from $13.9 billion in FY 2001 to an estimated $20.7 billion in FY 2004. Between 2001 and 2004, a total of $68.7 billion will be spent to support HCBS waivers.

Each of the eight states with approved Independence Plus waivers has targeted a specific group of eligible individuals with disabilities, such as adults with physical disabilities, individuals with a developmental disability, or individuals with disabilities who are over age 65. The scope of services offered also varies in scope, from personal assistance services in California to personal care services, respite services, and other services needed to maintain independent lives in South Carolina. All participating states will require individualized budgets directed with the assistance of a service coordinator and a fiscal intermediary to help with financial management services. It is too early to evaluate the impact of these design elements on the targeted beneficiaries or the larger state systems.

Conclusion

The combination of these four initiatives provides both financial and philosophical support to a long-term service system that needs to be reframed and transformed with active participation of people with disabilities and their families. In an August 2004 letter to state Medicaid directors, CMS reaffirmed its support for states in the implementation of the principles of Money Follows the Person. CMS explains that the term as follows:

Money Follows the Person refers to a system of flexible financing for long-term services and supports that enables available funds to move with the individual to the most appropriate and preferred setting as the individual’s needs and preferences change. It is a market-based approach that gives individuals more choice over the location and type of services they receive. A system in which Money Follows the Person is also one that can incorporate the philosophy or self-direction and individual control in state policies and programs.

CMS, through these four important initiatives and letters of policy guidance, is pulling the ship forward to allow people to have expanded choice and control of the services and supports they need.

Part IX

Harnessing Favorable Winds

An overview of selected, important legislative and executive branch activities.

Americans with Disabilities Act

The new paradigm of disability maintains that disability is an “interaction between characteristics (e.g., conditions or impairments, functional status or personal and social qualities) of an individual and characteristics of the natural, built, cultural, and social environments.” Favorable winds from the legislative, judicial, and executive branches of the Federal Government in the past 15 years have embraced this new paradigm.

The passage of ADA in 1990 and of its predecessor, the Rehabilitation Act of 1973, reflect a basic shift in public understanding of disability and its meaning in the broader society. Both laws have embraced community integration as an essential core concept, although ADA changed the basic terminology of the Rehabilitation Act and broadened the goal of community integration of people with disabilities to extend to all facets of life, not merely federally assisted programs.

Although much of the public attention and research inquiry regarding ADA has attempted to evaluate the impact of ADA civil rights protections regarding business practices and employment discrimination, the purpose of ADA is far broader. For individuals with disabilities, the ADA preamble states the following:

The nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency.

Title II of ADA, which applies to publicly operated and funded programs and services, provides the framework for community integration and movement away from separate and segregated services. “No qualified individual with a disability shall by reason of such disability, be excluded from participation in or denied the benefits of the services, programs, or activities of a public entity, or be the subject of discrimination by any such entity.” The Department of Justice regulations implementing this provision require that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

According to the preamble to these implementing regulations, the “most integrated setting” means “a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.”

The Olmstead Decision

Nine years later, the favorable winds (or new momentum) for redirecting the ship (or current system of LTC entitlements and other federal funding sources) that could embrace community inclusion and integration principles resulted from the U.S. Supreme Court decision in Olmstead v. L.C. and the interpretation of Title II of ADA. The Olmstead decision affirmed the right of people with disabilities to choose how to live their lives and have greater control over their daily activities in the most integrated settings. The Supreme Court made it clear that it is a violation of ADA for states to discriminate against people with disabilities by providing services in institutions when the individual could be served more appropriately in a community-based setting. The Supreme Court stated that “Unjustified isolation . . . is properly regarded as discrimination based on disability.” It observed that (1) “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life,” and (2) “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”

Under ADA, states are obliged to:

make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity.

The Supreme Court indicated that the test as to whether a modification entails “fundamental alteration” of a program takes into account three factors: the cost of providing services to the individual in the most integrated setting appropriate; the resources available to the state; and how the provision of services affects the ability of the state to meet the needs of others with disabilities.

New Freedom Initiative

Favorable winds picked up greater force with the February 2001 announcement by President George W. Bush of a comprehensive set of proposals called the New Freedom Initiative (NFI) to reduce barriers to full community integration for people with disabilities. The initiative, which is designed to help ensure that Americans with disabilities participate more fully in the life of their communities, states the following:

Americans with disabilities should have every freedom to pursue careers, integrate into the workforce, and participate as full members in the economic marketplace. The New Freedom Initiative will help tear down barriers to the workplace, and help promote full access and integration.

With the NFI, President Bush continued the policy direction started by his father when he signed ADA into law. The initiative continues to support the coordinated activities of the Federal Government and state governments to remove barriers that impede opportunities for community participation. The NFI represents an important step in working to ensure that all Americans with disabilities have the opportunity to learn and develop skills, engage in productive work, and choose where to live and participate in community life.

As part of the NFI, on June 18, 2001, President Bush issued Executive Order 13217, “Community Based Alternatives for Individuals with Disabilities.” The Executive Order directs six federal agencies—including the Departments of Justice, Education, and Labor, as well as HHS, HUD, and the SSA—to evaluate their policies, programs, and regulations to determine whether any should be revised or modified to improve the availability of community-based services for people with disabilities. In that order, the President emphasized that unjustified isolation or segregation of qualified individuals with disabilities in institutions is a form of prohibited discrimination, that the United States is committed to community-based alternatives for individuals with disabilities, and that the United States seeks to ensure that America’s community-based programs effectively foster independence and participation in the community for Americans with disabilities.

The order also charged the Federal Government with providing assistance to states and localities to swiftly implement the Olmstead decision. In response, federal agencies have undertaken several initiatives, including clarifying federal statutes and regulations to assist in the transition of institutionalized individuals into more integrated settings and increasing federal funding for programs and projects aimed at expanding opportunities for community living. In March 2002, the Bush Administration issued its first report, “Delivering on the Promise: A Compilation of Individual Federal Agency Reports of Actions To Eliminate Barriers and Promote Community Integration.” The report identifies more than 400 steps to removing barriers and improving community integration. In 2004, a second progress report was issued that further updates federal agency efforts to promote community integration.

The current Administration, through a series of letters from the CMS to states, has enjoined states to develop and implement plans for less restrictive community options for LTSS that respect consumer choice. The majority of states have both Olmstead plans and cross-agency and stakeholder workgroups to focus on policy development, capacity building, and systems change to steer the ship to promote consumer choice and direction.

Part X

Gathering Clouds

An overview of recent judicial decisions that are challenging long-term services and supports reform efforts.

Despite these favorable winds, the past six years have seen a growing number of court cases concerning access to LTSS at home and in community settings for individuals with disabilities. Individuals with disabilities and their families have grown increasingly impatient at the pace of change. The Supreme Court in its Olmstead decision set a general standard for state behavior in the future. If a state had “a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings and a waiting list moved at a reasonable pace,” then there would be no effective claim for a violation of Title II of ADA. However, the Court did not elaborate what constituted a “reasonable pace” or an “effectively working plan.” The Olmstead “community integration” imperative set a new expectation that a state rebalance its allocation of public resources away from institutional services in nursing facilities to a new mix of HCBS. In the past 40 years, public expenditure of a majority of federal dollars in the Medicaid program has paid for institutional services. Under Medicaid law, there is an entitlement to institutional services that must be included in a state’s Medicaid program. There is no similar entitlement for home and community LTSS. Under Section 1915(c) of the Social Security Act, a state has the option of offering community services as an alternative to institutional eligibility criteria. However, a state may select the services, define their scope, and target a specific group of Medicaid beneficiaries under an HCBS waiver.

For the past 10 years, Medicaid expenditures for home- and community-based LTSS have grown rapidly. Between 1990 and 2003, HCBS waiver expenditures increased more than tenfold to $18.6 billion. In 1990, home and community services represented just over 10 percent of Medicaid long-term service expenditures. In 2003, the share of HCBS funding had grown to 33 percent of Medicaid long-term service funding.

Several significant factors lie behind the storm clouds of increased litigation. Multiple research studies have documented the interest of people with disabilities across the age span to remain in their own homes and communities rather than more restrictive nursing facilities or institutional settings. The majority of states have long waiting lists for multiple HCBS waiver programs, despite the state authority to limit the number of people who participate in the waivers. Federal monitoring and enforcement of the Olmstead “community integration” imperative has yet to become a priority of the Department of Justice Civil Rights Division. No complaint has been filed or settlement reached with a state that challenges “the reasonable pace” of implementation of a state’s plan to expand home and community support and service options.

However, protecting the rights of institutionalized people with disabilities continues to remain a priority for the Civil Rights Division of the Department of Justice. In August 2004, the Justice Department found California in violation of Title II of ADA by failing to provide services in the most integrated setting. The findings resulted from an investigation of Laguna Honda Hospital and Rehabilitation Center in San Francisco. Laguna Honda is one of the largest publicly operated nursing homes in the country, with an average daily census of 1,041 residents. For a nursing home, Laguna Honda serves an unusually high number of residents under the age of 55—approximately 22 percent of the total residents. This segment of the population tripled from 1990 to 2000 and continues to increase.

The Justice Department found evidence that California had failed to ensure that residents had meaningful access to community alternatives. Instead, the investigation concluded that nursing home placements were authorized without requiring assessments to evaluate the appropriateness of HCBS. Individuals in the nursing facility were also not informed later of available community options.

The Justice Department as part of the Laguna Honda investigation did examine the California Olmstead plan to expand community options. The Justice Department concluded the following:

The plan lacks data regarding institutionalized persons with benchmarks and timetables for diverting and transitioning current nursing facility residents into community settings.

Appendix 1.E lays out the Justice Department’s detailed remedial measures to be implemented by California as a response to cited violations of ADA. Remedial measures focus on changes to the assessment process for revised policies and procedures to enable the target group to make fully informed decisions, community capacity to provide services in more integrated environments, and appropriate training for case managers and care coordinators. The proposed remedial measures and approach to the analysis of a state’s Olmstead plan with requirements of benchmarks and timelines offer considerations for future Justice Department intervention on a systematic basis across all states.

In addition to federal action, as of October 2004, legal action on behalf of individuals with disabilities had been filed in 25 states. The challenges to state policies can be grouped into two broad categories:

• Access to Medicaid Home and Community Services. The majority of these cases involve individuals with disabilities who want but cannot obtain HCBS. Challenges relate to both individuals with disabilities on waiting lists for services and individuals with disabilities who are currently in nursing or other LTC facilities.
• Limitations on Availability or HCBS Comparable to Services Offered in More Restrictive Settings. The majority of these cases challenge state policies that affect the scope and quality of Medicaid services in the home or community setting. Several cases have challenged the adequacy of payments or rate setting for coverage of specific community-based services that create an unfavorable balance toward availability in institutional rather than community settings.

Recent decisions are mixed from across the federal circuits as different fact situations and legal theories seek to extend and define the Supreme Court’s Olmstead decision. Three cases illustrate the storm clouds ahead as individuals with disabilities seek to clarify and extend judicial interpretation of the Olmstead “community integration” imperative.

New Types of Medicaid Service Are Not Required for Those Seeking Home Care:

Rodriguez v. City of New York (1999)

In Rodriguez v. City of New York, a class of Medicaid-eligible individuals with mental disabilities sought to have the city include “safety-monitoring” services along with other personal care services in its Medicaid personal care program. The individuals claimed that without safety-monitoring services they would be unable to continue living in their homes and would require institutionalization.

The Second Circuit denied relief, ruling that Olmstead reaffirms that ADA does not require a state to offer a new type of Medicaid service. The court relied on a footnote in Olmstead, which provided that “States must adhere to ADA’s nondiscrimination requirement with regard to the services they in fact provide.” Plaintiffs were requesting new services, as New York does not provide safety monitoring to individuals with physical or mental disabilities.

Notably, however, nothing in this footnote or in the court’s discussion of the fundamental alteration defense states that new services would never be required to comply with ADA. In fact, the court’s discussion of the defense makes clear that the only factors to be considered in determining what constitutes a fundamental alteration are the cost of providing integrated services, the resources available, and the needs of others. The language cited in Rodriguez appears simply to reflect the court’s clarification that ADA does not create an entitlement to a specific “standard of care,” but instead requires that once a state chooses to provide services, it must not discriminate by providing those services in an unnecessarily segregated setting.

Institutionalization Is Not a Prerequisite for Individuals to Be Covered by Title II: Reducing Benefits to Those Outside of Institutional Settings While Maintaining Benefits to Those in Institutional Settings: Fisher v. Oklahoma Health Care Authority (2003)

In Fisher v. Oklahoma Health Care Authority, the Tenth Circuit was presented with the question of whether institutionalization is a prerequisite for the application of Olmstead. Here, the Tenth Circuit interpreted Olmstead to allow people with disabilities who, by reason of a change in state policy, stand imperiled with segregation to challenge that state policy under ADA’s integration regulation without first submitting to institutionalization. The Fisher holding’s importance to the greater community of people with disabilities cannot be stressed enough. After Fisher, individuals with disabilities living in community settings were protected from state efforts to institutionalize or, in some cases, reinstitutionalize them. The case prohibits a state from presenting individuals with a Hobson’s choice between remaining in the community under dangerous constraints or entering state-supported institutions to gain access to needed services.

Oklahoma, through the Oklahoma Health Care Authority (OHCA), provided prescription drug benefits to Advantage Program participants in the community as well as residents in institutional settings. In September 2002, OHCA notified participants that it would impose a cap of five prescriptions per month on Advantage participants, effective October 1, 2002. The state, meanwhile, continued to provide unlimited prescriptions to patients in nursing facilities.

The Tenth Circuit interpreted Olmstead and ADA’s integration regulation to cover those living in community settings. To act the other way would present Medicaid recipients with another choice. They could choose to live in the community but accept benefits that were not comparable to those with similar conditions living in institutions or they could enter an institution and receive complete care but forgo the benefit of living in the outside community.

Like so many other Olmstead cases, the Tenth Circuit also explored the “fundamental alteration” language used by the Supreme Court. Oklahoma defended the five-prescription cap in two ways: (1) the HCBS waiver program is optional, and (2) “[g]iven . . . the State financial crisis,” Oklahoma’s move to reduce an optional program rather than eliminate it altogether is reasonable, a fiscal crisis fundamental alteration defense.” The Tenth Circuit expeditiously rejected the first defense, noting that, under Title II of ADA, “a state may not amend optional programs in such a way as to violate the integration mandate.” The Tenth Circuit articulated a boundary to a state’s use of the fundamental alteration defense, noting that the fact that a program is optional does not allow the defense to be successful. Instead, noted the court, the fact that a program is optional and subject to state-proposed changes does not automatically constitute a fundamental alteration in the state’s services and programs and limit a state’s liability under Title II of ADA.

While not rejecting the fiscal crisis fundamental alteration defense, the Tenth Circuit stated that courts will scrutinize state actions that impede integration rather than deferring to reasonable state judgments. “The fact that Oklahoma has a fiscal problem, by itself, does not lead to an automatic conclusion that preservation of unlimited medically necessary prescription benefits for participants in the Advantage program will result in a fundamental alteration.” Fisher further clarifies the lines initially drawn by the Ninth Circuit in Townsend by defining that “fiscal decisions” does not mean the courts will defer to state judgments any time the state acts and defends its action by asserting fiscal crisis.

Access to Quality Care in Community Settings: Ball v. Biedess (2004)

In Ball v. Biedess, Medicaid recipients receiving home-based care alleged that the Arizona Health Care Cost Containment System (AHCCCS) was supplying an insufficient number of home care workers for HCBS beneficiaries. The plaintiffs charged that under the federal Medicaid Law and ADA, the AHCCCS administration is required to make home and personal attendant services available in a scope and amount necessary to allow individuals receiving Medicaid services to live in the community. The failure to provide an adequate number of home care workers threatened to force these individuals, in their desire for adequate medical care, into nursing facilities.

The District Court ruled that the AHCCCS program failed to ensure that recipients of HCBS received the prescribed services. The court ordered AHCCCS to make extensive reforms to ensure that it “provide[s] each individual who qualifies for its services with those services for which the individual qualifies without gaps in service.”

The court, citing the public health regulations, stated that agencies must make payments to home and personal attendant service workers that are sufficient to “to enlist enough providers so that services under the plan are available to recipients at least to the extent that those services are available to the general population.” AHCCCS, the court ordered, must establish payment rates and enlist a sufficient number of providers to ensure that Medicaid recipients who are qualified to receive community-based care receive quality of care and have access to such care.

The ruling, like that in Fisher, represents a victory for Medicaid recipients in community-based settings. The courts are consistently prohibiting states from presenting those in community-based care settings with a Hobson’s choice of remaining in the community with limited services or receiving a full array of supports and services only in restrictive institutional settings. “Institutionalization is not a viable choice,” wrote the Ball court, “for patients who qualify for AHCCCS programs but do not receive the services to which they are entitled.” Recipients of Medicaid services must not be forced, through state funding decisions or state inaction, to choose between inadequate access to needed LTSS in the community and institutionalization.

Budget problems will continue to serve as the leading defense used by states for slowing the pace of systems reform and rebalancing public expenditures to support a more comprehensive set of choices for individuals with disabilities to live at home and in community settings with needed LTSS.

Current judicial decisions represent a glimpse of divergent views of analysis regarding the future balancing of interests between state discretion in fashioning the LTSS system with public resources and consumer expectations for expanded choices to benefit from services in the least restrictive environment. The slow pace of comprehensive reform continues to bring judicial intervention. Over a dozen states have agreed to court settlements that will accelerate the development of community supports and choices for targeted classes of individuals with disabilities.

Part XI

Recharting the Course

A final checklist of challenges and forecast summary for navigating the rough waters of reform.

Archeologists discovered the tomb of the “boy king” Tutankhamun in Egypt’s romantic Valley of the Kings in 1922, 3,000 years after his death. Some say it was the richest discovery in the history of mankind, uncovering five burial chambers and more than 5,000 works of art. The Untold Story describes the intrigue of professional archeologists and their relentless passion for uncovering antiquity. It is rumored that the major benefactor for the project died shortly after illegally entering one of the burial chambers not yet sanctioned by the Egyptian government. However, there was little information uncovered about Tutankhamen except for a lonely quote found on the last shrine [chamber] surrounding his great sarcophagus, “I have seen yesterday; I know tomorrow.”

Archeologists spent their whole careers digging for the tomb of Tutankhamun and, in the end, the prize was the world’s grandest collection of rare objects of art. The King Tut exhibit was shown around the world and eventually ended up in an Egyptian museum, where deterioration rapidly set in due to inadequate preservation. The significance of the find was major in the world of archeology but left many unanswered questions as to who the 15-year-old boy-king was as a person and a ruler.

Concluding Thoughts

As the nation drags anchor and moves forward on this voyage that will rechart the delivery and financing of LTSS, it is important to think about what archeologists interested in aging and disability might find 1,000 years from now if they were to visit the first decade of the 21st century. What policies would they find that reflected how a country only a few hundred years old responded to its growing population with disabilities and extended life span? What values and beliefs would these policies reveal about the democracy?

The current crisis in health care and LTSS is at a crossroads. How Americans respond to the critical issues facing millions of its seniors and young people with disabilities will determine the health of the nation for generations to come. The picture presented today identifies little public or political interest in putting these issues onto the national agenda. It is, however, first on the agenda of every state budget committee. At 22 percent of the budget, the rising costs of health care and LTSS are no longer sustainable. This fiscal crisis will cause rough waters for the LTSS voyage and for the identified captain and crew.

This review found that the current federal experience provides a complex picture over time of response to a growing segment of the population in need of LTSS to maintain their dignity and independence in daily living. Depending on where you live, your age, your economic status, and the nature of your disability, you will face different options and levels of response to home- and community-based needs.

There is no single federal program or federal agency charged with responsibility for management, funding, and oversight of LTSS at home and in the community. There is no single entry point at a community level for individuals with disabilities and seniors to learn about and access service and support options. There are multiple federal programs with varying policy objectives that embrace the values of consumer choice and independence in daily living, but there is no comprehensive, integrated delivery system. There are also differences in service philosophy and administration between programs for individuals with disabilities under age 65 and those for seniors.

The tugboats are full of young people and seniors with disabilities who continue to push forward with the need for consumer direction and control and more responsibility for managing support options and caregivers. There remains significant disagreement about the elements of a comprehensive LTSS system, the relationship between the medical model as the dominant paradigm versus a social empowerment model of consumer choice and control, and how to balance family caregiving with public responsibility for long-term supports.

This chapter on current federal experience provides a rationale for rethinking current public policy regarding LTSS. Disability is a natural part of the human experience over time. At some point, many Americans will need assistance with such activities as dressing, bathing, eating, and daily living. The current system of entitlement provides maximum assistance with daily living and personal assistance in the most restrictive environments, skilled nursing facilities. Integrated delivery systems that build on a presumption of support at home and in the community must be built through the design and development of consistent policy goals across all federal agencies. The captains are left with a final checklist of challenges and a brief summary of forecasts for navigating the rough waters of reform.

Checklist of Challenges

• Financial. Runaway costs of state Medicaid spending and impact on people and children with disabilities.

• Policy. Lack of coherent public policy that people with disabilities should have access to LTSS to maintain lifestyle and independence.

• Political. Unwillingness of Congress to put the issue of LTSS on the national agenda, although the issue is very high on state agendas because of rising costs.

• Public Perception. Low interest in and understanding of the urgency and importance to all Americans of the current growing crisis in the need for LTSS.

• Federal System. Fragmented across agencies, with no single agency managing or coordinating reform.

• State Systems. Fragmented delivery systems with uneven access and service provisions depending on the state’s fiscal health.

• Workforce. Role of government in addressing the challenges of the current workforce of caregivers, both formal and informal.

• Legislation. Current system of LTC is unbalanced toward institutional and restrictive environments.

• Demographic Shifts. The impact of extended life expectancies, decreased fertility rates, and more women in the workforce, along with rising disability rates for those age 65 and under.

• Needs. More consumer direction and control and understanding of what LTSS are needed for people across disabilities, gender, age, and ethnic background.

Forecast Summary

Forecast: Ask the Hard Questions

William Scanlon writes that most exercises in forecasting visions for LTSS policy do not address the following hard questions about goals and outcomes: What services should be guaranteed to individuals unable to provide for themselves? What protections from catastrophic loss, financial or otherwise, should be afforded? Most important, who will pay for these protections?

Forecast: Don’t Forget the Beneficiaries

Robert Schalock suggests a three-part test to evaluate future policy development that focuses on the following:

• The individual beneficiary and the impact of any changes in eligibility, funding, and services delivery on their lives related to independence, productivity, community, and personal well-being.
• The service delivery level, and any changes in service delivery patterns and the conversion of the system away from programs and toward individuals that allows for personal control and individual choice and is truly based on the type and intensity of individualized needed supports.
• The societal level and its ability to integrate disability policy, funding, and outcomes-based evaluation with equality of opportunity, full participation, independent living, and economic self-sufficiency.

Forecast: Prepare to Navigate Choppy Waters and Difficult Storms

The 2004 NCD report Consumer-Directed Health Care: How Well Does It Work? identified five factors that stand in the way of change in policy and practice to expand consumer choice and participation in an LTSS system for the future:

• Beware of the institutional bias of Medicaid in the use of HCBS waivers that require states to demonstrate cost neutrality with a comparison of costs to institutional care.
• Expect to find an underpaid, shrinking labor force that is unable to keep up with growing demand.
• Recognize that the increasing share of total budget costs now averages 22 percent of state budgets.
• Look out for consumer and caregiver education and skill-building programs needed by beneficiaries to develop the skills to set goals and take responsibility for managing budgets and service delivery.
• Do not expect to see common definitions in research that has effectively evaluated outcome and cost data for consumer-directed services.

Forecast: Look for the Favorable Winds

Positive forces for change began with the passage of ADA in 1990, followed by the Supreme Court’s Olmstead decision in 1999 and the subsequent Administration actions from 2000 to the present. These forces provide a platform to support policy and program changes for a long-term support system that embraces consumer choice to live in the least restrictive environment at home and benefit from community participation. Look also for new court decisions pushing the states to accelerate systems change.

Forecast: Keep the Deliberations Fair

Estes and Linkins suggest that the approach to LTSS in the United States for beneficiaries and family caregivers must be one that is “socially just, that promotes gender, ethnic, intergenerational, and class justice through a system that is accessible, affordable, and universal.”

Words for Safe Travel

Rheinhold Niebuhr, a Protestant theologian, wrote about the “social gospel” movement in the early part of the 20th century and reminded Americans that designing just policy cannot be done from some esoteric ethic that may or may not apply to a certain group of people and that Americans must first and foremost agree on what it means to be human and what it means to be just.

Appendix 1.A

Comparing Caregiver Characteristics by Age of Recipient

Recipients 18–49 Recipients 50 or Older

Average recipient age 33 75

Relationship Adult child, sibling, or nonrelative Mother, grandmother, or father

Problems/Illnesses Mental illness, depression, or emotional problems financial problems Aging, Alzheimer’s, cancer, diabetes, heart disease, mobility, blindness

Average caregiver age 41 47

Demographics Working Retired, married

Support Primary caregivers feel financial hardships Receive more funding

Provide three or more activities of daily living

Base: 1,247 caregivers in the United States.

Source: Caregiving in the United States, National Alliance for Caregiving, and American Association of Retired Persons, 2004.

Appendix 1.B

Demographic Profile of Caregivers by Age of Recipient

Total Caregivers of recipients 18–49 Caregivers of recipients 50+

Total 100% 20% 79%

Gender

Male 39% 44% 37%

Female 61 56 63

Race of Caregiver

White 73% 69% 74%

African American 12 16 11

Hispanic 10 11 10

Asian American 4 4 4

Age of Caregiver

Under 35 years old 26% 42% 22%

35–49 32 30 33

50–64 30 19 32

65 or older 13 9 13

Mean (years) 46 yrs 41 yrs 47 yrs

Marital status

Married/living with partner 62% 53% 63%

Single, never married 18 22 17

Separated/divorced 14 17 14

Widowed 6 7 6

Education attainment

High school or less 34% 41% 33%

Some college 27 3 26

Technical school 3 2 3

College graduate 22 18 23

Graduate school + 13 8 14

Current employment

Employed full time 48% 54% 47%

Employed part time 11 12 10

Not employed 41 33 43

Household income

<$30K 25% 32% 22%

$30K–$50K 26 27 25

$50K–$75K 18 19 18

$75K–$100K 9 9 9

$100K + 15 7 17

Source: National Alliance for Caregiving and AARP. (2004) Caregiving in the U.S. Available at: www.caregiving.org/04finalreport.pdf.

Appendix 1.C

Federal Demonstrations

Long-Term Services and Support: Reform Strategies

Initiative Funders Focus Evaluation

Cash and Counseling Administration on Aging,

Robert Wood Johnson Foundation,

Office of Planning and Evaluation, and

APSE at the Department of Health and Human Services

$25 million

2004–2006

www.cashandcounseling.org Individuals of various ages and disabilities direct their own supportive services and hire their own care managers with an individualized budget.

Eleven new states funded in October 2004 that follow pilots in Florida, New Jersey, and Arkansas.

New states are Alabama, Iowa, Kentucky, Michigan, Minnesota, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington, and West Virginia. Independent evaluation will study costs, consumer satisfaction, access to home-based services, and quality-of-life changes.

Aging and Disability Resource Centers (ADRCs) Administration on Aging and

Centers for Medicare and Medicaid Services (CMS)

$19 million

2003–2006

www.adrc.org Create a single, coordinated system of information and access for all people seeking long-term support to enhance individual choice and informed decision making.

The 23 states funded are Louisiana, Maine, Maryland, Massachusetts, Minnesota, Montana, New Hampshire, New Jersey, Pennsylvania, Rhode Island, South Carolina, West Virginia, Arkansas, Alaska, California, Florida, Georgia, Illinois, Indiana, Iowa, New Mexico, North Carolina, and Wisconsin. Will evaluate whether the Resource Centers increase informed decision making, meaningful choice, and access to long-term services and supports in the most integrated setting.

Real Choice Systems Change Grants CMS

$200 million

2001–2007

www.hcbs.org States are funded to build infrastructure and pursue policy changes that result in “effective and enduring improvements in community long-term support systems.” There have been four rounds of funding that states have competed for that target specific theme areas, such as integrating long-term supports with accessible affordable housing, improving and expanding personal assistance services that are consumer directed, and enhancing quality management systems.

Other grants focus on comprehensive system reform efforts. Focus on sustainable system changes concerning the approach to service delivery, exercise of meaningful choices with expanded support options to live in the most integrated setting appropriate, rebalancing of funding to expand community living preferences and priorities, and nursing home diversion and transition.

All states have one or more grants.

Independence Plus

Waiver Demonstration CMS

www.cms.hhs.gov/

independenceplus

States are funded through the HCBS waiver authority to offer individualized budgets and consumer self-direction.

Nine states have been approved:

California, New Hampshire, Louisiana, South Carolina, Maryland, Florida, North Carolina, Connecticut, and Delaware Focus on cost savings, consumer satisfaction and outcomes, and other benefits of consumer direction.

Source: Author’s compilation.

Appendix 1.D

Overview of Cash and Counseling Demonstrations

Arkansas New Jersey Florida

State program name Independent Choices Personal Preference Consumer-Directed Care

Implementation date December 1998 November 1999 May 2000

Authority for personal assistance services Medicaid state plan: personal care option Medicaid state plan: personal care option Section 1915(c) HCBS waivers

Populations served Elderly and adults with a physical disability Elderly and adults with a physical disability Elderly, adults with a physical disability, and children with a developmental disability

Territory covered Statewide Statewide Central and South Florida: Elderly and adults with a physical disability

Statewide: Children and adults with developmental disabilities

Average monthly cash allotment $350 $1,300 $300

Formula for determining cash allotment A rate corresponding to an individual’s assessed number of hours of personal care reduced between 0% and 30% to account for actual number of hours service used versus projected use. Amount based on the numbers of hours in the individual’s previous personal care assessment multiplied by the state’s hourly rates for personal care. Individual’s historic Medicaid HCBS waiver expenditures reduced between 8% and 17% to account for actual use of services versus projected use.

Final caseload (for evaluation) 2,008 people 1,762 people 2,820 people

Source: University of Maryland, Center on Aging, Cash and Counseling At-a-Glance, at www.hhp.umd.edu/AGING/CCDemo/ataglance.html, accessed June 2005.

Appendix 1.E

50 States, The District of Columbiia, and

U.S. Territories with Initiatives to Improve Access to

Long-Term Care Services

State Integrated LTC Systems Streamlined Eligibility Determinations Expanded Eligibility Nursing Facility Resident Transition* Informed Consumer Choice Other**

Alabama x x x x

Alaska x x x x

Arkansas x x x x x

California x x x

Colorado x x x x x

Connecticut x x x

Delaware x x x x x

District of Columbia x x x x x x

Florida x x x x

Georgia x x x

Guam x x x x

Hawaii x x x x

Idaho x x x x x

Illinois x x x x x

Indiana x x x x

Iowa x x x

Kansas x x x

Kentucky x x x

Louisiana x x x x x x

Maine x

Maryland x x

Massachusetts x x x x x x

Michigan x x x x x

Minnesota x x x x

Mississippi x x

Missouri x x x x x

Montana x x

Nebraska x x x

Nevada x x x

New Hampshire x x x x x

New Jersey x x x

New York x

North Carolina x x x x

North Dakota x

No. Mariana Islands x x

Ohio x x x

Oklahoma x x x x x

Oregon x

Pennsylvania x x x x x x

Rhode Island x x x x

South Carolina x x x x

Tennessee x x x x x

Texas x x x x

Utah x x x x

Vermont x x x x x x

Virginia x x

Washington x x x x x

West Virginia x x x x x

Wisconsin x x x x x x

Wyoming x x x x x

Total 32 20 16 43 45 38

*NFT transition and diversion activities encompass a range of activities, including increasing housing availability and accessibility, developing peer support networks, and developing outreach materials and conducting outreach.

**This category includes the areas of community education, housing, home modifications, assistive technology, and transportation.

Source: HCBS, www.hcbs.org, accessed June 2005.

Appendix 1.F

Federal Tables

Table 1. Federal Health Care Programs

Domains and Programs Year Authorized Responsible Agency Eligibility Scope Of Service Consumer Directed Consumer-Perspective Quality State/ Local Partners Financing Mechanism Innovation Utilization: Trends Over Time Universal Design

Medicare Part A Social Security Act Amendments of 1965, Title XVIII, Part A Centers for Medicare and Medicaid Services (CMS) Age, qualified disability Hospital insurance for elderly and disabled who qualify, short-term acute care, skilled nursing care, home health, hospice care. No No Yes Direct Payments No FY 03

$150,970,000,000

FY 04 est

$166,182,000,000

FY 05 est

$181,350,000,000

2003 enrollees

40,884,000

2004 est enrollees

41,607,000

2005 est enrollees

42,280,000 No

Medicare Part B Social Security Act Amendments of 1965, Title XVIII, Part B CMS Age, qualified disability Supplemental health insurance, home health, outpatient rehabilitation services, physical, speech and occupational therapy. Durable medical equipment at home. Varies Varies Yes Direct Payments No FY 03

$121,628,633,000

FY 04 est

$127,976,000,000

FY 05 est

$140,705,000,000

2003 enrollees

38,369,000

2004 est enrollees

38,928,000

2005 est enrollees

39,477,000 No

Medicare Part D Social Security Act Amendments of 2003 CMS Age, qualified disability Prescription drugs. No No No Direct benefit No Estimates of costs exceed $100 billion N/A

Medicaid Social Security Act, Title XIX, 1965 CMS Means/

disability Skilled nursing, home health, case management, personal care, rehabilitation. Varies Mix Yes Federal/ state cost share: entitlement No FY 03

$169,105,405,000

FY 04 est

$177,232,410,000

FY 05 est

$183,302,865,000

2003 enrollees

41,900,000

2004 est enrollees

42,900,000

2005 est enrollees

43,600,000 No

Source: Catalog of Federal Domestic Assistance. General Services Administration, Office of Governmentwide Policy, Office of Acquisition Policy, Regulatory and Federal Assistance Publication Division. www.cfda.gov, accessed June 2005.

Table 2. Federal Social Support, Personal Assistance Services, and Home Care Programs

Domains And Programs Year Authorized Responsible Agency Eligibility Scope of Service Consumer Directed Consumer-Perspective Quality State/ Local Partners Financing Mechanism Innovation or Systems Change Utilization: Trends Over Time Universal Design

Independent Living State Grants Rehabilitation Act 1973 Title VII Department of Education (DOE), Office of Assistant Secretary for Special Education and Rehabilitative Services Disability Support operation of statewide independent living councils (SILCs) N/A Yes Yes Formula Grants Yes FY 03 $22,151,000 FY 04 est $22,020,000

FY 05 est

$22,020,000

FY 2003

78 designated state units received funds No

Centers for Independent Living Rehabilitation Act 1973 Title VII DOE, Office of Assistant Secretary for Special Education and Rehabilitative Services Disability Establishment and operation of CILs or SILCs Yes Yes Yes Competi-tive Grants Yes FY 03 $69,545,000 FY 04 est $73,563,000

FY 05 est

$73,563,000

Grants support the operation of approximately 320 centers Yes

Special Programs for the Aging Title III, Part B 1965 Administration on Aging (AOA)/Depart-ment of Health and Human Services (HHS) Age (60+) Implementation and coordination of community-based supportive services No Varies Yes Formula Grants Varies FY 03 $355,673,000 FY 04 est

$353,888,665

FY 05 est

357,000,000

FY 2003

56 grants awarded

FYs 2004 and 2005

56 grants anticipated Varies

Senior Companion Program Domestic Volunteer Service Act 1973 Federal Agency Corporation for National and Community Service Senior Companions (60+); adults served (21+); one or more activity of daily living (ADL) limitation and at risk for institutionalization Engaging people (60+) and providing supportive services to disabled adults Varies Yes Yes Matching Grants No FY 03

$45,255,000

FY 04 est

$45,255,000

FY 05 est

$45,548,000 No

Medicaid HCBS Waiver Omnibus Reconciliation Act (OBRA) Section 2176 1981 CMS Means test, state variation medically needy, and waivers specific to a target population (elderly, mental retardation, physical disabilities, brain injury) Respite care, personal care, habilitation, environmental adaptations, assistive technology, service coordination Varies Varies Yes State/ federal cost share Yes FY 02

$16.3 billion

FY 03

$18.6 billion

FY 04

$19 billion Varies

Social Services Block Grant Social Security Act, Title XX, OBRA 1981 Administration for Children and Families, HHS Means tested, low-income individuals and families Grants to states for support of social services programs Varies No Yes Formula Grants No FY 03

$1.7 billion

FY 04 est

$1.7 billion

FY 05 est

$1.7 billion

FY 2003

57 grants awarded

FYs 2004 and 2005 est

57 grants Varies

Source: Catalog of Federal Domestic Assistance. General Services Administration, Office of Governmentwide Policy, Office of Acquisition Policy, Regulatory and Federal Assistance Publication Division. www.cfda.gov, accessed June 2005.