Beyond Olmstead: Community-Based Services for All People with Disabilities

Designs, Budgets, & Preferences

Presenters: Jane Tilly, Dr.P.H., Senior Research Associate, Health Policy Center, Urban Institute, Washington, DC. Lisa Maria B. Alecxih, M.P.H., Vice President, Lewin Group, Falls Church, VA.

Results from a study of the role of Medicaid in State home and community-services systems in Alabama, Indiana, Kentucky, Maryland, Michigan, Washington, and Wisconsin were presented. The study was carried out during the summer and fall of 2000.

Common Features

Common features of case-study States' long-term care systems were:

• Most Medicaid funding for aged or disabled beneficiaries is spent on nursing homes.
• Increasing attention and resources are devoted to home and community services.
• All States use waivers to increase flexibility of Medicaid.
• All States have State-funded programs, most of which are designed to supplement Medicaid.

Administrative Structures

Administrative structures and responsibilities are assigned to different State entities:

• Health departments: States generally rely on local entities and area agencies on aging to manage actual delivery of services.
• Social service departments: These provide services to the younger adults with physical disabilities, however, Indiana and Washington have consolidated administration of their programs for both populations.
• Departments on aging: These typically administer services to the older population under contract with the Medicaid agency.

There are two types of Medicaid eligibility: functional and financial. The criteria differ for Medicaid home health care, personal care, and waiver services:

• Generally, the criteria for home health care require that people have a need for skilled service, sometimes following the Medicare definition for home health care.
• Personal care services are available to people who have limitations in one or more activities of daily living. (i.e., eating, bathing, and dressing).
• States differ in their reliance on medical versus functional criteria for waivers. State-funded programs generally have looser functional and financial eligibility criteria than Medicaid.

Case Management

Caseloads vary among States and among programs within States. The caseloads tend to be higher in States where the beneficiaries are directing their own services. Assessment and service authorization functions may be split from ongoing case management.

The array of services differs among Medicaid options:

• Home health care in most States is patterned after the Medicare benefit.
• Kentucky also offers personal care as part of home health care. Personal care generally consists of help with daily activities.
• Waiver programs are the most flexible in terms of the array of services available from Medicaid. State-funded programs in Indiana, Washington, and Wisconsin offer the most flexible home and community services.

Michigan, Washington, and Wisconsin have used consumer direction extensively. These States serve as fiscal agents for beneficiaries. Other States are experimenting with the concept or have very small programs. In the area of assisted living, States cover assisted living using waivers (Maryland and Washington) or by allowing home health care to be delivered in group residential facilities (Kentucky). Some States have longstanding Medicaid State plan or State supplements to the Federal Supplemental Security Income program coverage in group residential facilities (Michigan).

Cost Containment

At the time interviews were conducted, no State believed their home and community services costs were rising out of control. Some States saw a tradeoff between institutional and non-institutional Medicaid funding (Kentucky, Washington, and Wisconsin). Cost-control mechanisms include:

• Waiting lists.
• Limits on average cost per participant.
• Controls on provider reimbursement rates.

Michigan and Wisconsin relied on local entities to manage prospectively determined budgets; these entities are at some financial risk if they exceed their budgets.

Quality Assurance

Quality assurance is an essential part of home health services delivery; some of the salient facts about approaches to quality assurance are:

• Case managers at the local level play a key role in quality assurance.
• Consumer-directed programs rely on consumers and case managers to assure quality.
• Some States have consumer satisfaction surveys to help determine the effectiveness of home health care delivery (Alabama, Indiana, and Washington).
• Home health agencies are subject to review similar to that of Medicare in most States.
• Home care agencies may not be subject to any licensure or certification (Michigan).
• Most States faced a lack of qualified workers and cited the potential effect on quality and access to services.

Finally, Medicaid plays a major and increasingly important role in the provision of home and community services. States are struggling with the expansion of these services and ensuring their quality in the face of labor shortages. As a result, many aspects of State home and community services are subject to increased scrutiny in the wake of the Supreme Court's Olmstead decision. (e.g., use of waiting lists).

Family Care

Family Care is the name for the redesigned long-term care system currently being piloted in nine Wisconsin counties. The Family Care pilot programs were authorized by the Governor and legislature in order to develop and test models for a comprehensive and flexible long-term care service system that will foster consumers' independence and quality of life, while recognizing the need for interdependence and support. Specific goals of the Family Care initiative are to:

• Give people better choices about where they live and what kinds of services and supports they get to meet their needs.
• Improve access to services.
• Improve quality through a focus on health and social outcomes.
• Create a cost-effective system for the future.

This major redesign of the State's long-term care system has two major organizational components:

• Aging and Disability Resource Centers.
• Care Management Organizations (CMOs).

Aging and Disability Resource Centers

These centers began operating in early 1998 and offer "one-stop shopping" to the general public, with a focus on issues affecting older people, people with disabilities, or their families. These centers are welcoming and convenient places to get information, advice, and access to a wide variety of services. As a clearinghouse of information about long-term care, they also will be available to physicians, hospital discharge planners, or other professionals who work with older people or people with disabilities. Services are provided through the telephone or by visits to an individual's home. Services include:

Information and assistance: Centers provide information to the general public about services, resources, and programs in areas such as:

• Disability and long-term care-related services and living arrangements.
• Health and behavioral health.
• Adult protective services.
• Employment and training for people with disabilities.
• Home maintenance.
• Nutrition.
• Family care.

Center staff provide help to connect people with the appropriate services and also, when needed, to apply for Supplemental Security Income, food stamps, and Medicaid.

Long-term care options counseling: Centers offer consultation and advice about the options available to meet an individual's long-term care needs, including the factors to consider when making long-term care decisions. Centers offer pre-admission consultation and objective information about determining the most cost-effective options available to all individuals with long-term care needs who are considering entering:

• Nursing facilities.
• Community-based residential facilities.
• Adult family homes.
• Residential care apartment complexes.

This service is also available to other people with long-term care needs who request it.

Benefits counseling: Centers 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: Centers ensure thet connection of people 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: Centers 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 Centers offer both information and intervention activities that focus on reducing the risk of disabilities. This may include programs to:

• Review medications or nutrition.
• Review home safety to prevent falls.
• Suggest appropriate fitness programs for older people or for people with disabilities.

Access to the family care benefit: For people who request it, Resource Centers administer the Long-term Care Functional Screen to assess the individual's level of need for services and eligibility for the Family Care benefit. Once the level of a person's need is determined, the Resource Center provides advice about the options available, such as:

• Enrollment in Family Care or a different case management system, if available.
• Staying in the Medicaid fee-for-service system (if eligible).
• Privately paying for services.

If the individual chooses Family Care, the Resource Center will enroll that person in a Care Management Organization (CMO). The level of need determined by the Long-term Care Functional Screen also triggers the monthly payment amount to the CMO for that person.

Currently, Resource Centers are operational in nine counties:

• Fond du Lac.
• La Crosse.
• Milwaukee (serving the elderly population only).
• Portage.
• Richland.
• Kenosha.
• Marathon.
• Trempealeau.
• Jackson.

Benefits Overview

Between 1999 and 2001, five CMO sites began operating:

• Fond du Lac.
• La Crosse.
• Milwaukee (serving the elderly population only).
• Portage.
• Richland.

Except for Milwaukee, which is serving only elders, all the CMOs will serve all three of the Family Care target groups:

• People with physical disabilities.
• People with developmental disabilities.
• Frail elders.

In addition to increasing access to services, a goal of Family Care is to improve the coordination of long-term care services by creating a single flexible benefit that includes specific health services offered by Medicaid, as well as long-term care services in the home, community-based waivers, and the very flexible Community Options Program.

In order to ensure access to services, CMOs develop and manage a comprehensive network of long-term care services and support, either through purchase of service contracts with providers or by direct service provision by CMO employees. CMOs are responsible for ensuring and continually improving the quality of care and services consumers receive. CMOs receive a per person per month payment to manage care for their members, who may be living in their own homes, group living situations, or nursing facilities. Some highlights of the Family Care benefit package are:

People receive services where they live: CMO members receive Family Care services where they live, which may be in their own home or supported apartment, or in alternative residential settings, such as:

• Residential care apartment complexes.
• Community-based residential facilities.
• Adult family homes.
• Nursing homes.
• Intermediate care facilities for people with developmental disabilities.

People receive interdisciplinary case management: Each member has support from an interdisciplinary team that consists of, at a minimum, a social worker/care manager and a registered nurse. Other professionals, as appropriate, also participate as members of the interdisciplinary teams. These teams conduct comprehensive assessments of the member's needs, abilities, preferences, and values, along with the consumer and his or her representative, if any. The assessment looks at areas such as:

• Activities of daily living.
• Physical health.
• Nutrition.
• Autonomy and self-determination.
• Communication.
• Mental health and cognition.

People participate in determining the services they receive: Members or their authorized representatives take an active role with the interdisciplinary team in developing their care plans. CMOs provide support and information to ensure that members are making informed decisions about their needs and the services they receive. Members may also participate in the Self-Directed Supports component of Family Care, in which they have increased control over their long-term care budgets and providers.

Complications with the program included:

• Implementation.
• County-based system complications for the State (several different computer systems, differing levels of management ability).
• Evidence of expanded access, but possible problem of the "woodwork effect."
• Innovative quality assurance and improvement efforts.

Delays in finalizing some of the key aspects of program infrastructure complicated the implementation process:

• Issues of governance and capitated rates caused the pilots to be tentative about implementing parts of the program. This may have caused some pilots to prepare less aggressively for implementation than they would have otherwise.
• Uncertainty around governance issues also caused some of the pilots to delay the development of separate infrastructures for the Resource Center and the CMO.
• Concerns regarding the adequacy of capitated rates caused some counties to delay presenting plans to their boards for approval until the rate-setting process was further along.

Additional Resource

Alecxih LM, Lutzky S, Linkins K, et al. Wisconsin family care implementation process evaluation report. Madison (WI): The Lewin Group;2000 Nov.

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