A Guide to Long-Term Care for State Policy Makers:
Building Community Partnerships for Long-Term Care The thrust of recent federal legislation—especially the Older Americans Act (OAA) Amendments of 2006—is to encourage and support state and local community partnerships to help the elderly and other adults with disabilities to live independently in their homes and communities. The OAA and provisions of the Deficit Reduction Act of 2005 offer the aging network opportunities and incentives to expand choices and control of long-term care (LTC) services and supports and to improve the quality of life for millions of American who need assistance to live full, independent lives. The OAA Amendments reinforce the “Choices for Independence” Initiative of the U.S. Administration on Aging by offering state and local policymakers flexibility and creativity as they craft home and community-based services (HCBS) and supports for diverse populations. By taking advantage of these opportunities, policymakers can help foster the partnerships that already exist throughout the Aging Network of state and local units on aging, tribal organizations, community-based organizations and local volunteers. These partnerships expand the resources available in a community to guide people with disabilities to the services they need. For people who are eligible for Medicaid-funded programs, the community partnerships can provide information about available services and the process for obtaining those services. For low- and moderate-income people who are not eligible for Medicaid-funded programs, other options can be made available. These options include help in planning for LTC needs, support for family caregivers, and strategies for tapping low-cost alternatives, including consumer-directed care models. By self-directing their services, consumers have greater control over the types of services they receive, from whom they receive care (including their own family or friends), and how services should be targeted to their specific needs and circumstances. I. The Deficit Reduction Act Expands Community Support
The Deficit Reduction Act (DRA) of 2005 allows states to offer Medicaid-funded HCBS as a state plan optional benefit rather than through Medicaid waivers.1 The option breaks the previous requirement for waiver eligibility for HCBS that the individual be at risk of institutionalization. Thus, states will be able to offer community-based services to people based on their functional need, not on their need for institutional care. This major change potentially opens community care to many more people, although states can set case- load limits to control the development and growth of the program. States will be able to refine Medicaid eligibility for HCBS and tighten the standard for admission to institutions in the following ways: - Raise the institutional level of need criteria and retain or lower the community level of need, or
- Keep the current institutional level and lower the community standard.
People who are eligible for services will receive an individualized care plan based on an assessment of their needs. They also may be offered the opportunity to direct their own care. In a move to speed up access to HCBS services, the DRA allows state to presume eligibility, which must be verified within 60 days. States will submit an estimate of the number of people who will be served under the state plan option, but if the actual number exceeds that estimate, states may limit the enrollees by establishing a waiting list or revising the level of need criteria without the need for approval from the Centers for Medicare and Medicaid services. II. Aging and Disability Resource Centers Expand Access
The centers are sources of information about the full range of long-term care options, help individuals make informed decisions about their care, provide access to publicly funded LTC options for those who are eligible for such benefits, and help people to plan ahead for their future LTC needs. Some sites provide in-person and telephone assistance, while others offer access through web-based applications and comprehensive databases of community resources. With this wide range of activities and resources, ADRCs are slated to be key components of a revitalized U.S. long-term care system that builds partnerships among all community organizations and agencies. These resource centers will be “visible and trusted” sources to which people can turn for information about all available service and support options, thus reducing the current fragmentation that forces consumers and their families to frustrating searches for help. The Centers for Medicare and Medicaid Services (CMS) and the Administration on Aging launched the Aging and Disability Resource Center (ADRC) program in 2003. By January 2007, 125 ADRC pilot sites were open in 43 states, serving more than 20 percent of the U.S. population. III. The Deficit Reduction Act and the Administration on Aging Promote Choice and Control Both the DRA and the Older Americans Act Amendments support and encourage community level efforts through the Aging Network that will allow older people and other adults with disabilities to have choices about the services and supports they receive and to control the delivery of those services. The DRA offers a state plan benefit for self-directed personal care services without an 1115 or 1915c waiver from CMS. Self-directed personal care services have been provided through home and community-based services and section 1115 demonstration waiver programs in about half the states. Consumers now can create individualized care plans and budgets under the state plan, including self-direction provided by family members (under the DRA Section 6087, Optional Choice of Self-Directed Personal Assistance Services). States also may still choose to incorporate consumer direction into an existing or a new HCBS waiver program. What is Consumer Direction?
Consumer direction allows consumers to assess their own needs and to determine how and from whom they will receive services and supports. They can select the days and times for services to be provided and can hire and manage the workers of their choice. They can manage their own budgets (which are set by the state based on a care plan), determine the wages they will pay, and purchase items— such as assistive technology — that will help them remain independent. | The self-direction model is enhanced through the provision in Title II of the Older American Act Amendments that charges the Administration on Aging with facilitating the provision of HCBS through self-directed models that “…respond to the needs and preference (of consumers) … and provide the option for the individual to direct and control the receipt of support services.” The significance of these two developments for states is the strong federal support for the self-direction model of service delivery and the greater ease offered to states that initiate the model in all their HCBS programs. The federal agencies can provide technical assistance to states that implement this model. Consumer or self direction was given impetus through the Cash and Counseling demonstration programs in three states (Arkansas, Florida and New Jersey) implemented in the late 1990s and early 2000 to compare the consumer-directed model with the traditional agency-directed approach. The program was funded by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services. A series of evaluation reports on the demonstration program indicated high satisfaction rates among beneficiaries and family caregivers. Compared to the control group that received traditional agency services, the consumer-directed participants expressed greater satisfaction with the services they received, reported a higher quality of life, and indicated they received more care. Although program designers thought the demonstration program might provide a less costly approach to services through reductions in administrative costs and more efficient use of funds, total Medicaid costs after two years were 8 percent to 12 percent higher in Florida and New Jersey. Costs did not differ significantly between the two groups of beneficiaries in Arkansas. Issues - What factors do policymakers need to weigh to determine whether the state should offer home and community-based services as a state plan option as the DRA allows and, if so, whether it will continue to offer Medicaid waiver services for specific populations?
- What are the cost factors and effect on the numbers of people with disabilities who are being served or will be served in the future under the DRA state plan option?
- Has the state’s ADRC model (physical locations and/or websites) been well-publicized so that consumers are aware of the available services? Has the model been designed to be accessible by people of all incomes?
- Have a wide range of community organizations, both private and nonprofit, been involved in planning, development and operation of the ADRC system?
- What standards has the state established for oversight and monitoring to ensure that quality of care is provided in consumer-directed programs?
- How are the fiscal agents to be selected for a self-directed program and how does the state assess its capability for the tasks it performs and monitor its on-going performance?
- How will the state set the monthly allowance for beneficiaries under a consumer-directed program? Will the levels be adequate to meet the needs of people with severe disabilities?
Notes
1. The Medicaid waiver program allows states to provide HCBS to specific populations such as elderly and disabled people or those with traumatic brain injury rather than to all Medicaid-eligible people.
Resources
The Lewin Group. “The Aging and Disability Resource Center Demonstration Grant Initiative: Interim Outcomes Report.” http://www.adrc-tae.org/documents/InterimReport.pdf
Cash and Counseling website. http://www.cashandcounseling.org/ Series of articles on issues involving Cash and Counseling demonstration in Health Services Research (Vol. 42, Issue 1, February 2007) http://www.blackwell-synergy.com/toc/hesr/42/1p2 Scripps Gerontology Center. “A Guide to Quality in Consumer Directed Services. http://www.hcbs.org/files/42/2099/Guidefront.pdg
Contact for more information Donna Folkemer
Group Director, Forum for State Health Policy Leadership
National Conference of State Legislatures
(202) 624-8171
donna.folkemer@ncsl.org Funding for this project was made possible through funding from the U.S. Administration on Aging. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government. |