A Guide to Long-Term Care for State Policy Makers:
AGING AND DISABILITY RESOURCE CENTERS
“To have an Aging and Disability Resource Center in every community serving as highly visible and trusted places where people of all incomes and ages can turn for information on the full range of long-term support options and a single point of entry for access to public long-term support programs and benefits.”
Centers for Medicare and Medicaid Services
Administration on Aging
The country’s long-term care (LTC) system is fragmented and confusing to most Americans. A wide range of service and supports are provided by many different public and private agencies and organizations. A person’s ability to access public programs is governed by complicated state rules about financial and functional eligibility that differ state by state, under an overarching federal framework.
Many people believe that nursing home care is the only alternative when they or a relative becomes frail or disabled. They understand little about public programs in their state for which they might be eligible. They are unaware, in most cases, of the state’s aging network and its services and support system.
One answer to this problem is the creation of Aging and Disability Resource Centers (ADRC) in each state—one-stop locations or access points at which consumers can find the assistance they need to navigate the complex LTC system in their state. These centers serve as the entry point to a state’s long-term care services and supports. They can be a single location, multiple sites and organizations, or different access points for different populations. They can be physical locations (walk-in centers or 1-800 telephone systems) or a virtual presence, such as a dedicated website for information and resources.
Information and assistance have been a core mission of the nation’s network of Area Agencies on Aging (AAAs) for many years. A number of AAAs also have moved beyond these basic functions to a system that screens older people for eligibility for state and federally funded LTC services, arranges for the services, and monitors the care. Building on that base, the ADRC model is intended to provide seamless access to services needed by the elderly and those with disabilities of all ages and all incomes.
Although the AAA model is prevalent nationwide, county-based systems also have been in operation. For example, Wisconsin led the way in the late 1990s with ADRCs that serve all populations with county-based comprehensive information and referral as well as counseling on all LTC benefits and services, both public and private. These centers also serve as the entry point for families and individuals who want to apply for public support services. Wisconsin officials believe that the ADRCs have successfully helped families to continue to support relatives at home, delayed the need for public services in some cases, or diverted people from nursing homes and into typically less costly home and community-based service (HCBS) programs.
Through a collaborative effort of the U.S. Administration on Aging and the U.S. Centers for Medicare and Medicaid Services, a grant program begun in 2003 has funded ADRC pilot demonstration sites in 43 states (grants of up to $800,000 for up to three years). Additional funding was awarded in 2006 to expand existing and the newly developing programs. As of January 2007, 125 ADRC pilot programs were in operation in 43 states.
These resource centers are expected to provide services to adults age 60 and older and at least one of the following groups, with the expectation that states would work toward serving all populations of people with disabilities:
- Those with physical disabilities;
- Those with mental retardation/developmental disabilities; or
- Those with serious mental illness.
An ADRC demonstration site also must provide information and assistance to the private-pay population to help these consumers learn how to plan for their LTC needs and find the private resources that might assist them. ADRC demonstration sites are expected to perform a range of functions described below.
- Awareness and Information: Public education and information about options.
- Assistance: Options, benefits and employment counseling, referral to other programs and benefits; and crisis intervention.
- Access: Eligibility screening, comprehensive assessment, programmatic and financial (Medicaid) eligibility determinations, one-stop access to all public programs, private-pay services, and planning for future needs.
- Financial and Functional Eligibility Screening: These are complex components of a streamlined access system for ADRCs to develop. The ADRC grantees must be able to perform these functions by the third year of the grant. Most AAAs that are evolving into ADCRs have not had the responsibility for these functions in the past, particularly the determination of financial eligibility; this generally is handled by a state’s Medicaid agency.
Some ADRCs are also attempting to expedite financial eligibility determinations so that a person who would like to receive LTC services at home is not forced instead to enter a nursing home because of a lengthy financial review.1 In Florida, for example, the eligibility process was expedited when the states required that the ADRC pilot sites put the staff who determine financial and functional eligibility in the same physical or virtual location.
Building a sustainable, effective ADRC requires establishing collaborative working relationships in the community. States must involve consumers, service providers, advocacy groups and community organizations in the planning, implementation, and evaluation of their ADRC program. Examples of collaboration include the following.
- The Georgia Division of Aging Services and the Division of Mental Health, Developmental Disabiliites and Addictive Diseases (both in the Department of Human Resources) made a joint budget request in 2007 to integrate ADRC coordination between the developmental disabilities service delivery system and the aging network.
- In Massachusetts, the ADRC consortium is a partnership between Independent Living Centers and Aging Service Access Points (already established single-entry point agencies).
Resource centers also are expected to collaborate with State Health Insurance Assistance Programs, National Family Care Support Programs, and Alzheimer’s disease service and support programs, as well as with organizations that provide transportation, employment, housing and other services. Thus, all resources that will help vulnerable individuals remain in their homes and communities can be pulled together to help ensure that reality.
The major role of a state agency or agencies can be to provide oversight and guidance, with local entities handling day-to-day operations. Most ADRCs have state-level advisory boards with broad stakeholder participation. State legislatures can give statutory authority to the resource centers and appropriate funds to help sustain operations. State funding contributions to date, not including the required ADRC grant match, exceed $36 million. The Florida Legislature, for example, passed statutory changes to implement resource centers statewide, authorizing $3 million in the FY 2007 budget.
There can be many barriers to successful implementation, however.
- Federal grant programs are of limited duration, and grant funds generally supply only about 25 percent of annual pilot site budgets. Other funding comes from the Older Americans Act, Medicaid, state and local revenue, and other grants. Thus, the resource centers need the consistent support and involvement of state and local policymakers to ensure their sustainability.
- Limited state and local budgets and competing priorities can present fiscal challenges. (In 37 pilot sites reviewed in April 2006, 18 percent of the site’s budget came from state general revenue, 8 percent from county or local government, and 15 percent from Older Americans Act funds.)
- Developing a resource center into a successful operation requires the involvement of many stakeholders in the community, with a strong emphasis on cooperation and conciliation. State agencies and organizations that represent diverse populations often have their own agendas.
- Integrating information and assistance, case management, benefits screening and a resource directory into one system with limited funding can be difficult, intensive and time-consuming.
In evaluating the progress of a state’s ADRCs, policymakers might wish to review the following.
- The ease with which the elderly, and others with disabilities and caregivers are able to obtain LTC information and how quickly they can access services and supports for which they might be eligible.
- The adequacy of public awareness campaigns by the state or by the ADRCs, and the public response in terms of initial and repeated contacts with the ADRCs.
- Whether ADRC programs are helping to increase the number of people who receive HCBS rather than being institutionalized.2
- How the state and/or the ADRCs plan to sustain ADRC operations, particularly funding issues.
- How the ADRC program fits into or advances a state’s broader LTC reform agenda.
Aging and Disability Resource Centers should play a significant role in an improved state LTC system by making it possible for more older people and other adults with disabilities to plan for their LTC needs with a better understanding of the public and private resources available to them and the process by which they can gain the services and supports they need. Individuals can assume more responsibility for their own long-term care needs—a goal that policymakers stress—if they have adequate information to make decisions and plan ahead.
The centers also should be able to help state policymakers understand consumer LTC demand and the state’s capacity to meet consumer needs through data collection and evaluation of programs and services. A 2006 report on the progress of the ADRC pilot sites described the program as providing states “…with creative opportunities to effectively deliver long-term support resources for providers and consumers in a single coordinated service delivery system consistent with the goals of long-term care rebalancing initiatives.”
Notes
1. Nursing homes generally have the resources to determine a person’s Medicaid eligibility after the person has already become a resident, but community programs frequently have more limited resources.
2. The 2006 Lewin report on the initial grant demonstration states noted that eight pilot sites in five states experienced a 10.2 percent increase in HCBS enrollment (Medicaid and other state-funded programs) and an 11.8 percent decline in institutional placements.
Resources
U.S. Administration on Aging. Fact Sheet: “Aging and Disability Resource Centers.” http://www.aoa.gov/press/fact/pdg/ADRC.pdf
Dina Elani. U.S. Centers for Medicare and Medicaid Services, 410/786-9915 delani@cms.hhs.gov.; Greg Case, U.S. Administration on Aging, 202/357-3442 greg.case@aoa,hhs.gov
Aging and Disability Resource Center: “National Vision and State Models.” http://www.hcbs.org/files/97/4844/AOA_-_Lugo_Presentation.pdf
Aging and Disability Resource Center website. http://www.adrc-tae.org/tiki-index.php?page=PublicHomePage
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.
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