People living with HIV (PLWH) are living longer due to advances in antiretroviral therapies and disease management. In 2016, 47 percent of PLWH in the United States were over age 50. This population often needs long-term services and supports at an earlier age due to increased risk of dementia, chronic illness, and the social isolation still associated with HIV infection. This aging population’s unique health care service and support needs are ushering in a new wave of state initiatives that work both within and outside traditional systems.
At the National Academy of State Health Policy’s annual conference earlier this year, state leaders met during a daylong preconference, Covering the Waterfront: Innovative State HIV Policy Approaches, from Prevention to Aging in Place, to share the strategies and challenges they face as they work to support PLWH across their lifespans.
New York and South Carolina have longstanding Medicaid that provide home- and community-based services (HCBS) to an aging PLWH population. Policymakers from those states described how these programs address the needs of their older :
South Carolina, whose HIV/AIDs 1915(c) waiver dates back to 1988, has made changes to its waiver benefits to better support an older population, including enhanced prescription drug coverage and self-directed, in-home services. Waiver benefits also include and home modifications, which state officials noted was key to keeping aging PLWH living independently for as long as possible. While South Carolina adapted its HIV/AIDS waiver to meet these needs, state officials noted that fewer PLWH are accessing waiver services in recent years because they no longer meet institutional level-of-care criteria. Attendees noted that states may need to consider other strategies to address the needs of PLWH who still need long-term care in their homes or communities, but no longer qualify for waiver programs. Policymakers suggested that over time older adults with HIV may be best served through other, non-HIV-specific HCBS waivers.
New York has operated its AIDS Adult Day Health Care Program (ADHCP) under its Medicaid state plan since 2007. ADHCPs are long-term care programs that provide eligible PLWH and people at risk for HIV with services and supports in a community setting. In addition to core services, such as nursing visits, mental health treatment, and support for daily living activities, clients can also participate in group meals, yoga classes, and socialization services. State policymakers view these investments as effective tools to reduce the isolation commonly experienced by PLWH, encourage engagement in treatment, and ultimately reduce the cost of care for PLWH who can be successfully supported in their homes and communities for longer periods of time.
While PLWH are living longer and often able to age in place in their communities, many will eventually need care from long-term care facilities. Officials expressed concern that these facilities may be ill-equipped to handle this population — a 2015 scan of state long-term care facility regulations found that very few states require these facilities to train their staff in how to care for PLWH. State policymakers discussed the need to enhance provider and staff training and address the persistent stigma associated with HIV infection often found among long-term care facility staff as key priorities for future work.
For more information about how states are working to improve the lives of PLWH, including older adults, explore NASHP’s Toolkit: State Strategies to Improve Health Outcomes for People Living with HIV.
Additional resources from the Health Resources and Services Administration’s HIV/AIDS Bureau:
HRSA Care Action: The Graying of HIV
Aging with HIV: Care Challenges
Engaging and Retaining Older Adults in HIV Care
A recent addition to the array of long-term care services, assisted living combines the medical aspects of long-term care with a model of supported housing and social services. Definitions of asisted living vary and sometimes the services provided overlap with other models: board and care, personal care homes, residential care facilities, rest homes and others. Generally, assisted living emphasizes consumer direction over regulation. Comparing assisted living to nursing homes, Michael Rodgers, Vice President of the American Association of Homes for the Aging, says, “Our role is to assist with, rather than to do for, residents in assisted living.”
The Study Group on Long Term Care Options in Maine is a group of interested citizens brought together by the National Academy for State Health Policy at the request of the UNUM Foundation to discuss how Maine provides long term care services to people in need. Because all of us could need long term care if we experience an accident, chronic illness, unexpected birth outcome, or the frailties that can come with age, it is important that citizens learn about, discuss and guide how the current system of care will serve them. We are not experts on long term care but individuals without a specific agenda or organizational viewpoint to advance. We were invited to participate in the Study Group because of our knowledge of Maine and out ability to think creatively about complex issues. We are from all over the state from Portland to Presque Isle. We see ourselves as potential consumers of long term care, and so bring the voice of the community to some of the issues that policy officials struggle with in financing and delivering a complex array of services to a diverse population.
This study presents a summary of each state’s regulatory, licensure, and payment policies for adult foster care within its array of long term services and supports. It also examines the influence of state Nurse Practice Acts on the scope of services available in adult foster care and identifies policy considerations for state officials who are developing or expanding the availability of adult foster care.
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This report identifies numerous opportunities for strengthening the Medicaid program and enabling it to continue to play a critical role in the country’s health care system. The report draws upon the work of a group of experts with a broad range of experience in the Medicaid program. The report’s detailed recommendations identify opportunities for improvement in all areas of the Medicaid program and include calls for simplifying and expanding eligibility; increasing program flexibility for optional populations; improving coordination and integration with the Medicare program and private insurance; adjusting current financing mechanisms; and providing states with tools to manage the long-term care system and, in the process, rebalance the institutional and home and community-based care systems.
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This paper summarizes efforts in Colorado, Florida, New Jersey, and Washington to provide information to help consumers prepare and select assisted living residences. Checklists and consumer guides developed by these states are included in the appendix.
States, through the Medicaid program, are major purchasers of long-term care. Financed by the federal and state governments and administered by the states, Medicaid pays for over 40 percent of long-term care services nationwide. At the same time, long-term care for the elderly and persons with disabilities is the largest single component of Medicaid, averaging 35 percent (or $76 billion) of the program’s total budget. Soaring health costs combined with plunging state revenues have forced states to take a number of actions to control the growth of Medicaid. And as our nation ages and the demand for long-term care services continues to grow, long-term care programs are facing increasingly close scrutiny at both the federal and state levels.
In an effort to review Medicaid’s long-term care program and identify its goals, strengths, and weaknesses, the National Academy for State Health Policy (NASHP), with support from the Kaiser Commission on Medicaid and the Uninsured, convened a forum of officials from seven states (Idaho, Maryland, Minnesota, New York, Ohio, Washington, and Wisconsin). The group met July 15, 2003, in Washington, D.C., and was comprised of a cross-section of state officials that included governors’ policy staff, state budget officials, department directors, and program administrators. In addition, we have sought input from several other state officials who were unable to attend the meeting.
This report summarizes the group’s discussions as well as follow-up deliberations. It first focuses on the current environment that states face, addressing such issues as Medicaid’s role in long-term care, state fiscal crises and cost-containment strategies, and how state long-term care programs are evolving. It then details seven goals identified by the states participating in the forum. Those goals include 1) expanding access to home and community-based services; 2) reducing institutional bias; 3) allowing for greater consumer choice of services and settings; 4) expanding eligibility for long-term care; 5) improving coordination of care; 6) stabilizing financing; and 7) improving the capacity for strategic planning and tools development.
Additional resources are included and referenced where useful.
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Rising demand for a full array of service options and consumer preferences for home-like non-institutional settings is increasing the interest among state policy makers in adult foster care as a service for older adults. Although adult foster care may also serve individuals with developmental disabilities and other populations, the primary focus of this report is adults age 65 and older. State leaders are interested in the experience of states that developed adult foster care as part of their service array, trends in provider supply, regulations governing providers, and quality oversight practices.
This report is based on the policies and practices in five states – Arizona, Maine, Oregon, Washington, and Wisconsin. The states were selected based on their approach to licensing and Medicaid coverage for this residential option.