As the country ages, states recognize the importance of caregivers and are developing new initiatives to support and sustain their critical role in helping relatives, friends, and neighbors age in place. The recent passage of the Recognize, Assist, Include, Support, and Engage Family Caregivers (RAISE) Act, a federal strategy to support family caregivers, brings new attention to this policy issue.
Family caregivers are an essential but uncompensated component of the country’s health care system. They provide nearly $470 billion in unpaid services each year, reducing the need for home health services and delaying the use of costly nursing home care. Medicare does not cover long-term services and supports, and few individuals have private coverage for these services. As a result, state Medicaid programs cover six out of 10 of the country’s nursing home residents and spend $95 billion per year on a broad array of home- and community-based services. States rely heavily on caregivers and the critical supports they provide to millions of older adults and individuals with disabilities.
The National Academy for State Health Policy (NASHP), with support from The John A. Hartford Foundation, convened a state officials-only roundtable at its 2019 annual conference in August to explore this issue in-depth. Policymakers highlighted several state efforts to assist family caregivers and shared how their states have offered additional flexibility, support, and resources to address caregiver needs.
Leveraging State Resources
Minnesota uses state funding strategically to provide services to older adults who would likely require Medicaid-funded nursing home care without some level of support services. The state’s Essential Community Supports program is made available to individuals whose needs do not meet the state’s nursing home level of care benchmark, but who require some assistance to remain in their homes and communities. Based on individual assessments, recipients receive a coordinated set of services, which can include:
- A personal emergency response system;
- Homemaker services;
- Caregiver support and education;
- Home-delivered meals;
- Community living assistance; and
- Adult day services.
The program is part of Minnesota’s strategy to reach people early, provide less expensive services, and prevent or delay an individual’s need to spend down their assets in order to qualify for Medicaid.
Hawaii’s Kapuna Caregiver Program was reauthorized in 2018 and funded through appropriations of up to $1.5 million, or $210 per week per eligible participant. The program provides long-term services and supports, such as adult day care, transportation, chore services, respite care, and related supports to keep working caregivers employed. While not a means-tested program, the state conducts a holistic assessment of the caregiver and care recipient. Allocated dollars are provided directly to service agencies to minimize administrative oversight. Moving forward, state policymakers will continue to review the program’s sustainability. During its first year of implementation, most program funds went to providing adult day care. In the future, state policymakers would like to explore other ways to support family caregivers using these very limited resources.
Mitigating the Financial Burden
Washington State passed the first-in-the-nation Long-Term Care Trust Act mandatory payroll premium housed in a state trust fund finances long-term services and supports for everyone who pays in and is employed in the state. Qualifying individuals become eligible to receive benefits when they need assistance with three or more activities of daily living, which Washington State defines as bathing, bed mobility, dressing, eating, and other similar activities. The state pays certified, licensed long-term services and support providers to deliver care. Qualified family members can also be paid for services through these agencies.
The trust fund covers $36,500 (adjusted with inflation) in long-term care benefits per individual over the course of the beneficiary’s lifetime. Based on the state’s actuarial analysis, Washington policymakers expect this amount will cover most individuals’ long-term needs. Funds may be used for a variety of purposes, including:
- Paying professional aides;
- Training and reimbursing family caregivers; and
- Covering expenses of caregiving support, care coordination, respite, and similar supports.
Maximizing the Flexibility of Home- and Community-Based Services Waivers
Minnesota’s Elderly Waiver Program provides a range of supports for family caregivers, including respite, counseling and training, and the Family Memory Care model that offers coaching and other services to families taking care of an individual with dementia.
Washington’s 1115 waiver program supports a range of benefits designed to support caregivers so that individuals who need care can stay at home and in their communities. Its Medicaid Alternative Care program targets adults who may be eligible for Medicaid but are not currently accessing long-term support services, while its Tailored Supports for Older Adults program creates a new benefit for those at risk of needing Medicaid long-term care services in the future. Both programs offer information, training, and supports for caregivers, including respite options.
Investing in a Supportive Care Workforce
Several state officials highlighted the urgency of developing an adequate workforce to care for older adults, including the need to train and professionalize paid family caregivers. Under Washington’s Long-Term Care Trust Act, a “qualified family caregiver,” or a relative of an eligible care recipient who satisfies state law requirements for providers of long-term services and supports will be eligible to receive payment from the state for providing those services.
Given the central role states play as funders of long-term care, the development of a national strategy to support family caregivers creates opportunities for them, including policy strategies that can be implemented at the state level.
In the coming months, NASHP will be working closely with The John A. Hartford Foundation and the Administration for Community Living to launch the RAISE Family Caregiver Resource and Dissemination Center webpage. The webpage will serve as a national resource for state policymakers and other stakeholders interested in understanding the critical role of family caregivers and identifying policies and best practices to support them.