Support Family Caregivers – Long Term Care

SUPPORTING FAMILY CAREGIVERS

One of the biggest challenges states face in trying to support family caregivers is the ability to identify and reach them. States have started to adopt strategies that can help policymakers understand the population of caregivers.

STATE POLICIES RELEVANT TO SUPPORTING FAMILY CAREGIVERS

- Idaho created new, ongoing funding to the Commission on Aging, which will provide direct support to individuals living with dementia and their family caregivers by launching two pilot programs and placing three navigators in the Area Agencies on Aging throughout the state to assist families impacted by dementia in locating resources and accessing services.
- Massachusetts’ state budget appropriated $100,000 to expand access to the evidence-based Dementia Care Coordination program, which works to reduce hospitalizations, emergency department visits and delay long-term care placements by providing integrated care planning for families with the help of participating health care providers.
  The New York State Office for the Aging partnered with other state agencies to survey businesses and their employees to identify family caregivers in the workforce. The agency also distributed a caregiver guide to employers to help family caregivers find resources.
  The Iowa Department of Aging partnered with Area Agencies on Aging offices on a family caregiving assessment.
  States have also moved forward with programs to assist caregivers in meeting fiscal challenges. Many adopted Appendix K amendments during the public health emergency that allowed them to provide assistance. States have additional flexibility through Medicaid waivers to provide education, training and counseling to family caregivers. For example, Georgia’s 1915(c) waiver provides targeted supports to unpaid caregivers who live with a Medicaid beneficiary, including training, care coordination and a per diem stipend. The family caregiver can receive a minimum of eight hours of training each year and support from other care team members. Seventeen states proposed to use some portion of their rescue plan funding on training and education, while seven states proposed direct payments to family caregivers.
  States have implemented caregiver supports in state rescue plan spending in other ways.
  - Connecticut incorporated supports for caregivers of those with Alzheimer’s disease and related types of dementia into permanent initiatives.
  - An Indiana caregiver support grant for technology is designed to reduce caregiver loneliness and fund a gap analysis of family caregiving services.
  Another source of federal funds for caregiver supports is the Lifespan Respite Care Program. Funded programs provide accessible, community-based short-term relief services for family caregivers of children and adults with special needs. In 2021, Arkansas began awarding sub-grants to respite organizations for specialized respite programs, activities and events.
  Additional examples of state strategies designed to improve the financial and workplace security of family caregivers.
Other enacted state policies include:
- Enhancing family leave requirements (New Jersey and Washington).
- Establishing tax credits for caregiving expenses (Nebraska, Oklahoma and Oregon).
- Establishing protections against workplace discrimination based on family responsibilities (Delaware and the District of Columbia).
- Including family caregiving in unemployment insurance eligibility (Alaska and South Carolina).
- Exploring options for long-term services and supports beyond Medicaid (such as Washington’s Long-Term Care Trust Act).
- Promoting financial education and planning for family caregivers (Georgia and New York)

2023-24 Updates

Supporting Family Caregivers

Some states addressed dementia-specific training for in-home caregivers and public guardians in 2023, including Arkansas and Illinois

Numerous states appropriated funding for respite care programs for family caregivers of individuals with dementia, including Connecticut, Florida, Maine, Minnesota, Missouri, New Hampshire, Ohio, South Carolina, Vermont, West Virginia, Wisconsin

Connecticut addressed training for homemaker-companion agencies.

Maine (2021) created a workgroup and pilot program to provide stipends to family caregivers, including dementia family caregivers, to support their caring for loved ones in the home. The state also established a stakeholder group to ensure Medicaid determinations for long-term care and home and community-based services include the perspective of family caregivers.

Nevada required the Department of Health and Human Services to apply for a home and community-based waiver to provide full-time structured family caregiving services for individuals living with dementia, including case management, personal care, personal assistance, homemaker services, and other health-related services.

New York appropriated $25,125,000 for the state’s Alzheimer’s Disease Caregiver Support Initiative. The funding, which includes a $125,000 increase over the prior year, supports programs and services for caregivers of people living with dementia, including additional respite care.

North Dakota increased funding for Dementia Care Services Program grants by 25%, to provide a total of $1.6 million over the biennium. The Dementia Care Services Program provides professional and public dementia education, physician outreach, and care consultations to people living with dementia and their caregivers.

Oregon appropriated $35.1 million in state funds for the Oregon Project Independence and Family Caregiver Assistance Programs to provide enhanced home and community-based services to Medicaid beneficiaries with dementia and other eligible individuals.

Tennessee codified modifications to the Alzheimer’s respite care program by removing the requirement that an individual must have an Alzheimer’s diagnosis to qualify for the respite care program and allows individuals who are experiencing symptoms of Alzheimer’s and other dementia to qualify. Lawmakers appropriated $1 million to fund the second year of the Colonel Thomas G. Bowden Memorial – Alzheimer’s Respite Pilot Program.