Caregiving-related legislation has increased over the past decade. Governments at the local, state, and federal level are beginning to recognize the importance of caregivers and developing policies to better support them. Critical to the success of these policy changes are reports such as The National Academies of Sciences, Engineering, and Medicine's Families Caring for an Aging America (2016). The expert committee, Chaired by Center for Caregiving Director Dr. Richard Schulz, examined the nation's caregiving population, providing an overview of the prevalence and nature of family caregiving of older adults, as well as the impact caregiving has on the individual's health, economic security, and overall well-being. The report evaluated the effectiveness of programs and interventions currently in place to support family caregivers. The report closed with recommendations related to developing a national strategy to effectively engage and support caregivers.
In 2016, researchers at the Health Policy Institute Stern Center published a report Addressing the Needs of Caregivers at Risk: A New Policy Strategy. The report investigated the degree to which public policy in the United States recognizes and responds to caregiver needs and evaluated policies and/or proposed amendments currently in place with the following goals: (1) alleviating financial hardships for caregivers; (2) promoting flexible employment for caregivers; and (3) providing services and supports to caregivers. Overall researchers found that the programs in place did not meet the needs of caregivers and significant improvements would need to be in place to properly support and improve health and economic outcomes for caregivers.
In 2015, researchers at the Health Policy Institute published a report Addressing the Health Needs of an Aging America: New Opportunities for Evidence-Based Policy Solutions. The report systematically mapped the landscape of research evidence and policy recommendations to identify opportunities for evidence-based policies to address the changing health needs of the aging US population. The results therein provided a comprehensive and unbiased view of the best-available evidence and policy activity around healthcare for older adults.
Policy related to caregiver integration into care planning
To date, thirty-five states have enacted the Caregiver Advise, Record, Enable (CARE) Act to support the integration of caregivers into hospital discharge planning and post-acute care processes. The Act requires that hospital healthcare providers
- ask patients if they want to designate a caregiver on their medical records when admitted to the hospital
- notify the identified caregiver when the patient is to be discharged home or transferred to another medical facility
- offer instruction to caregivers on post-acute healthcare tasks to be performed in the home
Passage of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S.1028/H.R.3759) in 2017 solidified recognition for caregiving at the federal level. It requires the Secretary of Health and Human Services to develop strategies to systematically include, assess, and address caregivers' needs, problems, and strengths in the care planning for their loved ones.
Policy providing funding support to caregiver initiatives
National Family Caregiver Support Program - Established in 2000 from the Older Americans Act (OAA), this program provides grants to states and territories based on their share of the population age 70 and over. Grants fund supports that help family and informal caregivers care for older adults in their homes.
Policy related to issues for employed caregivers
- Federal Family and Medical Leave Act (1993) - Established worker rights of up to 12 weeks of unpaid, job-protected leave to bond with a new child, care for oneself or certain family members (child, spouse, parent). It applied only to employers with 50 or more employees.
- Paid Family Leave (PFL) - The US does not ahve a national policy that requires employers to provide PFL. Six states and DC have enacted legislation that provides partial wage replacement.
- Paid sick days - Federal policy does not require employers to offer paid sick days. Currently, ten states and DC require paid sick leave and over 40 local jurisdictions in nine states have passed paid sick day legislation.
State-specific adaptations and policies
- Eligible Leave for Employee Caregiving Time (ELECT) aka Illinois Employee Sick Leave Act (01/2017) requires that those employers that offer unpaid or paid sick leave to allow employees to use up to half of their earned sick leave benefits for family caregiving responsibilities including a family member's illness or injury or to accompany a relative to a medical appointment.
- Georgia's Family Care Act requires employers to allow their eligible employees to use up to five days of earned paid sick leave per year to care for immediate family members.
Policy related to the support of older adults
Older Americans Act (OAA) – Initially passed by Congress in 1965, the OAA created the Administration on Aging (AoA) within the Federal Department of Health, Education and Welfare. The AoA was to oversee state grant programs for community planning and social services, research and development projects, and personnel training in the field of aging. In addition, the OAA called for the development of State Units on Aging. To this day, the OAA is still considered the primary source of organization and delivery of services to older adults and their caregivers.
1973 – Area Agencies on Aging established. Title V allowed grants to local community agencies for senior centers and the creation of the Community Service Employment grant program (Dept. of Labor) for low-income persons 55 and older.
1978 – OAA amendments required each state to establish a long-term care ombudsman program to cover nursing homes.
1984 – Reauthorization of the OAA which clarified and reaffirmed the roles of State and Area Agencies on Aging in coordinating community based services and in maintaining accountability for the funding of national priority services (legal, access, in-home).
2000 – Establishment of the new National Family Caregiver Support Program
2012 – Administration for Community Living (ACL) established, bringing together the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.