Meet the Family Caregivers Featured in the RAISE Act Family Caregiving Advisory Council Initial Report to Congress
In support of the RAISE Family Caregiver Advisory Council’s initial report to Congress and the National Family Caregiving Strategy that will be developed over the coming year, the Administration for Community Living, The John A. Hartford Foundation, the National Alliance for Caregiving (NAC), and the National Academy for State Health Policy partnered to share the lived experience of family caregivers across the lifespan.
We invite you to meet some of America’s 53 million family caregivers and get a glimpse of their diversity as a population. They represent various ethnic, racial, and cultural backgrounds. They represent all generations, genders, sexual orientations, income levels, educational experiences, and geographic locations. They support older adults and people of all ages who live with disabilities who have a broad range of needs. They have varied relationships with the people they care for—they are siblings, spouses, parents, children, and families of choice.
Their stories are woven throughout the RAISE Family Caregiving Advisory Council's initial report to Congress, and in the videos linked below, some of them share a little bit about their experiences.
Too often, the public—and even professionals—do not fully understand the role families play in helping people with disabilities maximize independence. They underestimate its complexity, the time and energy required, and the benefits of support. Debbi, who lives in Minnesota, is an example of a caregiver who has learned on the job to advocate for her son while at the same time educating providers about her role as a caregiver. Her efforts underscore how increased understanding and decreased bias can pave the way for a more holistic approach to connecting caregivers and people with disabilities with the services and supports they need. https://youtu.be/ArQT75GxnLI
Family caregivers are often critical to ensuring that people who need assistance receive high quality care. However, for this to happen, it is important for providers to assess the caregiver’s needs, their concerns, and their comfort level with specific tasks. Les lives in Washington State. His story illustrates the value of culturally sensitive assessments to determine which services and supports will best enable them to balance the responsibilities of caregiving with addressing their own needs. https://youtu.be/YXJWOet7g5A
Helping families maintain their financial health is a core component of maintaining the caregivers’ well-being and is critical to meeting the overall goals of the person receiving support and caregiver. As a caregiver who left her career at a young age, Jennifer M., who lives in Florida, is an example of a caregiver at greater risk of impoverishment later in life. Her story demonstrates how, without early identification and assistance, family caregivers can easily spend down their own resources, leaving them at significant financial risk later in their own lives. https://youtu.be/mU8ygmdy2Qs
Caregiving youth, like Nayma, often put their own lives on hold to support family members, but they frequently go unrecognized. As a sibling caregiver, she often misses time at work to perform caregiving tasks for both of her siblings and to support her parents. The adoption of policies that increase federal, state, and local recognition of caregivers, including sibling caregivers, and that offer flexible employee-centered workplace policies and practices that support work/life balance are just two examples of supports that can assist younger caregivers. https://youtu.be/VRDDTJL0VGI
Young adult caregivers like Autumn are often overlooked by medical providers. Often, caregiving education materials and supports do not apply to their age demographic and needs. Autumn’s story highlights the value of adopting policies that include family caregivers (of all ages) in the care team and increasing access to culturally appropriate services and supports.https://youtu.be/rM0gUjUwUJE
Whitney, who lives in Maryland, experienced “high-intensity caregiving,” which is where the caregiver is providing many hours of care with little to no support. While she was able to maintain full-time employment while caregiving, she nonetheless struggled to meet her caregiving expenses. Because of her work, she did not qualify for caregiving support. Her story highlights just one of the many gaps in caregiver supports and services available for working families. It underscores the need for asset protection for all caregivers and the benefits of increasing the availability of counseling, training, and peer support to help them manage and navigate the financial instability associated with the caregiving experience.https://youtu.be/5MVu3nDVCAA
Tom, a Minnesota caregiver, is one of the 39 percent of family caregivers who identify as male. His story is an example of how important it is that caregivers, service providers, and healthcare professionals have access to a robust body of trusted, standardized, and evidence-based information about caregiving and how best to support family members. Without this body of work, many family caregivers, like Tom, have to make decisions based off their own best guess of what they feel is best for the person receiving support. To address this issue, the nation needs a national infrastructure of standardized information and best practices about family caregiving.https://youtu.be/pfbrGMOxwG0
Jennifer H.’s story illustrates the critical importance of supporting caregivers during emergencies. For example, the current pandemic has disproportionately affected family caregivers. Her story also serves as a reminder of the importance of training professionals to recognize caregivers and treat them and their family members with compassion and respect, as well as make appropriate referrals that can help them carry out their tasks in the best possible way.https://youtu.be/JTt11o2iizg