R.A.I.S.E.

NAC is partnering with the National Academy for State Health Policy (NASHP), the Administration for Community Living (ACL), and the John A. Hartford Foundation to develop a series of vignettes to be used to add the caregiver voice into the work of the RAISE Family Caregiver Advisory Council. In 2021, the nearly 30 interviews conducted to write the vignettes will be used to create a series of videos that allow the caregiver voice and their message to disseminate the Council’s recommendations into the general public and among key policymakers. In honor of National Family Caregivers Month in November, NAC, the John A. Hartford Foundation, ACL, and NASHP will be releasing some of these caregivers’ stories to help raise the voices of America’s caregivers. Stay tuned by following the hashtag #RAISEcaregiving on Facebook, Twitter, and LinkedIn.

R.A.I.S.E. Caregivers Spotlight

Zuzette
Sacaton, AZ
Jennifer H
Port St. Lucie, FL
Jeanette
Greensboro, NC
Jennifer M
Jacksonville, FL
Abena
Washington, DC
Melissa
Bennington, VT
Sheryl
New York, NY
Nayma
Los Angeles, CA
Allen
Columbia, SC
Laura
Washington, DC
Rona
Stillwater, OK
Autumn
Washington, DC
Beth
Washington, DC
Leslie
Vancouver, WA
Shawn
Kansas City, MO
Letty
Sierra Vista, AZ
Whitney
Bethesda, MD
Jim
Apex, NC
Debbi
Eagan, MN
Sarah
Hodgenville, KY
TeriLynne
Maricopa, AZ
Sherry
Newbury Park, CA
Gary
Honolulu, HI
Gabriel
Katie
Myrtle Beach, SC
Tom
St. Anthony, MN

Advocacy > R.A.I.S.E. Family Caregivers Act

The RAISE Family Caregivers Act, which became law on January 22, 2018, directs the Secretary of Health and Human Services to develop a national family caregiving strategy. The strategy will identify actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers, and will include:

  • Promoting greater adoption of person- and family-centered care in all healthcare and long-term service and support settings, with the person and the family caregiver at the center of care teams
  • Assessment and service planning (including care transitions and coordination) involving care recipients and family caregivers
  • Information, education, training supports, referral, and care coordination
  • Respite options
  • Financial security and workplace issues

The RAISE Family Caregiver Resource and Dissemination Center

Across the nation, state health programs depend on caregivers who provide critical support to help relatives, friends, and neighbors age in place while contributing about $470 billion in unpaid health care services. To better support family caregivers, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in 2018, which established the Family Caregiving Advisory Council tasked with creating the country’s first national Family Caregiver Strategy.

To support the council’s work, NASHP has created the RAISE Act Family Caregiver Resource and Dissemination Center with support from The John A. Hartford Foundation to:

Develop family caregiving resources for state and federal policymakers and other stakeholders; Provide support to the council and its subcommittee member as they craft policy recommendations; Convene experts and thought leaders to provide perspectives and expertise to the council; and Support states as they develop policies to address family caregiver issues.

NAC President and CEO, C. Grace Whiting, is honored to serve as expert faculty to the caregiver resource center.

https://nashp.org/policy/chronic-and-complex-populations/the-raise-family-caregiver-resource-and-dissemination-center/

RAISE Family Caregiving Advisory Council

To support the development and execution of the strategy, the RAISE Act also directed the establishment of the Family Caregiving Advisory Council. The council is charged with providing recommendations to the Secretary of Health and Human Services on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs. The law specified that the council must include up to 15 voting members who reflect the diversity of family caregivers and people who receive support, with at least one from each of the following constituencies:

  • Caregivers
  • Older adults who need long-term services and supports
  • Individuals with disabilities
  • Health care and social service providers
  • Providers of long-term services and supports
  • Employers
  • Paraprofessional workers
  • State and local officials
  • Accreditation bodies
  • Veterans

In addition, the council includes non-voting representatives from federal departments and agencies who play role in these issues.

https://acl.gov/programs/support-caregivers/raise-family-caregiving-advisory-council

Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act

Public Law No. 115-119

The term ‘‘family caregiver’’ means an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.

https://acl.gov/sites/default/files/about-acl/2018-10/PLAW-115publ119%20-%20RAISE.pdf

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Sacaton, AZ

Zuzette

Zuzette is one of the 1% of family caregivers who identify as Native American. Because caring for family members is a valued part of Native American culture, many Native Americans do not identify as caregivers. Zuzette, and her sister TeriLynne, jointly care for their parents.

Port St. Lucie, FL

Jennifer H

The COVID-19 pandemic has brought new concerns about the care her mother is receiving. Since visits to her mother’s assisted living facility aren’t allowed, Jennifer hasn’t been able to witness the care received and hasn’t been informed of any of her mother’s health changes.

Greensboro, NC

Jeanette

Jeanette cared for her veteran husband at home but found difficulty in balancing her work life and home life, and she ended up leaving her beloved job.

Jacksonville, FL

Jennifer M

Jennifer M. is a family caregiver for her younger brother who was wounded in Iraq in 2005, and her mother who suffered a stroke in 2007.

Washington, DC

Abena

Abena’s husband was diagnosed with a brain tumor in 2013 shortly after she became pregnant with their first child. Her husband lived with his tumor for a little over four years before passing away. Once Abena realized she was expected to be a full-time nurse, she decided she had to leave her job altogether in order to care for her husband.

Bennington, VT

Melissa

Melissa was the secondary caregiver for her father, who had Lou Gehrig’s disease, and is now the primary caregiver for her husband, who suffers from chronic pain. While Melissa realized right away she was a caregiver for her father due to the severity of his condition, which required many hours of care, this realization was more gradual with her husband.

New York, NY

Sheryl

Sheryl is one of 8% of caregivers who identify as LGBTQ+. She cares for her husband, who has dementia and Parkinsonian symptoms. Sheryl manages her household’s finances, house repairs. cooking, cleaning, and maintaining their way of life. She has found it challenging to take over her husband’s duties, as well as continue her own.

Los Angeles, CA

Nayma

Nayma is a young caregiver (ages 18-49), who works part-time while providing care for her two siblings with Autism and her mother. Nayma has no other family in the United States to help support her parents and siblings, and is the main translator for her parents.

Columbia, SC

Allen

After Allen and his wife adopted three girls from India, Allen’s wife discovered that she had Stage IV cancer, and Allen became her caregiver.

Washington, DC

Laura

Laura spent two years caring for her husband, who was diagnosed with stage IV neuroendocrine cancer. Laura is one of 72 percent of cancer caregivers who performed complex medical and nursing tasks.

Stillwater, OK

Rona

Rona lives in rural Oklahoma and is the mother of 3 children. Her youngest child is a 13-year-old with Down Syndrome. Her daughter is non-verbal and can’t be left unattended.

Washington, DC

Autumn

Autumn, a millennial caregiver, was 32 when her mother was diagnosed with a progressive neurogenerative disease. As the only child of a single mother, Autumn became her mother’s caregiver.

Washington, DC

Beth

Beth’s husband was diagnosed with colon cancer in 2016. Her husband wanted to maintain his independence throughout his journey with cancer, and was not the type to ask others for help, so a lot of the care he needed fell on Beth.

Vancouver, WA

Leslie

Les is one of 74% of caregivers who care for someone 75 years or older and are 75 years or older themselves. In 2015, his wife began having cognitive impairments and, through several tests, it was determined that she had Alzheimer’s disease. Les became her caregiver.

Kansas City, MO

Shawn

Shawn has been caring for her veteran husband, who has PTSD and is a recovering alcoholic, for 7 years.

Sierra Vista, AZ

Letty

Letty is a caregiver for her parents. Letty’s mother, who had dementia, has since passed on, but Letty still cares for her father. She herself is suffering from health issues on top of the support she provides to her parents.

Bethesda, MD

Whitney

Whitney cared for both her two-year-old and her husband, who was diagnosed with brain cancer, while maintaining full-time work as an attorney. She provided care for more than forty hours a week due to a decline in cognitive function that her husband experienced preventing him from being left alone.

Apex, NC

Jim

Jim and his wife care for their veteran daughter since she was in a car accident while stationed in Italy as an Army Captain. Their daughter now needs 24/7 care and is in the Veteran Directed Care Program.

Eagan, MN

Debbi

Debbi is one of 14% caregiver who identify as African Americans. She cares for her son with an intellectual or developmental disability (IDD). She became an advocate for herself and her son, as many caregivers are forced to do.

Hodgenville, KY

Sarah

Sarah is one of the 24% of caregivers who cares for multiple, her husband, her mother, and her brother before he passed away.

Maricopa, AZ

TeriLynne

TeriLynne is one of the 1% of family caregivers who identify as Native American. Because caring for family members is a valued part of Native American culture, many Native Americans do not identify as caregivers. TeriLynne, and her sister Zuzette, jointly care for their parents

Newbury Park, CA

Sherry

Sherry is a family caregiver for her husband who was diagnosed with Parkinson’s Disease.

Honolulu, HI

Gary

When Gary’s mother-in-law was diagnosed with Alzheimer’s, Gary’s wife retired to look after her, and Gary became a secondary family caregiver.

Gabriel

A recent high school graduate, Gabe grew up with in a household with his mom, 3 siblings, and his grandpa who has schizophrenia with paranoia. Gabe spent much of his childhood helping around the house and caring for his grandpa.

Myrtle Beach, SC

Katie

Katie is the mother of a 20-year-old son born with physical and intellectual disabilities caused by a rare disease.

St. Anthony, MN

Tom

Tom cares for his wife, who was diagnosed with Alzheimer’s disease. His wife’s condition led Tom to ultimately leave his non-profit work and move he and his wife into Senior Housing.