This year I had the honor of meeting Kyllian, a young New Jerseyan who, as a teenager, was a caregiver for her father. Throughout his battle with cancer, she would come home after high school every day to care for him.
Her dad lost his battle to cancer a few years ago, but Kyllian’s passionate advocacy for family caregivers burns brightly. She is now in her early 20s, and her youth caregiver group is among the many supporters of the Caregiver Advise, Record, Enable (CARE) Act, a new law to help family caregivers in New Jersey.
Passed last year, the law went into effect May 12 and requires hospitals to:
- Record the family caregiver’s name in the medical record of his or her loved one
- Notify the family caregiver if the loved one is to be transferred or discharged home
- Provide live instruction and demonstration in the medical tasks — such as wound care, medication management or giving injections — the family caregiver will need to perform at home
After I spoke on the CARE Act at a New Jersey women’s caregivers conference, Kyllian shared her story with me and how “It’s important that caregivers know what to do.” I couldn’t agree more. Nearly half of family caregivers perform these complicated medical tasks — often with little or no training.
She also said, “I’m so glad that you mentioned the CARE Act applies to everyone, regardless of age.” I think this point is crucial.
Family caregiving is an issue that affects us all. The power of the CARE Act is that it recognizes family caregivers of all ages and all relationships — spouses, children, partners, friends and family — anyone who is helping their loved ones live independently at home. While the average caregiver is a 49-year-old woman who’s caring for her mother, family caregivers are as diverse as the country in which we live.
Fighting for family caregivers
AARP is fighting for the CARE Act in states across the country because supporting family caregivers is a top priority for all of us.
- In 16 states the CARE Act has been signed into law and is either in effect or will be soon.
- In California and New York, the CARE Act has been passed by the state legislature and is awaiting the governor’s signature.
- In the District of Columbia, Massachusetts, Michigan, Pennsylvania, Puerto Rico and Wisconsin, the CARE Act is being considered by the legislature.
Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.
Follow Elaine on Twitter: @RoamTheDomes.