When Carol Barnett was 11, she told her mother to send her 3-year-old brother, Steve, “back where he came from,” in typical, sassy preteen fashion.

But today, Barnett, 60, can’t imagine life without him.

Steve was born with cerebral palsy, a disorder that affects his muscles and the way he moves.

Carol has been caring for Steve consistently for the past 30 years.

She is not alone by a long shot. Nearly half of all Delawareans over age 35 provide – or have provided – unpaid long-term care for a loved one who is ill, elderly or lives with a physical or mental disability, according to survey from AARP. Caregivers could be relatives, neighbors and friends.

Long-term care can also be for helping someone with a chronic illness or recovery from a serious accident.

Their parents died within eight years of each other, so when Carol was 25 and Steve was 17, the two of them had to quickly come up with a plan for Steve. Though he is very smart – ask him any fact about baseball – he needs help performing daily tasks.

As he was entering adulthood, the big questions were: Can he live on his own and where would he work?

“It was a real eye-opener,” Carol said. “I don’t remember there being a lot of time for grieving.”

Now, there is a legislative push to acknowledge a caregiver’s role, specifically when a loved one is admitted to a medical facility. Dubbed the CARE Act, the initiative, spearheaded by AARP of Delaware, will require three specific provisions:

  • When a loved one is admitted to a hospital, the name of the family caregiver will be reported.
  • The family caregiver will be notified if their loved one is discharged to another facility or back home.
  • The caregiver will be taught any new medical tasks that will be provided at home and will be included in the action plan post-discharge.

“It’s really a benefit for the whole system,” said Sheila Grant, associate state director of advocacy for AARP of Delaware. It will help caregivers be more confident as well. “It’s definitely a national trend,” she said.

AARP began lobbying lawmakers and other community partners about the initiative. So far, 18 states have passed similar legislation.

Sen. Bethany Hall-Long, chair of the Senate Health Committee and nursing professor at the University of Delaware, who plans to sponsor the proposed measure, said the legislation will recognize “the value of caregivers.” Most care is delivered in the community and in the home, she said, and caregivers face many stressors.

“It really gives a means to benefit patient care,” she said. “It’s a great initiative. We will certainly want to work with all the hospital associations,” she added.

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