En español | It's been another strong year of progress for AARP's initiative to get the Caregiver Advise Record Enable (CARE) Act enacted nationwide, with three additional states — Tennessee, Iowa and North Dakota — adopting the measure that helps family caregivers provide services that their loved ones need to continue to live independently. As of Aug. 1, 43 states and territories have enacted CARE, and it's under consideration in Wisconsin.
"It's been a remarkable journey and it is not over,” says Elaine Ryan, vice president of state advocacy and strategy integration for AARP. “There's nothing better than seeing the picture of the governor in Iowa with all of our caregivers and volunteers behind her signing the CARE Act into law. That's when advocacy becomes real for people."
The initiative, started by AARP in 2014, supports America's 40 million caregivers as they help loved ones enter a hospital and, after treatment, transition home. The law is not age based; it applies to patients of all ages and care providers of all types, including concerned partners, neighbors, even teenagers.
The CARE Act requires hospitals to:
- Ask each patient if he or she wishes to name a family caregiver.
- Record the name of the family caregiver on the medical record of the patient.
- Inform the family caregiver before their loved one is to be discharged.
- Provide the family caregiver with education and instruction on the medical or nursing tasks he or she will need to perform for the patient at home.
Prior to the law's enactment, family caregivers may have been asked to perform complex medical or nursing tasks without instruction or given little to no advance notice of a hospital discharge.
After five years of crisscrossing the country working with AARP state offices and volunteers to lobby for the law, Ryan says it is “transformational” to see some hospital systems like one in Mount Kisco, New York, finally recognize caregivers as part of a patient's overall health team. That includes adding caregivers’ names to the hospital whiteboard along with nurses and doctors, providing hospital badges and even creating a spot for caregivers to meet and share issues.
But there is more work to be done, Ryan says.
"We're also exploring the idea of creating an incentive for hospital systems to include the CARE Act as a part of their quality measurement system,” she says. “So, it's not only whether they've checked the box on [enacting the measure], but that they could get credit for being able to implement the CARE Act. If we can embed it into a quality rating system, it becomes embedded into that hospital practice."