A bill to bolster home caregiving efforts by lending uniformity to hospital discharge guidelines across the state was among the issues discussed at Tuesday’s Aging Committee public hearing.
The CARE Act — Caregiver Advise, Record, Enable — would require hospitals to provide each patient with the opportunity to designate a person as a caregiver upon admission, to notify each designated caregiver when the patient is discharged from the hospital, and to provide the designated caregiver with instructions on how to provide care for the patient when the patient returns to his or her home.
Senate President Martin Looney, D-New Haven, joined a Tuesday morning press conference with legislators and representatives of AARP and the Connecticut chapter of the Alzheimer’s Association to tout the bill.
Looney cited the lack of a uniform standard for hospitals and rehabilitative facilities across the state when it comes to supporting caregiving efforts.
“Sometimes information is provided, sometimes it’s not. We hear often from caregivers that they are somewhat at a loss all of a sudden, having to care for the needs of the recently discharged patient. So discharge planning is something that is better in some places than in others. This will help to create a better, uniform standard,” Looney said.
Jean Horn Caron, an advocacy volunteer with AARP, cares for her 95-year-old mother. Caron said during the public hearing that she received little guidance when her mother came home from a nursing home following a massive heart attack.
“Those first few months after her discharge were incredibly stressful since it seemed that so much was suddenly expected of me,” Caron said. “Within a year of taking on my mother’s care, my own health started to decline.”
AARP Connecticut Director Nora Duncan said the legislation is a no-cost way to help reduce expensive hospital readmissions and to ease the burden on caregivers.
“Many caregivers are on call 24/7. They’re unable to take a break. They’re often required to perform complex tasks such as injections, wound care, medication management — things that the average person’s not trained to do — and it puts a lot of stress on the caregiver. It impacts their own health and it can result a lot of times in lower quality outcomes, including being readmitted to the hospital,” Duncan said.
The economic impact of caregiving efforts carried out by almost 500,000 people across the state is estimated at $5.8 billion, according to the Legislative Commission on Aging.
Sen. Kevin Kelly, R-Shelton, a ranking member of the Aging Committee, said during a Tuesday press conference that the bill would make it easier for people who cannot care for themselves to remain at home with their loved ones.
“As we age, we all want to age in place. But I don’t believe we can do that without a champion in the community that’s going to help us. The caregiver represents that champion,” he said.
Kelly said those caregivers are saving the state money, as they “help us balance our budget and not seek state funding.”
Gerontologist, support group facilitator and certified dementia practitioner Pamela Atwood testified based on experience gained both professionally and personally.
“I’ve worked in the field of aging for 25 years,” Atwood said. “I’ve always been passionate about caring for people with Alzheimer’s and related dementias because three kinds of it run in my family, including younger-onset Alzheimer’s. My cousin was diagnosed last year at the age of 57.”
Atwood said measures such as the CARE Act are necessary because privacy protections outlined in the Health Insurance Portability and Accountability Act have made it difficult for caregivers to access medical information about their loved ones. Yet the patients themselves, due to their medical conditions, may be unable to convey or retain necessary information.
“My 57-year-old cousin, Pat, looks like any other middle-aged female,” Atwood said. “If she becomes sick and goes to the emergency room, people may not think she needs a caregiver. In fact, she might put down her mother as an emergency contact.”
But her mother died in November 2013, Atwood said: “Pat doesn’t remember that.”
Connecticut Legal Rights Project lawyer Sally Zanger said during the public hearing that she would like to see a definition for “caregiver” included in the bill, along with wording to ensure that the act does not conflict with established law governing advance directives for health care. An advance directive gives people the opportunity to record their treatment preferences and to authorize someone else to make decisions if they can no longer do so.