Lawmakers Eye Help for Caregivers

By Joanne Cleaver

Thirteen years ago, Sherrie Palm suddenly found herself in charge of complicated home care for her mother, then 69, after abdominal surgery.

“It’s a shock factor,” said Palm, 62, who lives in Mukwonago. “She’s finally getting out of intensive care, and they give you a one-page printout telling you, ‘Do this, don’t do that, and here’s the medication list,’ ” she said of the disorienting hospital discharge process. “We felt lost.”

Palm and her father, then 74, scrambled to figure out what kind of equipment they needed to install in the couple’s home to make sure her mother was comfortable and safe. To help her parents manage their evolving health conditions, Palm gained health care power of attorney, so she had the authority to participate in discussions with health care professionals about her parents’ care. So far this year, she has helped manage seven hospitalizations for them.

Palm said what she doesn’t know puts her loved ones at risk. “I was there at the hospital every day, but I didn’t get information unless I asked for it,” she said.

Legislation expected to be considered next year in the Wisconsin State Legislature would address a gap in the health care transition from hospital to home. That is, the lack of information and training that equips family members to pick up where professionals leave off.

The Caregiver Advise, Record, Enable (CARE) Act would require all hospitals to:

• Allow admitted patients to name a designated caregiver.
• Notify the designated caregiver about the patient’s status, especially when the patient is scheduled for discharge.
• Help the family caregiver understand how to take care of the patient at home.

A TRIPLE WIN
Given that the federal Affordable Care Act penalizes hospitals for excess patient readmissions, the CARE Act makes sense, said Elaine Ryan, AARP national vice president of state advocacy and strategy integration.

Ryan, who cared for her own parents for 15 years, noted that the legislation would address care for family members of all ages.
“The CARE Act inspires hospitals to recognize family caregivers as an integral part of the patient’s care team, both in the hospital and at home,” she said.

Supporters say the proposal would be a triple win: The sick would heal more quickly, caregivers would be more confident and competent, and hospitals would have better medical results and face fewer financial penalties when fewer patients are readmitted with complications due to inadequate home care. So far, 32 states and the District of Columbia have passed similar bills.

Wisconsin hospitals already have to note who has medical power of attorney when patients are admitted, and may release clients only to safe environments, noted Helen Marks Dicks, AARP Wisconsin state issues advocacy director.

Although elements of the CARE Act vary from state to state, the Wisconsin Hospital Association has opposed what it describes as a “national one-size-fits-all” bill that is not needed in “a state that has some of the highest-quality health care outcomes in the country,” said Kyle O’Brien, senior vice president of government relations.

Another bill expected to be considered would create a tax credit to offset out-of-pocket expenses that caregivers absorb for travel, equipment, supplies and other direct costs of family caregiving. About two dozen states have passed similar bills.

Wisconsin residents interested in the measures can share their caregiving stories at aarp.org/iheartcaregivers.

Joanne Cleaver is a freelance writer living in Manistee, Wisc.