New Caucus Focuses on Issues Faced by Caregivers

Amy Brennan’s path to becoming a caregiver advocate started as her mother was battling lung cancer.

Brennan, 55, was working a demanding job at a large bank in Chicago. It was “a gift and an honor” to care for her mother, Brennan says. But it also led to challenges at work.

She recalls a manager who was “woefully unsupportive before, during and after my mother’s illness.” While she was able to take a leave of absence, she says she faced a team that didn’t understand or care what she was going through. People were more worried about the work piling up on their desks.

Today, Brennan leads the Illinois Family Caregiver Coalition, which is teaming up with AARP to launch the Illinois Caregiving Caucus this year; it aims to educate on and advocate for policies to enhance the quality of life for people as they age.

They’ll be joined in the effort by the Illinois Area Agencies on Aging. The caucus is part of AARP Illinois’ efforts to help individuals prepare for and manage the significant challenges that caregiving can bring.

A focus on legislative change

When Brennan was tending to her mother, she didn’t even consider herself to be a caregiver — just a daughter who was helping her mom. “Now, I realize many caregivers feel the same way,” she says. “We think we’re on the journey alone.”

It was after her mother died that Brennan looked for ways to help caregivers see they in fact weren’t on the journey alone. She landed jobs with the Illinois Department on Aging and then the state Department of Veterans Affairs, both as legislative director. And when the Illinois Area Agencies on Aging in 2021 needed an executive director for a new statewide caregiver coalition, Brennan got the gig.

Now, she’s looking forward to helping the new Illinois Caregiving Caucus drive change at the state Legislature. “By supporting the caregivers, we are supporting their loved ones — family members and the care recipients — to reduce stress in their everyday lives,” Brennan says.

Courtney Hedderman, an AARP Illinois senior associate state director for advocacy and outreach, says AARP’s main role with the caucus will be to act as a convener.

“We know who those policymakers are, those champion legislators. Now, let’s just bring them together,” says Hedderman. She expects that the caucus will meet at least on a quarterly basis.

Hedderman says one bill some members of the caucus — including AARP — are pushing is a state income tax credit to help reimburse caregivers for their out-of-pocket expenses. A caregiver tax credit is on the agenda in several other states, and a comprehensive credit has passed in two. Research by the AARP Public Policy Institute says Illinois has 1.3 million family caregivers — and in 2021 they provided $21 billion in unpaid care.

The caucus will focus on other issues as well, including workforce retention in long-term care, enhancing support for caregivers, safeguarding the quality of care and rights of nursing home residents, expanding home- and community-based services, exploring housing options for older residents, and defining how Illinois can become an age-friendly state.

Getting a 'seat at the table'

Taken together, the caucus says its goal is to “advocate for legislation and actions that make a tangible, positive impact on the lives of older adults across Illinois.”

Lori Hendren, an AARP Illinois senior associate state director for advocacy and outreach, says that the state’s caregivers “need to have a seat at the table when we talk about policies that affect their lives.”

“And it’s just not about passing laws,” she adds. “It is going to be empowering family caregivers and empowering lawmakers with those stories for positive change, as caregiving is a very personal issue.”

John Straus, an AARP volunteer who is working on the caucus, says that caregivers and their concerns need visibility.

“Things in the legislative world — if you don’t spotlight them, they just tend to slip away,” says Straus, 73, who lives in Evanston. “Legislators deal with priorities, and if you don’t bring it to their attention and tell them it’s a priority, they’ll find something else that is an equal priority.”

Frederic J. Frommer has worked as a journalist for more than 30 years, including 16 years at The Associated Press, and is the author of several books.

Also of interest:

• 12 Ways for Caregivers to Deal With Their Toughest Days
• AARP CEO's Visit to Florida Caregiver Underscores Importance of Caregiving Legislation
• The 10 Most Common Complaints From Family Caregivers