Sacrifices made: Caregivers for people with disabilities seek increased pay

“It was difficult. We had to leave our families.”

—  Heather Pizano-Olson, a direct support professional at Horizon House in Peru

Around this time last year, Horizon House in Peru asked for caregivers to volunteer to provide around-the-clock, live-in care for its clients to keep them safe from COVID-19.

Heather Pizano-Olson, a direct support professional at Horizon House, and her caregiver colleagues left their families for weeks at a time to care for adults with disabilities. Horizon House manages homes where many individuals with disabilities live under the same roof and receive help with daily life.

Pizano-Olson participated in three live-ins throughout the last year, with she and her colleagues trading time with their families over Mother’s Day, Thanksgiving and Christmas to make sure those they served were safe.

“It was difficult,” Pizano-Olson said. “We had to leave our families, and I know a lot of the staff wanted to do it, but some of them just couldn’t because of younger children.”

The caregivers slept on air mattresses and alternated day and night shifts, sleeping when they could. Their efforts and sacrifice were effective in keeping Horizon House residents safe from COVID-19, as the facility was free of any outbreaks and had just a few cases that resulted from non-live in care.

“We knew how important it was to make sure they were safe, because if you get one case in a home it wouldn’t have just been one case, it would have been dealing with an entire house and everyone has COVID,” Pizano-Olson said.

Much of the caregiving work is being done for pay just above minimum wage. The median wage for the caregivers, also called direct support professionals, in Illinois is $12.04 an hour. Some caregivers work 40 hours a week and take on a second job to make ends meet.

Senate Bill 2335 was introduced by state Sen. Celina Villanueva, D-Chicago, and House Bill 2752 was introduced by state Rep. Robyn Gabel, D-Evanston, to secure state funding to raise the caregivers’ wages by $2 an hour by July 1. Supporters want the bill to ensure extra funding is used only for wages. The bill has been referred to a rules committee.

The caregivers provide a variety of services to individuals with intellectual and developmental disabilities. The needs of these individuals can range from grooming, dressing, eating, job coaching and more.

In Illinois, more than 27,000 people live in congregate living facilities such as Horizon House, and rely on caregivers to enhance their quality of life and assist them in living as independently as possible. Friendship House in Ottawa, Streator Unlimited and Gateway Services in Princeton perform similar services.

The work staff members provide is essential for those in need and can be physically demanding and emotionally draining, Pizano-Olson said.

A developmental disability services study commissioned by the state of Illinois in 2018 found direct-care staff wages should be maintained at 150% of the minimum wage for providers to remain competitive in hiring and retaining staff.

The study’s recommendation was that additional funding should be allocated for the use of residential and non-residential wages and benefits.

Meg Lewis, the director of special projects for the American Federation of State, County and Municipal Employees, a public employee trade union, helped serve as a bridge between lawmakers and caregivers.

“The problem is the wages that are paid,” Lewis said. “If the agencies can’t pay people and the agencies have huge turnover and vacancies rates, often 40 or 50%, it impedes the ability for individuals to get care in the communities.”

Lewis said that the state is under a consent decree to show it is making progress to improve the lives of people with disabilities and those who serve them.

When the pandemic hit, that meant making sacrifices, Pizano-Olson said.

The clients the caregivers serve were no longer allowed to work, go shopping, go out to eat or interact with people outside of the home. They depended on their caregivers to stay with them and keep them safe — and the team at Horizon House fulfilled that obligation.

“At the beginning of the pandemic, we kind of shut everything down, which was great because it really helped us make sure the people we serve stayed safe,” Pizano-Olson said. “But they had to quit doing everything that they used to do.”