According to 2024 estimates by the Centers for Disease Control, nearly 30% of people in the U.S. live with a disability. As such, it’s likely you know someone who lives with a condition that makes “independent living” more difficult, if not impossible. This would include a senior who needs assistance at home; a neighbor who is having health challenges; your mother, father, grandparent, aunt, or close family friend; or, perhaps, even yourself.
And if they’re (or you’re) having a difficult time and in need of help to take care, your loved one (or you) is likely in need of a caregiver, or perhaps already has one. A 2025 report from AARP and the National Alliance on Caregiving found that roughly one in every four U.S. adults is a caregiver.
While people of all ages deal with significant medical challenges, aging increases the risk of certain disabilities. By 2030, all baby boomers (the largest population segment in the United States) will be 65 or older, which will put greater demands on public health systems. And the Census Bureau’s 2024 population estimates reveal that Illinois is home to almost 3.1 million people aged 60 and over; these residents make up nearly a quarter of the state population. Not surprisingly, the 2025 Respite Services Report, developed by the Illinois Department on Aging (IDOA), observes that “demands for home and community-based alternatives to nursing facility care will continue to increase.”
Because Medicare doesn’t pay for long-term care in a nursing home, many residents are forced to spend down their assets to live there. While many people receive at-home care from friends or family members, most of these caregivers are unpaid. According to the 2025 AARP report, only 11.2 million of 59 million family caregivers receive pay for even a portion of the care they provide. However, the Illinois Department on Aging and the Illinois Department of Human Services sponsor programs that allow family members and friends to apply to become paid caregivers or “home care aides” for loved ones. Agencies can also select a trained professional home care aide to support those seeking help, with their input and approval. Home care aide duties include cooking, cleaning, washing clothes, and companionship; what they do depends on the client’s needs. In most of these programs, family and friends who seek to be hired to provide home care undergo background checks and training for these positions, just like professional aides.
This was the choice I made, with my family’s approval. I am currently a caregiver and paid home care aide for my 86-year-old mother, Queen, through Addus Homecare. In addition to caring for my mother, I am an individual provider for a family friend with disabilities; my schedule is flexible, so it works out. I have two sisters, and we share the responsibilities of taking care of our mom. We realized about five years ago that her health was changing, and we could see she was needing more help. My sister works with seniors and is familiar with IDOA, so we contacted them and began the process of getting her services. We all work full-time and have our own families, but we have set a schedule for every day of the week so someone can be with her most of the time, to make sure she eats and takes her meds. We perform household chores as well, and make sure my mother gets to doctor’s appointments, church, and other events she wants to attend. In addition to myself, my mother has another paid home care aide who comes Tuesday and Thursday mornings.
Thankfully, all of us are on the same page as far as her care and safety. And my mother is happy being at home and is comfortable and independent enough to do what she wants. But being a caregiver can be stressful, time-consuming, and mentally exhausting.
Research has shown that caregiving can take a toll physically, mentally, emotionally, and financially on a person. Also, our health may decline because of our duties and commitments. The 2025 AARP report found that 47% of family caregivers reported at least one negative impact on their finances, such as stopping saving or taking on more debt, and 23% reported it was difficult to take care of their own health as a result of caregiving. Seven in ten working-age family caregivers are employed, but many face disruptions and lack access to benefits that support caregivers—especially the over 80 million hourly wage workers in the United States.
Families like mine face hard situations because of this limited support. I spoke with Kim Sims, whose father Sylvester was diagnosed with Alzheimer’s. Even though she was working a full-time job, Sims became her father’s official caregiver in 2019. After taking care of him for three and a half years at home, Sims said that as his health declined, it was getting to be too challenging for them to keep him at home. They prayed about it, and decided to place him in a nursing home in June 2023. “It was so stressful…I really don’t understand how we made it, because you’re pretty much locked down, you know? And then I was still trying to work.”
After her father stayed at the facility temporarily, while she and her daughter took a well-deserved vacation, he didn’t want to come home when they came back. Her father’s comfort in his new home was a huge relief for Sims and her daughter, Jasmine, and they took it as a sign to try out the new living arrangement. They did not make the decision lightly, however, as some family and friends did not approve of their choice. “We were really trying as hard as we could to do everything right for him, and we were being judged horribly. It hurt so bad,” she said.
They were satisfied with her father’s care for some time. Unfortunately, after a couple of years, Sims felt that the services at the nursing facility were beginning to deteriorate, so she moved him back into her home in January 2026. Her father is now in a hospice program, and his granddaughter has applied to be his paid caregiver through the Assyrian Cultural Foundation, which runs a home care agency that provides services in the IDOA’s Community Care program.
Kay McInnis, who lives in suburban Matteson, has been a caregiver since 1990. Over the last three decades, she has cared for children and adults with disabilities, elders, her sister, and her brother-in-law. Currently she is hired by clients’ family members, rather than working through an agency, and she was a paid caregiver for her sister, but she has also experienced being an unpaid caregiver, when she took care of her brother-in-law. “I had a full-time job, and after work I would go by and see him. I knew about the state caregiver programs, but again, I was working,” McInnis said.
When asked what she enjoys about being a caregiver, McInnis replied, “I have always been a caring person and enjoyed taking care of people even when I was a small child. I like helping others in any way I can.”
“Being a caregiver is not for everyone,” she said. “You have to have compassion, patience, and be reliable.”
HOW CAN HELPERS FIND HELP?
To start, your physicians, friends and family members, churches, and social services organizations may be important resources. But state and city government agencies offer specific services to support seniors, people with disabilities, and their caregivers—including some that enable family or friends to be paid for care they provide.
In Illinois, there are state and federally supported programs to assist seniors and people with disabilities to continue to stay in their own homes, with the support of caregivers. These programs include the Community Care Program of the Illinois Department on Aging (IDOA) and the Home Services Program of the Division of Rehabilitation Services (DRS) within the Illinois Department of Human Services (IDHS). However, to qualify for these services, generally participants must have less than $17,500 in assets,and also be Medicaid-eligible—in 2025, this meant the maximum monthly income was approximately $1,366 for an individual (around 138% of the federal poverty level).
DRS provides services for residents under 60 with special needs or disabilities. Through the Home Services Program, clients are provided with personal assistants or “homemakers.” In addition, eligible Illinois residents can receive home-delivered meals and home health services, along with other options to support their independence. To apply, go to the DHS website (dhs.state.il.us) or call (877) 581-3690.
For residents over 60, information about state-supported services can be found on the IDOA website (ilaging.illinois.gov) or by calling (800) 252-8966. By searching my zip code in IDOA’s online service locator, I found the office of the local organization that coordinates the Community Care Program in my area and was then able to speak to an administrator and biller about potential services. Like me, other family members of people living with disabilities approach IDOA for help, and when they connect, they are asked basic information about their loved one and their conditions before a case manager is assigned to them. If your income is too high to qualify for CCP, you may be able to get at-home services through Illinois’s Health Benefits for Workers with Disabilities (HBWD) program, which allows higher income limits (350% of the federal poverty level) for people who are employed.
After an initial conversation, it may take several weeks for a case worker to visit your home to assess what your loved one’s needs are. During the visit, a case manager will gather the most important documentation for the person who needs care, including their Social Security card; their state ID or driver’s license; a list of their current medications; their insurance card; and recent bank statements, to prove they meet income requirements. After everything is processed and the care recipient’s application has been approved, a list of agencies that connect people with caregivers and other resources is provided.
In an interview with the Weekly, Mary Killough, Director of the Illinois Department on Aging, stressed the importance of the Community Care Program. “We provide in-home services, and that service is provided by agencies that contract with the Department on Aging, and those agencies hire caregivers to work for individuals in their home.” Besides offering services for people in need of care, the IDOA also has resources and support programs for caregivers. When asked why some people are not familiar with these programs, Killough said, “Most people don’t think about aging services until, frankly, you need them…There’s usually some intervening event, usually a hospital stay or something, and I think there’s just a natural disconnection between the hospital discharge planners and understanding what other social elements are there to keep people in the community.” Killough encouraged everyone to consider IDOA as a resource. “Even if you don’t qualify for [the Community Care Program], you may be entitled to receive referrals for other services,” she said.
Finally, the city of Chicago offers some resources as well. For people with disabilities, the Mayor’s Office for People with Disabilities has an Independent Living Program, and the Department of Family and Support Services offers some programs and support services for caregivers of seniors, including support groups, training, and respite care.
Pachina Fletcher is a freelance journalist and a Documenter for City Bureau. She is a member of the Chicago Journalists Association. She last wrote for the Weekly about Pullman and Roseland for the 2022 Best of the South Side issue.