CHICAGO — For more than a decade, Ananias Ocampo pushed a heavy ice cream cart through the streets of the Pilsen neighborhood as he waited for knee replacement surgery. When it got too cold for ice cream, the 78-year-old would go door-to-door selling homemade cheese even though he depended on a walker. “It was a blessing to be able to work,” he said in Spanish.
Even as his pace got slower and he developed Parkinson’s disease, he had no option other than to keep working to sustain himself. Like most undocumented immigrants who are ineligible for the federal Medicare and Medicaid programs, Ocampo did not have health insurance. And though he received care at a public hospital, he had to keep waiting for the surgery. “Pero nunca perdí la esperanza,” he smiled. “I never lost hope.”
In December 2020, Ocampo got a lifeline when Illinois lawmakers passed a new Medicaid-like program that covers low-income residents age 65 and older, regardless of their immigration status. But it was bittersweet. Unlike standard Medicaid coverage for U.S. citizens, the new health care program does not include funding for long-term care facilities like rehabilitation centers, nursing homes and other home and community-based services.
That means that Ocampo — who lives alone and has no family in Chicago who could take care of him after the intensive surgery — would not qualify to stay at a rehab facility as he recovered.
The street vendor decided to go forward with the surgery when Hilda Burgos, 54, a health care advocate, pledged to care for him after the surgery. She rallied community members to donate essentials, and raised funds to ensure that Ocampo had enough money to pay rent.
“Unfortunately, there are many more undocumented elders that live alone, or whose families cannot afford or don’t have the ability to care for them as they age,” Burgos said. “That means that even if they now have better access to health care, many more of their needs to better their quality of life are not addressed.”
Ocampo’s case illustrates the promises and pitfalls in Illinois’ Health Benefits for Immigrant Adults program. As it stands, the program makes critical health services available to a vulnerable population who often leave chronic illnesses unattended due to a lack of insurance, according to health experts. And in May, the program also will be available for unauthorized immigrants age 55 and older.
But the carve-outs for extended care and at-home health care still leave a critical gap in coverage, health experts say, and force the economic and emotional responsibility of caregiving onto undocumented seniors’ families and communities.
That formula could be a problem for Illinois as the number of seniors living in the U.S. without authorization is set to grow exponentially over the next decade. A recent report by Rush University Medical Center and demographer Rob Paral estimates that the undocumented senior population in the state will hit 55,000 by 2030, up from nearly 4,000 in 2017.
Eréndira Rendón, an organizer with Healthy Illinois, said the state and federal governments need to find ways to provide comprehensive health care for this population before it hits crisis levels. That’s because uninsured undocumented immigrants often leave chronic illnesses unattended, leading to overuse of emergency care, which strains safety-net hospitals and ends up costing the state more with higher health care charges overall.
More than 9,000 seniors enrolled in the health care program in its first year — three times as many as advocates had estimated would benefit from the program when they lobbied for the bill in Springfield in spring 2020. “The numbers (of enrollees) show the need of this population often living under the shadow. It also shows the potential crisis that this can cause if this issue is not addressed by our leaders in the state, but also federally,” Rendón said.
Something to be thankful for
Both Ocampo and Burgos said they are grateful for the health care coverage they had prayed for, despite the program’s limitations.
“It’s a blessing for many of us,” said Burgos, who is undocumented and has fibromyalgia, a chronic condition that causes pain all over the body, sleep problems, fatigue, and often emotional and mental distress. When she turns 55 in May, she hopes to become one of the first beneficiaries of the health care program’s expansion, which will give her better and faster access to specialists and acute procedures, she said.
The Health Benefits for Immigrant Adults program grew out of a yearslong campaign by Chicago activists and health care leaders to fill the gaps in health coverage for unauthorized immigrants. Advocates put more pressure on lawmakers to create a program covering noncitizen seniors after the COVID-19 pandemic hit. The virus had disproportionately affected low-income Black and Latinx communities, especially older adults who couldn’t afford to stop working throughout the health crisis.
Illinois was the first state to fully fund this type of health coverage for undocumented seniors. Shortly after, California approved a program to cover adults 50 and older, and Oregon’s governor signed a plan to offer health care coverage to low-income adults over age 19 regardless of immigration status. New York state is on the verge of passing a plan similar to Oregon’s.
By the end of its first year in December 2021, the Illinois health care program had enrolled more than 6,500 unauthorized seniors and about 2,500 legal permanent residents who obtained their green card within the last five years, which makes them ineligible for standard Medicaid.
State data shows the program covers a diverse group of immigrant seniors across Illinois. Enrollees speak more than 40 languages and live in 51 of the state’s 102 counties. But most elders covered under the program are Latinx and live in Cook County. To qualify, they must live in a household with an income below the poverty line (just under $27,000 a year for a household of four).
Doctors, health advocates and the senior enrollees themselves say Health Benefits for Immigrant Adults has been nothing short of life-changing.
Dr. Kimberly Dixon, head of geriatric medicine at Stroger Hospital and Ocampo’s primary care physician, said she recently informed one of her patients — an 80-year-old undocumented woman — that she qualified for coverage under the program. “She burst into tears,” Dixon said. “She didn’t need a knee replacement service. She needed something much more mundane and simple. She needed pull ups because she has urinary incontinence.”
Stories like that of Dixon’s patient abound among the program’s beneficiaries. But lack of funding in the program for long-term care and community-based health services leaves many behind.
“What it means is that (the program) doesn’t provide people with any options if they are not safe at home,” said Padraic Stanley, program coordinator for health promotion programs at Rush University Medical Center. Stanley co-authored the Rush report that estimated the exponential increase of undocumented seniors in Illinois over the next decade.
“So if people are incapacitated to the point where they can’t function on their own to do their activities of daily living like cooking, cleaning, eating, bathing, then essentially there’s no option for them and the family has to basically work around the clock to provide that for the member,” Stanley said. “And if they’re not able to, then that person will inevitably end up in the hospital or severely sick or injured.”
In a written statement, a spokesperson for the Illinois Department of Healthcare and Family Services said the department “would favor members in this population receiving additional home and community-based services.” But the issue comes down to money.
The program cost more than $100 million in its first year, according to state data. Unlike Medicaid, state spending for the program is not reimbursed by the federal government.
The department has projected how much it would cost to provide long-term and home health care services — but it refused to share the data requested by Injustice Watch and the Chicago Tribune in a Freedom of Information Act filing.
State lawmakers and policy advocates said they haven’t seen the numbers the department used to justify the carve-outs. “They told us that it’s too expensive,” said state Rep. Delia Ramirez, chief co-sponsor of the legislation that created the Health Benefits for Immigrant Adults program
But advocates say the cost is well worth it. Research shows that providing primary care for unlawfully present seniors reduces the number of emergency hospital visits, which inevitably get paid by the state or charitable reserves at hospitals and health systems.
“If we don’t spend $100 million on (health care for) seniors who are undocumented, it’s not like the state saved $100 million. If we cut the program tomorrow, those costs are still there. It’s just cost shifting. It’s someone else absorbing those costs,” said Andrea Kovach, a senior attorney at the Shriver Center on Poverty Law.
“(Undocumented) seniors are still getting sick. They’re still having accidents,” she said.
Last year, state lawmakers successfully expanded the program to cover undocumented immigrants age 55 to 64. And last month, Ramirez introduced a bill that would extend Medicaid coverage for noncitizen immigrants ages 19 and older who meet the program’s income requirements. The proposal, dubbed Healthy Illinois for All, would cover nearly 150,000 low-income immigrants who are not eligible for the state Medicaid program, according to the Shriver Center on Poverty Law. (The state already provides health care for low-income children under age 18 regardless of immigration status.)
Ramirez, who is running for Congress this year, said she and her colleagues behind the program are working to get the Department of Healthcare and Family Services to fill in the programs’ gaps for seniors. “We’ve made it clear to HFS that we expect (the carved-out services) to be included as we roll out this next program,” she said.
Picking up where the state leaves off
As state lawmakers work to fill gaps in the program for undocumented seniors, community groups, family members and volunteers try to provide the moral, physical and financial support that institutions and government agencies don’t provide. But looming over them is a demographic bubble that they say will stretch them thin and leave too many seniors behind.
“We need to prepare for this,” said Enrique Jimenez, program director at the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA) in Chicago. “We need to prepare better programming, better outreach efforts and resources for this population because they’re not going anywhere.”
The alliance serves more than 100 seniors with memory disorders and more than 300 caregivers from Chicago and nearby suburbs. Many of the patients and caregivers are undocumented, Jimenez said. The alliance offers leisure programming for the seniors, like karaoke and Zumba classes, and trains caregivers on how to manage the illnesses.
“It can really disrupt the whole family and their quality of life. It’s like a domino effect after the illness is detected,” said the group’s co-founder, Constantina Mizis. “Sometimes those caring for the loved one must leave their job to care for them, which then causes economic hardship and thus more stress and trauma. It’s a family disease.”
Jimenez and Mizis applaud the creation of the Health Benefits for Immigrant Adults program. But as the population they serve grows every year, Jimenez is concerned about the alliance’s ability to keep up. “We are already in need of more resources to serve better and provide more resources to the elders and their families. I worry that as the population grows, we just won’t have enough funding,” he said.
And even though there are several organizations and nonprofits like LAMDA that offer resources to these growing populations, many undocumented immigrants are afraid to seek help because they fear deportation, or due to language and technology barriers.
Instead, many immigrants without proper documentation, such as Burgos and Ocampo, seek and create community with one another, helping to care for each other, find work, pay off debt, and generally look out for each other.
‘If I didn’t stay, who would?’
It didn’t take long for Burgos to notice that Ocampo could barely walk when she met him three years ago as he pushed his ice cream cart around Pilsen. She began accompanying him to all of his doctor’s appointments, eventually helping to land him the long-awaited knee surgery at UI Health. “But it was bittersweet news,” she said.
The surgeons told Burgos and Ocampo that he would need around-the-clock monitoring after the surgery — but the hospital’s social workers told them his insurance didn’t cover the aftercare he needed at the hospital, or any other facilities.
“I didn’t know how, but I decided that I was going to care for him and prayed that God gave me the strength to do it, just like I would care for my son or my father,” Burgos said.
When Ocampo awoke from the surgery in October, she was next to him. “I felt blessed to have someone like (Burgos), to have a whole community that cares so much for me,” he said.
Burgos insisted to his doctors that Ocampo wasn’t ready to go home. “I practically begged them, I explained to them that his home was not equipped to even live there, let alone recover from the surgery,” she said. The hospital relented and kept Ocampo for two more weeks.
Once the two weeks were up, Burgos took Ocampo to his apartment, even though he was still in delicate health. Initially, she didn’t plan to spend the night, but she couldn’t find it in her heart to leave him. She fed him. She bathed him. She cleaned his apartment. And even when Ocampo tested positive for COVID-19 just a few days after coming back from the hospital, she didn’t leave.
“If I didn’t stay, who would?” Burgos said.
Since then, Burgos has helped Ocampos secure new housing by advocating for a new city policy that makes it easier for self-employed workers in Chicago to qualify for affordable housing.
But Burgos said that caring for the beloved ice cream vendor by herself took a toll on her already fragile health. After she cared for Ocampo for nearly five weeks, her doctors advised her to rest.
Ocampo has almost fully recovered from the knee replacement surgery to his right joint, and his surgeon told him that he will be ready for a second surgery as soon as May. But Burgos doesn’t think she can take care of him again.
Unless he gets approved for a rehab facility that would guarantee that a professional can take care of him while he recovers, Burgos said she doesn’t see how Ocampo will be able to get the next surgery.
“If no one can take care of me or I can’t stay in the hospital until I’m able to walk on my own (after surgery), then I just think I won’t get it anymore,” Ocampo said while walking down 18th street on a warmer day in March. “The pain isn’t so bad anymore.”