Federal fallout
As federal funding and systems dwindle, states are left to decide how and
whether to make up the difference.
Among the many people whose health care could be in jeopardy from possible Medicaid cuts, one group may be even less visible than the rest.
For elderly residents as well as children and adults with disabilities whose health care is covered by Medicaid, family members who help with their care will also be affected by the proposals coming from Republican members of Congress.
“Medicaid is the primary thing that supports family caregivers,” said Tami Jackson, policy analyst for the Wisconsin Board for People with Development Disabilities (BPDD), in a presentation to social workers Thursday in Dodgeville.
The person under the caregiver’s care could be living at home, but will probably still require long-term support of some kind — support covered by Medicaid, Jackson said. Medicare provides coverage only for a limited time, such as when a person has come home after being hospitalized.
Private long-term care insurance plans “are unaffordable and they have not been workable for many years,” she added. “So Medicaid is it — and we happen to have a lot of people who need long-term care.”
Jackson and Janet Zander of the Greater Wisconsin Agency on Aging Resources met with Iowa County social workers in Dodgeville Thursday to explain the likely effect of Medicaid cuts that are part of the budget reconciliation bill that has passed the U.S. House and is now in the Senate.
The GOP majorities of both houses want to pass the legislation so they can extend tax cuts enacted in 2017, when President Donald Trump was in his first term. Those tax cuts have been found to heavily benefit wealthy Americans. Without action they will expire at the end of 2025.
Cutting Medicaid, hiking other costs
Medicaid is the single largest source of federal funds in the state budget — about $9 billion a year.
Under the U.S. House version of the budget reconciliation bill, the Wisconsin Department of Health Services (DHS) has projected between 71,000 and 111,000 Wisconsinites would lose Medicaid coverage, including more than 3,800 people with disabilities and 2,400 older adults. The state’s federal Medicaid revenues would be cut by $501 million to $663 million.
The Medicaid cuts on the scale of those in current iterations of the bill “are too large to not cause states to have to cut many things in their state budget,” Jackson said.
The bill’s Medicaid cuts as well as changes it would make to the Affordable Care Act’s health insurance marketplace — including ending subsidies that have made marketplace plans more affordable for lower-income people — would increase the number of uninsured Americans by 16 million in the next decade, according to the Congressional Budget Office.
“Whether you’re a caregiver, whether you’re on Medicaid, whether you’re working for somebody who’s on Medicaid,” everyone will be affected by 16 million more uninsured people, Zander said.
With more uncompensated care for hospitals and providers, she predicted that the cost for other payers will increase.
“We’re going to see premiums for any kind of [health] insurance skyrocket — the employer’s portion, the employee’s portion,” Zander said.
Reduced Medicaid care, more unpaid care
Family caregivers feel Medicaid’s impact in several ways. For many people who are elderly or have disabilities it enables them to get paid, professional care at home. If that care is cut back, that means more work for the unpaid family member.
“Those paid caregivers — they’re paid for by Medicaid dollars and there aren’t enough of them. There haven’t been enough of them for years,” Jackson said.
If Medicaid cutbacks reduce the pay for those caregivers, the workforce that is already underpaid is likely to be even harder to find — making access to paid care even more difficult, she added, to the point where “it’s either the unpaid caregiver or nothing.”
Family caregivers who take on more unpaid care responsibilities may have to cut back on their own paid jobs.
“The amount of people who are reducing, limiting [work hours or] leaving the workforce because there isn’t a stable, paid caregiving workforce to provide what they need is huge,” Jackson said.
A BPDD survey found that for unpaid family caregivers in Wisconsin providing or coordinating care or filling in for missing care workers took 80% of their time. Two-thirds said caregiving had a negative impact on their family finances and 50% said they left jobs or reduced hours to provide care because there were no care workers to hire.
Unpaid caregivers who leave the workforce not only lose income but reduce the earnings that contribute to their Social Security retirement, Jackson said.
Kristin Voss, a Madison public school teacher for 24 years, had to retire to help manage and care for her 23-year-old daughter. Her daughter has epilepsy, autism and an intellectual disability and “functions at about anywhere from 6 to 12 years old,” Voss said in a panel discussion that was part of Thursday’s presentation.
Until her daughter was 21, she was entitled to public education, where she got “tons of support” including in her transition period that started when she was 18, Voss said. At 21, those supports were no longer available, however.
Her daughter enrolled in the state’s self-directed long-term care program called IRIS. The program includes a caseworker, but Voss also has responsibility as her daughter’s family caregiver, helping to manage day-to-day changes in her daughter’s placement and activities.
“I don’t mind doing these things, but there’s things that I don’t always know about and I’m not always prepared for,” Voss said. “And so, no, I couldn’t do this and be a public school teacher.”
Instead, she has put together a collection of part-time positions that give her flexibility that she needs — although none of them have health insurance, Voss said.
Unpaid caregivers ‘untangling the mess’
Some unpaid caregivers who leave the workforce may also turn to Medicaid for their health coverage because they can’t afford health insurance or work at a job that doesn’t provide insurance.
“About 4 million people nationally are unpaid caregivers who are in Medicaid themselves,” Jackson said.
Among the changes proposed for Medicaid is a requirement for participants in the program to prove every six months that they are still eligible for the program, instead of once a year, the current standard. Another change proposed is to add a work requirement for certain Medicaid participants.
Both of those changes will mean more paperwork. “Unpaid caregivers are the folks that are keeping people who are in Medicaid programs already,” Jackson said — by filling out the forms that are required to prove the person is still eligible.
“Often these processes are so complex,” Jackson said. And when something goes wrong, because of an error in an eligibility form or a billing mistake, family caregivers “are the people who are untangling the mess.”
The current version of the bill in the Senate gives caregivers an exemption from the work requirement — but Jackson said the definition has raised concerns.
The current proposal limits the exemption to people who are caring for a person under the age of 14. National advocates have said that “really narrows that caregiver exemption and doesn’t quite fit with the reality that most unpaid caregivers are providing care for people with disabilities and older adults,” Jackson said.
Including exemptions in the proposed work requirement provisions also doesn’t necessarily reduce the paperwork.
“You either have to prove you’re meeting the work requirements, or you have to prove that you’re exempt for those requirements,” Jackson said. “And if you’re a caregiver who’s in Medicaid, you have to do that for yourself and probably the person you’re supporting.”