-
Marlee Stefanelli with
her children, Matthew (who has Type 1 diabetes) and
Isabella.
Courtesy Marlee
Stefanelli
Medicaid, a federal and state program that insures 74
million Americans, faces funding cuts under the Republican
health care plan. -
People with children and parents who depend on Medicaid
funding are worried.
-
Business Insider spoke to a pair of moms — with
diabetic and autistic children — who’ve become more politically
active to protest the Republican effort.
When Marlee Stefanelli’s son Matthew was diagnosed with Type 1
diabetes, she didn’t know she could use Medicaid to cover some of
the costs of his treatment.
Medicaid is usually thought of as an insurance program for the
poor, and Stefanelli’s family has health insurance, which they
bought from the Affordable Care Act’s insurance exchange in
Pennsylvania.
But while Stefanelli was at the hospital, a social worker told
her about PH-95, a program in Pennsylvania that covers medical
expenses for children regardless of their parent’s income. It’s
funded by Medicaid.
Stefanelli estimates the program covers about $1,800 worth of
Matthew’s expenses — which can include insulin, blood glucose
monitoring, and hospital visits — a month.
Her son’s type of diabetes is
incurable, and the idea that this coverage might be cut —
which would put her son’s insurance at risk both now and once
he’s an adult — has turned her into a political activist.
“Everything is in jeopardy,” Stefanelli said.
A backer of Bernie Sanders in the Democratic primary and a
supporter of Hillary Clinton in the general election, Stefanelli
says she became more politically active after the 2016 election.
She’s now president of a group called Action Together
Northeastern PA and is organizing other people who depend on
Medicaid.
They protest in Pennsylvania and call their representatives
almost daily. The objective, in Stefanelli’s case, is to get
Republican Rep. Tom Marino and Republican Sen. Pat Toomey to
understand that their party’s plan to cut Medicaid funding as
part of an effort to replace the ACA, the healthcare law better
known as Obamacare, would leave her child in a lurch.
If cuts to Medicaid funding left her without the nearly $22,000 a
year in coverage she depends on, she would be forced to leave the
business she runs with her husband and find a new job with the
aim of getting better coverage. Longer-term, the worry is what
Matthew would do once he’s no longer eligible for Medicaid as a
child. A complicating factor is that diabetes is considered a
preexisting condition that under some proposals could let
insurers deny him coverage.
The cuts wouldn’t just affect children. Others in Stefanelli’s
group are there because their parents rely on Medicaid to cover
their stay at a nursing home or on coverage they gained through
Pennsylvania’s Medicaid expansion. The concerns are playing out
across the country as Republicans debate their healthcare plans —
and states that depend on Medicaid to provide programs for
children or for elderly people are facing cuts to their budgets
and the hard choices that would follow.
The Senate Republican healthcare bill, the Better Care
Reconciliation Act, would cut Medicaid spending by
$772 billion by 2026, according to the nonpartisan
Congressional Budget Office. A plan that passed the House of
Representatives in May would deepen those cuts to
$834 billion. On Thursday,
the Senate released an updated version of the bill. While
there are some revisions to how the bill tackles Medicaid, the
cuts are still in place.
What’s on the line in Pennsylvania
Rebecca
Zukauskas with her husband and their daughter,
Mia.
Rebecca
Zukauskas
Another Pennsylvania mom in the group is Rebecca Zukauskas. Her
4-year-old daughter, Mia, was diagnosed with autism in August.
Like Stefanelli, Zukauskas was told she qualified for Medical
Assistance, another name for Pennsylvania’s Medicaid
program, even though she has insurance. The additional help
covers the cost of her daughter’s weekly speech-therapy meetings
that her insurance wouldn’t cover, along with other services that
help her child in school.
For Zukauskas, the concerns are less about the financial burden
her family might face and more about her daughter’s access to
services.
For example, Zukauskas said Mia had to have Medicaid before she
could get a therapeutic support staff member for school. The
staff member works with Mia one-on-one to make sure she stays on
track and focused at school. If Mia lost Medicaid coverage, her
access to the TSS member could be in jeopardy as well, along with
the additional speech-therapy session she attends to help Mia
communicate.
Right now, Mia attends a school that has a mix of children with
disabilities and those who are otherwise healthy. The school also
receives Medicaid reimbursements, which could put it in a tricky
situation if funding were cut. Ideally, Zukauskas said, the hope
is for Mia to attend a more traditional school, but if some of
these programs she relies on were cut — and the services went out
of business — it could make it harder to get the communication
skills she would need to thrive there.
“I would love to have her go to college and be as independent as
possible,” she said.
Zukauskas voted for Clinton in the November election, and since
then she has been calling her US representatives, including
Toomey and Rep. Lou Barletta, as well as calling her state
representatives about a bill at the state level that could affect
her coverage through PH-95.
Cuts to the services her child needs have already started to play
out in Texas, where the
state cut $350 million in Medicaid funding for occupational,
physical, and speech therapy. One family
interviewed by The Associated Press said they watched their
daughter with a rare genetic disorder regress after her
occupational therapist (a professional who helps people navigate
everyday activities) went out of business.
And policy experts think PH-95 would be a prime target for cuts.
“Older adults and kids with disabilities — that’s where the
bull’s-eye is going to be in terms of cutting,” Leonardo Cuello,
the director of health policy at the National Health Law Program,
told the Pittsburgh Post-Gazette in May.
Rachel Kostelac, press secretary for Pennsylvania’s Department of
Human Services, told Business Insider in an email that by the
department’s interpretation, under the BCRA PH-95 wouldn’t be
subject to the per capita cap. That’s not the case under the
American Health Care Act, the
bill the House passed in May.
As far as what could receive cuts to funding, programs that
support “optional populations” would have funding cut before
coverage to “mandatory populations” happens.
“Pennsylvania will be reviewing options to address any federal
funding decreases caused by implementation of per capita caps
under the proposed federal legislation,” Kostelac said. “Changes
to optional services and optional populations as well as
additional state revenues to address the reduction would be
explored before looking at changes to mandatory services and
populations.”
PH-95 has been in place since 1988 to provide benefits to
children who are considered disabled by the state. Currently, the
law has a “loophole”
that allows it to cover children regardless of their family’s
income. When the child turns 18, however, they would have to
reapply based on the
adult disability qualifications.
Medicaid covers more than 74 million Americans, including
low-income people, families, and kids, as well as pregnant women,
people with disabilities, and elderly people, so it’s possible
that any of those groups could see some cuts to their coverage.
But that uncertainty has made the past few months nerve-racking,
Stefanelli and Zukauskas said.
What the cuts to Medicaid would mean
The BCRA sets up some major changes to Medicaid. First, it would
roll back the expansion created through Obamacare that allowed
states to provide health insurance to more low-income people. For
states that opted into the expansion, people whose household
incomes were up to 138% of the federal poverty level could
qualify for coverage.
Under the BCRA, that expansion would be phased out, meaning those
receiving coverage through the expansion could be without it once
again, though
they could access coverage through the individual insurance
market. Pennsylvania was one of the 32 states that opted into the
Medicaid expansion.
Andy Kiersz/Business Insider
The BCRA also would change federal funding to Medicaid to a
per-capita structure — meaning the federal government would send
states a fixed amount of money per Medicaid enrollee in the
state. That’s different from how it is now, where the federal
government helps cover enrollees based on how much their care
costs, which can vary by person. In all, the per-capita structure
would leave states with less funding than under the current law.
For children covered through the Children’s Health Insurance
Program, a program for children whose family’s income is too high
to qualify for traditional Medicaid, these changes in funding
wouldn’t apply, nor would the federal funding change for children
who are blind or have other disabilities, Christine Eibner, a
senior economist at the RAND Corporation, told Business Insider.
Even so, Pennsylvania could face an 18% reduction in Medicaid
funding by 2026 under the Senate’s bill, according to the
healthcare consulting firm Avalere.
Andy Kiersz/Business Insider
How exactly that would play out among all the different people
who rely on Medicaid — including children who are part of the
program — is unclear. But there would be some core changes to how
children are covered.
“You just don’t know what conditions are going to be,” Sara
Rosenbaum, a professor of health law and policy at George
Washington University, told Business Insider. “It’s anybody’s
guess how they would be hit.”
There’s the possibility that the kinds of conditions that would
qualify a child for Medicaid might be more restricted to make up
for the funding cuts. So children with conditions or disabilities
that would be considered less severe — Rosenbaum gave a
hypothetical example of a child in remission from cancer — might
no longer have their medical bills covered in favor of coverage
for a child who has a condition or disability considered more
severe.
For perspective, here’s a look at all the people covered by
Medicaid. The program covers 39% of all children and 60% of those
with disabilities.
Diane Yukari/Business Insider