Medicaid Cuts and Special Needs Children Erika Park
Designed at the School of the Art Institute of Chicago for Design Thinking for Social Change in Spring 2020 under the guidance of Annie Leue. ABOUT THE PROJECT: Students were to choose a social issue, find information and sources, and propose a design solution that makes measurable progress. Seeing the effects of Medicare disability cuts in person through my sister has inspired me to choose this topic, in efforts to spread awareness to those who may not be familiar with this issue.
SUMMARY
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MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
Erika Park
PROBLEM STATEMENT + GOAL
Medicaid Cuts and Special Needs Children
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people with limited income. Out of those 74 million people, 6.2 million are children who have special health care needs. Medicaid is extremely helpful for this group, as it gives
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States. It is a program that helps with medical costs for
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
Medicaid helps more than 74 million people in the United
PROBLEM STATEMENT + GOAL
SUMMARY
SUMMARY
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them access to treatments and services that they would not be able to afford otherwise. Due to the recent budget cuts to Medicaid, children with disabilities are experiencing a reduction in medical services. These budget cuts are taking away basic care needs from those who truly need help the most and are dependent on this program. It is extremely difficult to change government funding decisions. However, if we spread awareness about this issue and open up conversations, we can make a difference by coming together and fighting for those who cannot fight for themselves.
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care needs and are dependent on
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in the U.S. have special health
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
As of 2017, 6.2 million children*
PROBLEM STATEMENT + GOAL
THE PROBLEM
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Medicaid and live in low or middle income families. Due to the recent budget cuts to Medicaid, children with disabilities are experiencing a reduction in medical services, prescriptions, and therapies or have been kicked out of Medicaid altogether.
* According to the Kaiser Family Foundation, Jun 12, 2019
that targets the general audience
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create an awareness campaign
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
By the end of this semester, I will
PROBLEM STATEMENT + GOAL
THE GOAL
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who is not familiar with this issue. I will achieve this by testing a group of people between the age of 18–25, measuring the results before and after they are exposed to the project. My goal is that they will leave being more aware about the problem.
“When we move to America, we will be
Her botox shot treatments used to be
able to give your sister all the medical
twice a year, but in recent years, they
care she needs” my mom had assured
had been cut to once a year, with half
me five years ago. She told me about
of the original dosage. The wheelchairs
Medicaid and certain programs for
were harder to get approval for, and the
children with disabilities and how they
caretaker hours were reduced significantly.
would significantly help my younger sister,
There wasn’t enough funding in Medicaid
Nicole. Once we moved to Virginia in 2014,
to cover everyone. My mom was told to
we were able to get Nicole a wheelchair,
move to a different county in Virginia,
medication for her seizures, therapies,
one that had more funding; but even after
an at-home caretaker, and botox shots
following this advice, my sister and many
to alleviate her muscle stiffness—all the
other kids in her special needs group are
things she needed, for free or for a fraction
still struggling to get the therapies and
of the cost. My mom was right; Medicaid
treatments they need.
was extremely helpful and allowed us to get my sister the care we wouldn’t be able
So, what happened? First, it is important
to afford otherwise.
to understand what Medicaid is, how it
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by Erika Park
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
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works for special needs children, and how Well, not entirely.
the budgets and funding are decided.
Medicaid is a program, created in 1965, that helps 74 million low-income people in America get access to health care needs. Among them, 6.2 million of them are children with mental or physical disabilities. Although Medicaid is largely aimed toward low-income families, a lot of states choose to expand the eligibility to children with special needs, even if they are living in high income families.1
Data source: Kaiser Family Foundation analysis of the 2017 National Survey of Children’s Health, Topical File.
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from county to county. According to the Kaiser Family Foundation, “The federal government covers a fixed percentage of states’ Medicaid costs—57 percent on average—meaning that states receive funding for that proportion no matter the cost of care. The federal government pays a fixed dollar amount per person.” The total differs for each subpopulation that Medicaid serves (hence the reason why my mom was told to move to a different county). States are responsible for 100 percent of any costs above this fixed amount.2 Over the past four years, Medicaid funding has been decreasing. Cutting Medicaid costs puts vulnerable people at risk and it is incredibly dangerous—more so if they are children and have severe disabilities. Children have lost access to services their lives depend on—prescriptions, therapies, at-home caretakers, surgeries, equipment, and many more. Their families cannot afford such services out-of-pocket because of their low income. Oftentimes, doctors encourage families to move to a state with better Medicaid coverage.3 However, this means that those states will attract more highneed families, which is not a good solution long-term. It is common to see Medicaid offices stalling the application process so families cover the expenses on their own
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as it varies from state to state and even
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
The financing of Medicaid is complicated,
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for months, or even years. In many cases, Medicaid only kicks in when the children
require acute end-of-life care. Of all the
In his first year of life, John Riley’s medical
things to cut, they are taking away from
bills exceeded $100,000.4
those who need help the most. In 2015, the state of Texas approved a Many families often get rejected from
$350 million Medicaid cut that would have
Medicaid, even if they have children
paid speech, physical, and occupational
with special needs and they meet all the
therapists who provide services to children
requirements. Earlier this year, John Riley
with disabilities, in an effort to help
Rood, a 10-month old from Mississippi
balance a billion dollars in property tax
who suffers from chronic lung disease,
relief. A group of Texans filed a lawsuit
frail muscle growth and delayed mental
to block this cut from taking effect and
development, lost his Medicaid eligibility.
argued that “the cuts were so steep
In an interview, his mother expressed
that providers would have to close their
her concerns, “I don’t know why they’re
businesses and forgo seeing as many
denying people. It’s not making any sense.
as 60,000 children.” However, the Texas
All the people I know that have gotten
Supreme Court declined to hear their case,
denied or accepted—there’s not a criteria
as the lawsuit “lacked standing”.5 This not
that’s being consistently followed, And
only affects the children and the families
they don’t tell you what requirements they
of those children, but it also took away
go on when they make these judgments.”
jobs of providers and therapists working in
“ Of all the things to cut, they are taking away from those who need help the most.” 14
HHSC reduces reimbursements for therapy assistants to 85% of the rate paid to licensed therapists.
HHSC implements additional reimbursement reductions for therapy assistants to 70% of the rate paid to a licensed therapists.
The MedCare clinic in Spring, and many other clinics in Texas, closes.
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The Texas Health and Human Services Commission (HHSC) restores 24% of therapy reimbursement reductions and changes billing practices for therapy treatments.
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
The Texas Legislature approves a $350 million cut in Medicaid for therapy for disabled children.
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Data source: Spring pediatric therapy clinic closes amid statewide Medicaid cuts, Community Impact Newspaper.
the developmental therapy field. Following
let these families go uninsured. If our
this $350 million cut to Medicaid
government cannot take proper care of its
reimbursement for children’s therapy
own children, all to provide tax breaks to
services, local pediatric therapy clinics,
the wealthy few, who are we as a country?
therapists and families with disabled
And how will other countries in the world
children are still currently reeling from
see us?
the effects. “The cut reduced rates, or the rates therapists can charge per session, by
We have the responsibility of spreading
25%,� said Paige Kinkade, CEO of MedCare
awareness about this issue, and I believe
Pediatric Group.6
that if we open up more conversations with people about Medicaid cuts and how
Medicaid is meant to help these 6.1
they affect special needs children, we can
million special needs children who live in
make our voices heard and impact people
low income families and allow them to
in power. If more Americans knew the
grow healthy and reach developmental
truth and the reality that these families are
milestones like any other child. They are
facing, we would be able to protect them.
one of the most vulnerable groups in
But we cannot wait until another tragedy
America because they are dependent on
strikes, until a family loses their insurance,
equipment, therapies, and medications;
until a child dies.
thus, cutting Medicaid funding is incredibly dangerous and harmful, and we cannot
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Chidambaram. “How Do Medicaid/CHIP Children with Special Health Care Needs Differ from Those with Private Insurance?” The Henry J. Kaiser Family Foundation, 12 June 2019, www.kff.org/medicaid/issuebrief/how-do-medicaid-chip-children-withspecial-health-care-needs-differ-from-thosewith-private-insurance/. 2. Ullrich, Rebecca. “Cuts to Medicaid Would Harm Young Children with Disabilities.” Center for American Progress, 3 May 2017, www.americanprogress.org/issues/earlychildhood/reports/2017/05/03/431766/cutsmedicaid-harm-young-children-disabilities/. 3. Kefalas, Maria. “Medicaid Covers Sick or Dying Children. But It Takes ‘Going to Battle’ to Get It.” STAT, 2 Dec. 2019, www.statnews. com/2019/12/02/medicaid-covers-sick-ordying-children-but-it-takes-going-to-battleto-get-it/. 4. Judin, Nick. “Disabled Children Losing Medicaid Coverage, Families Desperate for Help.” Jackson Free Press, 3 Feb. 2020, www. jacksonfreepress.com/news/2020/feb/03/ disabled-children-losing-medicaid-coveragefamilie/. 5. Mejia Lutz, Elena, and Edgar Walters. “Texas Moves Forward with Cuts of Therapy Services for Disabled Children.” The Texas Tribune, 28 Nov. 2016, www.texastribune. org/2016/11/28/texas-quietly-movesforward-cuts-therapy-services/. 6. Vigh, Eva. “Spring Pediatric Therapy Clinic Closes amid Statewide Medicaid Cuts.” Community Impact Newspaper, 17 June
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1. Musumeci, MaryBeth, and Priya
MEDICAID FOR SPECIAL NEEDS CHILDREN: A CONSTANT BATTLE
WORKS CITED
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2019, communityimpact.com/houston/ spring-klein/healthcare/2019/06/17/ spring-pediatric-therapy-clinic-closes-amidstatewide-medicaid-cuts/.
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OUR DATA In order to make any argument, we need proof and research—this will allow us to make informed and educated actions. Medicaid cuts affect children with different backgrounds all over the country. By analyzing data, we are able to find out which specific groups suffer most from the budget cuts and what other complications come with them, thus deepening our understanding of the issue.
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MEDICAID FINANCING: THE BIG PICTURE Medicaid is the third largest mandatory spending program in the federal budget following Medicare and Social Security. In 2018, spending on Medicaid accounted for 9 percent of federal spending. Medicaid accounts for a lesser amount of federal spending compared to Medicare because program costs are shared by the federal government and the states.
Data source: Kaiser Family Foundation based on Congressional Budget Office, Budget and Economic Outlook Fiscal Years 2019–2029, January 2019.
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RESEARCH Medicaid per enrollee spending is significantly greater for the elderly and individuals with disabilities compared to children and adults.
Data source: Kaiser Family Foundation estimates based on analysis of data from the 2014 Medicaid Statistical Information System (MSIS) and Urban Institute estimates from CMS-64 reports.
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A CLOSER LOOK AT MEDICAID’S ROLE WITH SPECIAL NEEDS CHILDREN Medicaid covered about half (47%) of children with special health care needs in 2017. It makes coverage affordable for many children with special health care needs and their families. Therefore, proposals that would reduce and cap federal Medicaid funding may pose a particular risk to children with special health care needs. Most of the 6.2 million Medicaid children with special health care needs live in low or middle income families. This is due to program eligibility rules which generally include financial eligibility limits. Just under half (45%) of them reside in a household with income below the federal poverty level (less than $21,330/year for a family of three in 2019).
Data source: Medicaid’s Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending, Kaiser Family Foundation, Jun 12, 2019
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RESEARCH Data source: Kaiser Family Foundation analysis of the 2017 National Survey of Children’s Health, Topical File.
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Over 1 in 3 (37%) Medicaid children with special health care needs are non-Hispanic white. About 3 in 10 (28%) are Hispanic, just over a quarter (27%) are non-Hispanic black, and eight percent are a member of another racial/ ethnic group. Most Medicaid/CHIP children with special health care needs are school-aged. Just over 1 in 5 (21%) Medicaid children with special health care needs are age 5 or younger, with the remainder about evenly split between the 6 to 11 (38%) and 12 to 17 (41%) age groups.
Data source: Kaiser Family Foundation analysis of the 2017 National Survey of Children’s Health, Topical File.
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RESEARCH Among the 13.3 million children with special health care needs, those who have Medicaid are significantly more likely to live in low income families compared to those with private insurance only.
Data source: Kaiser Family Foundation analysis of the 2017 National Survery of Children’s Health, Topical File.
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How Do Children with Special Health Care Needs Qualify for Medicaid?
Data source: “Medicaid’s Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending,” Kaiser Family Foundation, Jun 12, 2019
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for Medicaid based solely on their family’s low income.
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Some children with special health care needs qualify Other children with special health care needs qualify for Medicaid through a disability-related pathway. States must provide Medicaid to children who receive federal Supplemental Security Income (SSI) benefits; these children live in poor families and have disabilities that result in severe limitations in their ability to function at home, at school, and in the community. Nearly all states choose to expand Medicaid financial eligibility for children with special health care needs at higher incomes through optional disability-related pathways, disregarding parental income and assets. States also can allow children with special health care needs in middle income families to “buy in� to Medicaid. Children must meet SSI medical disability criteria, and states may charge premiums up to 5% of gross countable family income.
Data source: Kaiser Family Foundation analysis of Medicaid eligibility pathways.
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WHAT CAN WE LEARN FROM THIS? By looking at this small collection of data, we can prove that even though Medicaid is one of the biggest federal mandatory spending programs, there are big disparities that hurt the ones who need help the most. The data also strengthens the fact that the majority of these special needs children live in low-income families and are dependent on services provided by Medicaid. Therefore, when disability cuts are made, they pose a great danger to children with disabilities. In theory, Medicaid is an exceptional program that helps millions of Americans and offers various ways for special needs children to be eligible. However,
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stories of parents struggling to keep their children
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the real truth comes to the surface when we hear the alive, showing the magnitude of unfairness in this system. It is extremely difficult to make changes on a federal level. But one of the reasons why this issue continues is the lack of awareness by the general public; and it is understandable. I believe that spreading knowledge to others about this reality can ultimately lead to an impactful social movement. All children should be allowed to grow up healthy and thrive in their schools and communities—disability cuts are definitely a step in the wrong direction. Let’s fight for those who cannot fight for themselves.
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Typeset in Codec and Gotham and illustrated by Erika Park Designed at the School of the Art Institute of Chicago www.erikapark.com