Dear Jules,
Today I want you to have something that I'm writing for our senators and for the local newspaper. It's about the benefits that you and your friends receive: benefits that could be taken away in new proposed health care legislation. I want you to have this for a number of reasons: to see how hard our community fights for you and your friends, and to remember the other kids (and their parents) on this journey with us. So, without further ado, here it is.
I experienced a myriad of emotions when my little girl was
born: joy, relief, and fear. Julia has
Down Syndrome and, at that time, I had no idea what challenges or costs it
would entail. Thankfully, I learned
quickly about the support system of other parents who have children with
disabilities--there are over 200 families in the lowcountry who have kids with
Down Syndrome. They told me about a
South Carolina Medicaid benefit, called TEFRA (Tax Equity and Fiscal
Responsibility Act). TEFRA provides
Medicaid to children who would otherwise not qualify, but whose medical and
social needs can be prohibitively expensive.
When I was growing up,
I heard stereotypes about people on Medicaid being “lazy” and “scamming the
system.” I was taught that, if you
worked hard enough, you wouldn’t have to “rely” on the government. Yet Medicaid, in the form of TEFRA, has
enabled us to take Julia to three therapies a week (speech, occupational, and
physical therapies) and pay for numerous doctor visits due to her ear
infections, constant strep throat, Celiac disease, and generally low immune
system. “Lots of kids get sick,” you
might think, but the difference here is that our kids, kids with disabilities,
will have limited resources when they are older. If we didn’t have TEFRA, we might still do
all of these therapies, but there is no way we could save for Julia’s future;
paradoxically, the fewer procedures and therapies she gets, the more beholden
she will be to the state and federal governments later in life.
I’m really thankful to South Carolina for providing this
benefit and allowing us to keep working, saving, and making Julia’s future as
bright as it can be.
With the permission
of my friends, I wanted to share some of their stories, too.
This is Jude. According to his mother, Gini Nichols, Jude
receives therapy 4 times weekly. As is the case with most policies, including
mine, insurance covers 30 visits a year, meaning they would exhaust this in
about 3 months. According to Gini, “TEFRA also covered open heart surgery,
multiple hospital stays, and continued specialist visits.”
This is the case for
most of our kids, including Mae. Her
mother, Jaime Thomas Nettles, adds that “Research shows that children with Down
Syndrome thrive in the community by early intervention [our children also
receive this benefit until they turn three]…She deserves to be a working
thriving member of society just like everyone else.”
According to Jill
Griffith, mother of Parker, this would also cost our state families with valuable
skills (I myself teach at the College of Charleston, and my husband is an IT
director at MUSC). She writes that, “after multiple surgeries, 4 therapies a
week, and possibly an upcoming eye surgery, a significant portion of our
household income would be tied to Parker's medical expenses without TEFRA.”
Denise Brewer Brown
has not one, but two children with special needs. According to Denise, “Jack receives PT twice
a week, OT, EI [early intervention] and Speech. “He has a helmet and special shoes
to help walking. Evan receives PT, OT
and EI. “That's not including specialist appointments.”
Callie, the daughter of Kerry Litten (left), also receives four
therapies a week, along with the many services already mentioned.
One of the stories I’ve been following most closely is that
of Daisy, daughter of Holly Nye. Like
many children with Down Syndrome, Daisy also deals with heart conditions. According to Holly, she “spent the first 9
weeks of her life in various units of MUSC, has many appointments with multiple
specialists, PT, OT, and SLT [speech language therapy] weekly, EI biweekly, has
had 5 surgeries so far including open heart surgery, among multiple hospital
stays.” Like almost all of us, Holly and her husband work full time but would
be in debt if it were not for TEFRA.
We all come from different places, have different
experiences, different faiths, and different political beliefs, but our stories
are unbelievably similar. We all work
hard, we adore our kids, and we want them to be productive members of
society. We all believe that providing
them with the services they need (without bankrupting us) will allow for that
to happen in future.
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| Danny Raynor |
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| Asher Ferrell |
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| Jakob Jones |
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| Behr Glocker |
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| Freddie Taylor |
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| Becka Winger |
Many of the pictures I was sent were of the babies in our
group, like Davis Dawson, right, who has also had a number of medical issues
and seemingly lives at MUSC. But I don’t
want to forget that our kids will grow up and have different, no less
important, needs.
They need to integrate into school, like Lily Waddle, left,
and services like occupational therapy are essential to that.
Sheyenne Morris, pictured above, graduated
from high school
due in part to the services she received from the state. Sheyenne, 21, received services in elementary
and high school. According to her mom,
Julie Morris, she would not have made it as far as she has” if the family had
not received assistance. “She is a very strong-minded young lady,” Julie
writes, and she is “so proud of all [Sheyenne] has accomplished.”
And, as Gene Carpenter, mother of Elizabeth Carpenter, says,
Medicaid not only helps individuals and their parents but is also essential to
the well-being of siblings, like Elizabeth’s brother Edwin, pictured here.
As Gene writes, Elizabeth “is the success story of Medicaid…
Today she is a rising junior at Bishop England High School in completely
inclusive classes and goes to school
with her “baby” brother, Edwin. “Elizabeth,”
writes Gene, “is going to make it – she will live independently, she will hold
a job. Edwin is the lucky one – his life is rich from his experiences with
Elizabeth but his future will not be burdened with the responsibility of full
time caregiving because Elizabeth received all the services she needed from
Medicaid.”
These are just some of
our stories, and this is just the Down Syndrome community. I also have friends whose children are on the
autism spectrum, or have cerebral palsy, or suffer seizures that require
constant supervision. Look at these
faces: these children are anything but lazy, and their parents are not only not
exploiting Medicaid but are using its benefits to create better lives for both
their children and their siblings.
Many of my friends do
not live in South Carolina and do not receive Medicaid. Kaetlyn Spivey’s mother, Kelly, writes that
they moved from Seattle, where they did not receive Medicaid benefits. When Kelly’s employer asked them to return,
Kelly rejected the offer because “this is better for Kaetlyn. The other side is very very expensive”!
I want to be clear
that we are so very grateful for the assistance you, the taxpayers of South
Carolina, have given to us. Please know
that, as you and your legislators prepare to make choices regarding health care
reform, these children continue to count on you.
