The stories of three families on Capitol Hill

RILEY, 7 months
ABOUT RILEY: He wants to be a baby doing baby things.
RILEYaS DIAGNOSES: Multiple Congenital Abnormalities
(over 12) including Severe Tracheomalacia and Coarctation of
the Aorta
CURRENT MEDICAL NEEDS: Multiple medications; at home
surgical procedures; frequent monitoring with no less than 2
available skilled care providers, including home health;
extensive care required for trach; homebound due to infection
risk (his medical summary is 8 pages long; medical history is
over 4,000 pages long)
WHAT DOES ACCESS TO AFFORDABLE QUALITY
HEALTHCARE MEAN TO YOU? Affordable quality
healthcare should not cripple a self-sustaining and socially
responsible family, nor put an infant's life at risk on a daily
basis.
HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?
Despite my son's medical costs being 40% of our gross
income/month and despite my son's extensive medical history
only 7 months into life, having already required multiple lifesaving surgeries and meeting the medical definition of disabled,
we currently are unable to qualify for federal assistance due to
budget cuts. Our monthly gross income falls just outside the
limits set and it's based only on financial need based on gross
limits, not percentage of monthly medical bills to monthly
income.

HOW WOULD THE PROPOSED
AHCA AFFECT RILEY?
There will be no financial reprieve for
my family. Not only will you continue to
financially cripple my family, you want
to deny us the ability to get tax respite.
Our crime: we work too hard and we
pay into a system that will refuse to help
our son who only wants to be a baby
doing baby things.
We work. We pay our taxes on time.
And yet...nothing.

Submitted by Tori Rouyer, Rileyas mother (Mandeville, LA)
KidsNeedHealthcare@gmail.com

AUSTIN, age 11
ABOUT AUSTIN: Austin is 11 years old. He is in
Boy Scouts and loves baseball, swimming, and the
beach.
AUSTINaS DIAGNOSES: Austin has short gut
syndrome. He is TPN Dependent and has been
listed for a multivisceral transplant.
CURRENT MEDICAL NEEDS: Austin is IV
dependent for nutrition and hydration, which
infuses an IV directly into his heart 20-23 hours a
day. He requires a nurse to attend school. Austin
has frequent doctoras appointments, ER visits, and
hospitalizations.

Austin (in blue) enjoys time off his IV to just be a kid at the beach.
WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN
TO YOU? As a single mom of 4 kids it allows me to stay afloat. Without
affordable quality healthcare I couldn't care for any of the kids or myself. It also
means my son would likely die if he didn't have access to this healthcare.
HOW HAS THE ACA AND/OR MEDICAID HELPED YOU? Provides private
duty nursing so he can attend public school. Covers the co pays of the many
medications and medical appointments and procedures he has.
HOW WOULD THE PROPOSED AHCA AFFECT AUSTIN?
It would be catastrophic.

June 2017. Austin went onto the field and met players
through UMPS Care. He was running his IV in his
backpack on the field and during the game

On paper my son may look like a financial liability or burden. To see pictures of
him tell the true story. He's a typical kid who just wants a chance at life. He's
not a "taker" from society. He's given back and touched many lives. At age 5
(my son's condition has a 5 year, 50% mortality rate) Austin decided for his
birthday he wanted to raise money for medical research rather than receive
presents. At age 5 and in one year he personally raised over $100,000 for
medical research. This year his goal was smaller but just as significant. He
wanted to help one of the homeless people he sees in the city on his frequent
trips to the hospital. He gathered his very best. A favorite L.L. Bean backpack
overflowing with items he picked - new socks and clothes, Hersheyas kisses,
snacks, a blanket from camp and a lot of other gifts from his heart. His next trip
to Pittsburgh he handed his gift to the first homeless person we saw at a
stoplight down in the city. The man struggled to thank my son. He was
profoundly deaf. Austin and I talked about how hard it would be to access
services if you can't communicate and speak the language everyone else speaks.
Austin is certainly a child that requires more healthcare than the average child.
But he is also a child who has already given society much more than the typical
adult.

Submitted by Jen Rath, Austinas mother (Mars, PA 16046)
KidsNeedHealthcare@gmail.com

PARKER, age 12
ABOUT PARKER: Parker loves sports, especially the Utah Jazz
and BYU football games. He loves hanging out with his family.
Parker loves the outdoors. Parker also loves learning. He will
spend hours on his lessons!
PARKERaS DIAGNOSES: Pulmonary Hypertension. Chronic
Lung Disease. Tethered Spinal Cord. Parker's epiglottis is nonfunctioning and so he eats via a G/J tube. Parker has severe
aspiration issues, requiring a Nissen. Parker was born with an
Imperforate Anus. Parker's upper airway requires him to breathe
through a trach. He is on oxygen 24/7, and requires a vent
anytime he is asleep. Parker was also born with Down
syndrome.
CURRENT MEDICAL NEEDS: Parker requires an oxygen
concentrator, oxygen bottles, trachs, g-tubes, several incredibly
expensive medications, one running over $100,000 a year. Parker
sees several specialists, including, ENT, Cardiology, Pulmonary,
GI, and general surgery. At this very moment, Parker is in need
of surgery to revise his Nissen, place an Ace Malone, and assess
the lower part of his colon, which is preventing him from normal bowel movements. He's in quite a bit of
pain due to his gut issues, caused by his colorectal malformation.
WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU? It means we
can provide medical care for our son while keeping a roof over our family's head. We can also provide his
medications. Remember, pharmacies do NOT offer payment plans.
HOW HAS THE ACA AND/OR
MEDICAID HELPED YOU? Before the
Parker qualified for Medicaid, via the Travis
C. waiver, we were close to maxing out on
our private insurance. The medical debt we
had accrued required us to depend on food
friends left on our door step. Once Parker
was accepted on the Travis C. Waiver,
Medicaid picked up what our insurance
would not. We had reached Parker's lifetime
allowance for oxygen, oxygen supplies, vent
rentals, and oxygen concentrator rentals. It
picked up the enormous co-pays we had,
and we were able to provide Parker with

Submitted by Tammy Hodson, Parkeras proud mother (Highland, UT 84003-9632)
KidsNeedHealthcare@gmail.com

the medications that keep him
alive. In Utah it is very common
to be told to 'host a BBQ' when
you have a medically fragile
child. For three years we tried to
do this very thing. We couldn't
even come close. Medicaid also
allowed Parker access to
therapies our private insurance
denied.
HOW WOULD THE
PROPOSED AHCA AFFECT
PARKER? Quite simply, the
proposed changes in AHCA
would kick Parker off of our private insurance, as well as create a situation where he would lose access to
his Medicaid Waiver too. Let's face it. Cuts to an already thinly funded program means there will be
those who lose access to their waivers. In Utah it is already insanely hard to access any sort of help for
kids like my son, Parker. Then we you do, you are told that you are robbing your neighbors by 'gun
point.' Without these two programs, there is no way we could afford to provide Parker with the life
saving medical care, durable medical equipment and medications he requires. We have a wonderful
support system, however even with their help, the costs could never be covered.
I'd like to explain to Sen. Lee that Medicaid for kids like Parker has not been expanded nor has it
'exploded.' Rather, Medicaid for this population has remained very stable. Social safety nets for kids like
Parker were supported by the Founding Fathers. They saw social safety nets as sort of a social insurance
that even they could rely on if something were to happen to their family. Historically speaking, the
Federal Government has offered more protection for the disabled than the states. It's unfortunate, but
true. All you have to do is ask which state, on their own, was willing to educate a cognitively delayed
child like Parker, before the Federal Government stepped.
The answer is easy. None of them.
I have emailed Senator Lee, each time sharing both my phone number and address. I have called. I have
reached out via social media. I have attended his online and phone Town Halls. I have stood in the circle
of people that tend to surround Sen. Lee when he attends events at BYU and other venues, trying to get
his attention. Senator Lee lives literally just up the road from me. And yet the only response I have
received from Sen. Lee is a form letter that read exactly the same as the one my other friends who reached
out to Sen. Lee received......and told us absolutely nothing in regards to how our kids will be able to
access healthcare if the AHCA goes through in its current form.
For a state that values families as deeply as Utah does, with a main religion who's doctrine teaches the
significance of certain spirits, such as my son Parker's, during the pre-mortal existence, Sen. Lee sure
seems to work hard at making our ability to keep Parker's body and soul together here on earth, down
right impossible.

Submitted by Tammy Hodson, Parkeras proud mother (Highland, UT 84003-9632)
KidsNeedHealthcare@gmail.com