Medicaid Saves Lila

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This is my sweet girl, Lila. She’s active and intelligent. She loves to swing, eat blackberries, and paint. Don’t you dare turn your back on her because she’s mischievous too! She loves her friends, family, and kitty-cats. She is absolutely the most wonderful thing I’ve ever done with my life, and she just so happens to have Down Syndrome.

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She might smile a lot, but her life hasn’t been easy. Born almost a month early due to multiple complications, Lila spent some time in the NICU. She’s overcome multiple illnesses and surgeries, including open heart surgery soon after her first birthday and many others since. In fact, we have received 2 new diagnoses this year alone, and she’ll have at least one surgery.

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My husband and I are proud Arkansans. We’re educated, hard-working, tax-paying citizens. At the time of Lila’s birth, we lived in another state. Despite the fact that we both had good jobs and primary insurance coverage, we struggled to provide for her needs. When we moved back to Arkansas, Lila was significantly delayed in many areas.

IMG_6519 Our friends told us about TEFRA, a type of Medicaid funding that provides for disabled children and that requires the family to pay a premium. Our primary insurance pays first for all that it will cover, and Medicaid makes sure that Lila doesn’t go without the rest. We gladly pay a monthly fee for this essential assistance!

Lila now receives medical treatments that she needs from specialists and Occupational, Physical, and Speech therapy. She attends a school where she is loved and accepted, and they practice important skills in the classroom to prepare her for mainstream Kindergarten. Lila is constantly learning the necessary skills to be independent: speaking new words, learning to feed herself, to dress herself, and to climb stairs. One of my favorite moments was the first time I ever heard her say, “Ma Ma.” Can you imagine waiting 4 years to hear that?

IMG_2776We never expected to need Medicaid. Even though we’d paid taxes for years for Medicaid, we didn’t know that a person’s life can change drastically in a moment – a car accident, a stroke, a job loss, a cancer diagnosis, a chromosomal difference – to cause them to need Medicaid. We thought that if we worked hard enough, we could take care of ourselves and Lila. But no matter how hard we work or what we give up, we just can’t afford to provide for all of Lila’s needs. Now, because of Medicaid, Lila is thriving, and we’re not being crushed under the weight of Lila’s ever-growing medical debt. We have hope that she will continue to develop and someday be a valued, contributing member of society. We are incredibly thankful for Medicaid.

We tell everyone we can how essential Medicaid is! Lila has visited the Capitol and state lawmakers multiple times to represent herself and friends like her. Since she can’t speak much yet, my husband and I tell them how much Medicaid is literally saving lives. I can’t wait for the day that Lila will tell them herself. She brings a beauty and light to this dark world, and we will never stop fighting for her!

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Allen

IMG_0014Allen Shimkus
Age 4
Diagnosis: Agenesis of the corpus callosum

(ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally.

Allen NEEDS PT OT AND SPEECH THERAPY to teach his brain to do everything from chewing food to walking.

My 4 year old son Allen (pictured here) can not fully dress himself or walk or even speak but he has the potential to do all !!!! Please help him !!

Ari

IMG_9906My sweet boy, Ari, has had 2 shunt revisions, ETV placement and will be having a major skull reconstruction surgery in 2 months. He is still working on head control as well as feeding. He has overcome so much and he has so much further to go … without Medicaid he would not survive. Being a single parent, the support given through Medicaid help ensure that he will receive all the healthcare support that he so desperately needs. I work full time and have private insurance personally, he is also on my plan, but TEFRA helps allow for him to have continued therapy, the wheelchair that helps him participate in all community/school activities and surgeries that he needs to survive and thrive. His birthday is this week and I can’t believe he will be 4!!

Jozzie

IMG_9905This is Jozzie. She is 3 years old and just learned how to walk 1 month ago. She still has some issues with walking due to cerebral palsy but without medicaid she would not have come this far. Every dollar spent on her means she becomes a more functional adult. What is done now predicts her future. We work with her daily. But without the training and day to day care from her therapist we wouldn’t know what she needs to work on. As she gains strength her need for therapies will decrease. Given a 1% chance of surviving and having several brain bleeds due to sepsis at birth, this girl is doing way more than what I was told she would. I was told she would be quadriplegic, wheelchair bound, and unable to speak. Now thanks to therapy and medicaid coverage, she talks up a storm and may even test out of speech soon. She is able to walk in her walker and even independently at times! Medicaid saved my girls life! From the instant she was born. Medicaid covered her. As a 2 parent working household it is imparetive that she receives therapies because we don’t get to devote the time to work with her, but her therapists can.

Laura’s Story: Medicaid Saves Caregivers

IMG_9901These two are my adult daughter and granddaughter. My daughter has developmental delays and multiple types of mental illness. My granddaughter has Down syndrome, Dyspraxia, and ADHD. Without Medicaid they will not have the therapies, medications, and medical care they need to live productive lives.

We are grandparents raising this little girl, and we are guardians to my daughter. We can’t make enough money to pay for private insurance for them or to pay out of pocket for these much needed services, therapies and medications. I fight Fibromyalgia, Lupus, and cancer. I don’t receive Medicaid. The stress of worrying if these 2 young ladies will still have medical care makes my health suffer greatly. I ask that Medicaid not be cut, that services are not capped so that all of those like my daughter and granddaughter can continue to get the treatments, therapies and medications they so desperately need.

Facts & Faces of Medicaid

Share the facts and faces of Arkansas Medicaid.

Show people who Medicaid cuts would hurt. Don’t give up. Keep calling and sharing.

Data source is credited. We have gathered several of KFF’s posts here to save you some time.

Faces of Medicaid: We want you!

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When people visit our site – especially lawmakers, agency representatives, media, non-recipients – we want them to see WHO Medicaid is saving.

Please know that by sending your photo, you authorize it to be used on the Medicaid Saves Lives website, Facebook page, any social media outlet, or any promotional material. In essence, you will have given us all rights to use it in any way we can think of! Keep in mind, this group is run by volunteers who are also recipients, so we don’t intend to misuse your photo or sell it.

Your photo may be cropped or edited to make it easier to use in any setting.

You can send it by email, facebook, or twitter!

 

Lily

lily_mslLily just turned 3 years old. She is obviously teeny tiny for a 3 year old. She’s about 20 lbs still and is about the size of a 1-1/2 year old. She has a chromosomal disorder. More specifically, she has a microduplication of her X chromosome. This can cause a wide range of symptoms. In her case, she has a duplex kidney with an ectopic ureter and hydronephrosis. At one year old she had surgery to correct her ectopic ureter, which has helped the hydronephrosis. She also has hypomyelination in her brain. Due to this, she has hypotonia (low tone) and global developmental delays. Cognitively, she’s doing pretty well though so we are fortunate in that regard. She currently recieves PT, OT, and has received ST for feeding in the past and probably will again in the future. I am an SLP so I work with her at home but sometimes children respond better in regards to structured tasks to someone who is not their parent. She learned how to walk at 2.5 years old but still uses her gait trainer outside and on uneven surfaces. She also has AFOs due to excessive ankle pronation. She is very unbalanced and uncoordinated but has improved so much with therapy and her AFOs. Her fine motor skills are still lagging and so is her language but she has made significant progress. She overcame huge feeding issues that we battled until she was about a year and a half. She still won’t drink milk or boost but short stature is part of her diagnosis so we aren’t as concerned for now. A big factor in that was managing her reflux. Prevacid is the only thing that has helped and she will only take it in solutab form. Our primary insurance does not cover it and without tefra it’d be $250/month. She recently began having seizures but they are being managed with keppra. In addition to her PCP, Lily sees several specialists at ACH. She sees genetics, urology, neurology, growth and development, rehab specialty, and has seen nephrology and pediatric gynecology (due to a didelphic uterus).

I cannot even imagine what we would do without TEFRA. I am a therapist and my husband is a firefighter. We both work hard and make a good living BUT we miss alot of work between her therapy and doctors appointments. That combined with the cost of her medical bills for appointments, test, and treatments would leave us in huge medical debt. We are so thankful for TEFRA and it really has changed Lily’s life.

Griffin

griffin_mslMy son, Griffin was born with a rare, genetic condition called Lebers Congenital Amaurosis (LCA). This is a form of retinal dystrophy that has rendered Griffin blind since birth. I am an occupational therapist so I understand the importance of and believe in therapy intervention! Griffin has a global delay, but thanks to his receiving therapies at such an early age… he won’t be behind for long!! Griffin is learning to use his walker as a pre-cursor skill to using his long white cane. He is learning to use his hands to manipulate and study objects which will be a life long skill when he starts reading Braille, and becoming more independent. And at 13 months, he is just learning to babble and say “Ba, Ba”.

We GLADLY pay our TEFRA premium each month and say a prayer of thankfulness for it each day. Without TEFRA, Griffin would not receive his therapies, have been able to have had his genetic testing done to help us learn what was the cause of his blindness, or be able to have had the 7 eye exams he needed before age one!

Elliot

elliot_mslThis my 15 month old son, Elliot, who is sitting up and holding a ball…two things he would likely not be doing without the physical and occupational therapy he receives twice a week. He was born 3 months prematurely and suffered grade III and IV brain bleeds, damage associated with motor impairments and, very often, cerebral palsy. He also developed hydrocephalus from the bleeds, has a shunt, and with no cure, will always have a shunt. Elliot cannot sit like this long, but we are working on it with our wonderful therapists. Elliot cannot crawl, pull up, stand or walk yet (all typical for a one year old or younger) and with his brain damage, these are all things we were told he may never do. Early intervention has been key for Elliot’s progress and is having a huge impact on what he’ll be able to do in the future.

TEFRA is a wonderful program for so many reasons, but best of all, it isn’t a “hand out”; we pay premiums based on income. Without this coverage, our family would have been in medical bankruptcy before we were discharged from the NICU.