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!