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Medicaid Matters for Kids - Simone's Story

Simone spent more than a year in the hospital after her birth and has had many more visits since due to various illnesses and for surgeries due to craniosynostosis, a skull deformity; tracheomalasia, a floppy airway; and cystic fibrosis (CF), a chronic lung disease.  Because of her fragile lung status, she has a tracheostomy (a surgically created opening in the neck leading directly to the trachea) and requires oxygen and mechanical ventilation at night. Last January, Simone suffered a severe stroke during surgery and was paralyzed on her right side. With the help of therapists at Mt. Washington Pediatric Hospital, Simone has regained most of what she lost. We were honored to have her join us for Family Advocacy Day in 2012, and recently reached out to her mother, Shannon, for an update as part of our Medicaid Matters for Kids Month

Simone3Simone spent more than a year in the hospital after her birth and has had many more visits since due to various illnesses and for surgeries due to craniosynostosis, a skull deformity; tracheomalasia, a floppy airway; and cystic fibrosis (CF), a chronic lung disease.  Because of her fragile lung status, she has a tracheostomy (a surgically created opening in the neck leading directly to the trachea) and requires oxygen and mechanical ventilation at night. Last January, Simone suffered a severe stroke during surgery and was paralyzed on her right side. With the help of therapists at Mt. Washington Pediatric Hospital, Simone has regained most of what she lost. We were honored to have her join us for Family Advocacy Day in 2012, and recently reached out to her mother, Shannon, for an update as part of our Medicaid Matters for Kids Month

When did your child first go on Medicaid?
Simone first went on Medicaid in June 2010, when she came home after spending the first 13 months of her life in the hospital.

How does Medicaid make a difference in Simone’s care?
The primary way we participate in Medicaid in Maryland is through the Model Waiver program, which is also known as the Katie Beckett waiver, created by President Reagan in 1981. Katie Beckett’s family advocated and paved the way for sick children, like their Katie, to go home from the hospital and receive care at home without losing federal support, and saving federal dollars all at the same time. In Maryland, we’re extremely lucky to have one of the 200 slots. There is a waiting list based on need. The Becketts were so brave and smart to advocate that it’s healthier and less costly to have children with serious health issues — but who are stable — live at home. While being in one saved Simone’s life numerous times, a hospital is no place to live permanently. Simone’s infection risk with CF is high so being home is ideal. Her development since being out of a hospital bed has progressed beyond our wildest dreams. She knows over 100 signs using American Sign Language, knows all of her letters and is a very funny, loving girl.

SimoneThrough the Model Waiver, Medicaid fills in the gaps where our private insurance falls short. One of the biggest gaps is nightly nursing. Simone requires a nurse to monitor her ventilator and feeding tube while she sleeps. It's an active night from 8 p.m. to 6:30 a.m. The nurse gives Simone five nebulizer respiratory treatments through her tracheostomy tube which takes about 1-1.5 hours. She ensures Simone is fed continuously through her gastrostomy tube (g-tube), provides multiple medications via g-tube at three intervals in the night, and transfers her to a ventilator and oxygen. Throughout the night we can hear Simone coughing and her oxygen monitor and the ventilator will alarm. The nurse will provide physical therapy to her chest to loosen her phlegm, suction her, and gave her an albuterol treatment. We can sleep. And in the morning, I’m able to be her day nurse and her mother.

What would happen if Medicaid services were reduced or cut in your state?
Without Medicaid, our lives would be dramatically different. If we had to pay for nursing out of pocket, it would exhaust our financial resources quickly. One of us would have to be up with her every night taking care of her and the emotional and physical toll would be unmanageable. We have had our share of nights without a nurse and while we make it work, it is amazing how quickly "normal" life devolves.  Since my husband travels most weeks for work, he’d have to leave his position and find work locally, probably for less money and changes to health insurance. I am currently looking for a job but this would need to be put on hold as my "job" would be to function as her nurse at night too. As far as Simone, I’d like to think we could handle her illnesses on our own but the reality is she’d probably spend more time in the hospital, away from family, friends and normalcy. Having a health professional in the home not only provides much needed relief to the parents, they are another set of expert eyes and hands, able to assess and care for her health daily, assisting during emergency trach or g-tube changes, and strategizing with us about all aspects of her care.

Before having Simone, I didn’t know much about kids with special medical needs. I had no idea of the absolute all-encompassing effort it takes to care for a sick loved one. Even though we made it home from the hospital, we have a mini hospital at home. It’s a marathon and is relentless, requiring coordination and constant diligence to keep her well on the part of her parents, her doctors and her nurses at night. Because of the CF, when she gets sick it can be quite serious and for her it can mean going back in the hospital. She’s on oral antibiotics constantly but she is also able to receive IV antibiotics at home. She sees 12 pediatric specialists and four therapists (speech/feeding/OT/PT). Simone will probably need one more surgery —open heart surgery to remove a growth—and she will battle CF for life. We feel confident that we won’t need Medicaid for very much longer, but it has been an absolute lifesaver for us.

Sometimes after Simone gets up in the morning she falls asleep again in my lap. I look down at her and wonder why she has to go through so much. I really don’t think there is an answer. But I do think that people like Simone give us the opportunity to show us how good we can be—as parents, as nurses, as doctors, and as a society. She is a very happy child. I think we’re doing good work. For Simone and friends like her, I hope this program will continue to be improved and strengthened. Medicaid is working for our family, as a safety net, filling in the gaps where private insurance lets us down. So when people make decisions about Medicaid, we hope they remember families like ours.

Medicaid supplements your private family coverage, correct?
Simone represents a population of people who participate in the Medicaid program because our private, primary insurance is not sufficient —it serves as a wrap around our primary insurance.  For the last two and a half years Medicaid has been a safety net for our family. It’s helped Simone stay healthy and out of the hospital, and our family together. Our primary insurance only pays for 90 days of night nursing each year. Without Medicaid, by the end of March, we would have used up all of our nursing coverage for the year. But in April, Medicaid kicks in and covers a night nurse for the next nine months of the year. There are also some therapies that our private insurance does not cover that Medicaid coverage has allowed her to receive.

In the year since you attended Family Advocacy Day, how has Simone’s condition changed?
Simone recently began attending school and as wonderful as this is for her developmentally, like any other typical child, she is sick often as a result of new germ exposures. She has had to be on many more medications, miss a lot of school and has had many sleepless nights as her lungs have been compromised by the numerous infections. To see her in the day time though, you wouldn't know it as she remains a vibrant, shining, loving little person!


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