Growing with Kerstin: Raising a child with "special needs": October 2016

Medicaid in Alabama! Cuts to medicaid. Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them. Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid. She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life. My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers!

How was I going to do this? As always, with Kerstin by my side and my older sister being our personal photographer. I shared just some of what potential cuts could mean for Kerstin. In order to get there, you'd have to know her story. Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study. Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive! There are medicines for seizures, spasticity, along with her nutritional and feeding needs. Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income.
I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the specialized kind that she needs because of stomach sensitivities. Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78. That case would not last her a week!! Because Kerstin is a growing child and her nutritional needs have changed, the new therapeutic nutrition she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case. Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat. These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid). Medicaid, makes all of this possible for Kerstin's survival.
Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists. These necessities are paid through medicaid. Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances. The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether. If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers. These cuts could have negative and potentially harmful impacts throughout.
There are so many misconceptions out there about medicaid. Some being that, the program is misused and that many people on it actually do not need the services. I beg to differ, especially when it comes to my daughter. As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs. I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin.
Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts. It is my hope that humanity is at the forefront of this story. She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol).