My name is Melissa Foulke and my husband is Jake. We have 5 little boys ages 6, 5, 2, and twin 1 year olds. In August our family moved from the DC area to TX. In the last 6 years our family has been through a lot. We have not just had 5 children but we have also endured 3 premies, 7 surgical procedures on our children, 3 rounds of botox in our sons legs to help him walk better and a miscarriage. I have had 4 surgeries and fought cancer while being pregnant. My husband has not only maintained his job while all this was going on but he has managed to earn awards, as well as received raises and promotions.
Today I am writing you about our beautiful little boy Justin. Justin was born at just 29 weeks. They do not know why he came early, but he did. Justin spent the first 47 days of his life in the NICU. While he was only a few weeks old I was told that he had a brain bleed. The doctors would do weekly tests to follow the brain bleed. Only a few days later I sat down with a doctor who told me that Justin had PVL (periventricular Leukomalacia) This brain bleed had lead to his diagnosis of Cerebral Palsy. I was told that the damage was severe and went all the way from the front of his brain to the back. I was told that he should walk and talk they just didn't know when. I was told that they were very concerned about his cognitive abilities. At 8 months old Justin was diagnosed with CVI (Cortical visual impairment).
Today Justin is 5 years old. He cannot sit up, stand or walk unassisted. He cannot change his clothes, brush his teeth or bathe himself. Justin is however one of the funniest little boys I know. He loves music. In fact he literally wakes up singing praise and worship songs every single morning. His favorite song is Amazing Grace. Justin is smart, he is a smart alec too. He is clever, manipulative (I mean that in a good way), kind to his brothers, thoughtful and his smile can make the worst day all better. Justin is a gift from God. His nickname is JT. My husband wanted his middle name to be Tyme - Justin Tyme because he is in God's perfect timing.
JT uses several pieces of equipment daily. He uses a special chair to eat. A special chair to sit and play. He uses a special needs stroller to ride the bus and get around at school. We have left his motorized wheel chair at school so he can learn how to operate it safely. He has a special bath chair and toilet seat. JT attends 4 private therapy sessions a week as well as hundreds of hours of therapy at school. While at school he utilizes several services such as PT, OT, speech, and vision assistance. Justin's teacher said that he is a very smart boy who can learn things quickly but that his CVI is causing him learning delays. We are hopeful that he will begin to learn braille in the near future to catapult his learning.
When I first applied for Medicaid Justin was denied. I applied under the section "person 65 or older OR person with a disability". When we received the letter saying he was denied it stated he was denied because I didn't include certain documentation. No where did it say what documentation. It was written as if it were in code. ie document 357-l31 was missing. I thought I had done something incorrect, so I went to the medicaid office and applied again. There I also added documentation I was told would help. I then received a call telling me that he would be denied again. They told me he wasn't in a nursing home so he wasn't eligible. Then about a week later I got another phone call. They were calling to tell me to call another office to see if he would be eligible for a waiver. I called the DADS office. There, my heart was torn to shreds. When I inquired about it she told me there was a 6 year wait list. A 6 year wait list! She then told me that the only way to get around the wait list was if I put my child, my 5 year old son who can't move without assistance, who is smart and knows whats going on, in a nursing home for no less than 30 days. When I heard this I couldn't help but begin to cry. You mean to tell me you want me to put my child in a nursing home? I told the woman that I understood it wasn't her fault but that I was appalled and disgusted by this! You are telling me that in order for you to help my child get what he needs to have a functional life you want me to abandon him first?! It's not going to happen. So, here we sit, financially strapped as it is, paying over $2000 a month in medical bills and there is no hope for my son to get a new stroller until he is 11 years old! Justin has had his stroller since he was 2. We have adjusted it to it's limits. He is outgrowing the stroller. What are we going to do? That stroller was an $8000 stroller that VA medicaid paid for. We expect his next stroller to be closer to $12000. How are we suppose to do things as a family? That's what we are, a family. We are a family with a son, a brother who has a physical disability. So, are we never suppose to leave our house? Is my husband suppose to work 3 jobs (which still wouldn't cover the cost) and be an absent father? What kind of family life is that?
Last year alone our family hit 1 million dollars in medical bills. That does not include our sons therapy bills nor does it include his medical equipment. Please notice, we did not go on welfare. We did not need to use food stamps. We did not file for bankruptcy. We have excellent health insurance and our son had medicaid. Insurance will not contribute a dime to our sons equipment. They consider it to be durable medical equipment. In their eyes he doesn't need it. Because it isn't saving his life, just providing him one they won't pay. This is why we need medicaid. Yes, to help with the medical bills but more than that, to provide our son with the equipment he needs to have an enjoyable and full life. Because Justin had medicaid last year in VA we were able to provide him with what he needed without any delay or question. We continue to pay down medical bills on payment plans, but we are doing it. I do not feel as though we are asking for too much help. We are able to provide for our children but we have expenses most families do not. We need help with those expenses.
It breaks my heart that you, the government can't see how hard it is to raise a child with disabilities. They are already segregated from life. They don't need more segregation. He is already different because he is in a stroller at the age of 5. He doesn't get to run around in the back yard with his brothers. Instead, he sits, watching them, laughing and enjoying them but wishing so badly he could join them. Why? Why is this process made even more difficult? Why won't you help those who are doing their best to care for their child? Why are you choosing to only help those who first abandon their child? Why aren't interviews being done to see who really needs assistance and who doesn't? Why is the wait list 6 years? My son deserves better. My son is a human being who isn't being given a chance to grow and mature.
In January we will have to pull back on his therapy. We cannot afford it. There is no way we can pay for $2000 a month. I do not know what we will do when he finally outgrows his stroller, and he will outgrow it, soon.
I am his mother, I am his advocate and I will fight for him to have the best life he can have. I will fight for him to have the equipment he needs to continue to learn and grow. I will fight so that he can continue to attend all the therapy sessions he needs so that he can learn to care for himself, sit up, use the bathroom, bathe himself. I fight not blindly, I fight because I know my son can do it. He has determination and the desire to do these things. He can do them but he needs help. He needs more help than my husband and I can provide. He needs you. He needs your help.
Please, help my son.
Best regards,
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