Tuesday, November 11, 2014

Final letter being presented to legislators today

Friends, I wanted to first thank those of you who helped me edit and revise my letter.  I cannot tell you how much I appreciate it.  Being so close to the situation my heart was on my sleeve and I couldn't see past my thoughts in order to edit this and make it what it could be.  So, thank you.  Here is the final copy of what is being sent to TX legislators today.

My name is Melissa Foulke and I am writing to request support for my son through Medicaid.  My husband, Jake, and I have five little boys ages six, five, two, and one-year-old twins.  In August our family relocated from the Washington, DC area to Texas.  We moved to Texas to support my husband in his career at Rackspace.  He has worked for Rackspace for 9 and a half years in the Northern Virginia area.  In order for him to continue to grow and advance in his career we moved to San Antonio so he could work at the Rackspace Headquarters. 
During the last six years our family has been through an inordinate number of trials.  In this time we have welcomed five children into our lives, but have also endured the difficulties of having three premature babies and NICU stays, seven surgical procedures on our children, three rounds of botox injections in our son's legs to help him walk better, and a miscarriage.  I have had four surgeries myself and have fought cancer while being pregnant with our twins.  During this time my husband has not only maintained his job but has managed to earn awards and receive raises and promotions.  

Today I am writing to you about our beautiful little boy Justin.  Justin was born at just 29 weeks gestation.  Doctors do not know why he came early, but he did.  Justin spent the first 47 days of his life in the NICU.  When 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 led 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 but they did not 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). At age 2 Justin was diagnosed with Osteopenia (brittle bones).

Today Justin is five 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 wakes up singing praise and worship songs every single morning.  His favorite song is Amazing Grace.  Justin is smart, as well as a smart alec.  He is clever, kind to his brothers, and thoughtful.  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 was born and lives in God's perfect timing.
  
JT uses several pieces of equipment daily.  He uses a special chair to eat and a special chair to sit and play.  He uses a special needs stroller to ride the bus and get around at school.  We leave his motorized wheel chair at school during the week so he could learn how to operate it safely.  He has a special bath chair and toilet seat.  JT attends four private therapy sessions a week and has receives a number of therapy and services at school, such as physical therapy, occupational therapy, speech therapy, 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 learning delays.  We are hopeful that he will begin to learn braille in the near future to accelerate his learning.
  
When I first applied for Medicaid in Texas, Justin was denied.  I applied under the section "person 65 or older OR person with a disability."  The denial letter we received stated he was denied because I did not include the correct documentation, although the letter did not clearly say what documentation was missing.  I went to the Medicaid office and applied again, submitting additional documentation I was told would help.  I later received a phone call telling me that he would be denied again—they said that since he was not in a nursing home he was not eligible.  About a week later I received another phone call, telling me to call another office to see if he would be eligible for a waiver.  When I called the Department of Aging and Disability Services office to request a waiver I was heartbroken when told there was a six-year wait list for Medicaid and the only way to bypass the wait list was to put my child—my five-year-old, cognitively-aware son who cannot move without assistance—in a nursing home for no less than 30 days.  I was and continue to be appalled and disgusted by this.  In order for JT to receive what he needs for a functional life during the next six years we are expected to place him in a nursing home for an extended length of time.  We cannot subject him to that experience.  

So here we are, in a new state without the support of our family, friends and medicaid unable to pay for therapy and equipment.  In January, when our deductibles reset we will have to decrease the frequency of his therapy sessions since we will not be able to afford the cost.  We have no hope for JT to get a new stroller until he is 11 years old and makes his way to the top of the 6 year Medicaid waiting list.  He has had his current stroller since he was two years old and we have adjusted it to its limits.  He is clearly outgrowing it.  Virginia Medicaid paid for this wonderful, supportive, assistive stroller and we do not have the ability to pay for his next stroller.  Last year alone our family accrued one million dollars in medical bills, most of which was covered by our health insurance.  However, the remaining cost was still a financial burden for our family.  Although we have great insurance, it  will not contribute to the cost of our son's equipment since they consider it to be durable medical equipment, which in their view means he does not need it because it is not life-saving.  This is why we need Medicaid—not only to help with medical bills but even more to provide our son with the equipment he needs to have an enjoyable and full life.  When Justin had Medicaid when living in Virginia, we were able to provide him with services and equipment he needed without delay or question.  Here in Texas, we will continue to have expenses most families do not.  We need help with those expenses through Medicaid here.

It breaks my heart that the Medicaid process is so difficult for those who are already doing their best to care for their children.  Children with disabilities are already segregated from others in life.  Justin is already different because he is in a stroller at the age of five.  He does not get to run around in the back yard with his brothers.  Instead, he sits watching them—laughing with them and enjoying them but wishing so badly he could join them.  My son deserves better.  My son is a human being who is not being given the chance to grow and mature.

As his mother and advocate, 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 the therapy sessions he needs to learn to care for himself, sit up, use the bathroom, and bathe himself.  I fight knowing my son can do these things, that he has the determination and desire to do these things.  However, he needs more help than my husband and I can provide, and we are asking you to—please—provide him with that support through Medicaid.
Best regards, 

Melissa Foulke

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