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

To the representatives of TX

I wanted to share with you what I wrote to have shared with the TX representatives.  I would love feedback.  Thanks!

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, 

Response from the Governor's office.

This week I received a letter from the Governor's office.  They told me they were sorry about what had happened and would be looking into it.  Yesterday I received a phone call from the head of the department we have been applying to.  He was a very kind gentleman.  He expressed his sympathy and admitted he didn't know what we were going through.  He then told me that the 30 day nursing home stay was a Federal law, not a state of TX law.  I was shocked by that! As we went on to discuss things, he informed me that TX follows federal laws to the T but they do nothing more than that.  They do what they have to do and no more.  He also informed me that he will be looking into other avenues for us on Monday.  There is a "buy in" medicaid program we might be eligable for.  We will see.  It's basically a second insurance.  I told him, it's not the medical bills that are the problem.  We have really great insurance.  The problem is the equipment he needs that costs thousands upon thousands of dollars.  In insurance world it is considered "durable medical equipment" and they will not pay a penny of it.
Justin has had his stroller since he was 2 years old.  He is quickly outgrowing it.  We have adjusted it about as far as it can go.  If we had stayed in VA we would have already requested to get the ball rolling for a new stroller.  Now that we are here, we don't know what to do.  Justin's last stroller was an $8,000 stroller.  Now that he needs a larger one the bill only goes up too.  We can expect his next stroller to cost around 12,000.  I don't know many people with that kind of money sitting around, we certainly do not!
The bottom line is, the wait list is 6 years and there isn't much they can do about it.  I can go to my legislators and try to convince them to put more money into the program.  I can put my son in a nursing home for 30 days (not gonna happen) or I can pray and wait on the Lord.  I do not know what God has in store.  I do know that I am at peace.  That I will continue to call people and fight for my son.  I do know that God is in control and he knows what is going to happen.  I need to trust him, as hard as that is right now.  I need to just trust him.
In the mean time, I have gotten JT on the wretched 6 year wait list.  I have applied for assistance from an organization here that helps you fight this battle.  I have also contacted our lawyer back in VA to see where JT's case is.  Please pray for me to trust, more than I want to.  Pray that I can see where I should be focused and on what I can or should be doing.  Pray, please pray this fund comes through for JT.
I am glad I wrote the Governor's office.  I am thankful they heard me and took me seriously.  I am thankful that the man who called me to explain things to me had a kind heart.  I am thankful for those who are going above their job description to help us.  I am thankful for you and your prayers.

Heart ache and anger

Today has been a tough day for my mommy heart.  Today, I received a phone call from a lovely woman named Renee.  She works for medicaid and called to help guide me.  I am so thankful for her help.  She informed me that JT needed a referral to get approved for medicaid and provided me with the number to the Medicaid waiver office.  I called Tawana.  Tawana was not so kind.  She informed me that their was a 6 year wait list for Justin to receive any services from them.  She then told me that if I wanted to bypass the list I could put JT in a nursing home for no less than 30 days.  I instantly began to cry.  I got SO sad and so angry.  I consider myself a strong person, but this, this broke me.  I began to tell her through my tears that I understood it wasn't her fault but that I was disgusted and appalled at the fact that they would tell me, to get my child help I would first need to abandon him in a nursing home!  I am still so angry about it.  What kind of system is this?!?? I broke down into tears, JT and Caleb both rubbing my shoulder "what's wrong mommy?"  "Are you okay mommy?"  Trying to pull myself together I got JT ready for school.  As we waited for the bus to come I broke down again.  How are we going to pay for his therapy?  Not everyone is as gracious as his therapists in DC.  Not everyone will allow us time to come up with the money.  How will he ever get a new stroller? His stroller right now is an $8,000 stroller! How will he ever get the equipment he needs to continue to grow and strengthen and walk?? We can't afford any of this! I then thought, if we had stayed in VA, we might be living in a tiny little home that hardly holds us but at least JT's needs would be met.
After asking for prayers, which I thank you for I then decided to write the governor.  I wrote him and told him how disgusted I was at this system.  How the state isn't taking care of children with special needs.  (I was much more polite and articulate in my email.)
Every time I look at JT my heart breaks.  We do all we can for him, so many people do.  You can't understand what it's like to have a child with special needs unless you have one.  That may sound harsh but it's true.  You can have sympathy or compassion but you don't know what it's like.  We don't get to go to a park b/c I can't watch C and E and help JT and watch the twins.  I don't have 3 little boys running and playing.  You don't know what it's like to watch him sit, watch and listen to his brothers play and want to be apart of it.  You don't know how challenging it is for us to take the boys out to do anything special.  We want to take E ice skating.  How do we do that?  We can't take JT.  What is he suppose to do? Life with a child with special needs is difficult.  Why do people make it more difficult.  The system should work but it's broken.  It's more broken than my sweet, amazing, kind, loving little man!
When you come across a person who has a child with special needs, you should know that when you have a child with special needs there are times of anger, sadness, joy, delight, happiness, mourning.  It may sound crazy.  How do you mourn a child who is with you.  You mourn milestones.  We delight in him.  He is incredible! He is a blessing! He brings joy to everyone he meets!! I wouldn't trade him for the world, yet still, we look and wonder, what would he be like if he didn't have CP?  Let these people mourn.  They don't need a pick me up, they need a shoulder, a strong shoulder to say "it's okay" "I am here for you".  We don't need a "you are great" or "well, at least he's here." We need people to come along side of us and say "it's okay to be sad and angry right now." "it's oaky to wish your child could sit up by himself."
Moving along... After a few moments I decided to call our lawyer back in VA.  I began to weep a little on the phone with her explaining our situation.  She said she was going to file JTs suit this week.  Please pray that she does.  Please pray that JT gets the VBIF.  (Virginia birth injury fund) If JT gets the fund then they will pay for his every need! We won't have to worry about his therapies, surgeries, procedures, equipment... He is covered and this wretched world of medicaid can go away! They will also backpay for all of the years of therapy and equipment.
I sometimes lose sight of God, of how big he is, of how much he loves us.  I know he loves me, I know JT is a man after his own heart.  Every morning JT wakes up and is literally singing songs of praise!  He teaches me a thing or two more often than I like to admit.  God is going to take care of JT and not in my way or in my timing, much to my chagrin.  God pretty much NEVER does it my way, but I guess that's a good thing.  I am laying this down at his feet.  You are my witnesses and have the right to call me out on it.  If I give it to God, I give it to God.  I will do my part, I will do what I need to do to help JT.  But I will not stress (that's super hard for me!) I will not get angry with those I come across.  I will trust in God and seek his guidance.  (I am having a hard time writing this, guess that means I am doing the right thing.) Pray for me, pray for peace, guidance, peace, love and peace :-) Pray for JT too.  He is really making such incredible progress.  Pray nothing stunts that progress!
Thanks friends!!