June 24th, 2011
03:53 PM ET

Protecting Justin in the face of Medicaid cuts

This week, Dr. Sanjay Gupta examines New Jersey’s proposed cuts to Medicaid, a program that provides critical parts of the care the Genevieve Spielberg’s son, Justin, requires. For more on their story and the future of the federal insurance program, tune in to “Sanjay Gupta, M.D.,” 7:30 a.m. ET, Saturday-Sunday.

July 5, 2000, was going to be a magical day as my husband and I traveled to New York City for my scheduled C-section in great anticipation of welcoming the newest member of our family. Our 2-year-old son, Spencer, was going to be a big brother.

Little did I know that the same day our lives would change forever. After a normal pregnancy including tests, sonograms and an amnio, I delivered a baby boy who I only saw briefly, but during that time noticed his angulated thumbs which was surprising as my vision without my glasses is not the greatest.

To this day I remember saying, “What’s with his thumbs?” as the 90-degree angulations were not typical, but alas they whisked our Justin away and all hell broke loose.

Within the hour the doctors mentioned three possibilities and one of them was Rubinstein-Taybi syndrome. It was later confirmed that Justin suffers from this rare condition along with about 700 cases diagnosed worldwide.

Rubinstein-Taybi syndrome, RTS for short, is a mutation or deletion in chromosome 16 and like most syndromes can have mild to severe implications both physical and cognitive. To date, Justin has had 10 surgeries, the most recent just last week.

But that aside, he is one of the most special individuals I have ever met and truly brings out the best in everyone. With all of his challenges, he maintains the sweetest disposition and has exceeded all of our expectations, which is a relief since we were told not to expect much from him and the word “vegetable” was even used.

While Justin needs to be supervised 24/7, is incontinent and most likely will never live independently, he is a testament to the wonders of early intervention as provided by Children’s Specialized Hospital, a great school, i.e. PG Chambers in Cedar Knolls, New Jersey, and a team of doctors, therapists and specialists who go above and beyond the call of duty to ensure he maximizes his potential.

It is hard to believe that people like Justin were institutionalized at birth at one time, because of their poor prognosis. Of course, all mothers worry about their children and the smallest scraped knee is significant in the life of any child.

However, our biggest worry for our Justin is that he always be the best he can be, safe, happy and have access to appropriate medical care. This has been a challenge as it has always been time consuming to assemble a team of doctors and specialists who might be familiar with RTS, not an easy feat when the population is so limited and not every doctor can know about every condition.

So through an international support group, we have relied on fellow parents to direct us to specialists that follow their children and share strategies for dealing with challenging situations, which are many. Justin’s surgical interventions have taken us to multiple hospitals up and down the East Coast and none in our home state of New Jersey.

In light of the economy and cost cutting measures across the board, insurance issues are at the forefront of our worries. We are now confronting a major change in New Jersey’s Medicaid policy that will take place on August 1 requiring Justin to enroll in a Medicaid HMO.

I am concerned about how this change will affect Justin’s access to the medical care that he needs. While I understand changes need to be made, my concern is for children like Justin who have no voice and who must rely on their parents and government officials to ensure their medical needs are being met.

I have always said that while I am alive, my Justin will be fine, but I am ever so terrified for his future when I cannot advocate on his behalf and he will have to rely on government and social services to care for and support him. We are headed down a slippery slope and I can only hope that the decision makers of the greatest country in the world will protect this population that can’t protect themselves.

It is after midnight and I have just come back from a meeting to fight the construction of a cell tower around the corner from my house as a mother’s fight never seems to end. We protect our families, our community and hope that in turn they will protect our children.

soundoff (20 Responses)
  1. jaime may

    i totally understand i have a 2 year old severely disabled daughter that is totally dependant has a shunt feeding tube has had 4 strokes and is blind and thats not all but the point is the medicaid system is letting the most fragile of kids slip through the cracks and its a fight to get the care and supplies to make their lives sustainable i can speak for my baby and i can say i will continue to fight every day to make sure she has the medical care nursing care and supplies and equipment she needs to be happy and healthy.

    June 24, 2011 at 21:51 | Report abuse | Reply
  2. mari khalil

    My son Hadi is 24 and has Angelman's syndrome. On June 1st he lost his medi-cal in favor of an hmo. It has been a diaster. He is not allowed to see any of his doctors, his diapers have been denied because the hmo says they are not medically necessary...he has been incontinent since birth! I have been fighting to get his medi-cal reinstated for the past 3 weeks to no avail. Hmo's are ok if your child is not afflicted with serious/chronic illness. Unfortunately, the very system created to help those in need is no longer sustainable. Just like any mom I will continue to fight for Hadi and for the care he so deserves and needs. Carry on moms!

    June 25, 2011 at 01:02 | Report abuse | Reply
  3. janicegoin

    So as I say, I wake up every morning, thankful that I have exceptional health insurance coverage I found through "Penny Health" for my family because it gives me peace of mind knowing that my family can count on me to deliver their health care needs.

    June 25, 2011 at 05:27 | Report abuse | Reply
  4. FT

    This is the future. Those with no hope of ever being productive will be denied care in the hopes that their demise is sooner rather than later. Families will have to rely on themselves and their own resources to get the most basic care. Prepare as well as you can.

    June 25, 2011 at 05:38 | Report abuse | Reply
  5. mari khalil

    In response to FT..We live in California. Our illegal immigrant population is part of the problem, a large part. The women come here,have kids and apply for welfare, medi-cal being part of the package. It has caused our state to make such drastic cuts in the social services sector. Yes my son taps into that system. However, he was born in this country as was I. The problems we face are not as simplistic as you state. The medical and insurance sectors have a share in the failure of medicaid. Big business or continum of care? I understand your point but I will fight to the very end for my son so that he may live out his life healthy and happy. Halthcare should never be a priviledge as it is in this country.

    June 25, 2011 at 08:54 | Report abuse | Reply
    • Xondra

      however, the ones destroying the economy were americans, or immigrants accepted by americans. It wasn't mexicans who destroyed your banks.

      June 26, 2011 at 00:23 | Report abuse |
  6. mari khalil

    And to fully illustrate my point..both myself and my 22 year old son who is a bio med engineering student don't have any insurance. I can't afford the premium..well over $800 per month. So its just not the disabled, its everyone in a similar situation.

    June 25, 2011 at 09:04 | Report abuse | Reply
  7. Alison

    I wish you all the best with your son. I hope that one day America has the same public health system we have in Canada so you no longer have to worry.

    June 25, 2011 at 09:05 | Report abuse | Reply
  8. mari khalil

    @Alison our country has much to learn from our neighbor to the north. Can't understand why we as a nation can't get with so many other countries which provide their citizens with quality healthcare.

    June 25, 2011 at 09:13 | Report abuse | Reply
  9. easypeezy

    After reading this article and all of your posts, I have to say that I am glad to be Canadian. We may have long waiting times for certain procedures, but never having to worry for two seconds about receiving good medical care or not being able to access a certain doctor is worth paying a little extra in taxes. I hope we never lose our Medicare system here and I hope, hope, hope that the US government can some day figure out a system that will work for every American, including those with disabilities. My son also has RTS and I'm just realizing now that I'm able to stay at home with him while my husband goes to work only because we don't have to pay for our healthcare. I wish that everyone could feel this kind of security. Access to good medical care is a basic human right! Maybe I'm just an unrealistic socialist.

    June 25, 2011 at 09:49 | Report abuse | Reply
  10. Vada

    First of all, solve the border problem and get us some jobs by building a 12ft high, 6ft thick concrete wall 30 yards into our county's borders and shoot anyone that enters that "no-mans-land." Second, I support these cuts. They are driving the economy into the ground (and social security). I've grown up around special needs kids and I know their hardships, but we can't become a 3rd world country for it. I say selective breeding to rid humanity of these disabilities. Still my prayers are with you.

    June 26, 2011 at 02:04 | Report abuse | Reply
  11. Evan

    Hey Friends, please visit HelpFaye.ORG .... about a friend fighting for her life.... Thank you

    June 26, 2011 at 09:39 | Report abuse | Reply
  12. d

    Unfortunately because we are so free with passing out medicaid to everyone, including illegal mexican mothers who come here for 1 or 2 days before having their babies using medicaid (many who end up in the NICU because of no pre-natal care) our system of medicaid that should be protecting vulnerable US citizens is being trashed. The only way to stop it is to send a bill back to Mexico. A friend of mine slipped in a pool while vacationing in Mexico a few years ago and her hospital wouild not discharge her until they had paid thier bill ($10,000) since her US unsurance would not cover her there. They are not stupid in Mexico but we in the US are much too easy on illegals. One reason why our Medicaid/Medicare/Health iinsurance is going down the tubes!!

    June 26, 2011 at 10:53 | Report abuse | Reply
  13. sara

    Selective breeding died out with Hitler and Menegele. Don't listen to the Nazi Troll. He's morally corrupt. All kids are worthy of life and health. We are all children of God and thus as a Christian nation the government is obligated morally and spiritually to care for the sick. Otherwise, we wouldn't be a Christian nation. We'd be capitalists. Oh wait....i guess the Right forgot to read the New Testament.

    June 26, 2011 at 11:07 | Report abuse | Reply
  14. mari khalil

    I think its not right to single out any specific nationality, however the vast majority of illegal immigrants here in california are of hispanic origin. The burden of caring for them has surpassed what is financially possible. Our family is of middle eastern origin. There are businesses her catering to those who have just arrived here legally. They escort them to the local welfare office to get their share of "free money" an unbelievable concept in the mid east. Its rather twisted when one sees a new mercedes in front of the local GR office as they pick up their benefits and food stamp card. My parents came here worked hard at often menial jobs and it was considered shameful to take a handout. Something is very wrong with our system.

    June 26, 2011 at 17:01 | Report abuse | Reply
  15. Sharon

    If we as a society can't/won't take care of those who can't take care of themselves we might as well write ourselves off. It is unconscionable that people are ready to hand out tax credits to the wealthy, to big business, to big oil and deny needed service to the vulnerable in our society. Just disgusting.

    June 27, 2011 at 15:00 | Report abuse | Reply
  16. Ron R

    Genevieve's story is compelling, giving a sense of concern as well as hope that Justin can function so well with the right resources. I too wonder why our country can't provide more affordable health care to more. I wish we had the right decisionmakers who could provide greater access, but also fix many of the problems that make delivery of health care so expensive. Politicians, our country should be embarrased compared to many other countries! In any case, lots of good wishes for Justin and his family! Genevieve, keep speaking out!

    June 27, 2011 at 18:21 | Report abuse | Reply
  17. Yasushi

    NEWS FLASH!Next week obama is reportedly going to enact neathor new project!Obama.. to ensure that 160 million people have the fuel efficient cars that they deserve, I intend to lobby Congress to enact legislation to put aside $657 billion dollars of the stimulus money for this project due to these hard economic times.The gas savings to the average American will ensure those making less than $100,000.00, the ability to pay their mortgages, buy food, and save for their childrens future!

    April 14, 2012 at 15:35 | Report abuse | Reply
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    October 24, 2017 at 04:23 | Report abuse | Reply

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.