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Factoids: Cleft Palate Repair

This weeks list provides some basic information on cleft palate repair:

  • Currently no insurance companies in the US of A cover cleft palate repair or the corresponding speech therapies or educational assistance programs.
  • 70% of all folks with a Cleft Palate have a corresponding lesion in their brain.
  • Brain scans cost about $3,000 to find out if there is a lesion and in what part of the brain map.
  • If a speech therapist knows where the lesion is in the brain they can teach the brain how to use this knowledge to advantage and as an opportunity not a crisis.
  • Doctors must make up/lie on surgery forms for the insurance companies to cover even basic humane repairs for a child with a cleft palate or lip or breathing problems.
  • In various parts of the US of A Cleft Palates occur in 1 in 500 births.
  • Insurance companies can cancel your insurance policy 15 minutes into surgery and you can end up paying everything. They only have to call and tell someone at the correct home phone number that they are not covering this surgery – in our case a 5 year old child took the message and had the where withal to know to call the surgery center at our local hospital.
  • Charity groups and churches do not wish to do fundraisers for cleft palate repair as it is not glamorous enough.
  • People with Cleft Palates have an extremely high incidence of alcoholism, this is due to their attempts to self medicate.
  • Folks with cleft palates can kill themselves instantly if they are missing sinus cavities and they snort most drugs.
  • Most people with clefts will tell you or educate you about clefts but they would rather you look at them in the eyes than stare at the scar.
  • Collagen shots may keep the nose functioning and are not just a beauty secret, but are hard to come by because the rich need them for beauty.
  • There are lots of people out in the world who will charge you lots of money to assist your child in their development – only believe a few of them.
  • Americans make millions of dollars in donations to overseas cleft repairs of children in poverty – hip hurrah! But many babies each year are put to death or starved to death because their parents have no way to pay for cleft palate repairs.
  • Social Security does not consider it to be a disability.

5 Responses to “Factoids: Cleft Palate Repair”

  1. mj Says:

    Trish, I googled “insurance coverage for cleft palate”. Here is what one line said:
    You’ll be relieved to know that in most states, medical insurance does cover cleft lip and cleft palate surgeries. It is listed as a medically necessary reconstructive procedure to restore function.

    I found several such articles. Why the disparity between your real-life experience and these articles I wonder??

  2. Patricia Says:

    MJ
    It is different in every state and we have met lots of people from Missouri, Ohio, NJ, and NY who come out here because our Children’s Hospital considers it now a necessary reconstructive procedure – not the insurance companies. But one still has to make claims that is it a breathing problem or a swallowing problem – They do not repair the food coming out the nose or any of the learning problems.

    Partly too – some of the repair work is done by caring physicians who just take on a child’s case and do the work that is needed – like our Physical Therapist.

    Also so many parent’s have sued, for surgery – the Doctors they would rather do the work than be sued….

    I am also not talking about how many insurance companies I challenged over the past 22 years to get the kinds of coverage our state has now.

    We pay $1,000 a month for our child’s insurance coverage currnently and that does not include the money for medications. There is no dental coverage for cleft work…although fire fighters and police benefits now cover the braces part of the repair work at about 60%.

    I have spent 20 years talking to service groups, adoptive parent groups, members of congress, legislators and International committees about this work. I am hoping all the “hot air” has made a difference!

    Nice to see your comments! Hope you are doing well.

  3. Patricia Says:

    Oh yes! you said you googled cleft palate repairs…I had no computer or Google just the phone and the library and good old foot work 23 years ago…

    I am on a National Board which works on Cleft Palate repair and educational services in the USA…we work with each states insurance commissioners sharing information and resources. We sure wish we could get Senator McCain off his duff and do something or resign from his tentured position on the National Cleft Palate review board…particularly since his adoptive daughter Bridget got all her needs met free – gratis…He says that parents who have such a child need to grow up and take responsibility for their child.

    Computers are pretty awesome – how do we remember times without them!

  4. Cindy Dunn Says:

    I have a 17yr old son and have lived in Oklahoma and Missouri and have been told numerous times my insurance plans won’t cover his cleft palate and orthodontic needs. I don’t think anyone who knows insurance will cover these needs should keep it a secret especially if they are on a board of whatever and can make it known….we’re trying hard to get his surgeries done thru the Shriners who have lost tons of funding and are stretched on days to do surgeries and money to do orthodontics….they are a BLESSING. If you have a way to let us know where to find the information to pass on to the insurance companies….by ALL means LET US KNOW!!!

  5. Patricia Says:

    Cindy,
    Thank you for coming by and finding my post, I truly understand your dilemma. We were told repeatedly that we had to go through Shriners or the not so local Children’s Hospital for meeting our needs with our cleft palate child’s needs. That would have eliminated all the educational/ tutoring needs all together. Instead we put together our own cleft palate review board consisting of a health ins. agent, plastic surgeon, orthodontist, dentist, and pediatrician, plus ourselves and our connections with Educational Specialists and Speech therapists.
    All of the surgeries beyond the basic lip closure that we got financial assistance for we described not as cleft palate repair…such as the back of the palate flap was due to breathing problems…and the bone transplant was for creating the ability to chew and keep her from starving to death.

    Then we did fundraisers…and I took a class on grant writing and I got 3 grants for her educational testing and needs…

    We took out loans against our house….and are still $250,000.00 in debt on that front….
    We did not go on vacations and we made all of our children buy their own college and camps, clothing and shoes – and they with a couple of grants they were able to get to Europe and do some explorations.

    I think when you are so involved on a daily basis it is very difficult to get legislation passed – now with the new health care bill – Cleft palates will still be considers a pre-existing condition and possible bankrupting families.
    I wish you luck and strength and would be very happy to stay in touch and see what we can figure out…to help children in need.