Special needs children don’t always come first

Medicaid and the Reality of special needs dentistry

special needs A more in-depth look at a recent report and other data.

In case you didn’t already know it, being poor can cost you in more than dollars;  and having special needs can cost you even more.

In a new study released by the journal Pediatrics, kids on Medicaid were reportedly 38 times more likely to be denied an appointment by any dentist, but were also 18 times more likely to be rejected by dentist offices who said they accepted Medicaid and other public forms of insurance.

This snapshot validates prior studies about the overall disparity between those on Medicaid and those with private insurance who are looking for care.  As this news article from the LA Times pointed out, though, the difficulties of children with special needs finding coverage is a verified issue as well.

How Medicaid impacts special needs children

I’ll share a little secret with you. My guys are on Medicaid. I don’t need a study to tell me something I have already witnessed over the years. After years of having great insurance with my husband’s former employer, he lost his job and we found ourselves with two special needs children (this was before Logan joined the Moody gang) and no insurance.

The boys needed surgery; they needed to see specialist after specialist. They needed–they needed so much. We turned to Medicaid. And while we were thankful to eventually receive the benefits for our children, and while we grumble about the coverage sometimes, I couldn’t begin to tell you how often we have been stigmatized simply because our children receive this needed resource.

This is how it works when you have a child who needs services, who has special needs: you fight for Medicaid because your regular insurance won’t pay for everything your kids need and you don’t want your family to go bankrupt; you still amass thousands, hundreds-of-thousands of dollars, worth of bills because this procedure or that specialist isn’t covered; so you finally fight for and receive Medicaid; and then you fight to find a specialist your kid can see.

It’s this convoluted approach where you fight to prove your child in need of services, and then once they get those services you fight public perception about them having those services, those services that they need because of their special needs. What about public perception? How does that fit into a discussion about dentists or other doctors denying a child an appointment?

The circle of discontent

It goes something like this: you reach out, desperately, for services like Medicaid because you need every resource you can get to take care of your special needs child.  Instead of seeing the need, other people–people who don’t understand your very real needs–are quick to point out how lazy, how shiftless, how irresponsible you are because you can’t pay for your kids’ insurance yourself. You  research more specialists then you ever thought possible because so many offices are strangely ‘unable’ to see your kid anytime this year, or they don’t think they could handle having a kid with that degree of special needs to be responsible for, or because they don’t take Medicaid.

The sad reality is that Medicaid as a service is utilized by millions of kids and families, millions of families struggling to find coverage for someone with special needs. And there is still a stigma attached to being one of those millions who need the benefit.

Medicaid does a lot of good.

Numbers released in February by the non-partisan Kaiser Family Foundation (KFF) stated that one-third of all children and fifty-nine percent of all low-income children are covered by Medicaid or another program that insures children, the Children’s Health Insurance Program (CHIP).

In  her 2008 testimony before Congress,  Executive Vice-President of KFF Diane Rowland said that while Medicaid is known as a primary “source of health insurance coverage for millions of low-income children and parents, the program has become the largest single source of health insurance and long-term care and the largest source of public financial support for people with disabilities.” [emphasis mine]

The problem is that if you or a loved one has Medicaid, though, it is harder to find an appointment when you need it, even in emergency situations.  Consider that if your child has special needs, the likelihood of needing an emergency appointment rises significantly.

The difficulty of finding care if you or loved one is a patient with special needs

A little further down in the LA Times article is this caveat:

There also is literature on dentists’ unwillingness to treat certain populations, including young children, patients with developmental disabilities…(par 5)

While the focus in this study is on access to dental care, patients with special needs find it harder to find willing providers more often than their privately insured counterparts, according to a multitude of reports published by the journal Pediatrics (keywords “Medicaid” and “access to care”) and other Medicaid reports put out by the Kaiser Family Foundation (KFF).

What does this mean in the real world?

While the Medicaid problem provides care for an overwhelming one-third to fifty-nine percent of the nation’s children, and a majority of those with special needs, lingering attitudes and very real Medicaid reimbursement concerns keep many providers from offering the same access to care that those with private insurance enjoy.

While the LA Times article suggested some of the underlying reasons for this, data from Pediatrics shows that the issue is much more complex than whether or not the dentist or pediatrician around the corner wants to see more Medicaid-insured patients. Other factors play a role in denying that access to care.

Those in Washington already looking at cutting Medicaid should be considering the effects of this action, and before they cut one penny, they should be addressing the underlying proclivities of Medicaid to set reimbursement rates and effect policies that make it harder for physicians to want to comply with the program.

For those of us in the special needs community, the benefits can’t be over-emphasized, but that benefit is tempered by the inability to receive the coverage needed.

A final thought, not all of the problems with Medicaid stem from problems with management. Overall public stigmatism is still high among those who aren’t familiar with the program. Fighting this perception of being inherently flawed because of being on Medicaid will take more than studies or changes in Washington, it will require folks to talk, openly, about the program and the benefits (as well as the drawbacks).

Those of us in the special needs community, who require the coverage extended by Medicaid, need to be proactive in helping change public perception while at the same time fighting for our kids to receive the care they need while covered under Medicaid and related services.

Sources used for this Curiosity:

Kaiser Family Foundation/

LA Times article

Pediatrics: Official Journal of the American Academy of Physicians http://pediatrics.aappublications.org/

Stay tuned for an upcoming look at new studies being released by the Kaiser Family Foundation, as well as further discussion regarding new legislation and controversy surrounding cutting Medicaid programs.

Chime in with your opinion:
Do you or a loved one have Medicaid? How does information like this make you feel about your coverage?

If you or a loved one has special needs, have you ever been personally affected by perception or denied an appointment?

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Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody


  1. wairimu kamau says

    the most serious disease facing the special need people is negative attitude there is a lot of focus on the disability at the expense of the person

    • Katrina says

      Thank you for commenting!
      It's true that a lot of people will always see the disability before the child; that's why it is important for parents and advocates to speak out loud and often. Negative attitudes will always be a part of the special needs world, but challenging those attitudes is the first step toward affecting change.

    • Katrina says

      Gina – I know! All the cuts and funding shortfalls and economic wrangling means our kids will get left in the dust. Thanks for commenting. –Kat

  2. says

    It does get worse-it does not, sadly, improve when children become adults. I am the sister in law of a 50-something man with autism, who lives 150 miles from me. His medical doctor doesn't take Medicaid, period. He does have a dentist, where he lives. But if he had to move here-Binghamton, in upstate NY, there is one dentist who accepts Medicaid. I don't know if this dentist even takes patients with special needs and until recently people with Medicaid in Binghamton had to travel to Syracuse-65 miles away-to find a dentist.

    • Katrina says

      Alana – My hope is for a future where those of us who need the protection and care of society will not be turned away, and will instead by cherished for the beauty and innocence and hope that they provide to us all.

      Until that day, we fight. We fight for our children, and our brothers, sisters, parents, grandchildren, and any of those we care about who would be marginalized be a society too busy to care about their needs. And we fight for ourselves and for that same society. For we will be judged by how we treat those who need the most care among us.

      Thank you for your comment, and I hope and pray for you and your family and your brother-in-law. Because I don't just fight for my little guys, I fight for him too.

  3. Harmony says

    I have a special needs child that has been on SSI for the past 5 years, and I recently got married. Because my husband has a life insurance policy that has a cash surrender value of over $3,000.00 my son is losing his SSI and medicare benefits. My son has infusions that will cost $1480.00 a month (our copay) not to mentionall medications, and dr appointments, along with specialists. We will lose everything! Does anyone know anything about getting medicare for your special needs child if over the resource limits???? We are in desperate help. Losing his medicare will even stop his aide services at school and he can not function at school without it!!! Thank you!

    • katscafe says

      Harmony – would you friend me on Facebook — http://www.facebook.com/moody.mommy — I'll need to know your state of residence to dig into this for you any further. I have some connections in most states though, and I'm sure we at least find a few options for you. *hugs* As this is so difficult. I will say that shortterm you will probably need to do something about the life insurance policy – because SSI is just nuts that way. You have many longer-term options, or at least usually do. Friend me on Facebook and send me a message. I have another friend's issue to look into this week as well and would be happy to see if I can't hook you up with a local advocate and further resources. –Kat

  4. Ami F. says

    I am lucky enough to live in a state that provides health insurance for all children based on sliding fee income scale, with the goal that ALL children have health insurance. It’s called the Dr. Dynasaur program. But it’s still considered state Medicaid. My daughter is on Katie Beckett(Medicaid for disabled children, but it was a fight to get it). As long as she is disabled she will have coverage, no matter what our income is.

    But there are trade off’s to Medicaid. My children have very short doctors visits, and I think the care they get is not as good as when we had private health insurance (hubby lost job, lost insurance). My daughter can’t see one of the few (like THREE) specialists closest to us(still 5 hours away!) that treat her condition b/c he doesn’t take Medicaid. We have had no problems getting appointments or being seen…but I think the standard of care and willingess to run multiple tests is not there. We live in a state were almost everyone is on Medicaid or some form of State health insurance so the stigma is not as bad, but I really see a difference in quality of care.

  5. says

    But don’t lie in bed worrying about it. Dentists anticipate the need for emergency procedures so if you are already registered with a dentist, you should be able to arrange an emergency appointment at extremely short-notice, especially if you have a dental insurance plan. Some dentists will have out-of-hours numbers as well.

  6. says

    Well I don’t imagine that there will be much change in the situation because there is no force behind it yet…is there a lobby that caretakers of special needs individuals can get behind to start making a difference?

  7. says

    Its not fair that families with low income have to fight hard to receive

    benefits. The fact that children on Medicaid are 38 times more likely to not

    be seen by appointment at a dentist is alarming. There needs to be a new

    structure so that all individuals have equal opportunity. This is a very

    informative article. Thanks.

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