Major Life Challenges Blog Series

We are taking a closer look at some of the big issues we all can face in our lifetime. Each topic will be featured as a blog series.

Handling Medical Expenses with a Special Needs Child

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May 25, 2011, The Day I Became a Special Needs Parent is a day I will always remember. On this day I found out my seemingly healthy, happy seven year old boy was diagnosed as a Type 1 Diabetic.


Handling Medical Expenses with a Special Needs ChildRaising a Special Needs Child is Expensive


The medical side of a special need can mean big medical bills. The cost of medications, specialized equipment, frequent specialist visits, and a special diet add up quickly. While I have health insurance, I found out almost immediately there were going to be a lot of out of pocket costs.


  • Our “initial” visit to the pediatric endocrinologist was over $700 (the amount not covered by my health insurance)
  • The first trip to the drugstore for supplies and medication $270 (the amount not covered by insurance)
  • The first lab work bill to screen for other complications and a confirmation of his diagnosis $900 (the amount not covered by insurance)


Yikes!! Where was I going to come up with this kind of cash? And, how would I keep up with his ever changing needs? I did my homework and here is what I found out.


Private Health Insurance


Thankfully I am still able to work full-time and take care of my son; I know many families with special needs children are not. My insurance, however only covers 80% of his doctors visits, 70% of his lab work, and prescriptions for insulin are covered (with a co-pay) however, all of his supplies, testing strips, needles, and blood sugar meters are not covered at all.


I had never looked that closely at my health insurance coverage as I just assumed most things were covered 100% after my deductible was met, not the case.


I was going to need help, so I turned to government supported health insurance.


Government Supported Health Insurance


As I was explaining my plight to an insurance underwriter friend of mine she suggested I apply for Medicaid. Really? I had no idea I had a chance of qualifying. I have a decent paying salary, but I am not considered highly paid either; average is more like it. Being a single mom is tough; it’s hard enough to manage our daily expenses, let alone the cost of the medical bills we had already incurred with more coming in every month. 


So I contacted Medicaid and as luck would have it, my child was considered “eligible”. I worked diligently with my caseworker to supply all of the necessary paperwork and meet all the deadlines. It took a few weeks, a lot of paperwork, hours on the phone, and a trip to my local government assistance office, but it paid off—he qualified.


If your child does not qualify for Medicaid they may be eligible for the State Children's Health Insurance Program (SCHIP). This program (offered in every state) offers free or low-cost health insurance for basic medical care.


Everyone’s situation is different as are the requirements for each state. Do your homework to see if you qualify.


Stay Organized


As with anything related to managing your finances this is no different. Keep in mind you will be dealing with your primary insurance carrier, Medicaid, your Medicaid provider, and all the healthcare providers; something is bound to slip through the cracks. But, if you are organized and keep a detailed binder/folder/spreadsheet you can easily reference any discrepancies.


Here’s what you will need:


  • A method: a notebook, folder, spreadsheet
  • Copies of all your insurance cards
  • A calendar documenting your doctor’s visits, labs, etc.
  • Dividers / Tabs for each provider
  • Patience and persistence


The trick is to place EOB’s, reports and billing statements in their respective section as they are received, most recent being in front. By having all of the medical billing information in one place you can easily locate information when you are paying bills, calling for clarification, or verifying that all claims have been processed.


If you ask me the expense of my son’s condition has been the least of my worries. I want what any parent wants for their child a healthy, happy childhood. And I plan to give him just that!

Related Posts:

The Day I Became a Special Needs Parent

The Cost of Mental Health

 Suzanne Cramer

Suzanne is a certified credit counselor and a Social Media Specialist for CareOne Debt Relief Services. Suzanne writes for Divorce, Debt and Finances and Major Life Challenges. Follow Suzanne on Twitter @ADivorcedMom where she shares her insights as a single-divorced mom with tips and tricks to keep your finances in check. 

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  • I wanted to let everyone know as well that if you get a child's medical supplies, such as ostomy, diabetic, urological, incomtinence, and/or respitory supplies through a large mail order medical supply company (such as CCS Medical, Byram Medical, HDIS, A-Med Healthcare, Express Medical Supply, etc.), you can save money.  Most of these companies give discounts if you are paying out of pocket and sign up for their regular delivery plans.  HDIS does this for incontinence and urologic supplies, and you can save up to $10.00 a month or more.  

    Also, Medicaid will pay for most medical supplies, including incontienece supplies for children and adults, but have restrictions on what supply brands you can get and how many per month, unless you have a letter of medical necessity from the doctor.  I had to do this for my urinary catheters through Medicaid, because they wouldn't cover the ones I used at first (LoFric Primo hydrophillic catheters), but once my urologist explained that they were the only brand that would fit in my cathing stoma, they covered them 100%.  The same goes for diabetic supplies: if a certain syringe, meter, or lancet is better than another, see about getting a letter of medical necessity to get them covered.  Hope this helped everyone!  I have been on Medicare/Medicaid for almost 11 years, so I know the ins and outs quite a bit.

  • Medicaid coverage varies from state to state, because each state has different Medicaid waivers in place.  If your child has significant chronic issues requiring lifetime care, moving to another state may be the right thing to do.  I wish I knew then what I know now, because I would left AZ in a heartbeat.  No disability is more discriminated against right now than autism.  The lifetime cost for a family according to studies is $3.1 million, yet many states like AZ are putting up gatekeeping restrictions and limitations to get out of paying for care.  

    My husband and I had to get divorced so my daughter would qualify for Medicaid, and even then the care she received was limited because she did not meet the criteria for Long Term Care in our state (Arizona).  She was able to receive services in the behavior health system, but not habilitation, speech therapy or occupational therapy, all of which are only available to Long Term Care recipients.   She was "aged out" of the system at age 18, in violation of federal law that is supposed to cover children until the age of 21.  We remarried and we are on private insurance now which covers autism, but sadly does not include the providers who are autism experts, so we continue to pay for care out of pocket as best we can.

    We are creative and resourceful as we can be.  We recruit family friends and train them ourselves as hab workers for her.   We taught ourselves speech therapy and occupational therapy out of workbooks.  We do the gluten free / low casein diet and it helps.  She has learned to use her cell phone as a communication aid and a schedule reminder.  We don't know if she will be able to attend college.  We don't believe she will be able to hold down a regular job.   We are planning to build a small business around her art and craft skills.  Even if she can't go to work, we hope she can at least be doing something productive with her life.  

    An addendum to your post.  SCHIP is no longer offered in AZ.  It has been frozen to new enrollees for several years now.   Bottom line:  Don't get sick in Arizona.

  • I'll admit I've made some financial mistakes along the way. Married at twenty my husband at the time and I wanted to live the American dream; nice house, two cars, and all the "toys". We worked hard and thought we deserved the best, even if we couldn

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