Special Needs Kids: Get the $$ Help You Need

Cynthia Dermody
Toddlers & Preschoolers
21

recession guide


special needs kids

Photo by aurorabunny

In talking about shaving costs on big toddler expenses like diapers and food as part of our Get Real Recession Guide, we can't forget that parents of children with special needs have it doubly hard in this yucky economy.

"Therapies are often the biggest expense parents with special needs children will encounter," explains aurorabunny, mom of a 2 year old autistic son on the severe end of the spectrum. "Many states have programs that offer these therapies, and while this is a wonderful help, it may come too late for parents who did not receive early diagnosises for their children or for families who may not fall within the income brackets necessary to receive them."

But that's far from all. Other pricey extras that moms of special needs kids have to worry about include:

Equipment Anyone who has a child that has needed physical or occupational therapy equipment, which can include bigger items such as chairs, swings, etc, knows that the LOW end price range of these items is often $600 or more, aurorabunny says.

Diapers Many special needs children stay in diapers much longer than a 'typical' child. In addition, as the child grows and the typical diapers will no longer work, they need to turn to specialty items. And any time you do that, you can pretty much count on shelling out the dough.

Cribs aurorabunny's son, with his constant pacing, jumping, headbanging and other behaviors, completely destroyed his crib in no time flat. She had to invest in one that was solid quality wood with no drop-down bar just so he wouldn't destroy it -- for $600!

Clothing Moms of special needs kids often have to special order clothing (read: you'll pay a small fortune) that does not have tags or zippers because of sensory issues.

In fact, aurorabunny estimates she's easily spent $20,000-$30,000 out-of-pocket, and her son is not even 3. A recent study conducted at Harvard University indicated that the cost of raising one autistic child from birth through age 18 costs $1 million, and the cost of raising an autistic child for their entire lifetime is estimated at $3.2 million. 

I thought it was so important to bring this discussion to the table for all the moms of kids with autism, Asperger's, Down syndrome and other special needs who are struggling. aurorabunny helps to answer some initial questions I had -- feel free to add your own, as well as your advice and suggestions, in comments:

Tell me about your son. What services does he receive?

I live in Missouri, and we have been blessed enough to receive services from our "First Steps" program here. That covers children from birth to age 3. My son receives nearly 30 hours per week of therapy at no cost to us, since we fall into the income bracket necessary to receive the services. 

However, my son turns 3 this year and at that point his services will cut off. At that point, my son will be attending a school that will cost us $2,000 per month, none of which is covered by our private insurance. With our son's on-paper diagnosis, we have gotten him on Social Security Disability, which provides us with $674 per month. This will help with the school that provides the therapies he needs to succeed (our local school district does not provide these therapies.)

Your insurance doesn't cover any of this?

The day we received our son's official autism diagnosis, Blue Cross and Blue Shield informed us that he was an "exemption" and they would not pay for anything related to autism treatment, including therapies. This is changing in some states, but there is still a long way to go.

Is the bad economy affecting treatment and services?

Yes. Special education in school districts is among the first department to receive cuts. I have seen this in our own district. Thankfully, we are an established family in the program and will not have to deal with this. But new incoming "First Steps" families will now receive just ONE therapist to provide multiple types of therapies, rather than several people experienced in each area. To me it's like asking an optometrist to perform brain surgery.

If I was forced to deal with this new set-up, I would definitely feel more pressure to pay out of pocket for services, as I do not personally believe it is safe to ask an expert in one field to perform the jobs of other people -- especially if they aren't certified to do them.

For parents whose children were just diagnosed with autism or other condition, what should they do now to get paid services?

If you have a diagnosis and need help to pay for therapy, equipment or services, contact your local Social Security office and apply for disability. The process can be hellacious, so make sure you have all the documentation. Many people get denied the first time they apply, only to be accepted upon re-applying, so don't give up. 

What documentation do you need?

  • A detailed, on-paper diagnosis of your child's condition from a credible institution.
  • Your child's entire medical history and records of every doctor that they have ever seen and why, from birth on.
  • Financial information from everyone in the household who works; even now that my son is on the disability, my husband has to fax his paychecks to the Social Security office on the 5th of every month.
  • The basics of everyone living in the household; Social Security cards, birth certificates, drivers licenses, etc. 

Any other options?

If your child is under age 3, ask your child's doctor to refer you to your state's Birth-3 agency. Income limits are high, so there is a good chance your child will qualify for free or discounted services. Ask your pediatrician or local child development center to help you find out if there are any studies or research projects going on in your area and find out if you might qualify.

We got several free months of extra therapy for my son just by agreeing to have his progress videotaped for a study that was being conducted at the local university. There are also websites such as Autism Speaks and Easter Seals that allow you to apply for grants.

++How are you paying for goods and services for your special needs child in bad financial times? Do you have any tips to share with other moms?

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