Thursday, April 2, 2009

Today is World Autism Awareness Day

It's worldwide. Autism is everywhere.

Autism knows no boundaries. Autism can and does affect anyone regardless of race, creed, socio-economic status, and gender.

1 in 94 children in New Jersey are affected by autism. Children are diagnosed all over the world every single day. Every minute of every single day.

No one knows what causes autism. There are theories. The problem is that since no two people are affected in exactly the same way, the cause of my son's autism may not be the same as your son's autism.

Since this is autism awareness month, we see more televised news stories about the cost of autism. People have asked why the cost of autism is so expensive.

I'll tell you why:

The costs start with the diagnosis. Depending on your health coverage, for those of us blessed enough to have health coverage, there are out of pocket costs associated with doctor's visits. So we start with the co-pays and deductibles for doctor's visits.

If your child is diagnosed before age three, your child will qualify for Early Intervention services. Early Intervention is a wonderful thing. Because of budget cuts over the last few years, most states have cost-sharing requirements for Early Intervention services. David received 22 hours per week of services. Those services included:
ABA Therapy
Speech Therapy
Occupational Therapy
Physical Therapy
Oral/Motor Therapy.

Therapist do not earn close to minimum wage, not that they should, but for a child requiring services, and our kids require many services, the weekly cost can be a heavy burden.

Once our kids reach school, they will receive educational and support services from our local school districts. Anything above and beyond the scope of the child's IEP (Individualized Educational Program) will be paid for by the parents.

We are fortunate that David is in an pre-school class for children with autism. He attends school full time and he receives 6 1/2 hours of additional ABA home instruction. Those 6 1/2 hours are part of his IEP. They are for now. That may not be the case during his next IEP review.

For our family, the expenses we incur right now involve insurance co-pays for all the doctor visits and labs that are done during the year. There are things we can do for David that would benefit him, but we just can't afford those expenses right now. We do what we can at home, under the guidance and with support from his teachers and behaviorist. But there is so much more we could do.

There are costs associated with respite care. Costs for childcare for working families. Sitters and other care providers who have experience working with the developmentally disabled earn more that traditional child care providers. The costs don't end and they grow as our children grow.


Hummingbirder said...

Thank you for the great post!

Janet said...

We live in Idaho and so things may be very different in your state but... here children diagnosed with a developmental disorder can qualify for a medicaid card, regardless of family income. Katie Beckett cards cover therapy and medical services for children through the age of thirteen (I think that's the cut off, anyway). Is it possible your state has something similiar?

Kelly Yates-Rice said...

Hi again!

There is Family Care here in NJ. It is designed for the uninsured and lower income families. Lower income as defined by federal guidelines, not real life.