Don’t Leave Resources on the Table

January 25, 2016

When my son first regressed, one of the pieces of information that I got from a fellow mom was to get on the waitlist for a Medicaid waiver immediately because the waitlist was astronomically long. I didn’t listen – it took about eight months before I could deal with the idea.  I am writing this blog so that you will know that you need to do this as soon as you can.

Every state has different resources for children who are diagnosed with autism and other chronic illnesses.  If your child is newly diagnosed, you need to work with your early intervention team to find out what agency in the community is responsible for administering the state’s program.  If your child is older, reach out to the special education department of your school district to find the name of the right agency.

In Colorado, we have several Medicaid waiver programs that kids with autism can qualify for. The idea of a Medicaid waiver is that it waives the maximum parental income requirement due to the child’s disability and needs, and the various Medicaid waivers cover various services.  We are on a waiver in Colorado that covers occupational, speech, and physical therapies, skilled nursing, and copays for almost everything else. We waited on that aforementioned astronomically long waitlist for five years for the next level up waiver, which would’ve also covered vision therapy and ABA therapy, but at the end of the wait, were determined to no longer qualify by an out-of-state auditing company; so we then waited another nine months to get on this particular waiver.

Interestingly, in Colorado covered skilled nursing services can come from a parent who becomes CNA (certified nursing assistant) certified. Yes, you can be paid to do what you are already doing. We’re going through the process now to see if we can get our son qualified for skilled nursing and send one of us off to CNA school.

I talk to a ton of moms in Colorado who have no idea that there is state and federal money on the table to provide services with a Medicaid waiver. They assume that there isn’t anything but their own health insurance and don’t dig further. This means that those kids aren’t getting the occupational and speech therapies that help so much.

I will tell you that the yearly interviews are agonizing – because you have to approach them from a “this is my kid’s worst day” scenario and you go totally into PTSD for a while. You also are allowing tons of case managers into your home and your life. We currently have case managers with three different agencies. Those case managers are paid to help you. They are a resource that you want. I promise it is worth the pile of paperwork you will be buried under.

~ JuicyFruit

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