Medical grants - please help

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I am in Illinois.

My son was diagnosed PDD-NOS, Mood Disorder-NOS, Sensory Processing Disorder, and for his vision - monocular esotropia, amblyopea, ocular motor dysfunction (just received the eye testing results late last week).

Mood Disorder - seeing psychiatrist
PDD-NOS - started socialization therapy at school, waiting for IEP assessment to see if he will be eligible for other services
SPD - Same as above, waiting to see if they will cover OT in school

For his vision, the insurance company will not cover therapy. His poor vision (zero peripheral vision in either eye, line skipping, word jumping, eye strain, etc...) affects every aspect of his life, including exagerating his SPD.

I love his vision doctor, he specializes in special needs kids and completely understands disorders such as ASD and SPD - he is one of the leading developmental optometrists in the country, I cannot say enough wonderful things about him. They adapted all the testing for him, to respect his sensory and ASD, knew exactly what to do and not to do w/out me explaining it all.

The vision therapy is 40 visits once per week at $120 each and 6 progress test visits, plus and orthopedic device to be kept at home. The total cost is $5600.

In regard to his overall treatment, I consider vision and OT to be the most important. The vision and SPD have the hardest impact on his overall functioning.

I can't afford the vision therapy. If I clear out my IRA at work, I can pay for part of it.

Does anyone know of any organizations that offer grants for therapies not covered by insurance, that are not directly related to Autism, but present in an ASD child?

I guess I will also try to pursue this coverage through the school, but I imagine that will be extremely difficult to get them to pay for it.

Any ideas? I am feeling very overwhelmed and alone...and I know this is only the beginning.

Thanks.

Wow, I am glad you support your son so much! I don't know anything about any of this, though. I just wanted to give you some (emotional???) support.

Thanks, I appreciate the support.

you dont state whether its private insurance or medicaid, but have you looked into whether this therapy would be covered by medicaid if you get a medicaid waiver? the waivers are for children under 21 with a diagnosed disability and unlike regular medicaid, parent income and resources are generally not counted. the waivers vary by state, some states have waiting lists i believe, but its worth looking into as a backup insurance resource for things your regular insurance wont cover.

It is private insurance. Thank you for the suggestion regarding a medicaid waiver, I just looked into it. I guess in IL (idk if it is the same for all states) the waiver is for low income people that are at-risk or already in residential treatment facilities. Uggg...

The states decide how to work it, but don't assume that he's not eligible. Your son has no income and is at risk. That meets their requirements. The whole idea behind waiver services is to pay for services at home, so the patient does not need to be institutionalized.

Don't give up, even if you are told he doesn't qualify. Most people in the system haven't heard about waiver, so they will swear it doesn't exist. Keep asking until you reach someone who can tell you how to proceed.