Figuring out Early Intervention

by Jen Reeves on May 12, 2011 · 3 comments

in 2011

She was so tiny once!

Since this blog started almost six years ago, there are so many topics discussed and buried. That’s why I thought it would be worthwhile bringing up Early Intervention again. I had a conversation on the Born Just Right Facebook page with a mom who wondered if limb different kids qualify for any long-term insurance assistance. Every state handles special needs differently, so if you have a child who is between the ages of 0-3, it’s worth checking out the Early Intervention program in your state. I live in Missouri where it’s called First Steps. The list of children who qualify for the program is pretty restrictive. Jordan did not get in automatically but some states put limb different babies automatically into the program at birth. Other states enroll babies and toddlers if you apply. In my state, I had to appeal a couple of times to get Jordan in. Her limb difference did not get her in, it was her because she had low tone in her torso and neck. (Which we still don’t really know why she had that problem at birth. She’s incredibly strong now at five years old.)

So if you didn’t get enrolled when your child was born and he or she is still in the 0-3 range, I highly recommend investigating. The fastest way is by searching the Internet for “Early Intervention” and your state’s name. I also discovered the National Dissemination Center for Children with Disabilities (NDC/NICHCY). The organization is set up to help and it has a state-by-state collection of governmental organizations that offer families of special needs kids support. The site says she search is not fully functional but it seems to work. The contact list for each state seems a bit formal so a newbie parent may not understand all of the terms that describe which organization is the right organization to contact. But it’s an organized start! Plus, it offers support and contacts for services for children up to 22 years old.

When Jordan grew out of the Early Intervention program, we were fortunate to live in a county with a support program. The non-profit helps special needs children and adults. It offers services and funding support. I’ve been able to apply for grants that help me pay for the co-pay on Jordan’s prosthetics. The group also has grant money to attend conferences, summer camps like Camp No Limits and adaptive sports. Jordan’s been able to take part in a fabulous equestrian therapy program. She loves horses and is so lucky to have access to a stable that is caring and awesome. I wouldn’t have known about this organization without the help of my early intervention program. (Although I’m pretty sure I would have found it eventually.)

Nate Ramsey (who is a wonderful poster on this blog and on Facebook) reminded me that you can’t forget Shriner’s Hospitals. They help support children up to 18 years old with devices that might be needed. I visited Shriner’s with Jordan when she was baby and I chose to go a different direction for her prosthetics. But they build awesome tools for all kinds of lucky kids!

If you feel alone, you’re not. There are programs out there. You might have to dig, but you’ll find it. The Internet is awesome like that.

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{ 3 comments… read them below or add one }

Nate Ramsey May 12, 2011 at 10:50 am

Great resources!

In some states, insurance coverage can actually be more difficult to obtain for people with limb differences. Insurance companies tend to shy away from “pre-existing conditions”. I think this tends to affect adults more than children. If you are concerned about the future, you can support prosthetic parity legislation through the Amputee Coalition of America.

Also, the Shriners Hospitals for Children provide a spectrum of free services to families and kids. This includes prosthetics and some occupational therapy. The organization is simply wonderful. My family relied on them exclusively when I was growing up. There may be a need to travel in order to get there though.

Scientific research has conflicting suggestions about the best time to provide a child with a prosthesis. Some research even suggests that congenital amputees have no difference in function or quality of life if they do not wear a prosthesis. While the lack of guidance can be a little scary for parents, it means that you have some freedom in choosing when and how to intervene without any threat of harm. :-)

Kami Paris May 12, 2011 at 6:33 pm

Is the county support program you mentioned Boone County Family Resources? Would love some assistance with conferences, camps, etc.!

Jen Lee Reeves May 13, 2011 at 9:14 am

@Kami – it is Boone County Family Resources! They are wonderful.

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