Special Insurance for Dwarfism

I realized I have not posted anything about special insurance for our little ones, so I figured I do a quick informational post for other parents wondering what is available.

I'm sure there is more available than what I am familiar with, and if other POLP know more, I would love the info, but here is what Ashley has.

One of the first things we did was got her signed up with Children's Special Health Care Services (CSHCS) They are separate from regular insurance and is for specialist doctors.

CSHCS is ran through our (Michigan) states medicaid office in a unique way. There is a yearly premium, which is a lot less than private insurance, or if you qualify for state aid, it is very low cost or even free. I did a google search for a link, but it seems it is a Michigan program, although I'm sure each State has it's own program.

CSHCS helps with getting your child to specialists you choose who fit your child's needs. Ashley has a list of special doctors (ENT, Neurologist, Specific hospitals, Orthopedic doctors etc). These are over and above her regular PCP. When she is referred to a doctor for a specialty service, I call CSHCS & they add that Dr. to her list of providers.

Once a doctor is on her list, she can go to them and CSHCS picks up the bill. We have not had to pay a single c0-pay for any of Ashley's surgeries or specialist appts because of this insurance. This has been extremely useful considering the surgeries Ashley has had.

They also reimburse for mileage to & from Drs appts and I think provide transportation if needed. If there is an out of state appt, or one that you need to drive far for & possibly stay in a hotel overnight, you can get the travel costs pre-approved and they will reimburse for that as well.

I'm sure there are other things that they provide, but those are the benefits we have used for Ashley. You should be able to talk to your state's local health department or social services dept to get that started.

Ashley had a public health nurse for her first couple years and she would come out to the house & do evaluations on Ashley to see how she was progressing and help with the paperwork and finding programs that would benefit her.

Another great source of help for Ashley is Early Intervention. http://www.earlyinterventionsupport.com
You can find some info here and find help in your specific state:O)

She was enrolled with them when she was just a few months old and started receiving speech & physical therapy at the school when she was about a 19 mo. old. They start this program very early and the paperwork can be a little time consuming, but it is extremely worth it! She has been getting speech & physical therapy since that time on a weekly basis.

The coordinators will develop an IEP (Individual Education Program) that targets the exact needs of your child, and work to get them in the programs that would benefit them. All is through the school system where you live locally.

Once your child has an IEP through this program, a lot of doors are opened for the future as they move through school as far as making sure they have the services they need as well as adaptable devices if needed as well.

The teachers that Ashley has are Awesome!!! They had a program called Families First that was a one day a week class I took Ashley to for educational interaction & I was able to take her brother as a newborn as well because she was in the class. Once she turned 3, we were no longer eligible to take the class for free, but after that it was only about $60 for 10 classes, so it was worth it for a great program. Thank You Mrs H !! (Mrs. Hungerford) One of the most amazing, fun, energy filled teachers I know:O)

We meet every 6 months or so to form a new plan for Ashley, see how she is progressing & set new goals. Ashley is meeting her goals wonderfully!

Also because Ashley had an IEP, she was able to be in the headstart program at the school. There was a waiting list of about 80 children this year for the program and we did not meet the family/income requirements, but she was still able to enroll.

Headstart is just like preschool , except is is paid for by federal grants to help children who may have social/physical or environmental issues that would set them behind if they were to jump right into kindergarten with no preparation, so it's a huge help.

Ashley was very shy, so being with other children even though she's half their size is teaching her independence. Also, she'll be in the same school district for her elementary years until we decide to home school her, so she'll grow up with these children, so they' won't see her as different, just Ashley:O)

Even if a family doesn't meet the requirements for the program, it they have an IEP, by law there are a specific number of children they have to enroll due to laws. I have to say Ashley's teachers, principal and coordinator really made this happen and I am forever grateful!


We set Ashley's goals for her first year of preschool last August before she started and at her conference a couple weeks ago, her teacher's word about Ashley's performance was "Phenomenal"

I'm gonna brag a little bit now.... Ashley just turned 4 in March, She has been reciting her alphabet for over a year, she can recognize every letter of the alphabet by sight, & can tell you the sound that each letter makes. She also knows all her basic colors as well as shapes:O) Since her little brother is 2, he is right on track for the same except earlier, because he soaks everything up. If fact our older twins had him reciting Japanese a couple days ago, and he pronounced them great:o)

Ashley's speech has been one of the biggest areas of concern for us, and she has been in classes for over 2 years now with the same therapist Jennifer whom she adores. Looking back, we should not have waited so long to do ear tubes for her because it really delayed her speech when she was first forming words because she was basically hearing things as if they were filtered though water.

** Note to other parents** If a Dr tells you your child needs ear tubes, don't do what we did & ask "Is it ok, to wait, will it get better on it's own ?" Because chances are it won't, and you don't want want to set them further behind. Proactive, Proactive..hind sight is 20/20 right??

Anywho.. back to the speech..now that she's in headstart, instead of taking her up to the school twice a week, Jennifer comes right to her class to give her therapy. It's been great that she's been able to be with the same teachers that she's pretty much grown up with and she'll be able to be in the headstart again next year, and be right on track to rock out Kindergarten:O)

Over the summer our goal is to get her working on reading small words. We've done a little bit with her refrigerator letters, but I'm going to work on some flashcards, so hopefully when she goes back to school, she'll be at least recognizing the basic sight words (ie.. and, the, is, cat, hat, etc)

So those are the couple programs we have her on that have been extremely useful to us and are helping Ashley. I'm sure there is more too. I've heard that LP qualify for Social Security too, but I think it may by a SSI ( Supplemental Security Income) and if so there may be income requirements to make you eligible to receive it, so we've not really looked into it because her needs are being met already.

If anyone knows more I am missing (which I'm sure I am) I'd love to hear & include them.