In our own words:
Your child with SED
from Birth to 36 months
Written by Christine, a parent of a child with SED
Infants and children diagnosed with a form of Dwarfism are entitled to various services and programs in the United States. As a parent of a 3 year-old daughter diagnosed with SEDC, I have sought out some of these services and programs. I in no way consider myself an “expert” on this subject, however, would like to share a few things I have learned over the years.
First I would like to start with a few things I needed to accept and learn to my daughter’s advantage. “Disabled”, this is not a bad word, it simply means that your child is in need of different assistance than another child. However, in my personal experience, the word seemed like a “label” that made me cringe. I see my daughter as being capable of doing anything she sets her mind too, and I still believe this to be true. Unfortunately, society is very big on “labels” and sometimes you need to use the systems “label” in order to provide your child with the best care and assistance possible. Therefore, on that note I will refer to the systems terms as various agencies and organizations use them. None of the terms used are intended to offend anyone, they are simply terms that are used and hopefully this information will help guide you through the systems.
Keep in mind that there are a few instances where you will come upon the reference to cognitive abilities. I find if I gently remind the agencies that “disabled” does not only refer to cognitive but can mean only physical. Many of these EIP caseworkers only have experience with more common disabilities such as Autism, Down’s Syndrome even Cerebral Palsy (which is generally only physical) but they are not experienced with Dwarfism.
Early Intervention Programs
Every State and or County in the US has an Early Intervention Program. Although this is not always the title. Basically, Early Intervention Programs are to assist children who are within the ages of Birth to 36 months.
To contact your local Early Intervention Program contact your County Social Workers office (can be found in the yellow pages) and ask for the number to your local EIP office. Please see the school page and advocacy section for more information.
This program can provide numerous services and can vary County to County. What I have found from my own experience and from speaking with others across the country is this; program provides services for various therapies. i.e., Speech Therapy, Physical Therapy, Occupational Therapy, Special Education. The Early Intervention Programs are also called “Part C” in some states. This program provides funding for any and all of these therapies. Please see the advocacy section for more information.
In each state this program can also cover items from eyeglasses to adaptive equipment to even safety devices such as car seats. Again, please note that these benefits vary state to state and even County to County.
All of these services are free of charge and are not based on Income.
If you are interested in this program, please be aware that “Dwarfism” is not a standard “listed” condition. You will probably need to provide any and all information you have on your child’s form of Dwarfism. Many Medical Journal articles or data can be obtained from your geneticist. I personally have handed out packages I have put together from material collected from National Conferences as well as my daughter’s geneticist.
When contacting your EIP office, a caseworker will be assigned and they will then ask that your child be “tested”. The tests are basically an evaluation with a physical therapist, occupational therapist and a psychologist. They will determine what services are need for your child and will then have your caseworker assist you with arrangements. Please note, the general response of these caseworkers is you have to bring your child to the Therapist if services are required. You have the right to ask for in home services or in school services if this is more convenient for you and your child. My experience is that it is not first offered due to the costs but it is usually available.
Other services available (again, based State to State) is Early Intervention Schools. There are various Special Education schools in place to provide many of the above services and much more all in one atmosphere. For example, my Daughter attends one of these programs from 9 a.m. to 1 p.m. She not only receives all of her Therapies at this facility but also a safe and encouraging environment. Due to my Daughters diagnosis and neck instability standard Day Care was deemed an “unsafe” environment. The Teacher to Child ratio was very high. In our State it was 6 children to every 1 adult. In the EIP School, she is in a classroom with a 10 to 3 ratio. This enables her to be in a more controlled atmosphere yet still allowing her to have peer interaction. Each Head Teacher holds a Bachelors Degree in Special Education and in many instances a Masters Degree. The 2 additional Teachers are actually Teacher Assistants who are certified by the state.
The classroom is organized as a true learning environment. Her day, when not in Therapy, consists of learning and socialization. Fine and gross motor skills as well as sensory awareness are also part of the curriculum.
Any child 5 years of age or younger on Medicaid is entitled to WIC (Women, Infant and Children’s program) regardless of family income. This will give the children, Milk, formula if child is young enough, eggs, cereal, juice and cheese. If the Mom is breastfeed they will give her all of the above as well as tuna, carrots and beans. If 1 child is on Medicaid and is under the age of 5 any and all children under 5 in the household are also covered.
I found out that anyone on Medicaid who has Dwarfism is entitled to what the federal government calls ORMDD services. This program is paying for Brianna’s home adaptative equipment such as stools, light switch extensions, doorknob extensions etc. I had to prove that Brianna will always need some type of assistance (equipment is considered assistance) for her activities of daily living thanks to Dr. Pauli’s wonderful book about kids in school and they had to approve her!
Also, did you know that Medicaid if requested early enough in advance will assist with the cost of traveling to specialist out of state! That was a home run, they reimbursed us for gas, tolls and the Children’s house as well as food!
Where to go for more information:
- New Diagnosis page: questions and answers for family recently finding out their child is a dwarf.
- KSG Advocacy Center: tips in getting access to health care, finding work, government resources, getting money to travel to conferences, and scholarships for dwarves.
- Do you our research page: learn how to do internet research.
- Medical information about SED, SMD, and kniest.