Early Intervention for children with
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
Early Intervention is a federally funded program that provides in-home services such as speech and physical therapy to children up to age three. Some states continue to offer early intervention programs after age three while others transition to school-based services that can still be provided in the home.
Visit www.EarlyInterventionSupport.com to learn more about Early Intervention in your state.
Quotes from Families
We stopped Early Intervention at age 3. By that point, I wasn't sure it was actually helping Carmen. She stayed really floppy and never got high toned. I do know one family whose little girl with infantile Tay-Sachs went to school; rode the bus and all!
The school system took over Elise's services when she turned 3. We wanted to keep all the therapists we already had since they knew Elise since before her diagnosis. We thought we would have to fight with our district, but when we asked they agreed. We were fortunate to have the same therapists for more than 6 years.
Our school district took over when Emma turned 3. After a little bit of a fight, they allowed Emma's Early Intervention (EI) PT and OT to continue with her, which we really wanted. They allowed us to keep her services at home, rather than send her out to preschool. They also added an amazing teacher, who did a lot of sensory things with her. She had PT 3 days a week, OT 2x a week, and saw her teacher every day. The therapies were tremendously helpful. In NJ, school systems are required to meet with all EI families a couple months before the child turns 3, in order to set up a plan, so that it's in place and can begin on the child's 3rd birthday.