One of ENYDDA’s members, Steve Gonyea, has asked that we share this with parents and families -GREAT RESOURCE!
ENYDDA parents:
I’ve been working on this project for over a year three to four times a week to help a small team of Professionals and Special Needs Parents from all over the USA to launch this one of a kind National Special Needs “Resource” Directory across the country. This was released in NY State first on Friday. And they should all be represented now in Phase 1. There is nothing like this out there, especially as comprehensive as this. This will show waiting lists and mileage to providers and specialists and if they take insurances. But also clinical and every support around the IDD world of resources . All specifically geared to a diagnosis or disability or condition and so many other things. Data is being added almost daily. We expect this to be the Wikipedia of Special Needs.
Site: https://specialneeds.help/
The above is just phase 1. We have additional phases rolling out that will provide valuable information and resources for our families everywhere.
Phase 2 and additional phases will have support groups and parent to parent or professional to parent one on ones etc.
Our NY State OPWDD commissioner is actually taking an huge interest in this and is meeting with our Board in about a week. Others including parents who have registered and tried this love it. And it’s FREE to families and parents and caregivers. They just have to register. I would love for you to spread the word…
We continue to add features. A bigger point to me is the fact that we can accumulate data across a county or state and say we have 700 families in central NY looking for a dentist who does sedation for autistic individuals and they only have 1? Well that’s the data we are going to use to change systems and approach dentists and hospitals etc as an example. And then the politicians and lobbyists and federal agencies. They want data? Real data? We will have it.
Would love for you to share this!
The above is the first of its kind in the USA & World and it’s so out of the box and creative and the thing that’s going to make it work and so helpful to parents is the fact that parents are involved in the input. I’m on their Board of Directors and their Board Treasurer and most importantly have a ton of lived experience in all of this to be able to add insight and creative angles of the directory. Stay tuned.
Respectfully
Steve Gonyea
ENYDDA 