Disaster relief for families of kids with special needs

I can't imagine what it's like to be a family that has a child with special needs who's lost their home due to Sandy. If you're a parent of a kid with disability you know full well that even a minor disruption in our lives can be a major inconvenience, not to mention the extra financial burdens we already float.

I hope one of the resources below for families of kids with special needs affected by Sandy helps; if you know of other resources, share. And if you are one of those families, please let us know if there is anything we can do.

• AutismCares provides support for families affected by natural disasters; call the Autism Response Team at 1-888-Autism2 (288-4762), en espanol at 888-772-9050. Or email AutismCares@autismspeaks.org

• FEMA Office of Disability Integration & Coordination coordinates emergency recovery for children and adults with disability. The number listed on the site is the general FEMA number to call for assistance: 800-621-6632. If a family that has a child with special needs in New York or New Jersey is in dire need of help, try Regional Disability Integration Specialist Jim Flemming; james.flemming@fema dhs.gov. The Regional Disability Integration Specialist for Connecticut, Rhode Island, Massachusetts, New Hampshire, Maine and Vermont is Kate McCarthy Barnett, kate.mccarthybarnett@fema.dhs.gov. The Regional Disability Integration Specialist for Delaware, Maryland, Pennsylvania, Virginia and West Virginia is Linda Landers, linda.landers@fema.dhs.gov.

• The Arc | For People With Intellectual and Developmental Disabilities (@TheArcUS) is helping people with intellectual disability and their families in need; click on the state links below to find the chapter nearest you, call 800-433-5255. Some are on twitter, I've included their handles.

Connecticut @TheArcCT

Delaware

District of Columbia

Maine

Ohio

Maryland @thearcmd

Massachusetts @Arcofmass

New Hampshire

New Jersey @thearcofnj

New York

North Carolina

Pennsylvania

Rhode Island

Virginia @TheArcofVA

West Virginia

• United Cerebral Palsy (@UCPnational) affiliates are providing assistance to people in their communities. Click to find a local branch here or call 800-872-5827.

• Portlight Strategies provides post-disaster relief to people with disabilities; email ron@portlight.org. (note, the homepage has a good list of disaster planning resources for people with disabilities).

• The National Down Syndrome Society (@NDSS) formed a fund for victims of Katrina; no word on whether they might do the same for Sandy, but call if you need help: 800-821-4602 (Monday-Friday 9 to 5 ET) or email info@nsdss

• Family Voices (@FamilyVoices) works with families who have children with special health care needs. They're working with affiliates in affected states, and could provide guidance; 888-835-5669 or send a message here.

• American Partnership for Eosinophilic Disorders (@APFEDorg) can help provide feeding tube supplies and formula. Phone: 713-493-7749 (8am - 4pm, CST); email mail@apfed.org

• Do not hesitate to reach out to your house of worship for relief. Here's inspiration from Facebook reader and New Orleans resident Monica Jackson, who went through Katrina: "I remember a church up north got together and collected all the wheelchairs, standers, and other equipment they could find and drove it down in an 18-wheeler to our area. It was a huge help because when we evacuated, we couldn't take all of Dylan's equipment with us, and it was washed away in the hurricane."

And if you're wondering what to tell children about hurricanes...

Sesame Street has a four-part series about hurricanes, from explaining to a child what a hurricane means to helping with cleanup.

A good article on what to say to children about hurricanes from Project Fleur de Lis.

The Friendship Circle has a post on how to prepare a child with special needs for the next hurricane.


Image/Baltimore Sun