Eight years ago, when Pam Floyd's son, Chaz, was a newborn, Floyd suspected something was wrong — Chaz didn't seem to be getting enough nourishment from breastfeeding. But when she voiced her concern to doctors and her home health nurse, Floyd was told to relax, that nothing was wrong. When Chaz was 6 days old, he suffered a stroke — caused by severe dehydration — that left him with cerebral palsy and a global developmental delay.

“I was furious,” Floyd says. “The medical community refused to talk to me. Everyone told me everything was okay, when obviously it wasn't.”

Floyd was so angry she took her story to her local newspaper. Then, national news organizations interviewed the family. “The next thing we knew, parents were calling from all over the country, saying ‘This is what happened to my child,’” Floyd says.

Thrown into the role of parent advocate, Floyd began a newsletter called “The Special Needs Club” for parents of children with special needs. And, in 1998, Floyd established the non-profit advocacy organization called the Special Needs Assistance Program for Children.

Based in Norfolk, Va., and administered solely by parents of children with special needs, SNAP provides assistance to families across the United States. “Most of the time, parents will call needing information about or help with a [program or type of equipment],” Floyd says. “And if we don't know the answer, we know where to find it.”

The program's outreach efforts range from educating parents about Medicaid waivers for assistive technology and diapers to educating the abled population about the rights of individuals with special needs. “One of our issues is the Americans with Disabilities Act, especially as it concerns parking spaces,” Floyd says. “The spaces aren't wide enough, or the blue lines for wheelchair ramps are on the wrong side of the spaces. And we've started printing notices to place on the cars of people who are parked illegally in handicapped parking spaces that say, ‘We know you probably were in a hurry, but your parking here was an inconvenience for a person in a wheelchair.’”

“Parents of special needs children have to fight for everything,” Floyd notes. “Stuff you would think is common sense, is not.”

SNAP also provides grants to the families of disabled children for therapeutic and medically necessary equipment and supplies. To qualify for the grants, parents must provide a letter or certificate of medical necessity, along with a denial from the family's health insurance. SNAP grants frequently cover non-reimbursable items such as car seats for larger children, bath chairs, tricycles and wheelchair ramps.

Money for the equipment comes from donations and from the proceeds of an ongoing, online celebrity auction. The auction, accessible at www.snap4kids.org, has been a hit, Floyd says. “We've received items from authors, actors and musicians,” she says. “Paul Newman is our favorite. We got $10,000 for one of his cookbooks last fall.”

In July, SNAP will begin the process of opening parent education and information centers in all 50 states. After a two-year training period, Floyd hopes to employ 10 SNAP representatives to oversee centers in five states, as well as one parent in each state to maintain the centers.

Though Floyd acknowledges other organizations that provide education and advocacy for parents of special needs children, she says “parents are not going to get the honesty there that they will through us, as parents ourselves,” she says.