As a pediatric home nurse with Bayada Home Health Care, Brandi Endicott, of Port Republic, has watched families struggle to get services for their disabled children.
"Some had so many issues," she said. "They couldn't get equipment. They had no help with school IEP (individual education plan) meetings. I thought if we could get together, maybe we could help each other."
In November, Endicott booked the meeting room at the Atlantic County Library in Mays Landing and invited parents to come monthly and share their concerns at a new Parent Advocacy Group.
Guests have included representatives of the Statewide Parent Advocacy Network, or SPAN, state Sen. Jim Whelan D-Atlantic, and representatives of PerformCare, administrator for the state Division of Child Behavioral Health Services.
The group now meets monthly, sharing problems and solutions, and knowing that if they sound frustrated, or even cry, the other parents there will understand. Endicott's daughter, Madison, 14, comes along to help entertain and keep an eye on children who come with their parents.
At a recent meeting, parents talked about the difficulty of getting mental health services, and how some professionals ignore parents. Parents said they want to learn more about how to help their children themselves, and not just send them into programs.
Al Nicholas, of Hamm-onton, said his 8-year-old daughter, Hannah, had strokes before birth and has multiple problems including brain damage and seizures. He said dealing with all of the issues and state agencies can be overwhelming, and sometimes it just nice to have other parents to talk to.
"We've really never had the opportunity to connect with other parents," he said. "And we can be a resource for other parents. Services are hard to get."
Lynette Miller, of Galloway Township, said parents need to have a voice in the process, but are so overwhelmed they just don't have the energy.
Endicott said she wants the parent group to be that voice. She said today doctors can save more and more babies with serious disabilities who might otherwise have died. But the services they need to live are not always there to help them.
She said it helps to be creative, and services can sometimes come from non-traditional sources, such as the Boy Scout troop that built a handicapped ramp.
Miller said the battles families face to get help never end and are fought every day.
"It shouldn't be this hard," she said. "It shouldn't take this long."
Contact Diane D'Amico:
If you go
The next meeting of the Atlantic/Cape Parent Advocacy Group will be at 7 p.m. Oct. 23 at the Mays Landing branch of the Atlantic County Library meeting room on the second floor. Parents can get more information by calling 609-276-5269.