New Rutgers Law grad fights for disability rights
BERLIN - Amanda O'Keefe doesn't take no for an answer.
No, the state doesn't pay for summer camp for children with developmental disabilities. No, there is no in-home therapy to teach your 14-year-old sister how to get dressed in the morning. No, there is no funding for one-on-one assistance.
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But after countless hours of dogged research and long conversations on the phone, the 25-year-old discovered the correct answers are yes, yes, and yes.
Her family's fight to access services led the Berlin Borough resident to pursue a legal career centered on disability rights and advocacy. This month, she graduated from Rutgers Law School in Camden, and is studying for the three-day bar exam this summer. Her little sister, Paige, has a form of Turner syndrome, a chromosomal condition that causes a range of physical abnormalities and sometimes developmental disabilities.
The pair have a close bond that began in Paige's infancy, when 10-year-old Amanda carried the 4-pound, 12-ounce newborn, changing her diapers and fussing at the way others held her baby sister. Until a couple years ago, Paige refused to sleep in her own bed, choosing to share her sister's instead. Even now, Amanda finds creative ways to delight her sister: arranging for a D.A.R.E. officer to bring her flowers for her 8th grade graduation dance, or doing up her hair for a recent prom.
"She's been my complete inspiration for even going to law school," O'Keefe said.
While at Rutgers, O'Keefe poured more than 300 hours into a pro bono project she developed to help families understand New Jersey's complex system for people with developmental disabilities. Called "Learn Empower and Advocate for the Developmentally Disabled” (LEAD), the Web-based educational tool can be used in workshops and group presentations, or shared online. It includes practical tips for families, like O'Keefe's hard-won lesson: "Never give up."
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Last year, when her mother struggled to get Paige dressed every morning, O'Keefe suggested she reach out for in-home assistance, a program she learned about during her research. After her mother spent three fruitless phone calls with PerformCare, the behavioral health managed care company that administers New Jersey's Children's System of Care, O'Keefe got on the phone herself and asked the employee to detail every program available.
It worked. Today, the family receives daily in-home assistance to help Paige get ready every morning, and she's since learned how to put on her own socks and shoes. They went through a similar hassle to obtain respite care, a buzzword that really meant summer camp for Paige.
"A lot of families don’t push that far," O'Keefe explained. "Once they’re told no, a lot of times they accept it and move on."
"They have no clue what services are out there," she added. "There's a lot of summer camp assistance from DCF (the state Department of Children and Families). That means the state will pay for a child to go to a special-needs camp, or pay for a one-on-one to attend summer camp — that's a huge thing."
O'Keefe has been hired by Hinkle, Fingles, Prior & Fischer, where she will begin work this fall as an associate. The firm specializes in legal services for older people and those with disabilities. Its now-retired founding partner, Herb Hinkle, was one of O'Keefe's professors and mentors for her LEAD project.
Such advocacy work is especially important for low-income families, Hinkle explained. The patchwork of agencies and providers, complex eligibility requirements and a government bureaucracy with more demand for its services than it can handle means overwhelmed families have to be tenacious.
"The system is bewildering to anybody, but especially to people who are on the lower end of the socioeconomic spectrum," Hinkle said. "It's very easy for them not to get the services they need and are entitled to."
Since graduating, O'Keefe has turned her project over to two Rutgers Law students, Allan Zhang and Emily Preziosa. The two will continue O'Keefe's research and are translating the project into Spanish.
It's powerful information for families, explained O'Keefe's mother, Lisa O'Keefe. She leads the Regional Family Support Planning Council for Camden and Burlington counties, an advocacy group for families of loved ones with disabilities. The group hosted a LEAD presentation and "everybody at that meeting walked away learning something they didn't know," Lisa O'Keefe said.
"You don’t know what kind of help is out there," Lisa O'Keefe said. "If you don’t know exactly what you’re asking for, or you don’t describe it right, the services don’t link up. It is really challenging."
Kim Mulford: (856) 486-2448; kmulford@gannettnj.com