March 29, 2011

Mom Advocates for Disabled

Peggy O'Farrell   ·   ·  Link to Article

Like all moms, Lucinda Hurst is an advocate for her son, Andy.

Andy, 9, has Down syndrome, a genetic disorder marked by delays and limitations in his intellectual development. He's learning to read now.

But Hurst, who lives in Hyde Park, is learning how to be a more effective advocate for all children with disabilities through a training program at Cincinnati Children's Hospital Medical Center and the University of Cincinnati.

The LEND program - Leadership Education in Neurodevelopmental and related Disabilities - is recruiting family members of children with disabilities to learn how to develop their leadership and advocacy skills.

The program is federally funded, and open to families, as well as professionals in health-care and education, including physicians, nurses, speech therapists, psychologists and others who work with children with developmental disabilities.

"These are folks who may take a leadership role in a local or regional advocacy organization. They may one day direct a training program at the graduate level for health and education professions," said Karen Edwards, program coordinator.

The goal is to train parents and providers to improve services for disabled children and their families, she said.

Participants learn how to better recognize and diagnose developmental disabilities, how to help families find appropriate services and how to evaluate existing services in their community, Edwards said.

They also get a chance to meet with lawmakers and learn how to influence policy decisions affecting services for people with disabilities, including issues like employment and education, she said.

Participants are matched up with families so can get a "real world" understanding of the issues families face.

Hurst has worked with program participants for six years as a parent mentor.

"I took them with me to some of Andy's appointments when he was younger, to his IEP (individual education plan) meetings at school, to Christmas pageants and his baseball games, to show them what it's like," she said.

While it's important for families to work with professionals to their children treatment, it's also important for professionals to understand that the family has to be included in all treatment decisions, Hurst said.

"It takes an entire team to make the diagnosis and get the treatment, but that team absolutely involves the family, and it has to be family-centered all the way," she said.

Hurst, who's on the board of directors with the Down Syndrome Association of Greater Cincinnati, already has some experience meeting and greeting lawmakers. She's been to both Washington and Columbus to weigh in on policy and funding decisions.

One of her recent causes was support for the ABLE Act, a federal proposal that would have allowed families to set up savings accounts of up to $500,000 that people with disabilities could use to pay for certain housing, medical and educational services without worrying about losing access to public assistance programs.

The legislation wasn't included in last year's tax bill, but Hurst remains hopeful.

In the meantime, she's working with Andy on his reading skills and teaching him about taking the bus so that one day, he'll be ready when it's time to get a job, find a house or apartment and head to the grocery store on his own.

That's what moms do, she said, whether their kids are disabled or not.

"The bottom line is, I want my son to be independent, and he has every capability of doing so," Hurst said.