Group helps parents become advocates for disabled children

Organization provides counsel in dealing with school systems

January 03, 2000|By Rachel D. Mansour | Rachel D. Mansour,CONTRIBUTING WRITER

Jamie L. Jean hated to put her 6-year-old son, Matthew, on the school bus every morning for the hourlong ride to Shipley's Choice Elementary School in Millersville.

Her son, now 8, has Down syndrome. He was enrolled in the school's special education program for disabled children when she, her husband and three sons moved to Annapolis in 1997. Anne Arundel County school officials said Shipley's Choice was the closest school with such a program.

"It wasn't fair. I couldn't let go of it," Jean said, recalling the commute her son endured -- and how she called Windsor Farm Elementary in Annapolis every day for six months until officials there agreed to set up a program for him and other disabled children.

Jean credits that advocacy to her five-year relationship with the Parents' Place of Maryland and its parent educators, who coached her through school meetings and legal jargon so she would know how to fight for Matthew's education.

Parents' Place, nestled in a Hanover office park, was founded in 1990 as a statewide parent-directed, parent-staffed resource center to serve families of children and adults with disabilities and chronic illnesses.

Speaking from experience

Each of the 19 staff members and most of the 11 volunteers are parents of disabled children, able to speak from experience in helping others become their child's advocate in school, home and community life.

The organization offers workshops, referrals and one-on-one counseling to about 3,000 parents a year. The Parents' Place library has books and videotapes about disability law, special education and symptoms of disabilities.

"We are the resource center for parents," said Suzie Shannon, office manager for Parents' Place.

Funding comes largely from government grants. Parents' Place services are free, but the organization asks for a $5 donation at workshops -- from those who can afford it -- to help defray the cost of materials.

The group helps parents with such basics as how to develop a portfolio of records, medical bills and educational documents for their children, and how to hone communication skills.

Its workshops help parents understand the Individuals with Disabilities Education Act and other federal and state regulations.

Workshops also show parents how to ensure the appropriateness of their child's individualized education program, a plan required for every special education student, and prepare parents for their child's transition from school to employment.

Decoding terms

Much time is spent decoding for parents the state's special education system, which includes more than 111,000 children.

Parents are easily frustrated with ineffective programs and education laws littered with alien terms, said Jan Yocum de Calderon, a Parents' Place parent educator who helps families in Howard and Carroll counties.

Jean said she knows firsthand that special education is replete with "gray areas" where, without a working knowledge of the law, parents are often left in the dark.

Deborah Janis, who conducts workshops and trains volunteers and parent educators for Parents' Place, can vouch for that from experience. She has raised a 17-year-old son who has Down syndrome.

She said "it takes a savvy parent" to make sense of the process and policies to ensure that children get what they need.

On duty

Eight parent educators are assigned to territories covering Maryland's 23 counties and Baltimore, with duties of decoding laws for parents and going with them to "IEP Team" meetings about their child's individualized education program.

Volunteer Katy Schieman has two disabled sons -- Greg, 14, with Down syndrome, and Geoffrey, 17, diagnosed with attention deficit disorder. She said she has benefited from Parents' Place for the past five years.

Janis, Schieman's former parent educator, helped her resolve disagreements with county schools about her sons' education programs. Parent educators are perfect in that role, Schieman said: "We need somebody who is not personally involved but will back you up."

Carolyn Roeding, the parent educator for Anne Arundel, Calvert and St. Mary's counties, said, "The hardest thing for a parent to do is accept that their child has limitations." Roeding's grown daughter had speech and language impairment and attention deficit disorder. When parents see their child behind in school, she said, they don't know where to turn.

Parent educators want to "put the parents on an equal playing field" with the half-dozen or so school officials sitting around the table at IEP Team meetings, Roeding said. Parents just want a better education for their child, she said. "They are not asking for anything more."

Roeding, who has been an educator for about a year, said she finds the experience of the part-time job rewarding.

"But at the same time, it is depressing," she said. Seeing parents who invest much of their time and money to help their children overcome obstacles, Roeding said, "I come home sometimes and just want to cry."

Empowering parents

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