This article first appeared in the St. Louis Beacon, Jan. 18, 2011 - Raising a child with autism or other learning disabilities is always a challenge.
Dealing with trying economic times, and struggling to navigate the often bewildering maze of education bureaucracy at the same time, make a tough task that much harder.
A new program designed to provide scholarship aid for such students -- about 30,000 of them in the St. Louis area alone -- and coping skills for their parents aims to make the process a little less difficult.
"There is a critical need for parents of special learners to have access to the schools that are best equipped to reach their children," says Laura Slay, executive director of the Children's Education Alliance of Missouri, which announced the program this week.
The alliance's "mission is to support them financially so that they can make the best choices for their children, but also to give them the tools they need to advocate successfully for their children's educational rights."
So far, the effort has raised about $20,000. Slay said she hopes that number can rise to about $120,000 by this fall, when the first scholarships would be awarded to families in the St. Louis area.
Once the program has gained a foothold here, she said, the goal is to expand it throughout Missouri. A recent listening tour around the state, as well as a census of children with special education challenges, show that the need is great, and the best opportunity for meaningful help is for students in grades 6-8.
"We listened to some of the problems parents are dealing with," Slay said, "and across the board, they had two major concerns. They were going through emotional changes after their children had been diagnosed, worrying about their future, and they also were trying to navigate a very complex educational system."
With 133,000 Missouri students on individualized education plans, or IEPs, and the cost of educating them as much as $150,000 a year, the shortcomings of the system quickly became apparent, she added.
"We saw real gaps," Slay said. "There aren't many scholarships available to families, especially in the area of autism. Many times, parents are frustrated with their school district. They don't feel the district is meeting the goals set out by the IEP, and they don't know where to turn."
Norma Speckhard, a board member of the alliance who has an extensive background in special education, said the kind of support that the scholarship program will provide is unique.
"It's very lonely having a child with special needs," she said. "It's exhausting. It's emotional and physical, it's expensive, and assistance is limited."
Because every child is unique and every family situation is unique, she said, the training will vary, depending on what the parents need. But Speckhard said she hopes one feature is common to all situations.
"We want to teach them how to enjoy their child," she said. "So often, with a child with special needs, you have one crisis after another, and the joy of family life is depeleted. We want to help them through the rough spots."
Scholarship money will go directly to schools, designated for use in the education of specific students. Money also will be used to help teach parents how to become effective advocates for what their children need to get out of school.
"Many parents didn't understand what their rights were," Slay said. "They need to learn how to talk to the schools. Too many times, parents and schools and teachers are in conflict with each other, in a very emotionally charged situation.
"Emotion harms the conversation. We want to provide parents with the training they need to find solutions within the school district."
The scholarships are also designed to ease financial difficulties that often are magnified by the pressures posed by the special needs of children with IEPs. Bankruptcy, divorce and other circumstances are all too common, Slay said.
"For one family in St. Joseph with an autistic child," she said, "they had a house they couldn't sell, but they had to move to a different city to get the appropriate education for their child. So one half of the family stayed behind in St. Joseph, and they had to live in two households in two separate areas of the state."
Slay said it is difficult to determine just how much individual scholarships may be, because the tuition at schools serving children with special needs varies. Money may also go to public schools, she said.
The lifetime costs of caring for someone with autism can be as high as $3 million to $5 million, she said, but high-quality intervention during a child's early years can help reduce that amount significantly.
So far, Slay said, all contributions to the program have come from individuals, some as small as $10. A benefit and a fund-raising event are planned for this spring, and businesses in the Central West End, where the education alliance is located, have been asked to take part.