Thirty years later, disability law still has work to do

Thirty years since the Individuals with Disabilities Education Act passed, Matt Cohen still sees too many kids not getting the help they need and leaving high school unprepared for what lies ahead.

“I think it is certainly better than 30 years ago, but we have a long way to go,” says Cohen, a special education and disability law attorney with Monahan& Cohen in downtown Chicago. He has a particular passion for advocating for families with children with mental health issues.

What is your perspective on how we as a society are treating kids with mental health issues, including ADHD, today?

“On a broad level, there continues to be an enormous degree of ignorance about childhood mental health problems. I think the schools tend to respond to mental health issues primarily in relation to the degree to which the problem presents as disruptive to the classroom rather than disruptive or interfering with the student’s personal ability to function. When the child is disruptive to the classroom, the schools tend to respond in a way that focuses on punishment rather than on therapeutic intervention.” Often, he says, kids with disruptive behaviors are removed from the regular classroom and isolated or kicked out of school.

Parents probably feel caught?

“… There are lots of stigmas attached to being labeled as having a disability and there are particularly stigmas attached to having an emotional or mental problem. So there are many parents who are fearful of that. There are many parents who are told or may assume rightly or wrongly that if their child is labeled, they are going to be put into a segregated special ed program without being aware that there are lots of situations where the child can stay in regular ed and hopefully get the support they need.

“… So there are a number of reasons for parents to be worried about these things. The law is also very complicated, and many parents aren’t even aware that the services are available or that they have various rights.”

How do parents know what to do?

It’s rare that there is a single right answer, he says. “Many of the parents I see have a very good intuitive sense that there is something wrong … but they don’t necessarily know what to do about it. They start out trusting the schools to be the experts and to help them do what is needed. Some of the schools are very good and very honest, but many schools, for reasons of resources and control, are very reluctant to share information with parents about what their rights are, about what their options are. The parents are left to kind of figure it out for themselves.”

Isn’t that a tough place for parents to be?

“It’s hard work being a parent and it’s harder work being a parent of a kid with a disability, and it’s especially hard work when you assume the schools will be doing what is needed and they don’t.”

Is the law changing for better or worse?

The Individuals with Disabilities Education Act, last amended in 2004, was supposed to be amended in 2009. Congress is occupied with health care reform and the No Child Left Behind Act. Cohen predicts amendments no sooner than late this year or 2011.

Much of the effort in the 2004 amendments focused on decreasing regulations and giving schools more discretion over what they were required to do, he says.

“In addition, there was an implicit message in what the law enacted-that schools were identifying too many kids as having disabilities.” He says he’s seeing a lot of cases where schools are refusing to identify kids as eligible or who are being taken out of special education.

“I think there’s a lot of backlash on serving kids with disabilities that ultimately is making it much harder for those kids to get what they need. But the reality is that the more we cut back on serving and helping kids with disabilities at the moment when they are kids, the more likely those kids are going to be unable to contribute as meaningfully as taxpayers when they are adults” or will need more support as adults.

“There’s a very important rationale for making that investment that is not just based on what’s right, but also based on good public policy.”

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