Speaking out for People with
 Intellectual and Developmental Disabilities

Don’t take sides on inclusion

By Marcie Roth
The Ragged Edge

Marcie Roth is a well-respected, longtime national disability rights advocate.

September 2003

I have been fighting for children with disabilities to be able to receive a
free appropriate public education since before PL 94-142 -- now called the
Individuals with Disabilities Education Act, or IDEA -- was passed, back in
1975. I have represented hundreds of families as they fought to get their
children that free appropriate public education in their neighborhood
school, in the classroom the child would have attended if they didn't have
a disability.

I have been active in the leadership of national organizations fighting for
inclusion. I've provided training and technical assistance to states,
communities, school districts and schools on exactly how to include
students with disabilities in general ed.

Funded by U. S. and the state department of education, I spent three years
in classrooms across my state, showing school teams how to include
students. I've been widely published on the topic of inclusion, and have
developed a number of tools that are in use today in general ed classrooms.
I can honestly say I've never met a child who can't successfully be
included, under the "right" circumstances, no matter what.

Yet last spring I put my 11-year-old son Dustin on a short bus and sent him
to a segregated school in another county at a cost of $50,000-plus per year
to the taxpayers of my community.

Shocking? You can only imagine.

I have been battling with our school system for four years to get Dustin
the educational supports and services he needs -- and is legally entitled
to -- without success. Despite intervention from the Maryland State
Department of Education, the U. S. Department of Education, Congress, the
White House, and even a superbly honest article by reporter Jay Mathews
that ran in the Feb. 6 Washington Post, Dustin's Individualized Education
Plan -- his "IEP" -- was never implemented. Not for one day.

This is not just my view of things, but the actual "Findings" from the
Maryland State Department of Education. (I have four such "Letters of
Findings.") No behavior support plan, no keyboarding, no extra set of books
for home, inadequate testing, outright lies. And then there was the abuse,
also honestly portrayed in the Washington Post.

Despite it all, rather than implement Dustin's IEP, as required by law, my
school system decided they "couldn't" serve him. They wanted him placed in
a segregated school, in another county.

I was fortunate, though. Because of our high profile (and the Washington
Post article), I was able to reject the hellholes they tried to send Dustin
to (where 4-point restraint and timeout rooms are still in use), and
managed to get him into a truly wonderful school, as segregated schools go.

In less than two weeks, my previously devastated child began to blossom. I
have never seen him as proud as he was when he signed his name to a gift
for his grandparents. He looked at me, beaming, and said "Look what the OT
taught me to do!" Dustin was supposed to have received occupational therapy
services as far back as 1998, but it took until now for it to actually

I bet you're wondering why I didn't take legal action to force
implementation of the IEP. I tried. I did as much as I could. A few
wonderful people stepped up to help me, but I was unable to afford the
legal battle I needed to fight, and I was well aware that even with
adequate resources to spend on a lawsuit ($50,000 or more), I was likely to
lose anyway. There are very few legal resources for people like me. Just
last year, I spent $8,000 out of pocket, paying expenses for professional
experts to attend meetings -- professionals I would have needed to use as
expert witnesses in a hearing had I pursued a lawsuit. This was in addition
to the $14,000 I spent out of pocket on copays for healthcare, after my
really decent health insurance paid its portion.

While I was struggling to pay experts to attend meeting after meeting, as I
fought for my child's right to an education, my school system was paying
lawyers $650 an hour or more to fight parents like me. Where did they get
that money to spend? Taxpayer dollars, of course! they used my taxpayer
dollars -- yours, too -- against my child.

Dustin's neighborhood school should be able to include him. But they have
proven that they have neither the will nor the way to do it. I am a staunch
inclusionist who now says: you're wasting your breath on that argument.

My new friends -- parents of kids in segregated schools -- will fight to
the death to keep these segregated schools -- until we can be guaranteed
that "inclusion" will not hurt our children.

I am far more aware than most that it really is possible to get inclusion
right. I'm also far more aware than most of just how wrong "inclusion" is
when it's not right.

My child will no longer pay a price for my ideology. He's paying a
different price right now -- the price of being segregated from his
nondisabled peers. I get to live with the guilt of allowing this.
Supporting it, even.

If you want to be part of the solution, don't take sides on inclusion. Put
your energy toward demanding full implementation and enforcement of IDEA.
Until our children are assured that the law will really be implemented and
enforced, the rest of the debate is irrelevant.