Testimony before the Massachusetts Department of Education, 22 April, 1999

April 22, 1999

Dear Department of Education Members:

This is a story of two young children in Brookline, Massachusetts. One is rich, the other poor. Both were born with a severe developmental disability. Despite that, each had within him the potential for normal development. Both had parents who were willing to dedicate their lives to getting them the special education services they needed to achieve that potential. Both needed that dedication, because the local educational authorities went to great effort to deny access to those services.

The rich child was the first to enter the system. Before age three he was seen by the school’s "Early Childhood Specialist." It took the school over half a year to begin any service delivery—time, precious time, in which he could have made substantial progress, but instead was allowed to fall further into disability. He started group speech therapy, twice a week, even though that provided less than 2% of the accepted standard of services for a child with his disability. Then a part-time preschool program. He did not learn to talk or to play. He did learn to attack other children, so that his disability became a prison for his entire family.

Everyone at the rich child’s school was very pleased with his progress, but his parents weren’t. They used their money to get an independent evaluation. Then another. Then another. They paid for a consultant who had worked for the same school system, to observe and evaluate his entire program. Everyone agreed: this child needs much, much more if he is to realize his potential. Everyone, that is, except the school administration. They told the rich child’s mother to get counseling instead.

When the rich child was four-and-a-half years old his parents used more of their money to start an effective education program. They found their own staff. They paid to train the staff and paid them to teach their child. They shared all their information with the school administration, all the way up to the Superintendent. They put in ten, twenty hours a week of their own time to help their child learn. And he did learn! He stopped falling farther behind his peers, and started to develop language—six months in the first eleven weeks. But that was not enough. The experts said he had to continue his program at the school, so he could begin to learn from other children. Everyone agreed—except the school.

So the parents of the rich child used even more money to hire a very expensive lawyer to talk to the school’s equally expensive lawyer. A lot of time and money that could have gone to help the rich child learn to talk was spent instead on grownups. The lawyers talked and talked, the parents talked and talked, the school’s administrators talked and talked. After nine more wasted months, the rich child got his very rich program.

The rich child’s parents asked their lawyer to ask the school’s lawyer to ask the school to pay back some of the $30,000 spent on teachers and legal bills. The lawyers talked and talked…this time, it only took half a year to get the school to pay.

Where was the poor child? He was travelling down the same road, entering the same inappropriate and inadequate school program. His mother too became concerned when he did not seem to be developing to his maximum potential. But the school did not agree—they thought he was doing just fine, although the mother clearly needed counseling. And perhaps that would have been the end of the story. Except—

The rich child’s parents sent a letter to their local newspaper. The paper published it. The poor child’s mother read the letter and called the rich child’s parents. She knew her child could make the same kind of progress.

So the parents of the rich child took some of the money they got back from the school and used it to pay for an independent evaluation of the poor child. They hired the same expensive lawyer. And, after the expected delays, the poor child got the same program as the rich child.

Today there are two children who have a future because of money. Not regulations or accountability, not good will, but cash—lots of it. The ability to get an independent evaluation and enforce the recommendations is the only hope those children had. Schools have much deeper pockets than parents, and unlike the children in this story, they have nothing to lose from delay. The barriers to getting independent evaluations and receiving effective services are already formidable. Think long and hard before you raise those barriers higher.

Sincerely yours,

Richard Saffran
14 Southwood Drive
Southborough, MA 01772

Commissioner David Driscoll
Massachusetts Department of Education

Dear Commissioner Driscoll:

My comments on the proposed changes to Massachusetts Special Education regulations concern your proposal to allow schools to call a hearing before funding an independent evaluation. You wrote:

‘This change recognizes the experience of schools in conducting appropriate evaluations and, over time, will reduce the public cost of routine "second opinions."’ (From your March 30, 1999 memo, paragraph 5(a))

I hope I do not misrepresent you when I expand your argument. There are four suppositions:

1. Schools have more experience than anyone in evaluating the needs of disabled children. Their evaluations are usually unbiased, complete, and accurate. The great majority of children receiving effective special education services have programs based on the information provided by the school’s evaluation team, without need for a "second opinion."
2. Parents frequently mistrust schools and want an evaluation conducted by someone not affiliated with their school system. This request is so common as to be considered "routine."
3. The request for an independent evaluation is, with few exceptions, granted, and the evaluation is, as regulations require, funded.
4. In many cases, the results of an independent evaluation do not substantially benefit the child. The public’s money has been wasted.

To this I am sure you would add a fifth item:

5. In exceptional cases the school’s evaluation is not adequate, and an independent evaluation is essential to securing the child an effective program.

Since you are responsible for regulations, you are charged to ensure that the facts support this argument. If one or more of the four suppositions proves doubtful or actually contrary to fact, the proposed change should be abandoned.

You have heard from dozens, perhaps hundreds, of parents of and advocates for special needs children. I was present at your Worcester hearing (April 28, 1999) and heard testimony from 18 parents of special needs children and from 4 school representatives. This is a small and self-selected sample, so we should be cautious about drawing firm conclusions. Nevertheless, the testimony strongly suggests that the facts are other than you have represented; in the absence of more solid information, it would be irresponsible to proceed as if your justification for change is sound.

1. Are school evaluations unbiased, complete, and accurate? Not a single parent testified that their child has an effective education program based only on the school’s evaluation. All eighteen stated that the independent evaluation was the main impetus to propose or implement an effective program. No school administrator suggested that any independent evaluation has been a waste.
2. Do parents "routinely" request independent evaluations? Judging from the sample at Worcester, it would appear so - 100%. This suggests there really is a problem, a duplication of efforts - but one would be more likely to conclude that the school’s (initial) evaluation is the wasted effort.
3. Do schools comply with the request for an independent evaluation? More than half of the parents testified that the school was noncompliant, with tactics ranging from simple pressure against (formerly) naive parents, to extensive delays, to flat-out refusal to pay. All parents reported they eventually secured an independent evaluation; a substantial minority testified they had to pay part or all of the cost.
4. Is the money well-spent or wasted? Every parent of a special needs child with an effective program testified that their child’s services are a direct result of the recommendations of an independent, unbiased evaluator. The only exception: a few parents who are still fighting to have those recommendations implemented. Most telling is the testimony from several parents who stated that their child (like my son) has been able to avoid the substantial expense of private placement as a result of a program crafted from the independent recommendations. This is a good hundred-fold payback on the $500-$1,000 cost of a "routine second opinion"!

But since saving money is your stated motive, let’s examine the consequences of allowing schools to call a hearing before funding an independent evaluation.

Since we don’t have even approximate numbers, we can only speculate and weigh the possibilities. Let me grant that there are parents who request a publicly funded independent evaluation for no good reason – they do it because they can. Some fraction of those parents – not all, as we have learned - currently have their requests satisfied. Under your revised rules some of those parents will now receive notice that they must prevail in a hearing. Many will withdraw their request, some will not. So, yes, we will have a fraction of a fraction of a fraction of evaluations that will no longer be funded at public expense, saving perhaps $500-$1,000 each.

Some parents will not be convinced that their request is frivolous and will pursue a hearing. Simply preparing for a hearing and then settling, as the great majority do, costs $5,000 to $10,000. If the parent prevails, this is followed by a request for reimbursement, which (very roughly) results in the school paying half. So a single disputed evaluation request may cost the school twenty times the expense of a single evaluation. If more than 5% of requests go this course, then your regulation change will actually cost schools more than it will save. Will it save money, be a wash, or cost more? We just don’t know.

And then there are the hidden costs and the hidden victims. Unlike your hypothesized cost savings, this one is a certainty. As all parents testified, effective programs are built on independent evaluations (I think your term "second opinion" trivializes the importance of objective assessments of need). If the school chooses not to put up the $500 or $1,000 to pay the evaluator, and the parent has no other resources, the child’s future may be dead in the water. We may dispute how often this happens, but happen it does.

I will grant that the regulation change will have no effect on the great majority of children. But that is irrelevant. When the parent runs out of resources, or cannot face the financial risk of a hearing, the child is the victim. Your proposed change will without doubt make this happen more.

Sincerely yours,

Richard Saffran
14 Southwood Drive
Southborough, MA 01772

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