How broken is special education: The unique view of a parent, educator, and advocate

C9D438AD-3920-496B-9B53-9C3957993445Recently, I’ve had to do more thinking about special education as a broken system and how easily IT (and sometimes kids and good people working in it) are used as scapegoats by too many.  There was an opinion piece in the Globe that I commented on (basically I had so much to say it turned into 2 comments).  Those comments are now here and they illustrate my take on what is indeed a system of imperfection- with some big things to fix but also some “easy” fixes.  (Hint: It involves a running theme of my work and this page which is “presume competence”).

This post, and my work, in no way shape should be taken as a “one size fits all” criticism or dissection of the work I do.  I work with many great public school staff members.  Even they sometimes get relegated to not doing or saying what they want to *if* their boss or their boss’s boss says not to.  The teachers and team members I respect the most are the ones who not only speak up at a meeting, but I equally admire the folks who reach out privately to parents and are honest about what they think might help the child.  I have the highest level of respect for the administrators and team chairs who, at the parent’s request, work together with me on behalf of the child.  This work is about relationships as much as it’s about the child.  That’s how we often get to “yes”- behind the scenes frank discussions, sitting with one another during observations, and trusting that we both have unique roles but we are both dedicated to ensuring a child is learning.

The biggest problem in special education is that, despite it not being funded as promised by the federal government via the IDEA, many school districts fail to provide high quality programs for children with identified disabilities. This far too often creates a path where the kids are not learning and accessing the curriculum (special ed is about providing equal, not more) and not making progress to the point the process becomes a battle for parents, many who drain their savings to get help from outside professionals and evaluators, attorneys, and advocates.  I have 13 years and counting, 8 full time, as an advocate and consultant.  Relationships are broken with school districts who may or may not be following an IEP, and the IEP may or may not be reasonably calculated to meet the child’s needs which leads to students falling so far behind they require highly specialized programming which costs a whole lot more but is what is legally required (burden on the parents to prove) to have a child simply learn.  It shouldn’t be this hard.

While there are some students, one of my kids included, whose needs can not be met in a public school setting simply because of the severity of their disability, special education costs are the first to be blamed for, well, everything come budget time or staffing needs or day to day issues every school faces.

I would be the happiest mom if my child with autism did not need to go on a van an hour each way to a school far from our community at a cost which would pay for a bachelor’s degree and probably a masters at a state college for just one year. He needs his school and all his teachers/support staff, for without them he would not be accessing any learning and gaining skills he needs as an adult to work, live, and hopefully thrive in a community setting with support. If that program were in my district and everyone’s, I’d joyfully be an under-employed advocate for cases where I work on behalf of parents with the district to get kids to the right out of district schools with the highly qualified staff and resources many/most public schools don’t have.  I often remind folks when there is tension that no one asks for their kid to have a disability.  In addition, 95% of parents I work with are absolutely on target with understanding their child’s needs.

There are many amazing special educators, PARAPROFESSIONALS, therapists, and yes some administrators who put children first. The challenge is that while most direct service providers chose this job for a reason, the right one which is to help kids, people above them and those higher up who make $ decisions often get in the way. If districts would work WITH families and not against them, you would see special ed working better, in addition to having funding be given no matter what the government sends or doesn’t.

In a world without money trees, there are not enough of the last group of people- administrators, school committees, city councils, etc. who understand that spending taxpayer $$$ litigating with families is wasted $, hurts children, implodes relationships with families, and makes the act of a child going to school a war. No one starts off angry. Often, as parents, you are emotional.  If and when your kiddo is not accessing learning or services are not what is appropriate, you end up frustrated, and that gets taken out sometimes on staff who are good, staff who are not, and in the end, kids see and feel the tension from both sides.

The things I do most often to help kids in IEP or 504 meetings are “common sense”, things no parent should need to pay an advocate for, but the system and regulations are complex and ever changing and my own family, 18 years ago-ish, hired an advocate when my oldest was 3.  Having done training for parents and districts on rights and how to work as a team, direct service, consultation, observations of schools and programs in dozens of districts, and this time of year living in team meetings, the best thing we can do is to presume competence of the child, and the adults of one another, so we can work effectively to help kids, and to not burn out good teachers and team members.

Special education is reactive, NOT proactive. It’s a system almost set up to fail. I always say to families I work with, “it’s my job to work myself out of a job, to give you the skills you need to most effectively advocate for your kiddo successfully without needing to spend money on people like me” . 25-35% of my clients are pro-bono or reduced rate simply because ethically I believe every child deserves an education and I also partner w great agencies and people who make referrals and I can’t say “no”), but I’m actually the “cheap” component.  Parents are forced to pay experts like BCBAs, BCBA-Ds, and neuropsychologists (I’ve seen costs for hiring a good neuropsychologist including testing, an observation, and and attending a team meeting run from $3000-$10000) to even get evaluations when the school says “no”. In return, the school is merely forced to “consider” the testing and recommendations, not required to agree with them.

This is indeed a broken system where people literally sit on different sides of the table from the beginning.  In many places, parents are not even part of the initial process, the school team has often “pre-teamed” (decided what they will offer before the meeting making the meeting a farce because the parents).  Parents are then invited in to their child’s meeting with the school team already seated; it can be pretty intimidating.

Treating parents as equals and not visitors would help the process, literally from the bottom up.  Teachers being able to say how they *really* feel without fear of retribution (ie: getting fired) and parents being able to say how they really feel without fear of retribution (ie: they will upset someone who will then take a comment personally and take out that frustration on the child- which I know happens hopefully rarely, but am confident not with the vast majority of true professionals).  Being kind to one another, being truly respectful, and being open and honest about what to do to meet needs, even when they don’t fit into “the box”, are some good ground rules.

You have to start somewhere, right?