Wednesday, January 18, 2017

We need a better IDEA

I read the paper, and my breath halted at the weight of the sentence: agree to waive the right to a free appropriate public education (FAPE), and assume all educational responsibilities of your child. . . .

Whoa.  This was on us.  This was on ME.  I was to be the primary educator for my child with autism.  If I failed, he failed.

Steeling my resolve, I signed, and made one of the very best decisions I have ever made in my life.
There has been much in the news lately about IDEA, with president-elect Trump’s Secretary of Education appointment, Betsy DeVos, being under fire for a perceived lack of knowledge on IDEA.  IDEA stands for the “Individuals With Disabilities Education Act”, and is the federal government’s legal assurance that all children, regardless of disability, are to be given a “free appropriate public education”, which includes as much inclusion with typical peers in a typical classroom as is possible for their ability.  It is a well-written, beautiful, 40 -page document handed to parents and educators across the nation, and no doubt was well-intentioned in its purpose. 

Much like our bill of rights, however, the scope and breadth of its application into the lives of those it was written to protect depends much upon the viewpoint of those administering the law itself. 

When I was first handed the 40 page book, I read it from cover to cover, because I am a nerd like that.  I found nothing alarming in its verbiage, and took comfort it the fact that it seemed to actually address every possible scenario my panic-stricken, scared, mother-of-a-freshly-diagnosed-child brain could come up with, which was a pretty impressive list.  I went to the IEP meeting at my local school district, which said that our son should be placed into an inclusive preschool to enhance his verbal and social skills, and after he was evaluated, was slated to have speech, occupational, and physical therapy.  We opted to forego PT as my husband is a PT, and instead were looking forward to speech and OT.

My independent research of all things autism----and I mean ALL things-----told me that our son needed “intensive therapies” for speech and OT.  Intensive. 

I lived in a very good school district, with professionals whom I believe genuinely cared about the progress of our son.  But I was rather dismayed when “intensive” meant, “group speech therapy”.  It meant 15 minutes of OT once a week.  I believe that he had a small amount of individual speech at that time, but it wasn’t very much.  Although I really enjoyed his therapists and was confident in their skill level, there was just not enough time to allocate to what our son needed----certainly not meeting the criteria of “intensive”.

His teacher was a first year special needs teacher.  I was teaching her about our son as I was learning him myself.  She was very good to work with, and I appreciated very, very greatly her willingness to adapt to him, but I was a little taken aback by the fact that I was trusting his, and truly my, education about autism to someone who had not had a student like him before, and I was doing it in his formative preschool years. 

Realizing that more therapeutic intervention was needed, we turned to our medical insurance.  Our insurance would NOT provide speech therapy for the treatment of autism.  Insurance companies realize that public schools pay for speech and OT, our pediatrician told us, and therefore force it to be covered by the public school.  Praise be to God, and I mean that with all sincerity, He provided a private speech therapist at a reasonable out-of-pocket cost that we endured for 3 years.  OT was covered, and we were very thankful to have an excellent OT. 

Now------I want you to image dropping off your diabetic child at the public school and asking them to treat their erratic blood sugar.  You would never dream of that, right?  That is what countless parents of children with autism are expected to do.  We are to drop our children off and ask, beg, plead, and cajole to receive the services we so desperately need from the very entity that has to spend the money for them. 

Think about it---do you have to go directly to your insurance company to get your medical treatments?  Of course not.  You have a buffer in your primary care physician.  You usually get to pick your PCP.  And while your PCP is bound somewhat by your insurance mandates, he can write and intervene on your behalf and get things covered for you.

Parents have no buffer.  If you are in a great district with great staff and an awesome teacher and principal and lots of property taxes and/or federal grant money, this is a bearable experience.  It may even be a good experience.  They may helpfully and cheerfully help to bear your load, and you may have wonderful outcomes, and you may have extremely qualified clinicians.  I hope this is your experience, whether you are an educator or parent reading this. 

But if not?

If not, prepare to fight Goliath.  You will battle for years.  You will be told that his needs do not “interfere with his educational progress”, and therefore aren’t covered in the IEP.  You will become bitter, a Mama Grizzly Extraordinaire.  You will fight and fight and cry and grieve and fight and become angry and fight until you can’t fight anymore to get what your child needs. You will be “that mom”, when you never ever wanted to be “that mom”.  You just want your child to get the help they need and deserve.

When I was in multiple waiting rooms for multiple therapies, I would hear conversations among parents regarding what the school was providing for one child in one district, and what they weren’t in another.   It ran the gamut from equine therapy (higher end tax base zip code) to no therapy (federal poverty level zip code). There was very little consistency from district to district. 

When we moved from Ohio to Oregon, I came to our local district with papers measuring three inches thick that included evaluations from professionals, test results, and a current IEP.  Because we home school, the only service I was seeking out was individual or group speech therapy, since his neurologist recommended speech until age 15.

In spite of this evidence, my request was denied.  There would be no group speech, even if I drove him to the appointment.  Even if I pay property taxes to my district.  Even if I home school all my children, and buy all my own curriculum, and give money to the school, but take none.   Even if the now-retired special education coordinator laughed at the notion that I expected our son to go to college.

Oregon is one of only two states in the country whose Medicaid programs do not cover autism therapies.  They have received a special waiver from the federal government that allows them to do so.  Obtaining information from the Kaiser Family Foundation, I was able to determine that of the 920,000 children who reside in Oregon, a whopping 407, 899 receive Medicaid. 

When at least 50% of the pediatric clientele lack insurance coverage for therapeutic interventions, how many skilled pediatric clinicians will set up shop and practice in Oregon?

How many of those children on Medicaid have autism?  How many don’t get necessary therapies from their school districts?  How many of them have single parents that can’t pay for/find/drive to therapy outside of the school for their children?  How many make too much money to be covered under MR/DD guidelines, but not enough to afford out of pocket clinicians?

And what clinicians would be used?  In our small county I know of only two practices that provide those therapies, and they don’t accept all insurance, or are out of network.  To find further therapy is a 2 ½ hour drive one way for services. 

The school district, then, is the gatekeeper.  The federal government allocates a portion of money to those students.  Unfortunately, the federal government hasn’t ever fully funded the program that they have made law.  As a result, many compassionate districts are simply unable to pay for the services that are truly needed to give children with autism----who face a staggering 90% unemployment rate in adulthood!------the services they need to obtain a modicum of self-sufficiency.  Overpopulated classrooms, coupled with children who often teeter somewhere between being mentally challenged while simultaneously brilliant, along with understaffing and a lack of professional development and education among some of those working with the autism population (please----I said “some”, not “all”) do not yield optimal results for many children.

In unscrupulous districts, the money never makes it to some of these children.  There is no safeguard in IDEA that specifies that X dollars must go to Student X. 


When I signed the document waiving FAPE, I was doing so to obtain the Ohio Autism Scholarship.  The Autism Scholarship is funded by the Ohio Department of Education.  It gives the control of the money directly used by those students into a more equitable partnership of the parent and the school district.  My home district was extremely supportive of the scholarship.  My son received the intensive therapy he needed in his formative years, and I believe that it has had a lasting impact on him to this day. 

The other benefit to the scholarship is that because of free enterprise, there are many, many qualified ABA and speech therapists, counselors, OT’s, PT’s, and tutors (among other things) that have started in Ohio. There is a steady stream of income to those providers, which allows for excellent care. 

Is the scholarship perfect? No.  Is there fraud?  I am certain there is.  The Bible states that “the love of money is the root of all evil”, and there is certainly a lot of money involved in the scholarship.  Are the schools that have popped up to provide an education to those with autism “good” schools?  Maybe some are, and I am sure that some are not.

But what I do know is this:  I, who know my son like the very back of my hand, had more control of his therapy choices.  I didn’t have to plead with the gatekeeper.  I didn’t have to turn into “that mom”.  All the fighting I would have do to get what I needed, I could channel into helping him become the best him that he could be. I am so very thankful to God for the opportunity to live there in his formative years.

So where are we now?  Well, now I literally have no IDEA.  I am a rogue homeschooler devoid of therapy. 

That was all in the plan.

See, in November of 2007, when my precious boy changed overnight in my eyes because of a diagnosis, I did the only thing that I knew to do:
I “lifted mine eyes up into the hills, from whence comest my help; my help comes from the LORD, which made heaven and earth.”----Psalms 121:1. 

I kneeled on the side of his little toddler bed made with his sports bedspread, the sports that just two days before was sure he would be the star of, and now didn’t know what he would ever be able to do----and this mama prayed.  I begged God for two things:  the best clinicians possible, and wisdom in how to raise him.  After all, I had begged God to give him to me, and I had desired a child to raise for His glory.  And He provided me a sweet, wonderful boy.  God knows him and loves him far better than I do. 

To that, God has been abundantly, unbelievably, miraculously faithful.  I can’t even begin to tell you. He had the best therapists and he has the best neurologist. At one point in time, three of his clinicians sat on the governor’s board for autism.  I didn’t pay a penny for all that therapy. 

And now?  When I was denied by the school in 2014, I had to go to our insurance. And our insurance, which I had been told covered autism services, denied us.

I had to compose myself on the phone.  I hurried off, and collapsed on the bed.

And I felt God there, nudging me to release my son. . . .to Him. 

I had been hanging on, trusting in therapists and interventions.  Not trusting GOD, that this was all part of His plan, and that the plan is way bigger than my tiny point of view.  With His help, I did just that.  I felt the sweetest peace and relief wave over me.  It would all be OK.

So there is no speech.  There is no OT.  There is PT, and there is a customized education (which includes speech curriculum) by a diligent mama who would give her last breath for him.  Even if she dies doing fractions.

But there is peace, knowing that I am free to do what I need to do with minimal interference.

I don’t know the first thing about Betsy DeVos.  But what I do know is this:

Some of us just want to be left alone, to do what needs to be done.  We aren’t asking for you to do it for us.  We want the freedom of choice to do what is right for our children, for our unique circumstance that doesn’t fit into your paradigm.  Please, let us keep our choice.  I know charter schools and programs aren’t always a good thing.  Maybe they are mostly a bad thing, even.  But what makes this country great is that we have the freedom to do what is best for us and to do what we feel is right. IDEA isn’t working for all of us. 

It is time to explore a new IDEA.

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