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.
