*** A letter written to the leadership of Alabama at the request of one of E's former teachers who is fighting to get better services and special education in her state***
Dear Senator,
I have been asked to give you a glimpse into what it is like
trying to get services and appropriate education for a child with autism in Montgomery,
Alabama. We are a military family and we recently moved away from your
state. We are now living in DC and my
son is recovering from our time there.
I say recovering, because our year in Alabama was the worst
of our lives. My son didn’t regress from
moving across the country or living in a new house. He regressed from falling off a cliff into a
land of very little services for autistic children with seemingly no priority
for special education.
Upon finding out we were going to be stationed in Alabama, I
worried a bit that services would be different.
But we were only going to be there ten months and we would be living
near the state’s capital, surely we could make it work. After all, the alternative would have been to
separate our family from my husband for a year—my husband who has already
missed major milestones for our children, who has in the past been in a
constant deployment cycle, who was coming off of a position in which he worked
14-hour days. Staying together as a
family seemed like the right thing to do.
Before moving I found a center in Prattville where my son
could get Occupational and Speech therapy.
I made contact with an ABA provider (Applied Behavior Analysis—the only
clinically proven treatment for autism) and got my son on their list and I
spoke with Autauga County Schools to see how we would transition from our
current state to Alabama/Prattville schools.
Because I found providers that seemed to meet all of my
child’s medical needs, the military approved our move. They didn’t take into consideration that the
county to which we were moving was not following the IDEA and could not provide
proper special education for my child. I
was taken aback when the preschool special needs coordinator of Autauga County
let me know they did not provide special needs preschool. She gave me a few numbers to try and said
that I would have to find a private preschool that would accept him and then
they would bring their services to his school.
Well, there is a reason, Senator, as to why special needs students are
federally mandated to receive preschool from the state. Finding a preschool to accept a severely
autistic child still in diapers was next to impossible. After having preschools hang up on me, fail
to return my calls and straight up tell me they would not accept a child with
autism I called the county back. The
coordinator then told me that she wasn’t surprised. She said people there just weren’t very
accepting of “special” kids. You can
imagine my shock and anger. After ten
more calls I finally found a church preschool that was willing to accept my son
as a student.
So we moved to Alabama in the summer of 2014. Upon getting there and trying to begin
services with all of the contacts we made we hit more roadblocks. Our son was put on a waitlist for outpatient
Occupational and Speech therapy evaluations.
We discovered that the only place that offered these therapies in
Prattville had lost their only speech therapist. We were strung along for months and being
told if we wanted to drive to the other side of Montgomery the waitlists there
were just as long. So outpatient speech
went on hold. Our son was 3 at the time
and the loss of speech services at a time when we were finally making progress
was detrimental to his development. A
few months later they lost their occupational therapist as well.
We were even more disheartened that the life altering ABA
our son was supposed to start receiving was so limited it would hardly be
beneficial. We were told by Tricare that
based on our son’s severity we could be getting up to forty hours of therapy a week. This may seem like overkill but the American
Academy of Pediatrics recommends at least 25 hours of ABA a week for an
autistic three year old to make successful strides. There were unfortunately very few providers
in our area, not in Prattville, not in Montgomery and virtually no providers
set up to offer tiered model services [where therapy is given by both BCBA’s
(Board Certified Behavior Analysts) and behavior techs to maximize quantity and
quality of care]. We were initially told
our son would be getting 10 hours of therapy a week, but we never saw more than
4 a week with the first provider. He was
stretched thin driving from one county to another to provide services and he
often would show late or not show at all. He told us that with no state mandate for
health insurance to cover ABA therapy, military families were the only ones
covered and therapists had no incentives to practice there. He said he couldn’t find qualified techs to
provide more hours. Meanwhile I was
making more phone calls to see if there were any other ABA providers that could
provide better care. I was given all of
the same numbers…all dead ends or waitlists so long we would not be seen until
after our 11 month assignment was up.
With outpatient services clearly lacking our last hope was
that the school district would be able to provide us with some support. We were not so fortunate. Our son with a severe autism diagnosis was
given 40 minutes of speech a week (broken up into two sessions), 40 minutes of
occupational therapy a week and 40 minutes of “special instruction”. We had been coming from an IEP where he had
15 hours of school a week and a speech therapist assigned to his classroom who
worked with him every day he was there.
A setting in which he was making great strides. Even in the transitional IEP period Autauga
county ignored the laws that state an IEP incoming from another state must be
followed until a new one was agreed upon.
Our son having just been diagnosed, we were new to the system and
confused. We pressed for answers, but
were told time and time again that funding for special needs preschool was not
in the budget.
And our son regressed further into his own world. I was carrying him in kicking and screaming
everyday to a preschool that was not equipped to handle him. He would try to run out of the classroom, he
would sometimes scream nonstop because he couldn’t handle the commotion of the
classroom, he would throw chairs and attack his brother (who also attended the
school) when other children would cry.
The teachers were caring, they tried their best to accommodate us, but
there were so many mornings when I left in tears because going to school had
become so traumatic for him. There were
mornings where he would fight getting dressed for an hour and I would throw in
the towel because I didn’t have the stamina to put up the fight to get him
there.
Without any level of quality behavior therapy, his at home
behaviors began to spiral out of control.
We had broken televisions, siblings with bruises and bite marks, and our
household was going through a trauma that you can’t begin to imagine. Our almost four year old (at a hefty and
strong 45 pounds) had me in tears on a daily basis. I worried for my other children’s safety more
than anything else. We knew it was just
a matter of time until he put one of them in the hospital or worse. I called everyone I could think of and no one
was of any help. I called our doctor
daily to ask if we were any closer to finding a developmental pediatrician she
could refer us to so that we could medicate him and hope to get the aggression
under control until we had better therapy options.
I was put on hold, brushed off, told that they were doing
the best they could, told that I could leave yet another voicemail. None of the pediatricians within 100 miles of
the state’s capital were comfortable prescribing psych medication. I called psychiatrists and psychologists only
to leave messages that were never answered.
On one of our worst days, while he was screaming and I was sobbing, the
nurse finally came to the phone and finally got us a referral to a psychiatrist
that would see him, but we would have to go through another month of hell before
we could be seen.
We eventually pulled him from preschool, feeling like we had
no other choice. At our own expense, we
found a special needs school that would take him and who had experience with
children on the spectrum. The school was
great for him, but we found it too little too late and he was only able to
attend for a few months. My guess is
that this school (New Hope Academy) is probably the only reason Autauga County
has been able to continue with offering such abysmal special needs education to
their youngest students, the ones who need it and can benefit from it the
most.
When I spoke to an advocate they agreed that Autauga County
was breaking a great deal of federal mandates, but the only way to get them to
change their policies would be to sue the district. We have acquaintances who are also military
who went through a similar ordeal in Montgomery county and had to sue the
county, which hardly seemed practical seeing as how we were leaving the
following summer.
We bounced from one ABA provider to the next, all promising
they could offer us more hours, all not being able to provide services or being
able provide a couple hours every few weeks.
About six weeks before our time ended we were able to finally get 8
hours of ABA a week and found speech and occupational therapy 45 minutes away
after enduring a long wait list and that was only because I spent 10 hours a
week on the phone trying to make it happen.
And then we left. And
now he is getting what he needs and he is recovering from a year that was very
hard on all of us. It is always a fight
to get him what he needs, whether it’s a fight with insurance or a fight with
the school district, but here we at least have a chance at winning those battles.
In Prattville, Alabama the cards are stacked against
children with autism, they have very little hope of accessing the care they
need to meet their highest potential in life and sadly many of your residents
are unaware that such life changing therapies even exist. I can’t describe to you how heart wrenching
it is to know there is something that could be saving your child’s life and
mind and not being able to access it due to funding and availability.
I think of all of the families still there and how much
money the state and federal government will have to spend on those individuals
as they age out of a broken system without having been given the tools they
need to succeed in life. I think of
friends we have and the tears they have shed for their children knowing they
will not get the chance to succeed because legislators in your state and school
administrators in your districts do not think their children’s education or
quality of life matter.
The Air Force sends their best and brightest officers to
Maxwell AFB for Command College and War College. Unfortunately, it is becoming quite clear
that the Montgomery area cannot support families with children with autism due
to a lack of services, a lack of qualified providers and profound deficit in
its special education offerings (particularly at the early intervention and
preschool levels). We, along with
several other families, contacted the Exceptional Family Member Program office
at Maxwell—the office that clears families to be stationed there—and informed
them of the dyer situation. We were very
adamant that families with children with moderate to severe autism should not
be stationed at Maxwell AFB. Once the
EFMP office starts turning down families to be assigned at Maxwell, airmen will
have to come to Maxwell without their families, pay for living in two separate
locations and their families and morale will suffer. Not to mention if airmen are coming without
their families, they will not be renting out the same caliber of housing, the
local economy will not benefit from the spending the family would have been
doing in your stores and restaurants. Having
the Air Force colleges located at Maxwell is not sustainable if the counties
surrounding it cannot meet minimum federal standards in providing special
education to our children.
This is our family’s story, but rest assured, EVERYONE who
has a child with moderate to severe autism is going through this horrific
struggle throughout most of your state.
Even though we are no longer stationed there, my heart aches for that
special needs community. I am hopeful
that the leaders of Alabama will step up and pass legislation to mandate autism
insurance coverage. I am hopeful that
the leaders of Alabama will acknowledge the shortcomings of their public
schools and enforce federal and state laws that are already on the books. Money set aside for special education should
not be allocated into different areas.
Studies have shown spending on autism intervention early on can save
states a great deal of money in the long run.
If children are given a strong foundation, they have a better hope of
mainstreaming and not needing lifelong support from the state. Even with that being said, I hope leaders of
your state will stop looking at the bottom line and realize these numbers have
names, they have faces and they have families.
And you are in a position to help them.
Sincerely,
Mandy Farmer
