In Florida, if you have a child with a developmental disability you fall into one of two categories. The first are those people that are either not on the waiting list because no one ever told them about it, or are on the waiting list, but are receiving absolutely nothing from a list that never moves. If you are among those on the non-moving list, you know your wait will be very long, as the legislature recently moved all individuals under 18 to the end of the list, because, well…they have parents to care for them. Logical? Maybe. A solution to the rising problem, NO WAY!
The other group is composed of people who are “on the waiver”. Some have been there a long time, and some have come on through the process that I am going to describe to you, a “CRISIS TOOL.” Now, to clarify, a “CRISIS TOOL” can also happen for someone already on the waiver as well. It is done any time the individuals needs increase and require a change in their amount of services. The first step is to try to move the little bit of services you have around and cut enough to make room for what you really, REALLY need because of a change. If you refuse to give up all of the luxuries (say what?) like respite or PCA, they will grudgingly schedule a meeting to discuss your “CRISIS.” In our case, the meeting was scheduled for two and a half weeks from when I requested it (March 13, 2012)
So, the meeting day comes (June 6, 2012) and our Consultant and Board Certified Behavior Analyst (BCBA) and I sit down and talk about my son’s needs. We discussed his increased aggression, his increased size, severe concerns from the BCBA regarding his size and the onset of puberty, environmental modifications needed to keep him safe, and various other concerns that were valid for a boy who was almost 13, entering Middle School, Aggressive, brilliant, and making big gains utilizing Applied Behavior Analysis (ABA). We spoke of the increased bruising and head banging, pictures were given to the consultant. Many pages of documentation were shared. The meeting adjourned with a promise to “get right on this”.
A few days later I was told that the new Behavior Support Plan was almost ready and would have to go before the Local Review Committee (LRC) for approval. Knowing we were filing a “CRISIS TOOL,” I was quite surprised to find out it was being presented on May 22, 2012 (Two months after I raised a flag saying we were in CRISIS).
During this time that I spent waiting, I kept busy by helping my friends who were also in various stages of submitting their “CRISIS TOOLS” for their children. These were all parents that I met when Austin was first diagnosed, so we have similar situations because our boys are close in age. Autism is a spectrum disorder and it varies greatly. My friends tend to have some similarities in what they deal with.
CRISIS can mean different things to different people, so with the permission of my friends, I am sharing just a few details for their privacy, while still giving insight.
One mom’s CRISIS includes her son unbuckling his seatbelt as she drives down the highway, in order to climb over the seat to get to his sister to hit her. This was written IN HER Crisis letter including the temporary solution of her daughter holding an umbrella to defend herself. This “CRISIS TOOL” took over 6 months.
Another mom found herself using temporary measures that included a reinforced bedroom door that she had to lock her son behind, and praying that her husband made it home before he got through the door and reached her and her younger son. Her “CRISIS TOOL” was initially filed in February 2012.
I had a defining “CRISIS” moment myself. It was my son’s 13th birthday. My daughter and I were his Unpaid Natural Supports, as we have been since 8-9-12 when I was told we had overspent and had no money left for services for the rest of August. I’ll explain that more a little later. Anyway, we tried to take Austin to McDonalds, one of his favorites, for lunch. He became upset, for some unknown reason and threw his water cup to the ground forcefully. We were center stage at that point. I took Austin by the arm (all 5’5” and 203 lbs of him) and dragged him behind my 5’4”, 150 lb body and got him out the door as fast as I could. My daughter packed up our lunch and muttered apologies and came outside. At that point I had blocked many head bangs to the wall and the concrete, although some did get through, and had been kicked in the leg and punched. She walked out and I told him in my boldest Mommy voice, "GET IN THE CAR!" The date was August 21, 2012. I called every number I had for the Agency for Persons with Disabilities, yet made it nowhere. I cried myself to sleep that night.
Are these all day, everyday occurrences? Absolutely not! However they do occur at a frequent enough of a level as to initiate the parents reaching out and going through the nightmare RED TAPE of the dreaded “CRISIS TOOL”. So, there you have it, examples of what our “CRISIS” can look like.
As promised, Austin’s BCBA created an amazing Behavior Support Plan. He worked extremely hard to be sure to account for all of the days that Austin had school, and when he didn’t. He meticulously planned his schedule in order to maintain EVERYONE’s safety while allowing Austin to do the things he loves the most, like going out in the community, road trips, shopping, and interacting with all of his family. He addressed all the safety issues that we face with Austin like elopement, and self-injurious behaviors, and his sensory needs. He included what he knew as a professional Austin needed to continue to be successful living at home with his family while adjusting to becoming a teenager and all that that entailed. He was incredibly concerned about Austin’s size, and the importance of getting his behavior controlled. He stressed that one person cannot handle Austin when he is melting down. It was all in the draft I was given to read.
He began calling me with questions needing more information, more copies, more proof, more explanations of times for PCA and sleep, etc. It was then that I realized that the District was working on the Behavior Plan to try to get it to pass through. He had to cut hours here and there, and explain everything. Finally, he did the review in front of the LRC (Local Review Committee), it took from May 22 to May 25 to reach an agreement on my son’s Medically Necessary Treatment. By this time, I knew that Austin would not be going back to public school, but would instead be on Hospital/Homebound because his behavior could not safely be managed in a setting that would give him the academics he had been lacking. I knew that the changes made to his plan would make it very difficult to cover all day too. But there was nothing I could do. We moved forward. Everything was finally sent to the State of Florida by the District on June 27, 2012.
Austin’s “CRISIS TOOL” was denied on July 25, 2012. I have requested a hearing, and as of the writing of this entry, do not have a date. I requested a copy of the CRISIS TOOL that was used to reach a decision, and discovered that none of the pictures, graphs, documentation of the extent of behavior my son was exhibiting had been included. It was denied as not Medically Necessary, and because he has had enough Behavior Assistant hours that they should have taught us how to handle his behavior by now. I was LIVID!
Where we are today, is remaining without any services at all. The state agreed to “give Austin the benefit of the doubt” and continue his services through January, but need to see “significant gains”. I have asked them to define significant with no answer. I have had emails ignored, phone calls ignored, and as I said services pulled since August 9, 2012, for being over budget for June and July’s payroll. The strange thing is that when they put together Austin’s “Benefit of the Doubt Budget”, they left June and July at previous funding levels because they were “over and a moot point” per one Agency employee. Because of this “overspend”, they held the employees paychecks until now (when September’s Medicaid deposit goes in) and they will get paid for payroll from June/July and later in the month for August. This means all of September’s money will be paying for the summer, and we are being left as his Unpaid Natural Supports to cover the months that the Agency for Persons with Disabilities refused to acknowledge had happened. The only solution they offered was that possibly it was time that Austin should be "PLACED" for a little bit to help his behavior.
Check out my adorable guy and what he does at the link below, and then you tell me...doesn't he deserve to live at home with his family?
AUSTIN'S CREATIONS
Perhaps we need to hire administrators with better number crunching skills that can understand the crazy programs they expect us to navigate WHILE CARING FOR OUR KIDS!
Expect More…Failure is not an option. We are just getting started!
October is Anti-Bullying Month. In our house, you would have
thought it was in September, and we wish that it had been August. If it was in
August, maybe our September wouldn’t have gone so wrong so fast. Let me
explain…
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