When do you gear up for an autism fight?
When parents have been been in this “autism business” for a while, we learn to feel when a fight might be needed.
We have a radar and we see the signs.
Your gut tells you that a new aide isn’t working out or a program needs to be changed or your child needs a new service (and, you have to fight for it).
When do you move forward on that fight?
Here’s an example:
My child’s social skills services are provided by a California regional center. He is a client with one of the twenty-two California regional centers that provide services for children on the autism spectrum.
At one point, my child had two social skills groups per week.
Eventually, the regional center and the social skills facility no longer agreed to renew one of those groups. They wanted to knock it down to once a week.
While they tried to work it out, my child’s services operated under a 30-day contract.
The problem centered on my child’s regional center’s refusal to re-up a six-month contract due to questions they had about the second social skills group.
It was a question of the legitimacy of the second class. Was it needed?
How did we handle this?
The economy was in a downturn at this time. We understood what the regional center wanted… to cut funds.
After the 30-day extension was up, I was informed that the second social skills group was being pulled.
We geared up for an autism fight.
We were upset at being left in the dark because we found out from the facility that our child was on a 30-day extension and not the usual six-month contract. Regional center really should have informed us.
Unfortunately, I was also upset with the facility.
They knew us (Our son had been going there for seven years).
And, they knew I was an advocate-type mom. We fight when we need to fight.
I was used to the regional center’s lack of communication. I hadn’t always found them to be right on top of things.
For example, (and, again, this is in my experience) regional centers sometimes act more on the theory that if the parent doesn’t question something, than they (the regional center) don’t necessarily have to be proactive. The parents have to ask.
Ignorance is bliss to a regional center. And cheaper.
What is it about regional centers in California?
Regional centers in California are overworked and underfunded. However, I have learned over the years NOT to expect forthright information.
In this case, the regional center opted to simply deal directly with the social skills facility and cut out the parents.
Even though they represented a client–namely my son.
On the flip side of this argument, I had relied on the autism facility to communicate with me.
How did we fight this decision?
Once we were in the loop, I made a phone call to my child’s service coordinator and demanded to know what was going on with my child’s social skills services.
She was unavailable on that day, but called me back the next day.
Right off the bat, she had some information that was wrong which had to be corrected.
After we worked that out, she promised to attempt to work with the social skills facility to “see what we can come up with.”
She suggested another 30 day contract was possible as each side tried to work out the problem.
For the month of December, my child was put on another 30 day contract.
Now, I had to talk to the facility.
I spoke at length with the person at the social skills facility who was handling the situation. The bottom line to the conversation was that they were still working out the social skills services but had no further information.
During the second 30 day contract, the social skills facility had to quickly put together an assessment/report on my child. In the report, they had to defend the position that this child (my son) needed to keep his second social skills class. They have to defend their professional opinion. It is no longer enough for professionals to inform a regional center that a service is still needed, they have to defend the funds going out.
It was rushed.
The facility put together a rushed report. Unfortunately, during the month of December, they only observed my child twice.
A bigger problem.
The other issue centered around comments I had heard.
At the facility, the social skills person told me that the regional center questioned the second social skills group with comments like, “The child has had social skills for 5 years and should be able to complete social skills training within two.”
No autistic child can learn social skills “within two years.”
The regional center
The regional center had a money issue and a new policy. It amounted to a timeline with deadlines.
We were still in a fight
I sent an email to my child’s case worker to inform her that I wanted to be in the loop.
We felt this situation was sad. It boiled down to money and someone within the regional center system who believed that children on the spectrum can learn social skills in two years.
That was how they thought.
There was no way our child’s regional center had the right to put a timeline on our child’s ability to learn how to be social. Especially when it so blatantly has to do with saving money.
Regional centers are supposed to be committed to our kids. There is no timeline for children on the autism spectrum. Each child is different. It is unfair to think in any other terms.
The end of the fight.
We lost the fight.
It was a shame, but it was the reality of the system.
Still, we knew when to fight and how and took it as far as possible (reasonable to us, that is).
We did the best we could do for our son with autism.
Read this and find out why.