The Fight To Be Heard

Do better whatever you do. No matter how capable, we must work, think study and do better. This alone leads to mastery, leadership and independence.
G. Borglum


This morning I read an article summarizing California's budget crisis. The story was short, but not sweet. It said what we all know. The state has been out of fiscal control; many who represent us have acted irresponsibly and the time has come when we all have to pay.

As a mom who began going to Sacramento five years ago asking our legislators (on both sides of the isle) to please respond to the autism epidemic and our state's (then pending) financial crisis I can't tell you how disheartened I felt each time I left Sacramento. There were the occasional bold politicians who would not make time for us and the ones who had no knowledge of the entitlements in place for people with severe developmental disabilities. But for the most part one "public servant" after another would say, "Of course I want to help disabled children and of course I understand and appreciate that we must protect the most vulnerable individuals in our communities." or “I really didn’t understand the impact of the autism epidemic until now and I agree that something must happen to help families.” or "I've always been an advocate for the special needs community and I won't stop now." or "I understand and I'm doing all I can, but the problem is not me it's those other guys."

Well intentioned bureaucrats push out plans and policies, because on paper the numbers add up, then they pass them along for implementation. The result, I fear, will always be many bad decisions stacked upon more bad decisions that will not achieve the desired result because, in reality, major system-wide changes made by people who lack intimate knowledge of ALL the working parts are subject to failure for a myriad of reasons. For now it seems we are just putting our finger in a dike praying for a miracle before it explodes.

But it will explode, with plans that are too expensive to implement, impossible to implement (because of real world limitations), offer short terms solutions that fail to address the underlying problems are simply inadequate or in some cases destructive.

For example; I was told that one California school district may stop funding any after school in home interventions (i.e: ABA or priming) for our children unless they can be provided in a clinical setting! An impracticable maneuver because few parents can leave work to get their kids to a clinic after school, and few NPA in-home/school service providers have clinics that can accommodate the numbers of children getting after school programs. I was also told that in response to California’s budget crisis, one regional center cut all its social skills programs, determining those services fell into the same category as summer camp "social recreation" which the state has stopped funding. Our kids have no life without social communication; real social skills training is a proven therapy for children with ASD it is vital, not recreational.

In another cost cutting move I hear that a major school district may be charting a move away from their existing "inclusion" model and back to the restrictive model of special classes for all children with ASD. Hardly the "least restrictive" environment we are promised by law, but a major cost cutter when you think how much cheaper it would be for schools if they did not have to provide kids with one on one aides or NPA behaviorists.

It's not easy to keep my faith in our representatives who collectively, for all the talk and promises, didn't change course to avoid this crisis. As I learn about vital services and programs that our kids need being cut daily. School districts and state run programs are scrambling to stay afloat by taking away everything from summer school, to PE, to transportation. Regional Centers and their vendors are trying to manage the impossible task of figuring out how to follow the law, maintain the integrity of the entitlement system, while abiding by the mandated budget cuts, when they have been living with rate freezes the populations they serve continue to grow to record numbers.

If I sound angry, I am. But I am not just angry. I am horrified, not for me but for us, our society our children. I don't understand what it will take for us to learn that bad decisions stacked on bad decisions in search of short term solutions never work, they only postpone the inevitable.

It seems so obvious to me that we must take care of our most vulnerable populations to insure a better quality of life for each of us. It seems obvious to me that the individuals impacted by the autism epidemic have such potential and they deserve the opportunity to live their best life. I assumed other people agreed and we were safe. Well, I don't feel safe. I don't feel as if I can assume anything. I don't believe that I can expect anything. Right now I feel as if our country is turning its back on my son's life struggle, a situation not of his own choosing and from which all dignity will have been stripped if he is not valued in our society. Without a social safety net, where will he live? Will we bring back the massive institutions to house the DD population that we worked so hard to close? If not, what? Will he live in substandard housing, lacking social skills, without access to a work program, without a job, unable to care for himself, unable to afford qualified assistance, vulnerable to predators and stripped from having the opportunity to contribute to society?

So, all I can do is live the quotation I placed at the top of the page, and do better. Fight for my son while I wonder if maybe, just maybe, as a result of the seemingly overwhelming challenges we take on 24/7 raising our special needs kids (that people can't begin to comprehend), combined with our grief, exhaustion and overwhelming schedules, I have not been loud enough.

Clearly not, or I would not have the need to write this. We must find a WAY TO BE LOUDER. We must leverage everything we have as voters, so that our politicians and bureaucrats will know that even when autism brings silence to an individual it does not mean that they have no voice. We are their voice!