There has been A LOT of talk about funding for Autism families, individuals and programs lately. There was recently a huge over haul of the system that made a lot of people angry, upset, confused... every emotion possible. In a nutshell in order to relieve the ever growing wait list for services the idea was that every child, based on age and not need, would receive the same amount of funding as determined by their caregiver's income bracket. That is a very oversimplified explanation but it should be enough to get the idea across. When this initial change happened I didn't really know what to think. Funding based solely on age with no account for the fact that Autism spectrum disorder is just what it sounds like; a spectrum, how does that work?
Being someone who has worked with kids and adults on every end of the spectrum I just could not fathom how this would work. The plan sounded very good on paper. To someone who didn't know much about how funding worked previously it actually made a lot of sense. There are kids who receive a lot of funding and then all these others that receive none? Yes it makes perfect sense to spread the money more evenly. The problem of course lies in the fact that everyone was getting "some" but no one was getting "enough". It was equality but not equity. It was inviting everyone to dinner but not giving anyone enough food to eat. There seemed like there was nothing to be done. The government was happy with the plan. They said it would work. People started getting laid off, centers were on the brink of shutting down, kids were going to have to go to school full time and be unprepared and schools were going to be understaffed and crowded. It looked bleak.
But then something happened. Something that made me and has always made me proud of every single Autism parent, caregiver and service provider there is. They fought. The wrote letters and signed petitions. They protested locally and in the capital. They made darn sure that anyone who would listen knew that this would not and could not work for their kids. I don't know if I can say I have ever been more proud to be part of this community in whatever small way I am. They weren't there fighting for more money. They weren't there fighting because they were greedy and they didn't want to lose what they had. They were there because they wanted to be heard. They wanted to be respected. For so long they have had to fight to have their children be recognized as people. They have to fight every day to have the people they loved be understood for who they are. And here is the government coming and telling them that all they have fought for was going to be lost. Not here and not today.
Now there is a new plan being put in place. The government is saying we heard you and we made a mistake. They are saying we understand that your kid and her kid are not the same and their needs are complex and varied. The government admitted it was wrong. When does that happen? They are working on a new "needs based" plan. Does it sound perfect? No. Is there still work to do? Yes of course. Will all those autism parents ever stop fighting? No. Never. No matter what happens.
I am not an autism parent, I am a sibling, which is not quite the same but I am still here. I am ready to fight for those two boys who I call brother and for anyone else who needs it. I am proud to be part of a community that can come together like that and that can make a difference. All I can say is: keep up the good fight.
That's all for now and we will see what happens next. Let's hope for good things to come.