Saying goodbye to Community Inclusion

Today was the 15-year anniversary of my being hired for my first job in my chosen field. 

I spent it packing up my office. 

I haven’t lost my job. But I’ve lost the part of my job that I loved most.

For those who aren’t familiar with my job and my field – I’m a Behavior Specialist, working with people who have developmental disabilities. My role is to figure out what need a person’s behavior meets – attention, control, stimulation, escape from physical or emotional pain, etc. – and make a plan to help them meet it without doing dangerous or inappropriate things. It’s a wonderful, interesting, fun job, and despite its challenges and the modest size of the paycheck I can’t imagine doing anything else.

Before I was a Behavior Specialist, I worked in a Community Inclusion program. It was for adults with severe cognitive and physical disabilities, and the emphasis was on helping them to achieve their own goals. If they wanted a job, we’d help them find one. If there wasn’t one, we’d create one. If they didn’t have the ability and desire to do any kind of job, we’d find out what they COULD do and what they DID want, and go out and do the hell out of that. We had people learning to read, learning to communicate more effectively, learning to order their own food, learning to make paper, learning to paint and draw, learning to play music, learning to hold and count their own money, learning to feed themselves, learning to take care of plants, learning to talk to people they met in the community, learning to cook… going to parks and zoos and fairs and stores and bowling alleys and swimming pools and restaurants and concerts and bars… and just trying all kinds of new things to find out what they could do and what they liked doing. 

And it was GOOD. It had joy. It had fun. It had a sense of hope that people could be doing better a year from now than they are today. It met people where they were at and helped them get closer to where they wanted to go. It had people smiling and laughing and socializing and learning, who used to do nothing but scream and hit. It had people who were not able to work, still able to do SOMETHING worthwhile. It was a beautiful thing in the lives of the people we served there, and in my life. 

 

And when I got promoted to Behavior Specialist, I stayed involved in that program to the extent that I could. Eventually my office was there, and that worked great because it meant I’d see most of the people on my caseload every day, and I still got to help them participate in the part of their day they loved most.

And I poured the best of myself, my best work, all the creativity and effort and passion and humor and love I have, into that program.

That program has been shut down.

It closed not because it was failing to accomplish what it was made to accomplish, but because political and legal decisions are made by politicians and judges – by people who have no actual experience with the things they’re making decisions about.

There was a series of funding changes over several years that gradually made it impossible to do the job with the amount of money the state would pay for the work. Each change, to an outsider, would make logical sense; but to someone actually doing the job, it was an obvious mistake. And each time the government cut the funding, they never considered that the needs of the people we serve hadn’t decreased just because the funding had. They still needed physical assistance to eat and drink, use the bathroom, get in and out of chairs, and communicate… let alone the help they needed in order to learn new physical skills, experience new places and activities, learn and practice the rudiments of social interaction that would help them be more safe and appropriate in community settings, follow the routines that they depended upon in order to feel happy and safe and in control of their lives. All the things that Community Inclusion programs were created for. Apparently, the government thought these things aren’t important for people with disabilities. 

What’s important to the government is that we pour the majority of the (limited) resources into getting people jobs. And that’s a worthwhile goal, it really is. Having a job gives people money, which gives people control, and that’s something people with disabilities often lack. In fact, most of the challenging behavior I see comes from people who have a lack of control, and I am all for helping them get control in safe ways. By all means, if someone can get a job, we should support them in doing so.

But: it feels like we sacrificed the quality of life of the people with the most profound disabilities, the ones who won't benefit from the employment programs because they lack the physical or cognitive ability to do the kind of work that employers are willing to pay for. 

I understand why legislators and lawyers made the decisions they did, I really do… and maybe they meant well. But the end result is that people’s lives suffered. This beautiful and worthwhile endeavor;

this place that ensured the most easily overlooked people would have a time and place each day to get someone’s full attention; this place that brought joy into lives that had been joyless; this place that gave a predictable routine and rhythm to lives that used to be in chaos; this place that helped the world's most lonely people to build this wonderful, quirky little community where they were happy, safe, and comfortable... all this was disbanded because it was no longer considered worthwhile by people who had never even seen it in action.

All through the past month, I’ve had a line from the Kipling poem “If” running through my head:

“If you can bear to see ... the things you gave your life to, broken,

And stoop and build ‘em up with worn-out tools…”

I hope we can rebuild, in some way, what that program had achieved. I sure as hell am gonna try.

But for now, I grieve for what’s been broken.