Even more important than "productive and happy" as a goal for our special children is our goal of keeping them safe. I relate as both the parent of a normal child, whose safety I think about daily, and as the parent of a special child, my son, Greg, whose safety is more frequently on my mind (hourly if not more). I worry that his van driver will have an accident and Greg won't be able to tell the ambulance driver what hurts. I worry that Greg will wake up in a hospital, unable to comprehend what is happening around him. Another worry is that Greg might be waiting for me at home, alone, as I sit in a ditch somewhere, unable to reach 911 or call a family member or friend to go to him. Accidents are possible at Greg's work site, but not likely to be as serious. That worry is less because the workers at CIT, Greg's work site, are well-trained and very protective of our special adult children.
So when our "government", both state and federal, decided to make changes to the work environment of our special needs population, concerns about Greg's SAFETY became paramount. As a rule, I am a fighter for justice, but where have I been for the past 40 years? I protested increases in college costs back in the revolutionary early 70s, yet I haven't appeared at our state capital in more than forty years?! Shame on me.
In summary, the Department of Human Services originally proposed changes to programming for our special adult workers to promote work in the community. I am not arguing against that lofty ideal. In a utopian society where there is no bullying, no violence, complete equality and kind, benevolent people everywhere, participation in regular employment is a wonderful idea. However, the way the new rules were to be written included incremental steps of participation in real jobs of 25%, followed by 50 and 75%, all to be accomplished by 2019. What were they thinking? Safeguards out the window. Choice? None! Training and transportation? Vague. I was truly scared for Greg's future as a productive worker at his workshop. How can my son, a young man with little to no conversational ability, a pacifist through and through who doesn't know how to fight back, a kind soul who does what he is told without question, thrive much less survive? I vote for more safety and less worry, as I am sure many of the hundreds of parents who showed up at an informational meeting a few months ago, vote.
As a result of our active, vociferous participation in our government, we accomplished change that will protect our children by keeping them safe and productive in workshops where most thrive under the watchful eyes of supervisors and aides. Our first accomplishment, the new proposal, states: "Provider will offer commmunity integration for no less than 25% of program time and up to the amount people choose effective September 2018. This is not a requirement imposed on individuals." In part 2 of the same proposal: "The person and their team will explore the person's interests/preferences and develop a plan for meaningful community engagement that will support the person's lifelong learning and growth, including the type of community activities and the frequency." The concept of 25%, 50% and 75% has been dropped from the proposal. This round goes to our children. They now have a choice.
I was especially concerned about the "exception" part of the proposal. Surely Greg would be one of the exceptions? But what if someone out there deemed him capable of working out in public based on simple observation of his productivity at work. He is very productive! However, given his nearly nonverbal state, he would never be able to advocate for himself like a normal individual at work.
Besides the concept of exceptions, if the majority of special adults switched to work within their community, did that mean Greg's company would close? The government seemed to be switching its resources to a whole new concept of employment. In my mind, this would leave little funding to keep a sheltered workshop open.
Now, I am reassured by our second accomplishment, the new proposal which states: "Exceptions for medical, behavioral health, or conditions that affect the person's ability to participate or impacts the person's health and safety. The determination will be made by the person's team. There is no additional review." With this new proposal, round two goes to our children, also. Workshops must remain open.
Of course, there is much more to this original document, pages and pages of changes to the status quo which, when whittled down to the most important, pale by comparison to the two included here. If you ask Greg's van driver, she will tell you about a daily occurrence that occurs as they approach CIT. Greg breaks into his happy chant because he is ecstatic to arrive at work each day.
If you know autism like we do, you realize that there is not a cookie cutter solution for each of our children. Whereas many can work in public, others, like Greg, need our protection. Nothing is guaranteed, but for sure, I worry less about Greg during his work day than I worry about him at any other time.
When my friend and fellow parent of a special child, Patsy Krasevic, asked me if I was going to Monday's committee hearing at the Capitol building, I was not sure what I could accomplish. I'd already written many letters to my congressmen. I'd made phone calls as well. Now, I will never hesitate again when it comes to participating positively in governmental issues. I was there. I saw the actions taken by a caring group of congressmen. I saw bus loads of like-minded parents, educators and special individuals campaigning for basic human rights. By getting involved, we were able to change opinions which resulted in a new proposal. I not only observed our government work, but I also felt like I was heard. That is the definition of democracy. A political party did not win this time. Our children won.
(For more information about the renewal of the Office of Developmental Program's Consolidated and Person/Family Directed support waivers, see their website.)
Several hundred advocates participated in a gathering in the Capitol building of Harrisburg to promote the welfare of special needs adults.
If you tell children they have rights, you have to be prepared when they exercise those same rights. It was quite a sight to witness.