"A Nation exists to serve its citizens."

 

 

I didn't say this, but I could have because I believe it.  I have to give credit to Trump's inauguration speech writers.  In our role as American citizens, we pay taxes, fight in wars (my uncles and father), serve jury duty and vote.  We obey laws, contribute to charities and support public education, to name just a few of the ways we participate actively in a cooperative democracy.

 

Blog readers: please note!  The state of Pennsylvania has new ideas on what is best for people who are disabled.  The Pennsylvania Office of Developmental Programs (ODP) has proposed many changes which will directly affect our family members who have state funding known as waiver funding.  The leaders may believe that they are serving our citizens, but they are not.

 

In this case, only parents and families of adults and children with special needs are experiencing this potential injustice.  It is due to my need to spread information about autism that I find myself sharing information this evening with you normal folk out there.  I have always believed that a nation is judged by many things, in particular, by how it treats its citizens who are disabled. Here's what is new in the world of "special".  There is much more to the proposal than this, so I recommend that you study and make your own decision about the changes especially if you have a family member, a friend or a neighbor who is special. 

 

To be fair, the ODP has made many proposals, a whole book full, and some are good.  However, here is the change that has parents all over PA writing letters to their congressmen, meeting at work sites, talking amongst ourselves and worrying every minute about the future of our children.  By January 1, 2018, our special children will have to work in a regular environment 25% of the week.  It gets progressively more inclusive until, by 1/1/2019, disabled citizens will have to spend 75% of their work week in a regular work community. 

 

You are probably thinking, "That sounds great.  Why is she complaining?"  Wouldn't it be good for our souls to see thousands of special people working alongside us? 

 

Yes, indeed it would.  It is my fervent dream that all who can work find their place in society.  However, the very concept of giving our special children more choice in how they want to spend their days has been removed by this proposed change which mandates how they will spend their days.  Think about this.  My son wants to go to work.  His work site is known as the S. Wilson Pollock Center for Industrial Training, and he has worked there for ten years.  He thrives in a protected environment where he labels, sorts and boxes products that have come from companies all over America. 

 

Greg is fortunate to receive waiver funding, PA state-sponsored funding which makes it possible for him to work in this protected environment and have qualified people drive him to his work site.  Without it, Greg would, in all likelihood, stay home all day.  An alternative is adult day care which serves many who are disabled, but someone like Greg who is capable of working needs a special set-up.  He cannot live independently, nor are his behaviors good enough for him to work in the regular workplace. 

 

Yes, I could take him out into the community during the day and be his aide while he greets people at Walmart, a real job.  Yes, I could keep him safe at a shredding company.  (He LOVES to shred! Yikes!) Yes, I could work side by side with him at a laundry, another of his interests.  But what adult that you know wants to spend all day side by side with his mother?

 

I am retired from teaching.  What about the families who are not?  How can the state afford to hire one on one aides for every special citizen who wants to work?  How can the state check each and every disabled citizen to decide who is capable of work and who is not?  We are not cookie cutters, making perfect cookies every time.  We sometimes produce a cookie that is unique with unique needs and unique challenges.  We are the dough.  You might try to shape us with your altruistic solutions as to what to do with special needs people, but sometimes we need to reshape ourselves, the "dough," and think how it might function outside the cookie box.

 

Greg would definitely be excused from this proposed change due to his behaviors, but if his work site closes due to lack of participants and funding, where does that leave him?  It's not funny, but I've been working on my baking skills just in case Greg has to stay home with me and start up a baking business.  I bake cakes for my former team teachers at Milton Hershey School, using them as Guinea pigs.  Uh oh.  Now they know I have an ulterior motive.  I'm NOT the generous person they may have thought I was.  I'm simply practicing on them for Greg's next job!  

 

The system is not broken.  Leave it alone.  My son's autism necessitates his employment in a special place.  It is unsafe for him to be alone, unsupervised for even five minutes.  He cannot speak up for himself nor can he fight off bullies which we all encounter in our jobs.  I implore the ODP to consider each and every citizen's needs and to look closely at the characteristics that might make a special person an unlikely candidate for regular employment even if there is qualified supervision.

 

How we treat our special people indicates a lot about us as a society.  We need to offer these wonderful people options, not limit their options by mandating how they can use their funding.  Like Donald Trump said today, "A nation exists to serve its citizens."  Let's serve our special needs citizens by giving them the best services anywhere in the world. 

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After Greg put this on our Christmas tree, he proudly showed it to his dad when Jay got home from work.  CIT is Greg's life.  He needs to work and is proud of his contribution to society.