Susan's Blog

Monday, December 30, 2013

Ghosts of New Years’ Past

I am reposting from my own blog, four years ago New Year’s Day. Here’s what was on my mind, maybe it’s something you can learn from. I’m hoping it’s something I can learn from, at any rate:

The New Year is here, and with it comes the Old Fear. I keep buzzing around the issues of adult services, or perhaps these are buzzing me, tiny specks needling into my eyes and ears like gnats. But it is Nats, really; Nat’s future.

When Nat was younger, plunged deeply into the center of his school days, all I could think about — in activist terms — was that the career of the private special needs school teacher needed to be improved. Let me clarify that I am not talking about regular private schools that families pay big bucks to send their kids to. I am talking, instead, about the state-accredited private special needs schools that public school systems pay to send their complicated special needs kids to.

These state-accredited private SPED schools (which Nat has attended most of his school life) are also known in Massachusetts as “Chapter 766 Schools,” because they grew from the beloved Chapter 766, the legislation that called for every single special needs child to be given a free and appropriate public education. Chapter 766 opened the doors of the public schools to kids like Nat. And yet, Nat only attended school in our town for one year of his life; when he was six.

What I learned in all of Nat’s school years is that the public school special education (SPED) teachers had the same training as the private school SPED teachers, but earned sometimes a third more salary. I may have that figure somewhat wrong, but what I was told by the teachers themselves at the private schools is that they were always being made offers they could not refuse. The public schools would siphon them off, freshly trained in the private SPED school trenches, causing frequent turnover in staff of the private SPED schools.

The turnover in the SPED schools created an unstable situation for students like Nat, who were most likely in those private schools because the public schools could not/would not accommodate their needs (classes were too large, approach was not appropriate, etc.). So here you’d have a guy like Nat, who needs situations and people to be ultra reliable, but instead, he was getting all this upheaval.

I have been told now that when Nat is an adult, I can no longer expect any sort of skill-building for him such as we get in his IEP. Now, when he is not at his job (should he still have one) or in his DayHab, the emphasis will be on “leisure.” We all know what that means. Sitting around doing whatever he feels like doing. Utilizing his skills to the extent that he has learned them while still in the IEP years.

Nothing strikes fear in the heart of a special needs parent as the ticking of the clock. Our kids’ development is like a time bomb, where we feel nothing but dead lines and the mile stones that hang around our necks. Catch up! Lost year! Lost time! Brief window! This is our Greek chorus.

But instead of wringing my hands like Medea, I’m going to figure out how to improve the situation of the Post-22 developmentally disabled adult. I think that the place to start is the direct care workers, the group home staff, the personal care attendants. Who is working directly with your loved one? How dedicated are they? What is their level of training?

Why does the law demand that those working with Nat are highly trained, until he turns 22, and then, suddenly, anything goes as long as the CORI checks out? Why are the pay levels and training levels so different, between public education personnel and adult group home care? Do our adult children’s needs suddenly drop off? Or are we just not fighting hard enough?

Clearly the law needs to change. Extend the standards of IDEA into adulthood. Those who work with the most vulnerable must be the most highly trained. And don’t tell me it will never happen. That’s what people thought before the ADA/IDEA/Chapter 766…

This is a civil rights issue if I’ve ever seen one.

The renewal of energy and focus is what New Years are for.


I agree with you. IDEA should extend for a lifetime IMO since learning never stops and kids on the spectrum should have the right to intensive educational teaching far beyond age 22. The sad fact is it will never happen. Never. No one will fund something like this beyond 21 or 22 and adult services will always simply be leisure and babysitting services. It sickens me that these kids are basically left to be babysat and entertained beyond age 22 but that is the case.
I think parents need to start saving for private services if they can because no matter what state you live in beyond age 21 or or 22 simply means housing and babysitting.

— added by pat on Tuesday, December 31, 2013 at 9:33 am

Direct Care workers have low wages in part because they do not need a bachelor’s and then a master’s degree in order to take care of adults with autism. Some of their supervisors and social workers do have this education. In our school system, parapros and teacher’s aides also do not have the education or high wages. They are sometimes the adult who has the most close contact with our children and carries out the instructions of the highly paid teachers.

Our kids had the state rehabilitation program to help them through school, finding jobs, interview skills, and Goodwill also helped.

They are high functioning. My son now has a job as a software developer. My daughter, who has more issues, is having a difficult time finding a job. She is 27, and Goodwill and the State program have dropped her from their case loads. She has been able to find a part-time, seasonal job with a homeless shelter, but is unable to find a full time, regular job. She is highly valued (although not highly paid) by the homeless shelter for her skills in accounting. But her autistic features,language related learning disabilities, and inability to drive have been a barrier to regular employment.

So now that the “giving” season is over for the homeless shelter, her hours at the homeless shelter will be reduced to six hours a week. I am grateful that she has this opportunity and that she has this social outlet. However, she gets lonely and bored during the week. She has been trying to find things to do. She has been teaching herself how to draw and paint and work with chalks. We go to church. She has that social opportunity, and work.

— added by Ann Kilter on Wednesday, January 1, 2014 at 6:22 am

Such great insight. 25 years of my early career were spent at a private 766 school for kids with autism. The pay was so much worse than it is now, even for those types of schools. We were lucky in that we had an atmosphere and administration that was supportive and encouraged learning and growing and STAYING! The consistency that these guys need is paramount and without it, what the heck are the school departments paying gigantic amounts of $$ for? I so miss those days, both in the school and residentially. We were encouraged to be a community and it showed in both the progress that the kids made and the longevity of the staff.

— added by Michele on Wednesday, January 1, 2014 at 6:50 pm