Susan's Blog

Friday, January 1, 2010

Old Fear’s Resolution

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 remember going into a board meeting at Nat’s school, comprised of parents, teachers, and administrators, and suggesting that either the teachers unionize for better pay, or that we all start a campaign to legislate higher pay for the private SPED schools. (The state legislature sets the pay rates for the private SPED school teachers.) I was met with confused and/or shocked faces. I realize now that union is a four-letter word to many, and so I’ve moved on with different ideas of how to improve things in the private SPED school. I joined organizations that lobby for such things. I pestered my own state rep and state senator for better pay for private SPED schoolteachers. And I donated annually to Nat’s school. Private giving, sure, but I try not to be too dogmatic ideologically when it comes to Nat. Whatever helps.

In the last few years the turnover rate has eased in Nat’s school. I am not sure why or how, but they may have had an infusion of new funds recently. They also built a huge new facility a few years ago. The vocational preparation is fantastic, too. I have begun to look at the future now, to the time when he is no longer under the aegis of public education. I don’t love what I see.

I see rapid turnover of residential staff in adult homes. I see low training levels of these staff. Low-to-none. Poor pay. Poor oversight. And I realize that as troubled and imperfect the conditions were for private SPED schoolteachers, things are far worse for adult service providers.

I have been told 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.


Your timely post today echoes my sentiments for my soon to be 21 daughter. I am saddened and outraged at the difference in pay between private SPED teachers and that of public school teachers. Alot of them stay at the good private schools for less pay, because their work is truly valued and they are supported by a private administration and community of peers that cares about the outcomes for their students. Any time spent at my daughters school, I am always uplifted with the positive vibe and sense of community among the staff which radiates to the students. I truly hope something like a private residential setting for work, leisure and living skills happens on the adult front (and soon!). Thanks again for all you do to call attention to the day to day life and worries of parents of people on the spectrum.

Happy New Year,

Mary Ellen Royer

— added by Mary Ellen on Friday, January 1, 2010 at 11:32 am

Every time you talk about residential care for Nat, I think about my experience working for Holy Angels, a residential facility in NC. Most of it was a good experience, and most of the people who worked there truly did care deeply about the residents and their care. A vast majority of them, however, were not trained at all as far as education about special needs goes. I struggle with that. What's more important? Education or heart? The reality is that often, if someone has both, they are not paid enough and are, like you described, lured away eventually. It has been about 15 years since I worked there, but I still recognize some of the residents' faces on the home page. Imperfect as it may be, Holy Angels is a good model, I think, for residential care. Here's a link, if you're interested:

— added by ASDmomNC on Friday, January 1, 2010 at 11:34 am

I am so on the same page Susan!! I just sat around pondering 2010 and honestly it scared the wits out of me…..most people want to lose weight, ya, i could too but the overarching thought that kept going through my head like a mantra was, "What is going to happen to Mike when he turns 22? In just 5 short months he will be 20? Then what? I have dedicated myself to this new non profit and will never give up hope, I was told I would never get an appropriate program for adolescents in Boston established too and you know what, I pulled him from his private SPED day class wayyyy out of district and home schooled him almost 5 years until I did in fact win my relentless battle to provide adolescents on the spectrum with an APPROPRIATE in district program. Nothing is impossible. That is my new mantra for 2010! In all of Mike's 19 years of life the ONLY time I have seen change in the SPED system is when a group of parents ban together and say loud and clear, "WE AREN'T GOING TOO ACCEPT THIS ANYMORE!!!"
So I hear and feel your pain and whatever we can do collectively I think we should start planning or tossing ideas around. I do have a plan….a mom on a mission yet once again. We should have coffee one of these days!!
Happy New Year! One thing we do know that our kids have made us stronger human beings and what we do today will lay the foundation for others like ours in the future.
You in??

x marie
Marie Duggan
tw: @bak2ack
617 435 2307

— added by Marie Duggan on Friday, January 1, 2010 at 11:44 am

Am I in? I'll even host the party!

— added by Susan Senator on Friday, January 1, 2010 at 11:47 am

You are so in!! LOL!

— added by Marie Duggan on Friday, January 1, 2010 at 12:08 pm

I tossed up my hands on the public school system. We don't have your private one, we don't have autism schools. We have children that are mainstreamed – they call it integrated.. eye-roll – or stuffed into special ed classes with annual teacher turnover.

They promise the world… and don't deliver. He's (8yr old) cared for, he's happy to go, I'll be doing what I have been… most of his schooling at home. IF they should stick him in the (and sorry)… MR class in highschool he's coming home. I'm not leaving him there for 7yrs when there is a perfectly good slow learners education stream in that highschool, if he had support. Then what's the point to teaching him the 3R's if he's dumped in that other class??? Especially after being in with the regular kids up to Gr 9.

Oh… I will keep involved… but no longer believe what I am told.

I need to start becoming involved in Community Living in my area. Go to the meetings… I'd also like to join SEAC (special ed advisory council) of our board but truth is in the middle of winter… it's too far away. We have the 2nd largest board in the Province and the largest physical area.

Lots to think about.

— added by farmwifetwo on Friday, January 1, 2010 at 1:15 pm

Farmwife, The "mainstreaming"/ "integration"isn't much different here. I call it the "inclusion delusion." Teacher turnover, staff training is a joke and the kids really don't have any of the prerequisite skills, such as executive function, theory of mind and social skills, that they need in order to be successfully integrated. You would be amazed at the mothers who fall for it though! They aren't doing their kids any favors.

— added by Anonymous on Friday, January 1, 2010 at 1:27 pm

I hear every word you are saying, Susan. I switched almost 2 years ago from working for a private special needs school to the same organization's adult services. We do train staff, but are spread so thin that we can't get to the group homes that are spread around enough. The biggest draw back and problem is funding, which dips dramatically once the kids are not longer kids. The salaries direct care staff, both day and residential, are terrible. 11 or 12 an hour is about it. We have some really dedicated staff who are fantastic and some who do well taking care of the individuals, but not so well in providing a therapeutic, stimulation environment. A college education is not required, and to be sure, it isn't always the be all and end all, but it does help. Unfortunately, people with good educations generally want to move up or go work at a school.
Our organizations school tuition is very high, per student. Once that student turns 22, they really on Social Security, SSI, etc. The Day Hab is funded by Mass Health, the residential program is funded individually, by each person. 75% of their income goes towards rent (including food,etc.) and the rest is for fun, clothing, etc. It isn't usually very much. It is very frustrating. Kids go from excellent ratios to 2 or 3 staff to a house or Day Hab group room. The more skills your child can gain (and equally important) maintain and generalize, the better. On the good side, I now have some adults back with me whom I knew as children. They had very, very challenging behaviors and high needs as kids, and they are doing well now.
A friend of mine is in the process of developing an adult program, so that when her son turns 22, it will be ready.I'm hoping to be more involved with that, once it's out of the planning stages. Michele

— added by miti on Friday, January 1, 2010 at 6:03 pm

Argh, you know, I should not have made this be about training. It is as you say, Michele. It is about funding. If people are compensated adequately for the job they do, then they will do a good job.

If you don't mind, would you introduce your friend to me, so that I can connect with other parents who are starting homes?

— added by Susan Senator on Friday, January 1, 2010 at 6:09 pm

Thank you Susan, for all of us who have kiddos who will soon be there.
Happy New Year!

— added by Penny on Friday, January 1, 2010 at 7:43 pm

It would help if all of us would relay our concerns to the White House and Congress. This may in turn send more funding to the states. I often send emails to my legislators and to the White House. Funding and education of adult service providers are both major hurdles we need to overcome before quality of care is realized. We also need some creative ideas as to what the minimum standard of care should be. Jane D.

— added by Anonymous on Sunday, January 3, 2010 at 1:39 am