I addressed about a dozen members of the legislature at Holy Cross College this week, as a guest of an event hosted by The Center of Hope. I received a lot of great feedback at the event, so I thought I’d share it. I do think it contains some messages that need to be heard.
I would love for you to share this post generously, so that we can begin some momentum – right after my speech I had the honor of a private conversation with the DDS Commissioner and the Assistant Secretary for the Office of Disability Policy and Programs at EOHHS (Office of Health and Human Services). I gave them my elevator speech for an idea I’ve been developing about having Transition Coordinator positions developed and mandated for all individuals at least 2 years prior to transition into adulthood. They were very encouraging and said this conversation will need to involve DESE (Department of Education) at the table; they encouraged me to reach out and get the support of the community on this. I will post again with more details; watch for that in the near future, because I will be asking for help.
There’s a phrase that is being coined by the autism community to describe the numbers of children with autism who will need supports, many of them for their lifetime. The phrase is the “autism tsunami.”
I was watching “60 Minutes” last night and they were doing an investigative report on the tsunami that hit Japan. One of the people they were interviewing made the statement that the outcome – the number of lives lost and properties destroyed – could have been very different if the government had done more to prepare Japanese citizens for a tsunami.
Preparedness is one of the things I’m most passionate about. Let me give you some idea why: earlier this morning, Jim Howard (Exec. Director of The Center of Hope Foundation, Inc; host of the morning’s event) told us that 804 students with autism will enter the adult system in MA. Easter Seals published their 2013 State Autism Profiles; the number of children in 2011-2012 ages 3-5 with autism is estimated at 2,290. The number of children ages 6-11 is 5,889. These children will grow up and enter the adult system in the next 10-15 years. There’s our tsunami, and we must be prepared.
I’ve been shouting to the rooftops about how my husband and I successfully transitioned our son, after nearly a year in a psychiatric hospital and 5 years in an institutionalized residential program to living in his own house with supports, 2 years before 22. In fact, he’s not even 22 yet – that happens in November.
This isn’t the story of a miracle. It’s the result of a group that consisted of 2 Human Service providers, the school system, DDS, and a Medical team from UMASS coming together to plan early and thoroughly. It’s about cross-agency collaboration that focused on the one individual that needed support. It’s about the commitment to be free of territorialism, to embrace the competencies each team member had to make this work.
Extraordinary, isn’t it?! Here’s the problem with this story: it never happens this way. Successful transitions, an adult system that is fully prepared with everything in place and 2 years of practice to work out the kinks… Never happens. It’s extraordinary. And it’s time for the extraordinary to become the ordinary.
I have connected over the years with many families, and I can tell you a lot of personal stories that will bring you to tears. I’ll just give you a couple of examples that vary greatly from my story and illustrate the vast spectrum of individual needs.
My friend and her husband have a son who graduated 5 years ago. He has a very high IQ which eliminates him from DDS eligibility, but he can’t even cross the street safely. The Mass Rehab Commission has found a couple of jobs for him and he has tried them, but failed miserably within weeks because he was not prepared with the skills to self-manage, understand how to respond to authority within the workplace, or multitask with deadlines. He has been sitting on his parent’s couch for 5 years, with no prospects. He is becoming more agitated and frustrated, and is posing a safety risk that is likely to end up in crisis without relief.
Another friend of mine has a child who had a vision of going to college. He went, and the first half of his freshman year he flunked out. Not because of his ability to get good grades. He wasn’t taught before leaving school the basic skills of accessing supports on campus. He wasn’t provided with time-management training, how to plan a schedule on his own, how to ask for help. So he stayed in the library every day because that was the only place he was comfortable going to.
Let me turn back for a moment to my own story. The reason my husband and I decided to propose an early transition was because we were closing in on 3 more years to age 22, and we knew that if we didn’t do something drastic, the trajectory he was on would place him in crisis and likely, long-term psychiatric hospitalization. Not because he was a monster, although that was basically what the placement thought; because no one thought he was capable of anything but daily restraint behind a desk in a padded corner, beading a string with blocks. Within weeks of his move, by the way, he was spending 70% of his days in the community doing volunteer work.
Here’s one last little fact about my son’s story, and if this doesn’t drive it home I don’t know what will. The cost of the program that failed to educate him for 5 years cost over $310,000 per year. The cost of the program we put into place is less than half. Put that together with the differences in his quality of life and the progress he has made just in one year, and there is no argument against mandating early planning, tighter collaboration, targeted transition policies and increased support for adult services.
In short, very quickly we need to close the gap between the spirit and the intent of the law, and the practical application of the law.
We can do that by:
1. Creating a blueprint that will ensure that every student gets to voice their vision and that those visions are the basis for early planning and preparation.
2. Providing the resources for educators to identify and prepare skills training that looks at academics as well as critical living skills according to their maximum potential.
3. Establishing practices that promote collaboration and early planning as the keys to successful futures.
We need to lay the groundwork for success, in the same way that my family laid the groundwork for Nicky. I mentioned that we haven’t even hit 22 yet – that happens this November. It has been a year and a half of unprecedented progress as well as pitfalls, but we are ready for 22. It will be a day just like any other. We are no longer afraid. Every family, every individual, has the right to that same feeling, no matter what age their child is.