Susan's Blog

Sunday, December 22, 2013

My Notes from the Massachusetts Higher Ed Inclusion Task Force 11/13

In November I was appointed to the Higher Eduction Task Force on Inclusion of Students with Intellectual/Developmental Disabilities. I represented the Community College Consortium for Autism and Intellectual Disabilities as well as being an autism advocate, mom, and author. The following are my impressions of the hearings:

I sat on the Higher Ed Task Force hearings wearing at least two hats. The first, my oldest and most comfortable, is as the mother of Nat, my 24 year-old son with fairly intense autism. The second hat I wear is as the Director of Outreach for the Community College Consortium for Autism and Intellectual Disabilities (CCCAID). I have been immersed in Nat’s education for 21 years – since his diagnosis at 3 years old. My heavy involvement with Nat’s needs led me to become a voice for autism issues, and to write two books on the subject.

For the last two years my interests have turned, naturally, to autism adulthood. I listened to the hearing testimonies with great interest because the programs discussed served autistic and/or developmentally delayed students in transition to young adulthood.  Although my son would be considered “lower-functioning,” (lower IQ) than the students at the hearings, I felt a great resonance with the struggles and stories of the students there, and a great empathy for their situations and goals.

I will admit that I went into the hearings a little skeptical of inclusion as an effective practice in higher education. This skepticism was born of a longterm dissatisfaction with how inclusion is often done in public schools across the country: that is, as little more than a pretty theory that ends up with not much actual curriculum learned. Too often merely “blending in” is the goal. In the disability parent community, we like to say that our kids are fully included as a mark of pride, but often the ugly truth is that their special needs are being sacrificed in favor of blending in.

My experience with the Community College Consortium has also strengthened my viewpoint that targeted, rather than inclusive academic, programs are frequently more desirable for people with ID and ASD. In our Consortium, community colleges offer programs on their campuses in which the curriculum is specialized so that students with disabilities can learn the maximum. Not only is there adapted curriculum; the curriculum itself is pragmatic in nature. Consortium students get vocational training as well as independent living and sometimes travel training. One could easily argue that first and foremost, students need to be able to get a job with their post-secondary education, and to live as independently as possible. When you consider the severe budget cuts in adult services, it seems almost irresponsible not to offer practical curricula. It has been my belief that students like my son would not benefit as much from humanities and other academics. And indeed, my son has had years of vocational and independent living training, and although he is a Priority 1 with the DDS, he now works three days a week at a Shaw’s and contributes some of his income to his own job coaching and transportation.

What I heard at the hearings dispelled many of my concerns. I learned of students who took classes in drama and went on to work or act in theater. Another student told of how she learned how to write even though she used to hate it. Still others learned to travel on public transportation independently. All of these are tremendously important skills. Other students, from the UMass Institute for Concurrent Enrollment (ICE) programs went on to become students for credit at one of the colleges. A student from the POST program in Carver, at Bridgewater State said, “I was able to be myself in a way I never was in HS.” I don’t need to be perfect. I have helped others learn more about Asperger’s. I’m here to be more independent.” That took my breath away. And finally, I learned of substantial peer mentoring at these programs, which is the gold standard of student support. Students – both with disabilities and mentors who were without disabilities – testified how much they had learned from the other. That kind of lesson is of immeasurable benefit to society.

I became so enchanted with what I heard that I found myself wishing that there were programs like these for post-22 adults, too. There is so little of value that happens in the DayHabs, which is where these adults often go. If there could be programs for guys like my 24-year-old autistic son, where their education could continue, what a benefit — not just to them but for society. Think about it: if they are trained to work, they will be that much less dependent on public funding in the future. You invest in post-secondary education for adults with ASD and ID, and you end up with less needy people in the system.

In the end, I learned from the hearings something I thought I had learned a long time ago: that one size does not fit all, and some intellectually disabled students grow and learn in a four-year-college academic setting precisely because such inclusion is what they want and need. Others benefit from more separate and targeted programs but that are still on campuses (usually community college campuses).  The common denominator here is that all students need the opportunity to discover what sort of post-secondary educational experience works for them. As a result of these hearings, it is clear to me that we need to have an even broader spectrum of offerings to take into account all the varying needs of our learners with intellectual disabilities and autism.

1 comment

Hi Susan – we are nearing the post 22 phase and it is my hope we can find or broaden specialized continuing education learning for post secondary consideration for our ASD/ID son. We should work toward the notion that he and others can be life long learners and that providing those opportunities could not only enrich but lead to more productive lives.

— added by Paula on Friday, December 27, 2013 at 11:31 pm