Susan Senator

A few days ago I learned about an organization that is working to revolutionize the offerings to people with autism, post high school. CCCAID stands for Community College Consortium for Autism and Intellectual Disabilities, and CCCAID is all about fostering meaningful post-secondary experience for those on the mild to moderate end of The Spectrum. A CCCAID program is built at a community college, and with these federal dollars, offers academic, lifeskill, vocational, and most other real-world training needed for living and working independently or semi-independently after high school. In short, there is very little like it across the country, but the pockets where these programs exist have been phenomenally successful.

I’ve often talked about DayHabs and Day Programs in terms of my/Nat’s experience with them. A year ago we were shopping around, and it was hard to like what we found. It was hard even to understand what we were looking for. By now I know that a DayHab (Day Habilitation) is the traditional setting for people with moderate to severe disabilities to spend their M0ndays – Fridays, 9-3. DayHabs are Medicaid-funded and are built on a therapeutic model, meaning that the goal is to rehabilitate a client to whatever degree possible. Various therapies are offered throughout the day (I use the passive voice here intentionally, because most DayHabs feel precisely like that: passive).  At one of the DayHabs we checked out for Nat, he would be busy with table top activities and relaxation and socializing (read: watching movies) most of his day.

Needless to say, Nat does not need any further help with coloring, stringing beads, sitting, or watching movies. He passed those activities with flying colors long ago.  We chose a different DayHab that is far more innovative, but you have to know where to look.  You have to have energy like mine, and good luck with that! 😉

DayHabs largely do not offer vocational occupation or training, because it is believed that vocational training is not akin to therapy, so these dollars cannot be spent that way. DayHabs do sometimes provide employment within the setting, called Sheltered Workshops, where clients usually are involved in some kind of assembly work. There is mostly no going out into the community to volunteer or work or learn. Going out into the community is more about van trips. The DayHab is mostly a program that maintains its clients, rather than helping them grow.

Day Programs are different. They are work programs. They use Medicaid waiver money, meaning that the state gets half the money from Medicaid and matches the other half with state money. This makes the funding tight state-by-state. But Day Programs are the way that the clients get to work in the community. Day Program dollars pay for the job coach and the transportation, without which many of our guys can’t succeed.  Therefore the number of guys like Nat who work at all is pretty low.

So I am all about the Day Program, because that is where a guy like Nat can have a meaningful day: employment. But Day Programs cost a lot. And they can’t provide independent living training, self-advocacy, remediation, or academics. That’s why I went with CCCAID to Washington to meet with various key members of the House, Senate, and White House to spread the word about CCCAID in the hope of being able to offer far more autistic people a life way beyond DayHab. Why should I be saying, “Nat probably would not go to college.” Why not? Or why couldn’t he at least benefit from some of the employment training and learning available at community colleges? “This is a fairness issue,” Representative Kevin McCarthy (Majority Whip) said to our group when he met with us. And indeed it is. CCCAID, championed by Senator Tom Harkin, is hoping to increase its reach, utilizing Medicaid dollars and TPSID grants (started by the legendary late Senator Ted Kennedy).

And why should CCCAID be given this opportunity? Because they are a proven program.

Taft College in California was the first CCCAID program, begun in 1995, when that community college got rid of its football team and was then able to open dorms to students with developmental disabilities. These students received two years of training in advocacy, independent living, hands-on vocational training. They formed positive relationships with their employers and upon graduation, had jobs with places like Frito-Lay. Taft tracked their graduates for ten years and found that a decade later 89% were still employed and 91% were living independently.

Mild to moderate autism. Ten years later. Still employed. Not in need of the DayHab structure. Utilizing natural supports from a proven relationship with an employer (job coaches largely faded back). Living independently or semi-independently. This program works.

With the large numbers of the IDEA and post-IDEA generation aging out of the schools, educated and enlightened and ready for life in the world, shouldn’t we be trying to make sure that they are indeed ready for life in the world? If two more years of education could provide life-readiness, shouldn’t programs like CCCAID fosters be an option for ALL people on The Spectrum and with Intellectual Disabilities?