Monday, March 9, 2009

Where do we go from here?

One of the challenges of educating young adults with significant disabilities is knowing where to go next. As students approach the end of an entitlement to special education and move, as one parent put it, "from the cruise ship to the life raft" in terms of services, what precisely do we want to be sure we teach them? What are the most important things they need to master to have maximum function in post-school placements? This becomes even more difficult when you are thinking about an individual who is significantly physically involved with medical and communication disabilities.

Here are some of the things that seem most important to me:
  • communication especially yes/no/I don't know, choice making, direction of personal care, communicating in an emergency, an ability to "tell" if something happens that they need assistance with (mistreatment, etc), an ability to retell events in the day, asking for assistance, communicating about feelings, the ability to communicate medical problems (seizures, empty medication or feeding pump, etc)
  • leisure/social skills especially participation in the types of activities that are the mainstay of adult "day habs" such as table top games, cooking, music and movement/dancing, bowling, arts and crafts - if motor skills limit participation then the communication skills to direct those in the role of helping with the task
  • self care and well being such as feeding, hygiene, toileting and if motor skills limit participation then the awareness skills to know what needs to be done when and the communication skills to direct their care
  • quality of life including self knowledge about likes and dislikes, the ability to be flexible and deal with changes, the ability to connect with staff and peers and also to tolerate/work with non-preferred staff and peers, the ability to request favorite activities, people and interactions, the ability to tolerate changes in peers and staff (staff turn over)
So basically it all comes back to communication, at least in my mind. What do you think?


  1. I absolutely agree. If you can communicate you can do just about anything. In may neck of the prairie this can be especially challenging because in school the kids have access to and utilize a variety of AAC devices. In adult services these devices are either not available or, even worse, stuck on a shelf because adult services won't learn how to use them despite repeated offers of training from the schools. Our parents are becoming strong advocates, though, and hopefully by the time by current crop of teens makes 21 the situation will improve. Meanwhile we work just as hard on the nontech communication skills as their tech-based in the hopes that somebody will listen to them when they leave us.
    I would also say we work really hard on expanding the kids' horizons. I often find my guys very limited in their interests and/or "stuck" in preschool land. There is more to life than sitting in a recliner fiddling with a fidgit toy or stimming on your hands!! And there is more (and better IMO) entertainment out there than Barney or Dora Explorer. So we work to introduce more teen and adult subjects into their leisure activities--books, music, movies, TV programs, etc. Great post! :-) Alicia @

  2. I hadn't heard it put in those terms before - "Going from the cruise ship to the life raft" OUCH. Sobering reminder that my own adorable five year old will not always be little and adorable to the rest of the world.

    I think one of the fundamental drivers in improving services, quality of life, etc for thos with significnat disabilities is to place and earlier emphasis on communication. I've seen many parents obsess about their child's self help skills (toilet, dressing, eating) yet ignore the fact their child cannot *tell* them if they need to eat, etc. They wait until a child is older before attempting AAC - if at all. I think the parental/caregiver learning trajectory is too high at that point so many simply give up.

    There's not enough understanding of or support for AAC in the early intervention system as it exists today. Too much of a "wait and see what happens" or "s/he will catch up" mind set which is to the detriment of the learner. I see it in my own son's struggles. Had we had the support and understanding earlier, he might be a bit further along in his communication skills. And, frankly, I know that I am an exception rather than the rule in that I push for these things when many don't or won't.

  3. Communication is just so incredibly important for anyone entering the day hab system, not only the ability to express "yes/no" but the ability to advocate for oneself--whine if you have to! I currently work at a day hab with individuals who did not go through the school system but came out of a large institution, and communication is an issue that permeates every aspect of our day. I also work with plenty of adults who can hold a conversation or label an object, but are too afraid of authority to tell me when they need the bathroom.

    Sadly, staff working for day habilitation services don't have the same kind of specialized training as special needs teachers, and things just aren't the same as in the school system. Frequently individuals with a higher level of need are just left alone, or with the decrease in state funding for individuals, staff are hard pressed to do the bare minimum (health and safety) let alone run appropriate activities.

    At least in my state (Massachusetts) curriculum isn't even an issue for most day habs--it's not something DMR or Mass Health is overly concerned with, so many day habs don't work too hard on it, particularly for individuals who fall into the high level of need category.

    It is vitally important that individuals come into the adult system with the best communication skills possible--if they're able to communicate and advocate for themselves, the rest of the services and activities will follow along!

  4. Kate, What an important question you bring up. I think you are right on the money, as if you have the skills you mentioned, they are like learning how to learn they only bear more fruit.

    I would throw in, learning how to be a good friend as a key skill.

    Thanks for such a powerful question and post.




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