Posts Tagged ‘Mark Sweet’
What is a Life Space Analysis?
Most of us spend our lives trying to squeeze in just one more email, appointment, phone call or…. We dream of the day we can have nothing to do. But is that really what we want?
James Chartrand recently encouraged Freelance Writers to read the book 168 hours: You have more time than you think (click here) by Laura Vanderkam. This book is to help “normal,” busy people look at their day in 15 minute segments and find more time for their goals and quality of life.
Twenty-five years ago in 1984, Dr. Lou Brown et al. of the University of Wisconsin-Madison developed The “Life Space Analysis” which has similar exercises to the 168 hours book. Is this a coincidence?
When people ask me, “What’s the purpose of the lives of people with severe disabilities?” (Like why should we let them live and use up our resources?) I have many responses (depending on my mood and who they are…) but sometimes I will answer: “People with autism and severe disabilities can take the complicated out of life. We can see life’s secrets because they help us think about basic truths we don’t usually think about.”
* Is it important to know how each person spends their day?
* Is it important to have a circle of friends and variety of people in our lives?
* Is it important that people get to go into the community and are not in one room for 24 hours, 365 days a year?
* Does a person with severe intellectual disabilities, autism and/or other developmental disabilities know the difference?
Life Space Analysis
The Life Space Analysis evaluation tool looks at the 24 hours in the life of a person with autism and/or disabilities:
* What was the person doing every 15-30 minutes?
* Who else was with them?
* Where did this take place?
* Does this schedule stay the same every day and weekend?
For more information on this topic read the transcript of a presentation by Dr. Brown (click here).
Over the years, this has been a useful evaluation tool for my son Aaron who has the label of autism and severe disabilities.
When I wanted to show exactly how my son Aaron’s day consists of mostly sitting on the couch, licking books, and repeating “You Okay?”, I’d get a consultant to conduct an ecological assessment using the Life Space Analysis. We’ve had some great consultants over the years: Alison Ford, Patrick Schwartz and Wade Hitzing, as well as some local folks.
When Aaron was school age, the “what, where, who” was pretty normal: a licensed teacher had the responsibility for planning Aaron’s day around a curriculum and his IEP goals. There was a process, accountability, best practice standards and a qualified team to make things work.
There was the normal rhythm of the school environment: bus rides, classes, specials like gym, art, music. There was the lunchroom, students in the halls, lockers, homeroom, weight training, therapy, and vocational job training around the school and in the community….
We had an excellent functional curriculum that looked at Aaron’s domains (click here). There were also after-school activities like basketball games, track and cross-country….
There were meaningful activities that filled the day, there were people who knew Aaron over a long time and had expectations that he grow and learn, and there were many rooms–spaces in the school, home, community. When Aaron was in school, he was on no medications.
Lou Brown used to say, “The more rooms, the more people in a person’s life–the more interesting that life will be.”
Last week when my husband Tom and I were taking the tours of possible adult day programs for Aaron. One of the things we instinctively looked for was the “who, what and where.” What were the number of rooms? The number of people? and, What was happening in each of these environments? All the components of the Life Space Analysis.
Our “Life Space Analysis”
We went through several places, but here is the last center we visited:
The woman giving our tour had worked with Aaron 10 years ago when he was in transition from High School. She was a trained teacher and job coach. It was a vocational job and Aaron had a great experience. We were thrilled this woman might be back in Aaron’s life. She would know what he was like before he started to lose his skills and regress. Maybe she would be our ticket to getting Aaron a day filled with meaningful activities and people who cared about him?
The staff in this large center was especially proud of their “sensory room” where four people were watching a large 3-D movie on a big screen.
There were other rooms: a fenced “outdoor area,” an “art room” where they made and sold ceramic ornaments. There was a “cooking room” with kitchen appliances.
There was a large multi-purpose activity room where they had a party the day before.
We were told every day 6 vans took people out into the community in small groups to swimming, the Y, the park, shopping…. That sounded pretty good.
Aaron in this Environment
Tom and I were trying to imagine what this environment would mean for our son Aaron, who is 35 and has the label of autism. What did our Life Space Analysis tell us?
For over an hour, we visited the different rooms in the center, but there were only staff people in all these areas. Which struck us as odd.
All the “clients” (8-10 people with disabilities) were clustered in each of the 4 day “classrooms.” So around 40 or so people were there that day, all in those 4 rooms and the rest of the building was basically empty.
We only went in one of the classes, but we saw adults making halloween pumpkins–just like every pre-school in the country. NOT age-appropriate.
Most people were just sitting at the table doing nothing. One girl was talking in such a high pitch voice, it hurt your ears. This was a concern.
What would Aaron’s day look like?
When we asked what Aaron’s day would look like, we found out only the most capable people, who could be semi-independent, were allowed to go the the art and outdoor areas because they needed little supervision.
People like Aaron would only go to the art room… once in a while. But they couldn’t make any promises.
If Aaron was interested in going swimming at the Y, he might get to do it one time a month. But they couldn’t make any promises.
He would get to go to the sensory room with his group, and they had some music instruments that might be interesting to Aaron, but many of the other people liked the quiet and watching movies on the big movie screen. So again, they couldn’t make any promises.
There were also two empty rooms at the center. They were thinking of developing them when they got the funds for new furniture: “Maybe a place for people to come and eat lunch, maybe a microwave where they could fix their own lunches.” But, no promises.
All the advances of the last 35 years, everything we have learned about people with autism and severe disabilities in special education programs and the research of best practice is not being used.
Aaron, unless some miracle happens, will continue to lose the precious skills we have all worked so hard to create.
The staff does not have the training or resources to be able to replicate the school programs Aaron and the other “clients” experienced. They could go and see these programs in action. Aaron’s High School teacher has repeatedly invited Aaron’s staff to visit and the school is only a couple miles away.
Tom and I both concluded this particular program was not going to work for Aaron.
We talked about just bringing Aaron home, me volunteering every day in the center (but they wouldn’t listen to me if I was there). So, what to do?
Dejectedly, we called our care coordinator to schedule another visit to yet another center… and then good news.
The care coordinator talked to the director of another program where Aaron would receive a one-on-one staff person for 3 days a week. A Reprieve. A bit of Hope.
If you are concerned about your child’s, or your own quality of life, look at the activities, people, and rooms in your lives. Maybe the ecological assessment, Life Space Analysis would help.
Speak Your Mind: Please leave your ideas in the comments.
Do you think the Life Space Analysis tool would be useful for people with autism and/or developmental disabilites?
Would it (or the 168 hours book) be useful for your own life?
Can you see the difference between having a life with too much to do, contrasted with a life with days and days of nothing to do?
Can we just sit and watch our children lose skills and deteriorate as adults?
Can we be satisfied with our own lives if we just sit and do nothing?
Keep Climbing: Onward and Upward
All my best,
Brown, L., Shiraga, B., York, J., Zanella, K. & Rogan, P. (1984). A Life Space Analysis Strategy for Students with Severe Intellectual Disabilities. L.Brown, M. Sweet, B. Shiraga, J. York, K. Zanella, P. Rogan & R. Loomis (Eds). Educational Programs for Students with Severe Handicaps, Vol XIV. Madison: MMSD.
And the difference is…
The Life Space Analysis for Aaron would show there is little for Aaron to do, few people to be with, no expectations that things could be better in his life and the life of people with severe disabilities who were in this center.