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Busy vs. Bored: Life Space Analysis for People with Disabilities

Dr. Lou Brown

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.”

I think this is the beauty of the “Life Space Analysis.” It makes us see what a person with autism’s life actually looks like.  It gets to normalization (click here) and core values:

     *  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.

School Environments

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.”

Adult Environments

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?

Spaces-Rooms

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.

In summary:

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,

Mary

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.

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22 Responses to “Busy vs. Bored: Life Space Analysis for People with Disabilities”

  • Megan says:

    I think it is horrible that many people do not see to care for other people labeled with disabilities. People who ask what the purpose is obviously have not taken any time with someone labeled with a disability to get to know them and to see that they are just like everyone else and deserve the same treatment as everyone else.
    To have a child lose all of the skills that you as a parent has worked towards helping them gain does not help the child but only hurts them. It seems to me that programs should take more time to help people labeled with disabilities to keep their skills instead of losing them even if this means extra training for the workers. There should be environments that are helpful and meaningful to the person.

    • Mary E. Ulrich says:

      HI Megan,

      It is a horrible shame. Many people say we need to cut the government and let everything up to the churches and charities. They are also the ones who have no idea how desperate people with disabilities are and how the services provided by the government really are life or death services. We need the government now more than ever, since the churches and nonprofits are cutting back on helping.

  • Good internet site! I thoroughly enjoyed your content …very properly written.

  • obrazy says:

    That is some inspirational stuff. Never knew that opinions could be this varied. Thanks for all the enthusiasm to offer such helpful information here.

  • Hi there! I really love reading your blog today! Keep making great posts and I will come back every day to keep reading!

  • I couldn’t possibly watch my child lose skills and deteriorate without screaming. The first program sounds like such a sad waste of resources and disordered priorities. I hope you find one that works for Aaron (and you.)
    Alison Golden recently posted..Eleven Reasons To Love The Swedish God- IKEA

    • Mary E. Ulrich says:

      Thanks Alison. Yea, I scream a lot! Aaron survived the new program for a week now, and this is a short week, so we should be okay until December. Then I guess we’ll try and make it to Jan….

  • Mary: I thought this was a very interesting post and I can see why the Life Space Analysis is a helpful tool. I would imagine that you could probably gain some very helpful information from this analysis. I thought you raised some very good points here and am glad I found my way to your blog.

    • Mary E. Ulrich says:

      Welcome Sibyl. It’s a great tool for each of us. Glad to have you here. I always think the alternaview has interesting posts and a positive way of looking at the world.

  • Becke Davis says:

    The place you described sounds like a model home with no one living in it. What’s the point of building it if it’s not going to be used for the purpose intended? Very sad, and VERY frustrating! I hope the other place works out.

    • Mary E. Ulrich says:

      You do have a way with words. I never thought of that, but the model home (or showplace) is a perfect analogy.

  • Gary Jordon says:

    Almost forgot that one of my thoughts was that the only people who would enjoy being stuck in a place where they sit all day are Buddhist monks or Indian Samanas or those in an Ashram. But as decent as some of these beings are they are still stress out more than most people think. Maybe one of the empty rooms could by a place where these clients learn mediation either the sitting variety or the moving kind like Tai Chi.

    • Mary E. Ulrich says:

      Interesting idea. The difference might be the monks choose to just meditate. Many people with disabilities have no choice–in fact they are drugged to be quiet and passive.

      • That is a very sad description, but in many cases true. There is just not the money or capacity to fully engage and stimulate people with such disabilities. You hear some great stories but I don’t think they are the norm.

        • Mary E. Ulrich says:

          The “community based functional curriculum” helped a generation of school-age children get jobs when they left school. It would give those in adult services a clue to what our children CAN do and not waste their time. We need a strong mandate for adult services and trained professionals. There is the money and capacity ONLY if we transform the existing services and use the resources on meaningful, age-appropriate activities. Unfortunately, we do not have an adult mandate or a common will or vision. Thanks for your comment. Our only hope is to do it one person at a time.

  • Gary Jordon says:

    Hi Mary once again you raise some great points. I’ll raise several of my own. first every time I read one of your post I relize just how backwards the Lancaster/Palmdale(The whole Antelope valley)really is. I never heard the words functional curriculum used with regards to my situation. I like the concept of life analysis. I’ll have to learn more.

    I ironically enough found a very curious answer to the question of what might be the purpose for those that are severely developmentally delayed. In this video Kiesha Crowther “Little Grandmother” in Zurich November 2010 towards the end makes the shocking possibility that the souls of “star beings” come and hide in these conditions. I’ll let the whole video speak for itself a very interesting perspective.

    The facility you describe sounds like nothing more than a showpiece.I wouldn’t want to be a client or work (payed or unpayed) in such a dismally shallow place.

    You are however are fortunate in that your area has at least some variety of choices. Many places like the Antelope Valley don’t have much choice. With the school system being so darn sucky I can’t imagine the adults places feeling like a place I would want to spend my days in.

    What is truly sad I have heard that is poor a places as these can be it beats home.

    Well Time to hand over the speaking stick.

    • Mary E. Ulrich says:

      Thanks for your comments Gary. I’ve never heard of Kiesha Crowther but the “star beings” sounds very positive.

      I believe there are hidden “stars” in each of us. If we look, there are talents and the mysteries of life before our eyes.

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