Friday, April 3, 2009

Facilitating Assistive Technology: Working with Families as Experts

A few weeks ago, I had a parent contact me, concerned about some options we were presenting for her child using assistive technology. She shared that she felt she was the expert on her child and that we were moving in the wrong direction.
Let me state that, #1: We would not have done anything until a meeting with the parent, and #2: we were looking at some options for accommodating curriculum at school, not new access, a new wheelchair, new routine, etc. She had heard round-robin through the assistant about our ideas and was emphatic that we not try them.
I keep going back to her comment that she was the expert on her child. I had positive and negative emotions on that one. I have been turning it around in my mind and have all kinds of thoughts on it, but today I attended a webinar with Roberta DePompei, Ph.D. from the Unversity of Akron in Akron, Ohio. Her presentation title was "Working with Familes after Traumatic Brain Injury: Families as Experts." (It will be available on the TBI Educator website in a few days if you would like to view and listen to it.)
I believe, as Roberta does, that there is a lot of valuable information that parents have to give. The traditional assumption is that professionals are the experts with technical resources and knowledge, but Dr. DePompei shares that there are TWO other experts - the student who lives in the diability and the people who live with the disability. She shares that when you are in doubt, consult and trust those living with the disability, in this case, traumatic brain injury - or after brain injury.
Now to my parent a few of weeks back...
I would hope that I present myself as a professional who values the input and significance of the student and the family. If not, I need to work on it because I do believe in it. A good assessment is made by a team of professionals and family members. When professionals disregard the information that parents and a student can contribute in decision making, diagnosis and assistive technology considerations, then the implementation can run into snags and waste everyone's time (and money).
I hope you will take Dr. DePompei's suggestion to heart in your practice and allow parents and students to give their perspectives and be recognized as the experts they truly are. They have a lot to contribute. Now I need to re-address these affirmations to the families I see and work with.
All the best to you!


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Susabelle said...

It is sometimes a fine line we walk, between providing what we think will work, and what the client/client's family thinks will work. Most of the time, it's a little bit of both. I wrote an article about something similar a few weeks ago, only it was about the redesign of a popular website. Sometimes the client doesn't know what they need until they are presented with a solution they didn't ask for. So our input as providers is important, we can see a bigger picture and give information on unknown needs. But then again, the client themselves (and/or their caregivers) also have a list of "needs" and "wants" that have to be considered.

Lon said...

It is a fine line. I know that I have a unique position and knowledge base to share. I think together, we as a team can find the best things for students - and we need to stop labels of who is an expert and who is not so we can all contribute our best towards the end goal.

narrator said...

As I always suggest in "Toolbelt Theory," we have to switch from a sense of being "prescribing professionals" to being guides and collaborators. Only when we recognise the inherent expertise in those we work with will we really be building independence.

- Ira Socol