“Real Life”

In a recent thread in the LinkedIn group “Intellectual Disabilities Support Professionals” there has been a heated “discussion” regarding inclusion.  There is one very outspoken and prolific writer who regards anything but independent living supported by his agency as being “groomed for a systems lifestyle” to be “segregated, isolated and warehoused in institutions”  He calls himself an advocate but has disdain for anyone one who needs extra supports which may not be available in his type of community.  He refers to people who have higher support needs as not having “real lives” because they may live in a supportive community, an intermediate care facility, or group home.  He refuses to listen to others and abrasively dismisses any viewpoint other than his own and that of his agency.  Needless to say, his writings are tiresome, repetitive, derogatory, one-sided and void of understanding of the complexity of the “real” situation.

It’s really a shame because this person is passionate about his advocacy but is unable to see or appreciate alternatives and the fact that the population of people with intellectual disabilities is very heterogeneous.  The researchers are now beginning to realize that “one size does not fit all” and most of the research has focused on those who have a fairly good command of language complexities and those who only have a developmental disability not people with  intellectual disabilities.

“Operational definitions of self-determination have moved beyond simplistic versions that focused almost solely on choice making to take into account cultural differences and the fact that different people desire to have differing amounts of personal control over specific areas of life that they view as important.” ( Wehmeyer and Abery, 2013)  These authors also point out that future research needs to better account for the fact that self-determination “is exercised within the context of relationships (with people, organizations, systems, etc.) and that as a result, relationship factors need to be taken in to account.”

My son Thomas is 20 years old and lives in a supportive community which many would call an “institution”.  He calls it home.

Thomas is very self-determined making many choices which are important to him.  He lives in the community in which he grew up and enjoys events all around the region.  He is extremely good at planning what he wants to do and filling us all in on the local events around town.  He is a wealth of information.

 It’s absurd to think that Thomas doesn’t live a “real life”

The LinkedIn writer I spoke about says that people in institutions are groomed for systemic segregation, are warehoused and isolated never to be seen again – he certainly has no idea about “real life”

Below are photos from just a few of the choices that Thomas has made this summer

Thomas attends mass weekly at Blessed Sacrament Church in Seattle, Washington.  He was baptized in this church and has gone here his whole life.

Thomas at mass

Thomas at Blessed Sacrament

Thomas attended a Mariner’s game and had to get his photo take with the Dave Niehaus statue

Thomas at the Mariner's game with Dave Niehaus statue

Thomas met with two of his most favorite people – his friends Gretchen and Kelly

Thomas with Gretchen and Kelly

Thomas loves to go out to eat – he has chosen Kidd Valley, The Northgate Food Court,  Piroshky Piroshky, Taco del Mar and Panda Express as his most frequent places this summer

Thomas at Kidd Valley Eating at Northgate Mall - Piroshky Piroshky

He attended the “Sounds of Summer” concerts at University Village – something he does every summer.  He is well recognized there as he is the first one up to dance and chats with the band members.

Thomas at Eldridge Gravy and the Court SurpremeThomas at Hit Explosion

Thomas at University Village

Here are some video clips of parts of the concerts

He attended day camp at Woodland Park through the Seattle Parks – another annual favorite!

Daycamp 2014

iphone august 2 022

and he organized an “All Star” Pizza Party  at our house

Thomas clapping for All Stars Thomas at All Star Party

3 comments on ““Real Life”

  1. David Kassel says:

    I’m not surprised that the writer described in this post views “anything but independent living supported by his agency” as institutional and segregated.

    It’s interesting that so many vocal opponents of state-run congregate care facilities happen to be service providers who stand to gain financially from the closures of those supposedly segregated facilities. For too many of these opponents, the intellectually disabled are viewed as business opportunities. I’m particularly skeptical of anyone who says ‘only my agency’ is suitable for the care of a particular group of people.

    In the final analysis, it’s all about the money. Service providers, in particular, should not pass themselves off as advocates.

    Liked by 1 person

  2. Institutions (aka ICF/IDD) are comparatively expensive because people who live there require constant active treatment (defined as “Aggressive, consistent implementation of a 24-hour program of specialized and generic training, treatment, health services and related services.”) In all of the pictures and videos above it appears that this definition does not begin to apply to Thomas. He appears comfortable in the community, knows resources, has friends, plans his life according to his desires, etc. Are his Activities of daily living so deficient that he requires this intense levels of care? Must he be bathed, fed, clothed and toileted? Does he have a tracheotomy? Thomas appears to be a charming, intelligent, active 20 year old man. It seems a shame that he cannot experience the community he really loves just by walking out his door and strolling down to Panda Express for lunch without a state employee in tow like most of his peers, many who appear to be much more needy than he. I think most taxpayers would be happy to support Thomas in such a situation. If Ms. Felak demands that he receive active treatment even when it appears to be unnecessary, she should be able to pay for it.


    • This reply is very characteristic of those who are unaware of the support needs of people with ID and particularly those who may also have a mental illness. In your assessment, active treatment “appears to be unnecessary”. What criteria and assessments have you based this on?

      One can not tell by looking at a person what their support needs are and the reason that my son looks so able is that he has the supports he needs in place. And to answer the question of if Thomas is able to bath, dress, feed and toilet himself, the answer is no – but by looking at him you have no idea of his level of support needs. To judge his needs or others by what you see when they are supported and not aware of what other diagnoses shows an appalling ignorance of issues in working and living with people who have ID.

      I’m not sure what your experience (professional or personal) is with people who have profound disabilities but I’m assuming you are far removed from the reality of working with needed supports because your response is completely devoid of any hint knowledge in this area.


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