How to Provide for Community Integration

Supported employment is becoming the only program that will be available for people with intellectual disabilities after the age of 21.  This program is replacing the sheltered workshops and in so doing is eliminating a very important part of many people’s lives. Please do not misunderstand the issue that I am trying to convey – read the story before making comments.

While supported employment is also a needed and critical program, it does not best serve the needs of many of our loved ones – particularly those with a dual diagnosis of Intellectual disability and mental illness of mania, psychosis or schizophrenia.  The population with a dual diagnosis is in need of a program which provides a stable setting every day of the week for several hours.  They do not do well in settings in which they only have support a few hours a week and then are left to their own devices to manage the rest of their time.

As a parent of one of these people with a dual diagnosis, I know that the supported employment program will not be the program that serves his needs.  There are so many opportunities to include him in community activities in other programs but if all the funds are used in the supported employment programs, there will be nothing left for those who need another type of program to function optimally.

I was recently at a local meeting area which has several eateries which serve a commons.  I witnessed a young man who was being supported by a “coach” in his job.  He clearly had no interest in the job, was spinning around, looking at the ceiling, while the coach would take a tea bag, put it in his hand and then he would drop it in the correct bin.  The coach was attempting much hand-over-hand work with him but it really was her doing the work.  She then picked up the bin of dirty dishes; put it on the push cart and then they both pushed the cart out of the commons.

This scenario made me feel really sad.  If a person has only so much support to enable them to be out in the community and experience life, I would much rather have my son experiencing opportunities that he enjoys and which get him out with people in a more natural way.  These activities are going grocery shopping, going to the library, going to a restaurant, walking to the park, going to church – these are all normal activities which he greatly enjoys and interacts with all types of people.  These are activities which he needs a 1:1 support person to help him.

Other activities that my son greatly enjoys are meeting with people and being in groups.  This is what the “sheltered workshop” provides for him.  No, he doesn’t do much work there and it’s not training him for a future job but it does provide stability, group activities which he craves, interaction with people, and structure to his day.  These are all critical components to his care which will be gone if the sheltered workshop is closed.  The sheltered workshop is not a sweat shop nor is it slave labor.  He does learn skills and is capable of some work with 1:1 support at all times. He gets paid for the piece work that he is able to accomplish but that is definitely not his motivation since he does not understand the economics of having a job and supporting himself.

If my son was only allowed 5 hours a week of a support person, it would be much more beneficial to him to use that for activities which he enjoys and activities which he chooses rather than a type of “employment” that means nothing to him and is only there to make others feel good that they are accomplishing something.  This type of “employment” would be torture for my son.

My son and many like him are not going to be cured and will not be “getting better”.  Yes, they are able to learn but will always need a high level of support.  They are not people who can be taught a skill and then be sent off independently to do that skill.  Even when they know how to do something, they need the constant support to maintain focus and follow through.

People like my son are very much like people with Alzheimer’s disease.  A similar condition is dementia.  Dementia, which my son has, is a brain disorder which obstructs and diminishes cognitive performance such as memory, judgment, personality and social function.  We need to be realistic in the choices that we make with services.

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