I am writing to you because I have been doing a bit of observation in the community on how people with diverse abilities are being supported by their support workers.

Now I do understand that it can be a hard job, at times, but I feel that while the worker is supporting the person with disabilities, they should follow that person’s lead and not take over.

This is not a boss/slave relationship. If anything, the self-advocate should be the boss and have the right to make choices and change their minds, regardless of the types of support they need.

Not all people need or want a smother-mother as a type of support model; I see a lot of the smother-mother syndrome out in the community.

What do I mean? There is the type of support worker who does everything for the person; they don’t let them try, or have a chance to do something themselves – it’s like they are taking over.

There is no risk-taking allowed. Rather than supporting, the worker is directing two lives, instead of just their own.

indexThere is another type of support worker who never gives the person an opportunity to make choices – who never ask, who never take the time, who never give real options.

The support person is there to do precisely that – support! Not always lead – they should step into the background as it is appropriate, and be there when the person with a diverse ability expresses a need for help.

I am really concerned that persons with diverse abilities are not being allowed to be in their own lives; instead, they are being told and taken.

The worker and program seem to direct the activities too often, rather than the person. Isn’t your life based on the choices and control you have? Why should self-advocates or persons with diverse abilities be any different?

I feel that a lot of the support workers forget that they are working in adult services; if they want to support children with diverse abilities, maybe they should go work with children and families.

We need to make sure that support workers understand that they are working with their own peers and equals – they need to show respect and be mindful of the age of the person.

This includes how people are treated around personal care, and decision-making around privacy, and bedtimes, and meal times, to name just a few areas.

Thank you for your time, and your efforts.
Sincerely yours,

Shelly DeCoste, Self-Advocate

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