A Support Worker’s Perspective

My name is Becky, and I am a Personal Support Worker (PSW) and Developmental Service Worker (DSW). I have been working in the field for approximately 15 years. I work in both home care settings and residential group home settings. I have been asked to talk about what, if anything, I have observed with some of the issues and difficulties that adults with disabilities may encounter and how I believe we, as caregivers, can have an impact. I will present the two most common challenges I have seen.

PSW helping in kitchen

I personally think that the biggest challenge for adults with disabilities is for caregivers and society to see them as adults. Many are not treated or talked to based on their chronological age but their perceived developmental age. Caregivers may struggle to see these individuals as an adult and this can even include their family members. In fact, these individuals may have more potential than has been expected and may not need as much help as we have routinely given.

In group home settings, staff do not encourage the individual to expand their horizons or spread their wings. This may be due to staff not empathizing about the individual’s wants or the staffing and budget just does not allow it. On the flip side, the individual may not want to learn new tasks because they feel they cannot do it as their caregivers have always done everything for them.

As support workers, we must take into consideration both developmental age and chronological age.

  • In a non-verbal client I have, I watch carefully for eye contact. If I have asked a question, where are the eyes going? Are they communicating by where the eyes are landing?
  • We must be careful of the terms we use in our conversations. Are we talking down to them because of seeing them as children? Do we call them certain terms of endearment that are not appropriate? Do we use “cutsie” words that we would use on a three year old?
  • What is our tone of voice? Do we sound like we are speaking to a young child or a friend our age?
  • We can certainly speak with respect and still use vocabulary or topics that are of interest to their development level.

We also can observe for when they understand. Sometimes I’ve seen supports and caregivers who assume they need to explain things at great length and don’t see that the adult with a disability has actually grasped what they have said long ago.

There are many times I have seen individuals have so much potential that has not been tapped into. It is so rewarding for everyone to see increases in ability, independence and accomplishments that had not been expected.

In one instance, a client was being taken by the support to their day program. Over time, with many baby steps, this person successfully transitioned to being able to take Para Transpo on their own. Baby step after baby step this incredible goal was reached! First, the support traveled with them. It was discovered that music calmed them, so they traveled with their music playing. Then, the support followed Para in the car in case the client needed them. Finally, they were successful to independently take Para!

These goals and steps require everyone to be on board – the support workers and the parents.

Other examples I have seen are finding a special cup/water bottle that allows a client to drink independently, or a specialized spoon that allows them to eat independently – a little messy perhaps but a feeling of incredible success and independence!

"... being able to encourage"

All this shows the importance as a support of knowing those we work with, communicating well with them and their families and loved ones, and being able to encourage. We make sure they know we won’t push and that we will make sure they are safe.

The second challenge I see is the adult individual with a disability worries about their future. Who will take care of them if one or both of their caregivers get sick or pass away? Will there be a group home or other placement for them to go to? Will they have access to support from PSW'S or social workers if they decide to move out on their own? Is there access to accessible housing? Can they afford to move out on their own or even to pay to live in a group home?

As a PSW/DSW, we cannot fix these concerns, but we will deal with the adult who is experiencing fear, panic, concern, anger, sadness and worry.

When a client repeatedly speaks of these things, I know they are thinking about them frequently and it is very stressful for them. Rather than deflecting their emotions or trying to get them to dismiss the issue as unimportant right now, I listen, acknowledging them as real concerns. Knowing the family’s process and plans is very helpful as I can then remind them that “Mom and Dad” are at a certain place in the process. Everyone wants to have their situation and emotions taken seriously. Having a disability does not disqualify the reality of the stress.

There are many challenges as an adult with a disability, but as a support worker, we can respectfully go beyond focusing only on the weaknesses, intentionally looking for strengths and drawing out potential that will have a lasting impact on lives.

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