Tuesday, July 16, 2013


If you read yesterday's post, you have probably figured out that the recently-hired PCA (personal care attendant) for Ashley has not worked out. I'm working with the agency I use to find someone else, but something that the agency representative said to me left me thinking - thinking about people with disabilities who require daily assistance, and how difficult it is to hire - and fire - personal care attendants. I'd like to know your thoughts on this particular issue...

During our discussion on the reasons Ashley's aide was not working out, the agency representative said, "We've never had any other complaints about her." Given the long list of issues I encountered with this particular aide and with some of the stories the aide shared with me (like how she would sleep at another client's home), at first I was surprised at that comment. But I quickly realized that I shouldn't be surprised. People with disabilities are so dependent on their aides and good aides are often very difficult to find, so to dismiss one, even a bad one, can be a very scary proposition for the person with a disability.

I sure that running through their minds are questions like, "What if I can't find another person to help me?", or "What will I do if it takes a long time to find someone new?". And then, "What is a new person isn't going to be any better?" So people with disabilities feel 'stuck' and as a result, stay 'stuck'. They come to accept that bad help is better than no help. Sub-standard care becomes the norm, and eventually their thoughts of good care, or even adequate care are tossed aside.

So many things in our disability support (and I use that term loosely) system just make my blood boil. This is yet another one of those things. What are your thoughts and experiences? Have you ever felt 'stuck' with bad assistance because you worry about anything else being available? What do you think could be changed to make this situation better?


Kate said...


I sent you an email a bit ago about this issue but maybe you didn't get it? It was from my gmail account. Anyway - why not consider hiring someone with a disability themselves? People with learning disabilities and Aspergers, etc, can be great aides, we are loyal and learning may take longer but once we have a routine down we will never stray from it. We are very conscientous workers also. (maybe check your spam for my old email, it goes in to much more detail.)

Ashley's Mom said...

Hi Kate, I did respond to your email, but I guess it didn't get through.

I would indeed consider an aide with Aspergers or learning disabilities. The routine nature of a person like that would be a huge help for my daughter, who herself likes to stick to a routine.

If you know of anyone who might be interested, please send them my way!