Friday, March 26, 2010

A New Day

Now, finally, we can begin to grow, mature.

For agencies to provide the best care there has to be a flow of communication between service giver and service recipient. There needs to be a process of feedback from the member base as to the success or failure of the care which is offered. This is not a process to be feared, instead it is to be encouraged. Staff want to do a good job, but getting little feedback or false feedback does little but entrench what is into what always will be. I remember really wanting, almost begging, someone with a disability to give me feedback, to tell me what he really wanted. I knew we were all missing the boat. But he just smiled a subservient smiled and assured me everything was all right.

But then, on reflection, it made sense to me. The very people being asked to give feedback are provided care, service they need, from the very people they are being asked to be critical about. We have all had the experience of having a bad teacher at school or a bad supervisor at work, we all feared speaking up because the target of our displeasure had power in our lives. We'd rather put up with bad treatment than risk getting worse treatment. Silence is a result of hierarchy and power imbalance.

Imagine this:

A man with a disability likes his staff but wishes some things could be different between them. He's unsure of how to speak up but knows that if he wants things to change he has too. He attends and abuse prevention class taught by two people he trusts, he learns about abuse and he learns about speaking up. He speaks to the two teachers and says, 'I like my staff but I want him to be a little nicer to me and I don't understand why he does some of the things he does and makes the decisions that he makes.' When asked if he wants help to discuss this, the individual with a disability thinks and then says 'yes'. After a chat with the agencies Program Director, she meets with the member and the member makes it clear that he likes the staff, that he doesn't want the staff punished, that what is happening is not abuse, that he just wants a few changes. The Director says that she will meet with his staff and the member says, 'I'd like to be at that meeting.'

The meeting happens. The member expresses his concerns to the staff who is surprised but receptive. They work through some things, each is misunderstanding the other a little bit. It only takes a bit of jigging for them both to feel listened to and in sync. The meeting ends with them agreeing to review how its going in a couple of weeks.

OK, get this. This happened this week at work.

I believe that this happened because there has been several years of work to make sure that people with disabilities feel safe. Our focus has been on abuse prevention and the development of advocacy skills amongst the members of Vita. As we did this work there was a vague hope that the sense of security and the welcoming of voice would make it possible for people to begin to discuss, not abuse, but the quality of their care. How we interact and treat each other. I wondered if we encourage voice it would mean that people would not longer need to use behaviour to communicate. We all know that problem behaviour is a means of communication - and perhaps the only viable one when one is at the bottom of a very large hierarchy.

We realized as we discussed the ramifications of what happened at Vita that we've been seeing signs of this coming within the organization. As we have increasingly involved the self advocates in the life of the organization there seemed to be an interesting shift. It's as if our members got in an elevator and pushed the up button. Their skills in using voice and speaking up meant that there has been a shrinking in hierarchy and with that an reshuffling of power.

And none of it has been scary. That staff, can you imagine how good he felt. Someone in his care trusted him enough to give him honest feedback without fear of punishment or reprisals. OK, hands up, how many readers would feel that they could do the same with their supervisor. Ah, wouldn't you like an environment of safety where your voice was welcomed.

Some of our journey towards becoming a safe agency has been difficult and we made many mistakes. But we carried on believing that the purpose of safety was more important that the frustration of error. And now, a man comes forward and says, 'let's talk, reasonably, about my care.'

He could only do that, he would only do that, if we had demonstrated that we actually did care about his care.


Heather said...

Minutes before reading your blog this morning I met with a representative from my care providing agency. My experience couldn't have been more different from that which you describe. I spoke up and asked for small changes, for better communication and for a named contact at their offices. They say I am being unreasonable and have made myself a complete nuisance by making these demands. That it is entirely possible that they may refuse to have me as a client in future if I continue to be obstructive and demanding. I have never, to my knowledge, been any of these things. Have never asked for changes before or questioned in any way their lack of communication or last-minute time changes.
The whole attitude was that this meeting was arranged reluctantly and not for my benefit. I was, however, treated to a run down of their staffing and financing problems. I don't want to change agency again as it makes my record look bad if I keep chopping and changing but there is no point discussing my care with them again if that is their attitude.
It will change one way or another eventually because I will not put up with it but how odd that you should write this today.
Perhaps I'll send them a copy.

Kristin said...

What an amazing group you work for/with at Vita.

@ OhWheely...I am so sorry you got that dismal response from your group.

Unknown said...

I am so excited and happy for the progress your organization is experiencing, Dave. And maybe you ought to use that momentum to call OhWheely...'s care provider and show them how things should be done.

Amanda said...

I understand the fear and that is why I never trust the surveys they do. Especially since the interview is carried out in the agency office.

It has taken me years to get that kind of trust. Why? Five years ago is a good example. I put up with everything including some amount of abuse from staff. There were two people I told the agency never to send to my house again.

One was a man who was not abusive but was so incompetent that I told the agency this man had a severe cognitive impairment that made him unsafe with me. His language comprehension was worse than most clients. If you told him you didn't want a sandwich he would seize upon the word sandwich and go make you one. He once gave me an overdose of a dangerous prescription drug when I asked for a Tylenol or something. I knew the tricks he used to hide his incomprehension because I grew up with a severe receptive language impairment and used all the same tricks. He also wandered off in the middle of shifts, went out for hours driving to a store across town if you asked him to go across the street, and was constantly bewildered and disoriented.

When I told about him and an equally incompetent other staff person, my case manager turned mean. He told me I hated this guy even though I said he was a nice guy. He told me the agency would never hire someone that incompetent. And he kept sending him back against my wishes. Same with the second guy (who in addition to incompetence was trying to convert me to his religion and would say things like "I help you out so in return you need to let me use your computer to print out my religious materials.").

Eventually I had an advocate help me make the phone calls. My case manager stopped answering his phone.

Eventually I got a letter in the mail from my case manager and his supervisor. It demanded I sign release forms so that they could find out the extent of my violent behavior (which didn't exist) and other accusations were made against me. He also said staff hated working with me and these two men were the only ones left because I was rude and disrespectful. Even though when I asked other staff they were confused and said they loved working with me. He accused me of having gone through lots of staff in my previous agency even though I had had one staff person for three whole years which is forever in this field.

And the worst part? If I didn't sign these releases he told me he would put me in residential care so staff would be safe from my violence. (I had no history of violence with staff there.)

A friend helped me file a complaint. I won. I was terrified but I won. I got a new case manager. And my next two case managers spent the next four and a half years trying to save my reputation from the terrible rumors started by my first case manager and his boss. (His boss hated me because I refused to let her order my own advocate out if my home. My advocate told her what I was thinking and she didn't like it. She even told my advocate "Amanda has no body language so no way can you translate what she is thinking." Because my advocate had correctly interpreted my actions as the actions of someone the supervisor was bullying into submissiveness.)

Anyway, I now have a very good reputation but it took years because I complained about two staff while silently enduring abuse from others. And even that was too much and made me a bad client.

And you know what? The first man? He had Alzheimer's. I was the only one who noticed. He had been trying to hide it in order to keep his job but it was too severe for him to be safe with clients.

But seriously. That's why I am still afraid to speak up about lesser issues. Because refusing two staff who endangered me, one of whom also had terrible boundary violations... that made me a terrible hostile rude violent client who needs to be in residential care for the safety of staff, and who had to spend over four years cleaning up my reputation.

Anonymous said...

The wheeliecrone says -
Well done, Vita! Well done, Dave! Oh, it is good to know that somewhere there is a place where people with disability are treated with respect!
Thank you!

moplans said...

Dave this is such an inspiring story. I wish there were more like this and fewer like the ones readers share here. Sadly more of mine are of the latter type.
I would so love to have my daughter in the care of Vita.

Jan said...

Dave I know of many organizations that could use some massive training to be able to do what you all have accomplished at Vita. I rhink the scary part of this is that these agencies that are described in these posts and many other agencies I know of do not even admit that they do not provide safe places where people are heard and listened to. I know of one agency that has a customer hot line that take complaints and concerns from families and self advocates and as OhWheely said they follow up with poor communication about agency pressures and problems of staffing etc and nothing is done and that is the best senerio

Anonymous said...

I find the organization my personal care assistant works for to be an enormous pain. They keep promising me a reassessment that doesn't come so I can get more hours and get people paid to do my laundry, something I can't do. They want to come in and have assessment visits inconveniently frequently, but nobody ever takes care of the thing *I* want. And at one point, because it took 2 weeks to be able to have one of the meetings they wanted, they cut off my services until the meeting happened. I can't tell you how pissed off I was. If you want a meeting with me, and you're only available a couple hours a day, it can take a while to work you in around my doctors and my classes. And frankly, my time with both of those is more important.

On the other hand, my care assistant is a wonderful, wonderful woman. She's very good at taking care of the things I want done in a way that satisfies my poor little OCD-hounded brain. We joke about our respective boyfriends and our neighbors (and my goof of a service dog), kvetch about the dummies she works for, and in it all, I feel like I have a relationship based on mutual respect.

Because of that air of respect, I can correct when she doesn't get things the way I want them. And because of that air of respect, she wants to make sure things are done, not to company specifications but to mine. I very much value the way we interact, to the point where I've stayed with the nuisance of a company because if I switch to another provider, I get a new care assistant. The benefits from that in terms of not dealing with the occasional nuisance are not worth the costs in the day-to-day excellence of my care assistant.