Lassaiz Faire Supports

I feel like I complain too much in this blog which no one reads. Certainly, there are so many good things that happen, yet in our field maybe any field there are those that will criticize and I take that stuff personally. I take it home and chew on it, mash it around till it sticks to my ribs and disturbs my sleep like an undigested big meal.
The critics who annoy me the most and I mean the most are the one I call the Lassiz Faire school of supports. In short they believe that paid should be few and when necessary do as little as before. Their thinking comes in response to the fact that paid staff and unpaid staff often do come in between people making connections with others. It also comes in response to the abuses that paid staff have often inflicted on people. It's all true.
Of course the reason that paid supports came into existence was that people with disabilities were often treated unkindly or worse, so a system evolved that removed them from their communities to protect them from those cruelties. These isolated institutions soon evolved into terrible places. In response the trend has been towards keeping people in their community and not keeping them isolated from the rest of the public. So Lassiiz Faire supporters take it to the extreme all paid staff are bad. Of course its also the school of the very lazy. Many of its supporters would leave people in unsafe conditions, and then would argue that was the person's choice.
My moderate position is that it's an imperfect world you have to the best you can, and there needs to be balance. Like so many discussions, though, a moderate position is rarely heard.
In my own agency I supervise some group homes and hate it. i see that living with other people not always people you're on the best of terms with doesn't do anyone any good. I'd like to see people able to live on their own, make their own decisions. In the meantime though I try to make their lives as pleasant as possible. It's an impossible situation one I have little control over, but one we should try to make the best of. The back biting holier than thou critics don't help though.

Leadership

There is some strain of thought in our business that says organizations should be formed the opposite way of the way they are now. Drawing on ideas from politics they suggest that rather than being top down pyramid organizations they should be turned upside down. So where supported individuals now receive services they would then dictate services. Direct Care staff would be second from the stop and management staff would respond to their concerns. What this suggests is that all those those folks would have the same concerns whereas now one person is at the top and they dictate the terms of the organization now there would be lots of bosses.

This comes in response to many, many poor leaders in the field who have not given people either what they needed or even worse lead to situation where people were horribly mistreated or even killed. There are still many poor leaders in our field most of them are uninspiring more worried about their accouterments rather than anything substantial or maintaining their power base rather trying to improve the lives of people. It's a sad state of affairs.

I really don't know what the answer is but there are various people trying different things. Some people advocate what they call participatory management. Sort of a blend of styles where people all get a say. I like that a lot, but I doubt it's the final word. My suggestion as with most things is to not get bogged down with ideology and always remain flexible and always listen.

Tired

10.50 is what the direct care staff make. Sometimes some of them tell me so and so of the residents they support aren't living up to their potential. I wonder?
Just this week a staff is stealing gas money from clients, a client had his annual IHP meeting habilitation meeting because we have to improve people. Originally the model for developmental disabilities was based on the idea that people were sick which they aren't necessarily they're just different. We the majority have decided that they are different rather than like us. More different than the eccentric Uncle. So different we have to segregate them from the rest of society. So at this meeting the job coach who hasn't been coaching this person decides she going to show up and criticize him for not working up to his potential. It takes a real brave person to pick on somebody with an IQ of 50. Worse the case manager who hates this resident went along and piled on. Nice. I wasn't there but either the people who were there were either stunned or more likely just afraid to rock the boat. This is a case where I want revenge. I won't get it.

Direct Care Pay

There's an article in the Courier News of Central Jersey from an executive director of The Union Arc (I'd link to it if I could). The current governor (Chuck Charles) is trying to limit executive pay of agencies that contract with the department of human services. A good idea certainly in response to the compensation of one particularly spectacular executive director. I don't know what other executive director make more than ours I'm sure but ours is no where close to what the limits are (and sometimes I think you get what you pay for but I'm just being mean now.) The Union Arc executive he rightly goes on to point out that agencies have a brain drain to the Division of Developmental Disabilities because the compensation is better there (not really a great place to work though.) He also rightly points out that direct care workers have not had a raise in a number of years now and most make around $10/hr or so which in New Jersey is chicken feed. Frankly, I don't know how people make it, although at least in our agency some people do do a lot of overtime which helps out (some agencies control their budgets by limiting OT we are not one of them.) Of course here's the rub the state doesn't value direct care and neither do their agencies. I will bet in the Union Arc the people furthest from direct care make the most money. I will bet those same people never take the training for working with folks because direct care again is not respected. It's assumed that anyone can do it with little training or experience, and while I often think too much is made of the need for training (after its just people talking to other people) there are exercises which help people think through situations that will arise. And they will arise, so sometimes its nice to have a little training or a lot. Somebody said that look a budget and you can see where people values lie too bad agencies aren't transparent about how the money is spent.

Direct Care

It’s a beautiful thing when someone is good at direct care. If you have a chance to observe it’s like watching ballet or a sporting event where the player always knows where the ball is going to be. A good direct care worker has the same instincts. They know all the right things to say, are always one step ahead, they have the coffee ready in the morning, the cigarettes ready in the afternoon, dinner cooking, the meds on time, a schedule for the showers in mind, the phone on the left ear for the person calling out and the right ear for the person asking if they can go out, the left eye on the person whose had the bad day and the right eye smiling on the person who had the good day. It’s not surprising that many of our best direct care workers are also mothers and fathers as many of the same skills translate to our work. I have stood in awe as staff whirled around me in the morning at a group home; the universe in perfect order, every need anticipated before it was articulated. I saw the same watching a manger work with a client at the hospital recently. This delicate dance where each movement was anticipated before it happened. The client leading her the perfect partner swaying to the rhythm of a beat only she could hear. We have many staff like that rarely heard from because things don’t go wrong on their shifts; they are for the length of their shift in perfect step.

There is a beauty too in watching a manger manipulate their schedule, knowing their personnel, watching the overtime, knowing the needs of their residents…although this often occurs in a fingernail biting session of anxiety as fatigue sets in and the shift looms near. The shift (or shifts) now takes on the appearance of certain doom, a haunting shadow certain to ruin one’s very life! The tragedy! The disappointment! All is not right with the universe the schedule does not work! Calls! More Calls! Batten down the hatches! Wait! Who do we call? Is there anyone left? And then the waiting the minutes like hours; the ticking like thunder even on the digital! The day now a complete ruin, sugar is not as sweet, joy has left the building and is certain to never call again. How could life do this to me!!!

And then a person calls and they say yes! We collapse in sweet relief another crisis averted and a certain guilt that we had not more to give. We have so little to offer in return, so to all the managers who make the calls and the magic people who say yes (and I keep thinking this Bud’s for you) Thank you! Thank you! Thank You!

Sad Day Bad Decisions

Our agency my agency invested money in upgrading their office, and the only question I have is how does that improve the lives of people with developmental disabilities. So what are the choices bricks and mortar do no not have to be done to perform that administrative functions that need to be done. Other agencies such as Neighbours do these same functions with much less overhead. It is so sad to me that an agency I have devoted so much time to...so what do I do quit? Quit on the people who look to me for support? Make a stand on principle that hurts the people who I'm trying to take the stand for? So often human service organizations have made poor decisions about how to use money. Here we go again.
Among agencies the real current dispute beyond the fact that institutions are horrible is the argument about group living arrangements such as group homes are any better? To not live with who you want or where you want is rob someone of something very basic. People can get hurt by those they live with in any situation but to not have chosen that situation is so much worse. Now in the field there are many consultants who make a pretty penny coming around to talk about the work they do. Most of them chug in and chug out and they don't have to take any responsibility for what they advocate. Those agencies that those agencies that have managed to convert their group homes into a place where their choice of home, job and relationship are more strongly enabled (I think a lot of agencies and their staff want this but only a few agencies, Hope House, Jeff Strul's agency, Greater Chesapeake Arc and that one up in New York have done it successfully) did through fortitude, desire and sacrifice. They also had to increase revenues but they also gave up some things and they also maybe did at a time when it might have been a little more flexible with the rules, but they pushed through. My agency though its not number one priority it's a competing priority something that would be nice not the end of the world. Because most of the folks don't see how folks suffer, how their dreams fail a little bit at a time, because in public it's all hidden behind we are family bs. I'll never forget one person we supported who was called an angel by the administrative staff a nice gesture but they wanted to make her an angel and she wasn't and honestly she was a more interesting person for not being an angel and not trying to live up to what people wanted of her.

In residential we go all the time the job never stops you take home with you in the form of your cell phone your memories, your thoughts it becomes part of your life and maybe because we answer all those calls take care of all the problems while others are sleeping we make okay for them to look the other way. Maybe a lot of life is that way.

New Support Coordinator System

Now I want to be fair and say first that the support coordinator wasn't there, but I was down in Vineland Developmental Center being interviewed by someone and her team about providing supports for her. I'm going on about volunteer jobs and community involvement and they stop me and they ask they ask I still can't get over this can she do shredding at our agency. Now she may love shredding, but that's the problem with person centered planning right there it's no better than the information provided and the imagination used and apparently this team couldn't imagine anything beyond shredding. Now I'm not the greatest be all whatever nor is my agency but things like that make me just want to weep. That someone could be stuck in an institution for 50 years and they couldn't come up with anything more than she likes shredding. Great!