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!

Tara O'Leary and Joy Perry

The only thing I guess if you're going to write about Developmental Disabilities in NJ to write about is this Star Ledger article which came out yesterday.
http://www.nj.com/news/index.ssf/2010/04/caretaker_neglect_leads_to_dea.html

The whole thing just makes me depressed. You can do all the checks you want. Put all the systems in place you want, and they help, but the only thing that can hope to keep people safe is if there are people in your life who care about you. Even that might not be enough because you have to know the right questions to ask the right things to press about. I hope the newspaper continues to cover this, and I hope the case doesn't settle because it would be nice to know what happened? Right now it seems to be proceeding the way these horrible scandals of neglect usually do with people engaging in either aggressive postures or defensive ones and very little in between. As a professional caretaker I'm glad to be as far away from this as possible because everyone looks bad. So two very nice people die and do people care or is it just the spectacle, the political point scoring, the lawsuit.
As I sit here thinking what is nice is that two people with developmental disabilities can cause such an uproar. Wish they were alive to enjoy it like the rest of us voyeurs.

On another note sort of, this marketplace report talks about doctor morale and how low it is. All I can think is doctors are caretakers like the rest of us, and it can be wearying, but boy I wish I made their money. I wonder if its about their judgment being questioned? As a caretaker I wouldn't like to be sued, but I really don't like when I screw up and get questioned. We all need oversight and people to ask questions even doctors.
http://marketplace.publicradio.org/display/web/2010/04/19/pm-doctors-health-reform-questions-q/

100% Tax on people with DD

Governor Christie supports a 100% tax on the social security earnings of people with developmental disabilities. Now you'll be happy to know that it's not really a tax but a cost of care fee. Now if you're a person receiving services what choice do you have in services? Can you decide to opt out of services and be homeless? Nope. Can you choose where you want to live and with whom. Not for the most part you can't. Not to mention that you've been in the system for ages and now they just decide to change the rules. So Governor Christie doesn't support any new taxes, unless you have a developmental disability. In case you were wondering of course they also take 25% of people's work earnings as well. I'm not talking about payroll tax, I'm talking about cost of care again. So not only do people with DD pay payroll taxes on top of that they have to give 25% of their earnings back to the state. What an incentive to work. Of course most people with DD don't vote and that's somewhat our fault as well.

Now in the real world what not having money means that for those affected now their staff are going to have a bunch of angry people on their hands when they don't have money to purchase something. This enforced policy of poverty for people with DD adds to their stress their shorter life expectancy. Do you know that when people with DD receive a windfall from family or wherever it ends up being a nightmare not a blessing. Archaic social security rules don't let people save money beyond $2000. So if in anyway you wanted to stand on your own 2 feet you'd never be able to save up to do it. You can't save, invest, no cars, no houses in your own name. Thanks to Governor Christie though we'll never have to worry about going over $2000 again. Thanks Chris.

Learning to Crawl

I'm an old-timer in the field of human services. I was warned when I started out that I would forever be caught between the needs of the people I was supposed to help and the policies that would be expected to work under. In part I suppose I want this blog to air some of this frustration, but maybe also examine for myself whether this frustration of mine is validated.

I hope to bring some real examples to the table turn them over look where things go wrong. Maybe this is a plea for help. Much of the work we do is well-funded in the sense that billions of dollars go towards it, and yet it never is enough. Much of the work we do is never seen never thought of. People argue over caring for children and caring for their education, sometimes people even have feelings about the mentally ill. Yet the developmentally disabled sneak by never seen yet spending billions.

This week a middle aged man we support has been under much pressure (surely self-inflicted) to go and live with his family. Because he wants this so badly his family often tells him this will happen only for him this has to happen today. Surely he is tired of waiting. Things that can happen in a few days can drag on forever in the land of human services.

So as the people wanting to do right by him whom he trusts, mostly, how do we achieve this for him assuming his family is on board? Can a man in services move with his family? Sure if his guardian is on board. Can a man move with his family and continue to receive services which he probably will need? If so to what extent? Can he get a day program? Can he get staff to support all the activities he loves? If he lives with his brother and gets services does the apartment have to state licensed? Will the money that supports this man go with him? Will the agency be penalized for his leaving by lossing that funding. The rules aren't clear. Isn't there a state case manager to answer these questions?



Now I will tell you they are some smart people in this field who would know the answers to these questions, and they will say what you have to do is this or that or that or this and it might work it out, but it never gets any clearer.

A lot of people in our field will blame the state the division of developmental disabilities I'm not one of them. I think state government is filled with people who mean well and they're just unsure what to do as well. Caught between administrations and the scandals that happen when people get hurt it's hard to keep things clear. New bosses come and go. The budget is always short. Interest groups and parents are pushing not a job for me.

Still here's what it comes down to. This man wants what his heart wants. The staff who support him will have to deal with his ups and downs and it becomes personal for them. His heart aches will become theirs. And I'm either too incompetent or too scared or too something to get the job done that needs doing.