There's An Elephant In The Room!

There sure is and it's awful big. We're going to talk about it here.

One of the many things identified by the ongoing NY Times series on support to people with developmental disabilities is the dual system of the provision of these supports - namely the state of New York as one and the private, nonprofit or voluntary sector as the other.

Before we go too far though let's talk about this terminology. Two discussions are important - nonprofit and voluntary. Many times the general public and sometimes people in positions of great power think that nonprofit means a poor, underfunded, always on the brink kind of organization. There is a general perception that nonprofits should not run a surplus or make a "profit".  Sometimes people are surprised to find out that nonprofit status is really about "members" of the corporation, in many cases the Board of Directors, not making a profit. Instead all of the profits are to be reinvested back into the nonprofit entity. Some of that reinvestment is the development of "reserves" that help the nonprofit navigate in difficult times or that allow programs that run deficits to continue operations. These are important choices that have to be made by well informed Board members with the support of qualified and honest managers.

State Operated vs. Voluntary Operated
So why do we hear this terminology - State Operated and Voluntary Operated? Well this is the dual system of supports established many years ago in New York State. For many years New York State was the provider of services and supports for people with developmental disabilities. These services and supports were put in place over many years and were a mandated responsibility of government. Thus institutional care as a model - basically the need to house and take care of large numbers of people. But there was another model even before what's referred to as deinstitutionalization. That was the community support and rehabilitation model developed and practiced by many nonprofit organizations in the '30's, '40's and 50's and into the '60's. As deinstitutionalization began to occur, the state needed major assistance and turned to what was dubbed the voluntary sector - voluntary because these organizations were not mandated to provide these services and supports. They chose to provide them. I contend that there is a great difference between doing something because you have to and doing something because you choose to. I believe that basic difference is why there is a cultural divide between state operated and voluntary operated systems of support. It doesn't mean one group of people is better then the other but it does mean there are real differences and you can't pretend to be one vs the other.

Now the hard part that few want to talk about. When the real push for deinstitutionalization occurred, the state had an existing workforce of thousands of unionized employees. At the same time the state was looking to the private sector of voluntary, nonprofits to assist and most of these were non union entities. No surprise, a dual system of funding and reimbursement emerged. The agency responsible (under the law) for providing the supports, the Office for People With Developmental Disabilities, was now responsible for funding, developing and auditing/regulating the programs it ran and contracted for. They have tried valiantly over the years to figure out ways to do it - regional offices, set up a separate division, hire outside auditors and on and on. The reality is that it hasn't worked for a couple of reasons.

First and foremost, the system is just too damn big and diverse. Supports for 125,000 plus people provided by 13 or so regional offices operating their own programs and contracts for similar supports with 700 plus nonprofits. In addition there continues to be approval of more, smaller, less sophisticated nonprofits even today. A system like that is just too big and hard to manage.

Secondly, you can't have two workforces with different rates of pay and operating under minimally, two sets of rules. Just won't work and the proof is in the eating of the pudding.

So what are the possible solutions? For one, the state should be trying to resolve the workforce issue. From my perspective this isn't an anti or pro labor issue. It's a reality that needs to be dealt with, probably over time. The state should look at redeploying its workforce through attrition to other state agencies. That would be a start. I think there should be a commitment made by the state to get out of all but the most necessary of services and supports of people with developmental disabilities. The state should concentrate on figuring out how to manage all of the data it already collects as well as developing meaningful performance data that recognizes geographical, size and programmatic differences by support providers. There may be a temptation to turn the overseer, licensing function over to another state agency or entity. That would in my judgement be a mistake. The current Office for People With Developmental Disabilities does have an understanding of the constituency and the providers that has tremendous value. It just needs to be focused and supported properly.

There's the elephant. The big nut to crack as it were - State operated vs voluntary operated, a state workforce and a voluntary workforce, oversight vs operation. These are the discussions that have to begin taking place before any real and meaningful change can occur.

Another Story From The NY Times

The NY Times has printed another story on supports and services provided to people with developmental disabilities. The most recent story is interesting to me for a couple of reasons. First, I think it is trying to get at and identify what the systemic issues may be relative to poor performance by providers and the state's response to those issues. It seems to me that one of the problems is that the reporters either don't understand how the quality assurance and survey system does work within the Office for People With Developmental Disabilities or the people providing them with information don't know how it works and therefore are providing them with not so good information. Frankly it could be either one of these situations or a combination. It sounds like the non profit agency they are reporting on in this article had serious problems that needed to be dealt with differently but it's hard to say why things went the way they are reported to have gone. From previous discussions we also know that inferences are the wrong way to draw conclusions. The second reason the story is interesting is that there is at least some recognition in this article that the vast majority of non profits provide good services. The article has the following comment in it: "To be sure, many of the non profit organizations in New York provide exemplary care, using the state's generous reimbursement rates to devise and operate excellent programs."

Between this article and the last, there has been push back to the Times on its reporting by a number of people and entities, including comments on this blog. A group of provider organizations did send correspondence to the Times questioning the paper's method of drawing conclusions about an entire field. It wasn't the best response because it didn't get at the heart of the poor reporting issues, but at least it was something. Here is that correspondence:

The recent New York Times article, “Aiding Disabled, Nonprofits Rake
in State Money,” is misleading and unfair to the vast majority of
non-profit service providers who work to ensure that they offer
quality supports, services and programs for people with developmental
disabilities.

While the article focuses on one agency, the headline and the story by
reporter Russ Buettner use the terms nonprofits and nonprofit
providers when referring to alleged abuses of the system by a very
few, thus leaving the impression that this is a widespread problem.
The nonprofit provider agencies we represent have adopted a code of
ethics and practices to ensure that funds are used to provide the best
possible supports for people with disabilities and their families.  We
have worked in collaboration with government agencies and provide
annual fiscal reports of our operations to the appropriate State
agencies. There are also annual program surveys to ensure that we meet
all regulations and guidelines as required by local, state and federal
agencies.  We strongly reject any accusation that providers are simply
interested in “lining their pockets” by billing as much as possible.
As a group, our organizations place staff as our most valued resource,
with more than 75 percent of our operating budgets devoted to the
salaries and benefits of the thousands of people who work daily to
provide opportunities for people with disabilities to have full and
active lives in their communities. Community habilitation is an
example of a program currently in place that allows people to live
with support in the community or to remain in their family’s home for
as long as possible at a fraction of the cost of alternatives.
The vast majority of provider agencies do not maintain large surpluses
or pay excessive salaries to their executives. If a provider is able
to generate a surplus in one program, it is typically used to offset
losses incurred by the many underfunded programs our agencies provide.
The salaries of the executives are readily available to the government
agencies, and agencies are required to follow IRS guidelines (Internal
revenue Code 53.4958). Most agencies also adhere to the guidelines put
forward by the Commission on Quality Care’s “Report on Executive
Compensation”. Additionally, we are working with OPWDD to establish
executive compensation guidelines.   These steps are a result of our
organizations’ strong and involved Boards of Directors who ensure the
fiscal integrity of the agencies in order to provide the highest
quality programs and supports possible.

If the practices of one or even a few organizations appear
inappropriate, then the facts should be investigated.  We like other
New Yorkers, support immediate corrective actions when agencies are
found to be abusing the system.  OPWDD contracts with over 600
provider agencies. The vast majority of them operate in a highly
ethical manner. They daily help to support over 100,000 New Yorkers
with developmental disabilities.  OPWDD receives extensive detailed
cost reports itemizing both income and expenses every year from the
providers.  If they have any information that indicates that providers
have unethical billing practices they should investigate immediately
and not wait for the New York Times to call. However, a headline
condemning a community of providers based on the experience of one
provider is irresponsible at best.  There needs to be a balance in
reporting so that the readers are not left to believe all providers
operate in a questionable manor.

For decades, our organizations have provided needed services.  We have
worked with OPWDD and other agencies to ensure we provide quality
programs for people with disabilities. We are committed to this
process and will continue to support the providers and the State’s
efforts to improve the system.

Alliance of Long Island Agencies
       Seth Stein, Esq., Executive Director

Cerebral Palsy Associations of New York State
       Susan Constantino, President & CEO

Interagency Council of Developmental Disabilities Agencies, Inc.
       Peter Pierri , Executive Director

New York Association of Emerging & Multicultural Providers, Inc
Yvette Watts, Executive Director

NYSARC, Inc.
       Marc Brandt, Executive Director


Perhaps the Governor's office and the Office for People With Developmental Disabilities are also learning a hard lesson about being a part of condemning the non profit sector, even if by silence and acceptance of what I and others perceive as broad brush attacks. It should also be noted that the state's generous reimbursement rates have received substantial reductions over the past 12 months.

But back to the article at hand. There are numerous cases that I'm familiar with where the Office for People With Developmental Disabilities made sure that serious corrective action was taken by non profit boards when systems failed. There are numerous cases where non profits themselves have taken actions when systems or people have failed. There are executives and managers who have been terminated and removed from their positions. There is tremendous oversight and regulation that people are responding to everyday. There are fiscal and program audits by the Office for People With Developmental Disabilities. There are corporate compliance programs and training of staff and Board members - and, the Office for People with Developmental Disabilities has all of this information. So what is the problem?

Clearly the system is too big and here's the biggest nut to crack - you probably can't be an overseer, licenser and a provider at the same time. That's the big one and that's what probably needs to be talked about. More to come........

Lives Worth Living - Celebrating Martin Luther King, Jr. Day

I'm honored to have been asked to introduce and lead a discussion on the film 'Lives Worth Living' on January 16, 2012 as part of a Martin Luther King, Jr. Celebration in Watkins Glen, NY. The event is being sponsored by The Glen Theatre and The Arc of Schuyler. The film chronicles the disability rights movement and draws parallels between it and the civil rights movement led by Dr. King. Recently the film was aired on PBS as part of the 'Independent Lens' series.

Here is a link to the flyer for the event: Lives Worth Living Flyer

As I said, I'm honored to have been asked to participate. The Glen Theatre and The Arc are to be commended for bringing this free event to the general public and for commemorating the memory of Dr. King through education about the disability rights movement, mobilization and non-violent civil disobedience.

The Sad Story of Aaron Shehu

I didn't know Aaron Shehu personally but I've known people like him. People struggling with their own perception and understanding of themselves. Aaron was a young man (17) with a developmental disability and a hard life. Over the years Aaron got himself into trouble mainly due to behavioral issues at school and in his home. In 2010 he was referred to a non public school for troubled youth. At some point, the school knew they were probably in over their head and Aaron was removed. He tried to return to the school and in the process allegedly stole a few vehicles. He was apprehended by a NYS Trooper and ended up in a small Town Court and remanded to the county jail. He remained in that setting for 6 months while the wheels of justice slowly, very slowly turned. On the morning of Nov. 27, 2010 after taunting by other inmates, Aaron Shehu tied a sheet around his neck and hung himself from his cell door.

All of this is reported in an article in the Chronicle Express in Penn Yan, NY that you can read here. The article is about an investigation and finding by the NYS Commission of Corrections that the county jail acted properly in the case of Aaron Shehu. Maybe, maybe not. Aaron's parents are suing the Sheriff, jail administrators, a local hospital, a Doctor and others. In the meantime, Aaron is dead and it doesn't seem many spoke up for him in those last 6 months of his life. A system of support for Aaron, support for his family and even support for the jail personnel failed miserably it seems.

This is what happens when community supports are either non existent or people don't know how to access them. This is what happens when good intentioned people reduce services. This is what happens when people are devalued by our legal system. There are serious questions in my mind about the role of state agencies (Office for People with Developmental Disabilities, State Education Department, Department of Health to name a few) as well as county and community agencies in this story. I hope lots of people think this one through. Read the article and ponder how many things went wrong and how many Aarons you may know.

More Thoughts on Recent News Stories

The reaction to my post last week after the NY Times' article on supports for people with developmental disabilities has been interesting. For the most part comments, notes and conversations have been positive. Some people have been thankful that someone is speaking up about the issues raised in the article. Not everything has been positive however. I've had some people tell me that I should stop writing about any of these issues, that all I'm doing is drawing attention to the issue and this will cause the articles and coverage to continue. What comes through in these conversations is fear. Fear of the press, fear of elected officials fear of state agencies and fear of people in power generally. It's sad. So I don't think I'll be quiet.

I made some errors in the past week myself while researching the article and found out it is easy to do. That's why verification and good fact finding is so necessary and important. We all need to be careful.

My biggest gripe with the article continues to be assumptions, inferences and comparing Community Habilitation to home care and Direct Support Professionals to home care aides. Apples and oranges as they say and good research will bear that out. These are different services. The article also tries to compare Direct Support Professionals to home care aides and other 'caregivers'. This is really inaccurate. Direct Support Professionals are not caregivers or at least they shouldn't be and that is not what the state is paying for. They are trainers, teachers, counselors, behavior support staff and much more. The last thing people with developmental disabilities want is to be taken care of in the community. The people I know want their independence and want assistance and support to make that happen.

A friend of mine who's the parent of children with developmental disabilities said the following to me: "I take offense at the dismissive tones the reporter uses to describe community habilitation, as if this is an unworthy service that exists solely for its profit potential. It is undeniably true that many New Yorkers are living with their families or in independent settings only because of supports like this. It is difficult, specialized work, and the article's implication that anyone can do it (why not just pay a relative to teach people to brush their teeth?) is an insult. Again, unsaid but left for inference, is that these poor, disabled people would just be better off if the state took them off to a nice, clean facility and cut out the middleman seeking to profit from their problems."

On the difficult issue of executive compensation, here's another quote from my friend: "If my bank president or business leader makes an error in judgement, the enterprise loses money, customers, market share, etc. If the executive director of an agency that provides supports to my daughters makes an error in judgement, programs that keep my daughters safe, involved in their communities and advancing towards ever greater independence could go away. The stakes are high. The pressures are almost unimaginable. Nonprofit executives face all the responsibilities of the leaders of any enterprise, plus the knowledge that the course of lives of individuals and families absolutely dependent on their judgement is at stake. It takes special people to take on that challenge. I can't think of a single one of the human service agency executives I have known who was in it for the money."

The Rest of The Story - NY Times Reporting

The New York Times has published another story in a series it is doing on supports and services to people with developmental disabilities in New York State. The series is trying to get at the expenditures of federal and state Medicaid dollars for these supports and services and is also exposing abuse and neglect in this system of support. Those who know me understand that I have a great deal of respect for the first amendment and specifically for the important role that journalists and journalism play in the pursuit of truth and action against injustice. I also respect the 'Gray Lady' as one of the oldest and most respected newspapers and news sources in the world. Great reporters have uncovered and reported on so many important stories over the years. I also hate to hear critics of the media going on and on about the media's hidden agenda and unbalanced reporting. Having said all of this, I really am disappointed in the Times' reporting on the issue mentioned above. The issues of fiscal waste and abuse of any group of people are critically important and deserve the best reporting and editorial review.

Again, I've worked for many years in this field and admit my biases. I've seen the good and the bad in terms of fiscal policy, government oversight, and yes, abuse and neglect. The gist of the latest story is that non-profit agencies supporting people with developmental disabilities are receiving much more money then they need in a particular program, that they are rolling in money and that executive directors and administrators of these agencies are making hundreds of thousands of dollars off of the system while paying the people who do the actual hands on work poverty wages. Sounds awful and also feeds on the environment of corrupt CEO's, bankers and Wall St. fat cats that is sweeping the country. And the problem is, there is some truth to what's being said in the article. But that's it - some truth, because there is always an outlier or two who can make a great headline. 

We've heard about 'the ladder of inference' before and this article is a great example of some truths being the basis for creating beliefs and then people thinking about acting on those beliefs. Two agencies are discussed in the article and the situations in both are abhorrent as presented. What the article does however is to then move to statements about large numbers of agencies, large numbers of non-profits doing the same thing with absolutely no factual basis presented. In one case, an executive director is reported as making a $400,000 annual salary while paying direct support professionals somewhere between $9-15 per hour, generating a surplus, etc. Then there's a quote by the current Commissioner of the state agency responsible for funding and overseeing these programs where she references these non-profits 'lining their pockets'. So we get to the some truth aspect.

It's easy to get tax data and confirm the salary of this one executive director. Based on the article, reported size of the agency, etc. it seems excessive and wrong. By the way, there are other executive directors who make large six figure salaries. They should be judged on specific criteria such as budget size, geographical location, years of service, expertise and various financial ratios. There is plenty of data to help get that info and come to some legitimate conclusions and the Times should be able to be a leader in that discussion.

There's more to the rest of the story that good investigative reporting would uncover. New York State has methods for determining fees and reimbursement rates. Providers have pointed out for years the problems with these methods including reimbursement levels for direct support employees. New York State also has systems in place to review, audit and act on and punish providers who are out of line both fiscally and relative to the treatment or mistreatment of individuals. This system obviously has flaws and government should be held accountable. Here's more - while some programs run surpluses, others run defecits. Non-profits have no choice but to use surplus revenues to operate deficit programs or to end them. More rest of the story - some people operate programs better then others, some grow for the sake of growth while others grow to provide choice to families and the people they support. More rest of the story - there is data that indicates how feverishly many executive managers have advocated for increasing wages for direct support staff over many years.

The other agency referenced in the article supposedly was making money hand over fist that caused sleepless nights for the former Board President. The rest of the story - again a little research shows that the agency was decertified and basically put out of business earlier this year due to, in part, the executive director stealing a couple of hundred thousand dollars. The Board President should have had sleepless nights relative to the seeming lack of oversight by the Board of Directors. Poor financial reporting was clearly identified it seems. Again, one example of what seems to have been a poorly operated organization. This does not represent an entire field or the hundreds of well informed and dedicated volunteers who serve on non-profit Boards. It's shameful to make that leap.

The latest article ends with a reference to how the Commissioner is moving from a fee for service method of funding to a managed care model. Interesting that the reporters in this series haven't identified the potential problems with this model. A little research shows lots of administrative support and overhead abuse potential in this model.

So here's what the Times' series has pointed out - Institutional care is bad, smaller community support is bad, non-profits are bad, government is bad, too much money is spent/spend less, abuse is rampant, etc, etc., etc. Big on problem identification but very weak on alternatives or solutions.

What is the lesson from all of this? There are bad apples. There are also good ones. Throw out the bad and nurture the good. Oh and let the NY Post do the sensational reporting.

The Importance of Words and Language

Acronyms Be Gone!
I really believe words are important. Words are part of how we communicate with each other and we all know how difficult communication is sometimes. So words along with gestures and other tools help us all communicate with each other better. So why is it then that so many people insist on using acronyms instead of words? We all see it.....almost to the point where it becomes a game or a contest. Who can make a word acronym out of the newest concept that someone is promoting? The excuse is always that it will help people remember this very important new thing or idea. In most cases that's just BS and it should be confronted that way. Here's the issue - Words are Important. They communicate ideas. Sometimes they communicate good ideas and sometimes bad ideas but communicate they do.

So why else do people insist on using acronyms? Some of it's laziness - it's easier to say or write DOT instead of Department of Transportation. Some of it's power. The old haves and have nots issue. You have the information (know what acronyms stand for) and therefore you have the power and authority. We've all sat in meetings where someone is using acronyms that we don't understand. Most of the time we sit there in silence and pretend we know what is being said. Finally someone says something about the alphabet soup and for a moment we're relieved that we're not the only one who doesn't understand half of what's being talked about. More people have to speak up about the use of letters versus words in my opinion.

Recently, the Office for People with Developmental Disabilities (OPWDD to those in the know) in New York State with the help of stakeholders, came up with a new acronym to describe an organization model that's being looked at - here it is - DISCO. Now isn't that cute. It's letters that make a word that everyone can remember - at least everyone from the 70's. And people can laugh about it, joke about it, make dance references and on and on. So now everyone in that field of work is referring to DISCOs and discussing if their agency will become a DISCO.

So what is this thing or what does the acronym stand for? It's a Developmental Disability Individual Support and Care Coordination Organization. Now just so we're straight, those words are important. They identify a specific group of people, they identify the importance of individualized support, care and coordination and they describe that this is an organizational model. It is hard to say all of those words, but they are important, not the letters or the acronym.

Here's another one that really gets me - DSPs. That stands for a Direct Support Professional but who would know when you use letters only. Direct Support Professionals do awesome work supporting people with disabilities, the elderly and others in community settings. Again, the words say much more then the letters. There are many more of these examples but you get the idea. Use words. They mean something.

Words That Hurt or Devalue People
There are plenty of these but I'm going to point out some that are again related to my own experiences working with and supporting people with disabilities. I really hate to hear people talking about caring for people. It implies that people are totally dependent. Sometimes people are dependent on others to help, assist or support them but most people I've met want to be able to do things for themselves even if it's hard. I also hate to hear people talking about "the people we serve". It sounds almost religious or like some sort of charitable quilt work. My choice for those words is always to talk about "the people we support". I know some will say it's just some attempt at political correctness but I think it's more important than that. I think it's about dignity and respect.

How about this - people who work with people who need support many times struggle with what to call these people. Its run the gamut from clients to participants to consumers and then some. Nobody's comfortable with any of it so we've come up with things like "the folks" and "the guys". None of it's very good and in many cases it's demeaning and devaluing. The easiest thing is to refer to people as people either by name or as the people I/we support.

Yep language and words - they're really important - not just for conveying messages but for changing attitudes and presenting images in people's minds. Use them and think about them.

Utah Phillips Tribute - Caffe Lena Saratoga Springs, NY

Recently I attended a tribute tour in memory of Utah Phillips put on and organized by his son Duncan and a number of musicians from Utah. The session took place at the historic Caffe Lena in Saratoga Springs, NY. I knew of Utah from my involvement in the Catholic Worker. Met him a number of times on his travels east. He was a prolific writer and storyteller. His experiences helped him draw pictures and images that he put to music and words. Mostly about people and events but always about fairness and justice. Anyway it was a great show. It may help motivate me to keep Utah's spirit and message alive through song. You can get more information about Utah, his life and music at The Long Memory website.

"In a modern day, mass-marketing economy, a revolutionary song is any song that you choose to sing yourself - welcome to the revolution"

-Utah Phillips-

Fracking - A Hot Topic!

Hydraulic Fracturing (a process of drilling for natural gas) is a huge issue across the country, in NY State and in the Finger Lakes Region. The process utilizes large amounts of chemically treated water that is then extracted as contaminated waste water, etc., etc. - so you see the potential problems that present themselves.

Last night I attended a Town Hall meeting in Penn Yan, NY hosted by State Senator Tom O'Mara and Assemblyman Phil Palmesano. Both men represent the geographical area surrounding the Village of Penn Yan which includes Yates County, the Finger Lakes and the Southern Tier of NY. Obviously, people in the Finger Lakes region that is known for its beautiful and bountiful lakes, wineries, tourism and agriculture, are concerned about gas drilling and the hydro fracking process.

I know both Sen. O'Mara and Assemblyman Palmesano. They're both what I would call good men - honest, concerned and trying to represent the interests of the areas they represent. As always, there are competing interests when it comes to issues around resource development, the environment, jobs, lifestyles and economic development. Sen. O'Mara has proposed and Palmesano supports a 4000' buffer zone from hydro fracking around the Finger Lakes. Many in the audience argued that gas companies can drill 4000' horizontally and therefore they propose that the buffer be 4000' from the watershed.  That kind of sets the stage for last nights meeting.

Well the representatives from Albany got an earful and then some from a crowd of 75 to 100 people. As with many meetings of this nature there was a lot of emotion, shouting out of opinions, facts and feelings. The meeting wasn't organized or led very well. O'Mara tried to make sure everyone had a chance to weigh in but some people dominated the discussion. Both men made it clear that they aren't experts in the area of engineering or chemical processing and so, they're waiting for the NYS Department of Environmental Conservation (DEC) to gather comments from the public, the industry and outside experts and to issue regulations on the process. The audience wasn't satisfied with that response. They wanted more. I don't know if it was the way the question was asked or if it was the way it was attempted to be answered but no one seemed satisfied at the end of the session.

The question really boils down to this: Let's assume the DEC report is in and it doesn't have appropriate protections built in to protect the watershed and the environment of the Finger Lakes - what will you, as a legislator, do to ensure those protections? That's it basically. People understand the regulatory review process aspect of all of this. What they want to know is at the end of the regulatory review process, what are you as legislators willing and prepared to do to protect the environment around the Finger Lakes? It was hard to get to that point last night and I don't know why.

I'm not an expert either, but I do know that this watershed is critically important to hundreds of thousands  of people in this and other regions of the state and I do know that gas companies have not been forthright about their operations in the past. I know that the trade off between an energy solution and a natural resource like water is very serious business.

The opponents of hydro fracking have done a good job of making their opinions known. They are having an impact on elected officials. But the bottom line is that what DEC and Gov. Andrew Cuomo do after the comment period will be critical and frankly, O'Mara's and Palmesano's steps at that point will be easier to measure.

Job Loses At Non-Profits

We all know how difficult the economy is right now. New York State as every other state is struggling. There's something that strikes me however in terms of news and information about job losses in the not for profit sector. Just about everywhere you go you hear about the importance of economic development. All kinds of jobs need to be developed, created, or saved both in the private and public sector. It's big news when a Governor holds the line with public employee unions and jobs are potentially lost and/or ultimately saved. Big news when private companies or local municipalities announce 5 or 500 layoffs.

Well here's where it gets interesting. As I've stated before, I worked for many years in the non-profit or social sector as an administrator of an organization supporting people with developmental disabilities. There are 400+ programs like this across New York State. The reason there are so many is because NYS provides support to over 120,000 people with developmental disabilities in community settings across a wide geographic area. The organization I worked for was part of a larger statewide organization that has representation in just about every county across the state. Obviously the size of the organizations differ based on geographical areas served, budgets and supports, so the number of employees varies as well. The number of employees at each organization range from small (200) to large (over 1000) as well.

These are really important jobs, performed by very talented and dedicated people who chose to provide these supports to people with all ranges of needs. Budget cuts have impacted these organizations in a pretty sustained way over the past 12 to 15 months. At the same time, state government and the media have raised issues about the quality of supports and care that people receive. Obviously, it's always important to raise issues about quality of care but the real problem is, you can't have it both ways as NYS government seems to want it - cut costs but increase regulation and oversight to get at important quality issues. These two things just don't add up.

So how does all of this tie in with economic development and job growth or job loses? As I said, this sector has sustained substantial budget cuts over the past 12 to 15 months, being told like everyone else to do more with less. As a result, there have been major reorganizations of supports and services and in many cases pretty serious layoffs of employees or reductions in hours or a combination of both. But who knows about this? Who is hearing about it? More specifically, who is even keeping track of the data of the layoffs in this sector of the workforce? It would seem important that this information be tracked from a point in time to show elected officials, legislative leaders, funding sources, contractors and other parties that this sector and the people it supports, a vulnerable population, is being impacted significantly. Without that type of action it seems as though people are just waiting to get kicked in the rear end and at the same time saying, "here,  do it again". Data like this is important for a couple of reasons. It helps people in the organizations themselves get a feel for what others have done and perhaps duplicate as necessary. It helps underscore the potential damage to a fragile system and support advocacy efforts. Just as an example, if there are 400 agencies providing supports and each laid off 10 people, that's 4000 jobs. Again, this is only an example without clear data but I think it shows the potential impact of having this type of information.

Leadership....

This is really a continuing discussion about leadership, aspects of it and the qualities of what I would call great leaders. In reality, I think we all know the difference between blah leaders and great leaders. We may not be able to put our finger on it exactly but we tend to know it when we see it. As an example, we've all seen the leader who has the title but who we seldom see leading. Sometimes that person has gotten the job as leader by default, by design or by theatrics. Theatrics is an interesting concept. An example is spending time learning the names and important little tidbits about all the people you're supposed to be accountable to. By doing this well, the important aspects of your leadership role (content if you will) many times takes a back seat. Another aspect of theatrics that works well in very large organizations are presentations. These, done well, can be very effective tools. But enough on mediocre or blah leaders.

There are certain qualities that great leaders really must have. Some of these we know almost immediately, others are a bit more elusive:

Communication - It goes without saying that great leaders are great communicators. Not just in the spoken and written word but in the more subtle areas of body language, social networking, everything really. But communication is much deeper. It's empathy, counsel, storytelling and above all listening and processing. Storytelling is something you'll find in every great leader. Most have a wealth of historical knowledge that needs to be shared over and over. Not in a boring (there he/she goes again) fashion but with humor, charm and content that's meaningful and that makes people think. And the listening skills referenced are much more important in communicating than most people think. It includes reading other people's body language and taking cues. Skills that always need development but practice does make perfect.

Technology - Great leaders need to embrace it. Too often, people in leadership positions from my generation make statements like "I'm too old for this", "You can't teach an old dog new tricks", "I let the young folks take care of that", or "How do you turn this on". Many times it's said jokingly and in a self deprecating manner but ultimately it sends a bad message - This too will pass and I'm not that interested anyway. In the current environment, like it or not, great leaders have to reach out constantly and stay abreast of new technology. It's a requirement. If not, you will slowly fade away and do your organization a great deal of harm. Which brings us to the next principle.

Surrond Yourself With Young People - Again, absolutely necessary in today's environment. This is where you're going to get your current knowledge and information. This is where you're going to get your own enthusiasm. This is the audience for your story telling. This is where the challenge to ideas and concepts will come from. I'm certainly not saying this is easy. There's tremendous give and take necessary in this area but the positives are overwhelming.

Finally, at least for this segment, great leaders do lead. They aren't sheep who just follow the latest trend or their colleagues. Great leaders challenge the status quo (with caution if necessary). Great leaders don't ignore issues that need to be confronted. They measure options, bring people together and truly work at building consensus.

Obviously, more to come.

Cuomo Says Finances Collapsing

In comments made to reporters today outside of presentations being made by the regional economic development councils, Governor Andrew Cuomo indicated that the state's finances are much worse then expected.

“We are looking at a number of deficit reduction initiatives now that we could undertake, because there’s no doubt that the numbers are collapsing and the numbers are collapsing quickly. We haven’t come up with a plan of action yet but we have options … I’ll be discussing those options with the legislative leaders, formally, informally certainly, and depending on what the discussions bear, the possibility of a special session.”


Deficit reduction initiatives? Interesting - made outside the start of presentations where regions of the state are competing for $200 million. And, as usual, upstate/downstate rivalries for school and health aid have begun and will continue. But what will these deficit reduction initiatives be? You can bet people with little representation will be impacted. Let's hope that vulnerable populations - people with disabilities, the sick and the weak, kids in need will be spared more cuts. Many people aren't aware that programs supporting people with disabilities have already taken 15% cuts over the past year. That's major and people are struggling to figure out how to make more adjustments and reductions. 


Some people are saying that the 'millionaire's tax' will happen. That it's inevitable and something has to be done to increase revenue - which brings us to drilling for natural gas and the process known as hydrofracking. Fracking has been a controversial issue in the Finger Lakes and the Southern Tier of NY and a regulatory review by the Department of Environmental Conservation was extended. Ahh but some are suggesting now that the aforementioned tax and the revenue that would be generated by gas drilling could be the answers to the states financial difficulty. Now for the other revenue enhancing item that hangs out there - Casinos. Don't be surprised to hear of an increased effort to allow Casinos in NY. Not an issue of right or wrong, just the facts that are out there. You see, there are endless ways to force things to happen that otherwise would take years of debate when you're going broke.


So hold on to your hats, wallets and keys to the car as elected officials convince us of what's best for us and in the process determine who gets what. Advocacy has never seen a more important time.

Jeremy Wallace Trio - Great Music!

In the interest of full disclosure, Jeremy Wallace is my nephew. Having said that, I and lots of other people not related to Jeremy, think he and the other members of the trio are great musicians. Jeremy writes his own stuff but occasionally performs other music. He is a blues singer and story teller. Give him a listen sometime. You can find him on Facebook.

Writers Block.....?

The Gadfly has had a bit of writer’s block it seems. Not due to lack of news or issues that are out there floating around. There’s certainly lots going on – perhaps too much – and maybe that’s even the reason for the block. Too much to write about and just not enough time - could that be it? Here’s a short list of the things crossing the Gadfly’s mind:

•        Bernie Fine and the pass ESPN seems to be getting on not reporting on audiotapes for eight years as well as not reporting to the police.
•        An article in the Rochester paper about the closing of Monroe Developmental Center and the potential impact on the existing waiting list in residential placements for people with developmental disabilities.
•         Continuing stories and news about the Occupy Movement. Pepper Spray, pepper spray.
•        Holiday shopping gone wild. People battling each other over electronics and consumer goods.
•        Rita Corbin, Catholic Worker and artist, killed in a car crash with her 17-year-old grandson.
•        Family, grandfatherhood, baby pictures and general happiness.
•        The economy, the environment, continued discussion on anonymity, leadership and organizational behavior.
•        Jeremy Wallace, a great musician, the blues, rock and roll, spirituality.

There that feels better and I think I may have shaken that block. We’ll see.

Another Perspective To Criticisms About Supports To People With Developmental Disabilities In NYS

A while ago there was an editorial in the Albany Times Union that was critical of organizations providing support to people with developmental disabilities based on an article in the New York Times. Both the editorial and the Times made some assumptions based on information that had been researched through a review of statistics and incidents. There has mainly been silence relative to these articles from the field of people who provide these supports. Recently there was a response in the form of an electronic comment to the editorial. I am respecting the anonymity of the author because it was posted that way. I have posted previously about anonymity and have my opinions on it as stated. I do think this is an important comment from someone who obviously understands the current state of affairs. Here it is:

"We live in a world of self-generating beliefs that remain largely untested. “Climbing the ladder of inference” is the process by which we establish meaning of something based a few observations without testing the accuracy of our beliefs or assumptions. This appears to have happen with the NY Times article and then the Times Union editorial. The Times Union editorial concludes the NY State system is an “overpriced disgrace”. Really? First, looking closely at where the $ are spent, one discovers that the non-profit agencies cost- averages fall within the mid-range of costs of like services nationally. The cost outliners are the state developmental centers. Two, the NY Times article says “And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes and institutions”. Again,what are the facts. OPWDD regulations require training in abuse and neglect (a standardized curriculum) typically 3 days in length, Medication Administration (a standardized curriculum) typically 4-5 days in length, first aid and CPR (a standardized curriculum, fire safety, and on and on. In addition, many non-profits train their employees in a variety of other topics or tap in the on-line training program called the College of Direct Support. And in terms of the “lack of oversight”, all the regulations (which there are many – just check out the following website:http://www.opwdd.ny.gov/regs/index.jsp) need to be followed in order to maintain OPWDD certification. Non-profits are audited throughout the year (yes, throughout the year) against these requirements. The NY Times suggests that OPWDD should have sent out “choking” warnings.

They did, twice, once in 1999 and then in 2007. Check out this site:
http://www.opwdd.ny.gov/hp_guidance_documents.jsp. In terms of incident management, there is a guidance document of over 330 pages, which is the bible of incident management, check out this site:http://www.opwdd.ny.gov/wt/manuals/part624/incident_management.jsp.
In terms of financial oversight, each non-profit has to submit to OPWDD a 150+page consolidated fiscal report, which has very tight guidelines in terms of allowable costs and where funds can be spent.

In terms of quality and scope, NY State is 2nd to none. The OPWDD collective system serves close to 100,000 people, many in 24 hour care and many over a life time. Visit any non-profit agency in your community and you will hear inspirational stories. Many of them are about how people with developmental disabilities are supported in the last stages of life, in their homes with friends and family. Also, check out OPWDD’s report on National Core Indicators (focused on quality care). NY State gets high marks on nearly every indicator. These results are generated from interviews with family and individuals receiving services.

In such a large complex system, are there breakdowns, slippage,human error, and at times crimes – you bet. Can we find any human system absent of these unfortunate aspects? Can we improve, of course. Should we assertively deal with trouble areas, of course.

So what is going on with the NY Times article and the Times Union editorial. One possibility is that the ladder of inference process is fully functioning here. Take a few tragic situations, and a few more situations involving abuse and possible criminal behavior and attribute it to the whole system without testing your assumptions."

The Art Experience and Collaboration

I recently participated in a meeting of people and organizations that are part of planning an inclusive arts festival and expierience that will take place in the spring of 2012. To me, this has been one of the best examples of why and how collaboration works and how it results in personal growth and community involvement. Three or four years ago a pretty small group of people from agencies providing support to people with developmental disabilities in the Finger Lakes region of New York and a few educators from Hobart and William Smith Colleges in Geneva NY, started talking about an arts festival that would bring the Colleges and people with disabilities together in a celebration of the arts. The first year the agencies sponsored a touring film festival and the Colleges had a few special events on campus. As the festival has developed more focus, clarity and the variety of events and activities have emerged.

As with most collaborative and organizational efforts there have been growing pains, the evolution of ideas, some personality struggles and lots of work - always. But I've also watched a committed team of people pull together and share common goals around education, diversity and the inclusion of people with disabilities. It's really been great to watch. The event is evolving into a true partnership between the Colleges and the agencies involved. People have a shared vision of offering college students, people with disabilities, agency staff, college staff and the community at large opportunities to learn together and in the process to learn about and support each other. All of this is being accomplished through artistic pursuits and learning - dance, film, poetry, music, sculpture and visual arts of all sorts. The Arts Experience, a celebration of inclusion and the arts, will take place during the last two full weeks of April 2012, mostly on the HWS Campus. There are still lots of details to work out but the project is really moving forward in great ways. I'll put more specifics on this blog at some point.

What I really want to point out though, is that this is a really important example of collaboration and leadership. None of this would be happening if it wasn't for the leadership of specific people from the agencies and from the Colleges. Leadership involves passion. It involves a belief system that wants things to be the best and to be successful. It requires enthusiasm, compromise and a willingness to commit time and resources. It also requires a lot more.

I'm going to continue to discuss leadership at various points in this space because it is so critical to what we all do and where we're all going. Frankly it doesn't matter if it's a celebration of the arts and inclusion or if it's the day to day operation of a large organization. It doesn't matter if it's as the mayor of a small village or as the leader of a country. Leadership is at the core of how things get done and it's critical that we have some understanding of how it works, what's needed.  There are thousands of books written on the topic and there's a reason for that. We know we need it. We depend on it. We beg for it at times.

So I may repeat myself every once in awhile in discussions about odds and ends on this blog, but follow the thread of thought and you'll see, I hope, how important certain traits and values are as we strive for leadership. Much more to come.

Anonymity - How Necessary Is It?

There was an interesting article in the New York Times this past weekend reporting that New York State had broken a pledge to protect the anonymity of employees (and others) who reported concerns about supports and services to people with developmental disabilities. There's a lot more to it then that but I think you get the gist. This was a discussion about whistleblowers, fear of reporting and how systems have been established to protect certain people from abuse and neglect.

This comes on the heels of a national debate about the importance of taking action when someone sees something illegal and harmful happening. It comes after of my own discussion on this blog about a culture of silence. The report itself is not a bad one but I do think reporters and journalists have a certain bias toward anonymity since, many times, it plays such an important role in their work. What I'm not sure of is if journalists think very much about the distinctions between their experience with anonymity and how it may play out in other settings. This is an area that I have struggled with for a long time and I know there are many others who are constantly trying to figure out the right and wrong of it because they live with it on a daily basis.

The first issue is that there is an assumption that very bad things will happen if the person reports a situation that is clearly wrong and that needs correction. I'm not sure that assumption should always be made. If a person has factual information that can be backed up, in a perfect world, they should be able to come forward. There are circumstances where leaders of organizations or institutions don't welcome challenges to their authority. We all know them and we've all probably experienced them. These are people who tend to manage by fear, don't invite debate or diversity and who probably have manipulated their leadership authority along the way. It happens and it exists. But in general, people do want to do the right thing and that includes supervisors and leaders within organizations. Sometimes there's a breakdown (witness Penn State), it does happen.

Here's where we get into some conflicts however. News journalists need to and have a right to protect their sources. The important point though is that there is a source to be protected. There's an actual person that the journalist knows exists and who provides information that the journalist can and hopefully will verify. This is much different then the anonymity that many times people want to talk about and protect and the difference is significant. I'm talking about the anonymous note or call where a person refuses to identify themselves purportedly for fear of retaliation. In these cases facts are sketchy, corroboration is difficult, and innuendo seems to be the standard. What is usually presented is akin to the worst conspiracy you can imagine. Now I think people should be able to distinguish between those two situations.

The reality is that people do need facts to investigate allegations of abuses of any kind. People also need the courage to stand up to injustices and speak out clearly about what they see and what they know. If people need protections, they should be able to articulate them and the people reported to need to be honest about what they can and can't provide. The discussion about these things is almost as critical as the pursuit of the truth. If there is historical evidence of retaliation it should be brought forward and identified and it should be real vs imagined.

Personally I don't like anonymity. I think it can and has been a cop out in too many cases. There is however a place for it but the standards for its acceptance should be very high. I fear that is not the case and that people find it easier and easier to make allegations that tweak people's interest in gossip and general mistrust. Personal responsibility in speaking up and taking action should in my mind always be the first choice.

Post Script
For a different perspective go to David Grandeau and Associates' blog here: http://davidgrandeau.blogspot.com/ and read about what Joe Pa Could Learn From Danny Hakim.
I have a great deal of respect for Mr. Grandeau, his opinions and his work for more transparent and ethical government. I would point out that we may want to be just as concerned about the promises that have been made to people with developmental disabilities and their families by NYS and the Office for People with Developmental Disabilities.

A Culture of Silence

This past week we have all seen the reports on Penn State. It strikes me that the culture of silence at that institution was worse then most. I do think however that it has forced lots of people to think about their own institutions - any workplace, schools, hospitals, social service organizations, non profits and community groups. It even applies and reaches to informal and formal communities of friends, colleagues and families. Beyond the outrage, I think lots of people are stepping back and thinking about the whys and wherefores and ultimately, could it happen here or more personally, what would I have done? That is obviously a good and important reflection but the real question is what makes it possible for no one to do the right thing? We could go on for hours I suppose discussing a definition of "the right thing" but lets accept something basic like intervening and reporting criminal behavior.

We're not talking about shades of grey here. These issues are pretty black and white issues. Right? An individual or individuals witnessing an adult having sex with a child. I believe that most people understand what kind of response they would have and what actions they would take. Then I think of those studies and shows that you sometimes see where people turn up the dial to inflict pain or walk by an incident of obvious brutality.

I've tried hard to search my own past memories of some pretty brutal things that I've seen and I can remember a situation many years ago where I witnessed someone being abusive to someone else, a vulnerable person, and I didn't do anything but get angry. As I reflect on that instance, my excuse is that I didn't have any authority and I didn't really understand the system. In addition, and this is critical, I thought somehow it was acceptable. Let me be clear about the situation. In the late 70's I was visiting an institution for people with developmental disabilities that was being closed by the state. The employees felt very threatened relative to their jobs being lost. As I was toured through the facility, seeing and meeting individuals who were being considered for placement in community settings, we came across an employee giving a haircut to a profoundly disabled man. The employee knew why I was there. At a certain moment, he grabbed the individual by the hair and pulled back his head with great force and said "here, you want him? You can have him" or words to that effect. I didn't say "stop your crap". I didn't ask the 'official' with me to do something. That same day and on that same tour I was shown an adult male in a shower stall, on the floor with a restraint around his leg being "showered" with a hand held shower unit. Hosed down was more like it. This was acceptable? It shouldn't have been - but it was.

Now I have to say I was outraged and these instances made me commit to make sure supports and services were developed for these individuals and that they ultimately were placed in community settings. But I didn't call the police and there was no need to report it to an administrator since someone in authority was leading the tour. As my mind has unraveled these memories I know there are other instances both as a child and as a young adult where things happened that I should have done more to stop. We all need to be honest about these instances where we've witnessed bullying or physical confrontations that crossed a line. They impacted us and helped make us who we are.

These are not excuses for what happened at Penn State. People should have spoken up and most of us know that. But I would guess that there are lots of situations where people may feel inadequate about their past responses to bad and questionable behavior. We have to reflect on this. We can't accept cultures of silence and we can't accept excuses.

Dissent

Over the years I have been involved in dissent from both sides, as a dissenter and as someone in a position of authority who some people disagreed with. In that process I've learned more and more about the importance of dissent. It really is a necessary part of what we know as the democratic process and it is also important for organizations and leaders. Everyone needs to learn from it and respect it no matter how tough the situation becomes. Authority never has an overriding desire to be challenged but those in authority really do have to learn the importance of listening and analyzing dissent.

As I indicated, I've been a dissenter over the years both politically as an employee and as a member of various boards, committees and organizations. I've experienced times when my dissent was welcomed but frankly not very often. In most cases my own dissent was not welcome and in a few situations I was personally attacked and made out to be a fool. In the worst cases I was spat on, beaten and incarcerated. Sadly, these are common tactics used by people in power as well as the people who work for them to silence all dissent.

I have also been on the other side. I've worked as an administrator in a non-profit and there have been times and instances where employees, subordinates, or people the organization was supporting, dissented against policies or ideas that I was promoting. These situations were never comfortable but I believe I always tried to use them to learn about a different point of view. Hopefully, I never made the dissenter feel foolish. All of this has convinced me that dissent is absolutely necessary in the decision making and governing process. The debate is the important part of the process.

Arab Spring, the Occupy Movement and things I've seen in reporting recently about services in the developmental disability field point out the importance of dissent. I'm also surprised at how people seem to be able to make judgements about good vs bad dissent. We all know that there is no comparison between the risks taken by participants in the Arab Spring uprisings and the risks taken by participants in the Occupy Movement. On the other hand there are risks associated with both and more importantly they are both examples of people speaking up against powerful people. Isn't it interesting that the participants in the Mid East by and large are viewed as heros and Occupy participants can be viewed as bums, hippies and good for nothings. This is certainly one of the things I'm finding confusing these days.

I continue to celebrate the dissenters. They may not always be right but the point is, they force us to think about what's right and how to get the right thing done. So at least respect it.

The Power of Music

Tonight I sat and enjoyed the Steve Martin narrated 'Give Me The Banjo' on PBS. A great historical perspective on the instrument and literally hundreds of artists. One of the segments was about Pete Seeger, how he got involved with the banjo, how he taught it to thousands of people and about some of his hard times. It reminded me of many things but most importantly it reminded me of the power of music - how it brings people together, how it tells a story. The segment also spoke of the time that Seeger and Woody Guthrie spent together.

It also reminded me of times many years ago when I played the guitar on the streets and in apartments and a few bars in NYC. Very few stages. I wasn't that good but as Seeger says, it was more about doing good then playing good. So my friends Paul Mann, Murphy 'Cajun' Dowouis and I would play together and entertain all of the other folks that we were hanging out with at the time - Catholic Workers, hobos, peace movement people, street people. The beer would be plentiful and the lyrics changed and grew depending on the situation. We sang and celebrated our time. We were bound together and the music gave us hope and more.

Over the years I've strayed from playing the guitar. I pick it up now and then but nothing serious ever comes of it. Partly I believe because Paul and Murph or buddies like them are missing. I'm committed to getting back into it though. Part of what I've done to compensate is to collect other instruments along the way. Maybe it's my way of trying to put together a band. So I have a banjo mandolin, a mandolin, a penny whistle, five (5) harmonicas, a couple of kazoos, my old Yamaha guitar, a washboard and an irish Bodhran drum and various rattles and percussion noise makers and rhythm keepers. Finally I have my voice - still able to carry a tune but remembering the lyrics becomes more and more tricky.

The point is though that music is powerful. I've seen it move people to tears as well as change the course of events. It is powerful stuff and should be respected, taught and passed on. I'm going to try to do my part. Great show by the way - 'Give Me The Banjo'.