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.
Wednesday, December 28, 2011
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........
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........
Friday, December 23, 2011
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.
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.
Thursday, December 22, 2011
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.
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.
Tuesday, December 20, 2011
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."
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."
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