Marc N. Brandt, Executive Director

Suddenly it seems that the 1115 Waiver may no longer be the vehicle for change for New York State’s system of services for people with developmental disabilities.  Some may be tempted to think that we can enjoy a respite from the pervasive anxiety about our future.

Nothing could be further from the truth.

The fundamental policy direction for our service system is still intact.  Managed care is still the top priority.  We are still in the grips of austerity.  A top-to-bottom overhaul of the way we do everything is still inevitable.  It may take time, but it will happen. Our destination shows no sign of changing though we may be find ourselves using another vehicle to get there, whether we call it the 1115 Waiver or 1915 Waiver.

NYSARC is still dedicated to responsible change.  As the largest parent-based organization serving people with developmental disabilities in the nation, we have an obligation to lead that change, not only to ensure that the mission and values of our organization remains undiminished, but also to do our part to ensure that the entire field retains the fruits of a revolution we began sixty years ago.  That revolution brought people with developmental disabilities and their families out of a long dark age.  We will not let them return to that dark age.  That’s in our self-interest as an organization.  But more importantly, it’s also in the interests of untold thousands across our State and nation who are not part of our organization.

If we go from a 1115 to a 1915, only one digit will change.  Other than that, it is up to us to make sure that the most important things – the dignity and well-being of the people we support – remain fully intact.   It won’t be easy but we may be the only ones who can do it.

Marc N. Brandt, Executive Director

In November of last year, we launched the Where We Stand series on the NYSARC News Blog, an initiative of our Issues & Positions and Membership Committees. The series attempts to present our Organizational positions on key issues in a more understandable manner.

Read it now: http://blog.nysarc.org/category/where-we-stand-our-issues-and-positions/

Our hope is that by presenting our positions on the Blog, we give each of you, the members of NYSARC, Inc., an opportunity to fully understand the reasons behind our positions and open up the issues to discussion. A series of questions is included in each Where We Stand post, intended to stimulate the conversation.

Our “Positions Statements” document (download it now) represent our collective mission and present our distinct Organizational opinion on the predominant issues that we face. In many ways, our position statements serve to define who NYSARC is  and for what we stand.

That’s why we have made it a top priority to engage our entire membership in a conversation about our positions. We encourage you to visit our blog, click on the “Where We Stand” category, and add your comments and thoughts to the discussion. By broadening the conversation, we hope we can further refine our positions and make sure they best reflect the concerns and opinions of our membership as a whole.

Thank you for getting involved and letting us know how you feel!

Marc N. Brandt
Executive Director, NYSARC, Inc. 

Marc N. Brandt, Executive Director

On March 12th,  Paul Nigra, the former executive director of our Fulton County Chapter, passed away.  Paul had been courageously fighting ALS (Lou Gehrig’s disease) for close to two years.  Collectively we feel a void and sadness.

We, of course, extend our profound condolences to  his wife Barbara and his family.  Those condolences also go out to the entire Fulton County Chapter who comprised, at the very least, Paul’s close extended family.

People cared so deeply for Paul because he spent a lifetime caring so deeply for them.  For Paul, being the Fulton Chapter’s executive director was far more than a job. It was a passion.  There was no truer advocate and friend for the people and families we serve and the staff we employ.  Beyond the Fulton County Chapter he was widely respected by everyone who knew him.  But even more than that, he was one of those rare individuals who were part of our collective conscience.

Paul Nigra

Paul could never do enough for the people and families we serve.  You could not be with him without feeling that you also must do more.  But he wasn’t a preacher;  he was a problem solver.  He was constantly trying to figure out the solution to our most confounding dilemmas.  And like it or not, when Paul was around it was impossible not to do the same.

Paul set an example of what we have been and must continue to be.  But calling him an example doesn’t do him justice.  He was an inspiration, the kind of inspiration that this field owes its existence to.  Now we will have to face the challenges before us without Paul.

Paul Nigra leaves behind a legacy that includes the establishment of Flame, a standard of quality and caring that serves as a model, and thousands of lives that he touched upon that will forever be changed.

We are lucky we had Paul and lucky too for the standard he set and the inspiration he gave us.

Marc N. Brandt
Executive Director, NYSARC, Inc.

Marc N. Brandt, Executive Director

With this latest issue of Our Voice Today, I’m proud to announce the immediate availability of NYSARC Gives Back (download it now), a publication highlighting the many and varied ways NYSARC, Inc. collectively strengthen communities across New York.  From participating in Meals on Wheels to gathering critically needed supplies for victims of Hurricane Irene, our staff, volunteers, and the people we support always strive to give back in meaningful ways.

Over the past year, the field of developmental disabilities has been heavily scrutinized by the press, most prominently in a series of articles in the New York Times.  These articles leave readers with the impression that the entire field is mired with problems and mismanagement.  To make matters worse, they reinforce the notion that people supported by these organizations are capable only of using resources and never of being a resource to others.

That is simply not the case.  This field, and specifically NYSARC, Inc., has been built on a culture of support, volunteerism, and community-mindfulness. Even as I write this letter, NYSARC Chapters across the state are busy planning and preparing for President’s Project Week, a statewide effort occurring the last week of March during which all NYSARC Chapters will participate in a volunteer program of some sort. This effort and the NYSARC Gives Back publication capture the true spirit of this Organization. It’s not sensational and it may never make the front page of the New York Times, but it is the truth.

We are very proud of the accomplishments of our Chapters. Without mandates or requirements, volunteers from this organization have always taken it upon themselves to find ways of giving back. I know you will share in that pride when you read the stories from NYSARC Chapters across the State and we encourage you to distribute this publication far and wide. Now is the time for us to set the record straight and let the world know what this field is all about.

Marc N. Brandt
Executive Director, NYSARC, Inc.

Resources
Download “NYSARC Gives Back” (.pdf)
View “NYSARC Gives Back” (Scribd website)

Marc N. Brandt, Executive Director

Whether or not we needed further reinforcement of the message we have been hearing for over a year, the Governor’s budget proposal for FY 12-13 provides it.

With a second year of no trend or inflationary increases for our field, our purchasing power is further diminished and the viability of our programs threatened. And with the controversial rate methodology which built our field over the past three decades effectively dead, the possibility of further inflationary increases in the future looks bleak.

Proposed caps on administration and executive compensation further underscore the Governor’s belief that our field is not nearly lean enough and in a service system worth something like $8 billion a year he believes that there is plenty of room for savings.

The Governor’s budget intentionally forces us to achieve those savings. At least we know that for now our fate is in our own hands. We also know that will not be the case indefinitely. When the Governor’s frustration with our field’s ability to begin to credibly move to managed care reaches a breaking point, then we may find ourselves in the same boat with the State’s home care providers. On April 1st they will begin a forced move to managed care. That will largely take their fate, mission, and values out of their own hands and turn them over to large Managed Care Organizations.

We can’t wait for that to happen to us. We are working ceaselessly to make sure it doesn’t. Our organization will shortly meet to discuss this. Then we will begin to discover if collectively we have sufficient will to make the hard decisions essential to save ourselves.

Marc N. Brandt, Executive Director

Governor Cuomo’s State-of-the-State address on January 3^rd was another superbly delivered strong and even dramatic speech.  Maybe it is a reflection of aspirations that go beyond New York State. But certainly it’s a reflection of a very strong state Chief Executive.

It’s clear that when Governor Cuomo speaks, people far beyond New York State’s borders are listening.  We know that because, among other reasons, people tell us that.  Lately, for us, that’s a mixed blessing.

Now the unfavorable press coverage for our field in NYS stretches back over a year with the New York Times turning it into a crusade.  That would be acceptable if the coverage were fair, but it isn’t.  Yes, issues have been raised that we must take very seriously, but the overall impression has been an inaccurate and distorted smear that is not at all truly representative of our field and the services we provide to people with developmental disabilities through dedicated staff and devoted families.

In his State of the State, Governor Cuomo told the State – and the nation – that New York spends “more than any other state on services and support provided both by our government and a vast array of nonprofit and private agencies. Yet …. New York ranks in the bottom quartile among states in serving adults with disabilities. This situation is fiscally irresponsible and morally unacceptable.”

Hopefully, the Governor’s remarks were not intended to play to the distorted picture that the press has painted.

We can’t control the press.  They have created and continue to feed the public appetite for stories like those appearing in The Times. It is in his interest and ours for the Governor not to take part.  That doesn’t just go for the State-of the-State but for all of the public statements made by his administration. On occasion those statements have, at the very least, been misinterpreted in a very public way.

We need to work with the Governor and the Governor needs to work with us.  We need to work together on some extremely ambitious plans.  No one’s interests are served by statements and characterizations that are seen as unfair and engender mistrust.  While neither we nor the Governor can control the press, we can control ourselves.  This field needs to be the great field that it is and Governor Cuomo needs to be the great Governor that he appears to be on the verge of becoming.  Our families and their loved ones depend on it.

Marc N. Brandt
Executive Director, NYSARC, Inc.

Marc N. Brandt, Executive Director

The latest New York Times article published yesterday, “An Operator of Group Homes Keeps State Aid Despite Faults,” is only the latest in an increasingly distorted misrepresentation of our field.  It adds insult to the injury of prior articles such as “Aiding Disabled, Nonprofits Rake in State Money.”  Too many of these articles falsely purport to represent the entire field by singling out the most egregious examples of irresponsible conduct.

NYSARC joined with four other statewide organizations to submit a statement (read the statement) to the New York Times.  We have also shared this statement with Commissioner Burke.

But the challenge to us is greater than the New York Times.  As we look forward to a sweeping transformation of our entire field, I am well aware that many of you are seized with anxiety about the future.  Parents and families are sick with worry for their loved one.  Our employees wonder if they will have a decent job.  And, if that weren’t enough, for over a year we have been subjected to an onslaught of extremely negative, high profile publicity about the abuse of finances and people, the cumulative impact of which has been to paint a grossly distorted and inaccurate picture of our field.

Many families are terrified that this is an attempt to dismantle the services their children and loved ones depend on.

Dedicated employees feel publicly slandered and smeared.

Their often lifelong dedication seems to have been ignored in favor of a picture casting them as self-serving scam artists whose interests are limited to enriching themselves at the expense of people with developmental disabilities.  This, we know, is a smear job and a gross distortion.

Yes, we have plenty to be outraged about.

The reality is that our field is largely responsible, responsive and conscientious. Yes, some individuals have been irresponsibly overcompensated. But the consequences of under-compensation can be catastrophic. As a rule, our top employees are very modestly compensated, particularly in view of their enormous responsibilities.    They rose to the top because they work for parents who recognize their compassion and dedication.

Yes, there are always exceptions to the rule.  Whether those exceptions include financial abuse or abuse of the people we serve, we must take them seriously and aggressively root them out. But the New York Times, in addition to other publications, has created the false perception that those exceptions are the rule.

To many, the whole thing feels like an orchestrated attempt to rob us of our credibility and undermine our field.  Understandably, we want to set the record straight in no uncertain terms.  We want to lash out.

But now is not the time for that.  Now, more than at any time in our history, we must objectively and deliberately assess the facts and logic supporting the best approach to saving our entire field for decades to come.  With everything at stake, as hard as it is to restrain ourselves, we cannot afford to succumb to our passions.

While nothing is guaranteed, NYSARC believes that based on the facts NOW before us, we do have an approach that can work.  It is an approach that will provide the opportunity for our organization to make maximum use of its unique status as a single corporation and its unique position as the largest developmental disabilities provider in the nation.  That is the BIG PICTURE and we cannot afford to be distracted from it until the facts of government, the economy, and politics change.

We must keep our eyes on the prize, on the big picture.  As difficult as it is, that is what we are doing.  And that is what I hope to report on in detail in the months ahead.

The 1115 Waiver and managed care constitute enormous challenges.  Whatever is done with them in our State will dwarf any other similar effort and cast our field in a national spotlight.  NYSARC can lead that effort, shape it, and grow stronger, not weaker, as a result.  NYSARC can establish the national model.

But we must pursue, as one organization, the most thoughtful, deliberate, and effective strategy possible.  And we must do it with an iron discipline, adjusting our course only when the facts change.  It’s not going to be easy, but nothing of this magnitude can ever be easy, painless, or certain.

Our ultimate goal is not to even the score.  Our ultimate goal is to employ the strategy that serves the best interests of the people and families we serve whether or not that includes “evening the score.”

While I fully recognize the challenges that we have had to face this year, those challenges will pale in comparison to what 2012 will bring.  We are, as we must be, up to those challenges.

I look forward with renewed optimism to working with you in the coming New Year. And I extend to each and every one of you the very best New Year.

Happy Holidays to all.  The coming year could be the most momentous year in our history.

Marc N. Brandt
Executive Director, NYSARC, Inc.

The New York Times

It reduces the enormous complexity of our field to little more than inflammatory sound bites that convey a distorted impression across the nation while the federal government looks on.  It adds fuel to the already staggering levels of anxiety experienced by parents and people with disabilities in the face of enormous change.

Positive change will require trust.  That concern, we know, is not the business of newspapers. For them, perhaps, the fallout is little more than collateral damage. In reality it is much more.  It gnaws away at everyone’s best efforts to move into the future with the trust of the public and people whose lives will be profoundly affected.

We are the legitimate subject of public scrutiny.  And the hard reality is that we cannot control the press.  Instead, we and the State must work together in good faith to both deal with and represent the truth as faithfully as we can. With everything hanging in the balance, few tasks could be more important.

Marc N. Brandt
Executive Director, NYSARC, Inc.

Jim Murphy

On Tuesday we learned that Jim Murphy of our New York City Chapter passed away.  Our heartfelt condolences go out to his family, his wife Marge, and the City Chapter.  Jim was always there when NYSARC or the City Chapter needed him.  With numerous connections in high places, he made invaluable contributions to our legislative initiatives.  And with his great intelligence and wisdom he guided us through some of our thorniest organizational issues.

Jim was one of a kind.  In the most trying circumstances over the most sensitive matters he would turn to his legendary ability to tell stories.  Inevitably those stories, told with dazzling charm, featured characters from many faiths and backgrounds working together.   More than anyone else, Jim reminded us all that we are an organization from diverse backgrounds dedicated to a common purpose.   Jim was also a parent.  That spoke for itself.

Bill Albertin

We also learned of the passing of Bill Albertin.  Bill was a founder of our Montgomery Chapter.  Like Jim, Bill was also a parent.  He too was deeply involved in his Chapter and, as a Board of Governor member, deeply involved with NYSARC.  His very personal and vigorous support will forever be appreciated by anyone – like me – who was its beneficiary.

As that generation passes on during this difficult period in our history, we know that we must not lose touch – especially now – with our parent and family roots.  It’s what brought us so far over the last half century.  It’s what we must continue to rely on to travel the difficult road ahead.

It may sound like a cliché, but we must make certain that the torch is passed from that greatest generation to the next generation.  Just as the one generation rose to the challenge of institutional scandals, so must this generation rise to a different, though equally daunting, challenge.  Willowbrook and Medicaid Managed Care are very different but they both demand the kind of intelligence, wisdom, and dedication that Jim and Bill personified for all of us.

We will miss them but, inspired by them, we will carry on.

Marc N. Brandt
Executive Director, NYSARC, Inc.

For these reasons NYSARC has a history we can be proud of.  It was NYSARC that established the Ombudsman, the subject of the very last New York Times story.  And it was NYSARC that advocated over the last 20 years for an independent Ombudsman for exactly the reasons cited by the latest New York Times story.  Our history is replete with other examples of accomplishments that have dramatically improved the quality of life for the people we serve, including: our suit against the State for the conditions at Willowbrook; establishment of a separate Office (OMRDD, now OPWDD); the Health Care Decisions Act and, among countless other examples, our record of achievement in the areas of trusts, guardianship, and future planning.

More recently we have partnered with the Direct Support Professional Alliance of New York State (DSPANYS) to advocate for a statewide code of ethics and credentialing process for all direct support professionals.  As a family-governed organization, NYSARC’s President, Jack Schuppenhauer, has established a Quality Standards Committee to ensure that the safety of our family members and other individuals we support is always our core commitment.  We are working with the Cuomo Administration and the Office of People with Developmental Disabilities on the 1115 Waiver and the change it promises to the entire field.

But NYSARC will never rest on its laurels.  We know from our long experience that complacency in our field is an enemy, not a friend.  The Times reminds us, once again, that our refusal to ever become complacent has served us well.  And the Times also reminds us that no matter what we think of the job we now do, we can always do it better.  That is the lesson of these sobering and serious stories.  It is a lesson that our organization has always taken to heart and acted upon.

Marc N. Brandt
Executive Director, NYSARC, Inc.