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. 

Paul Marchand, NYSARC Consultant on Governmental Affairs

For the first time in almost half a century, the Supreme Court held more than 6 hours of arguments over 3 days during the last week of March regarding various aspects of the Patient Protection and Affordable Care Act, commonly referred to as “Obamacare.” This landmark law contains numerous provisions that would impact people with intellectual and other disabilities.  For example, insurance companies would no longer be able to disqualify people from coverage due to pre-existing conditions.  Medicaid would be expanded to provide services to many low income individuals and families who don’t have health insurance.

The Justices heard arguments on whether parts of the law are unconstitutional and whether mandating coverage was coercive to states.  Much of the final day was devoted to Medicaid.  Twenty-six states, all of them led by Republican Governors, argued that a key provision of the law was coercive.  A very large proportion of Medicaid is optional to the states.  Every state accepts some of the Medicaid options.  The new law requires that any state that fails to enroll targeted low income individuals in Medicaid would lose all of their Medicaid funding.  The Republican-led states argued that, given the size of the Medicaid program, they would have no choice but to accept the new option. Thus they strongly oppose the law. Practically no attention was paid during the arguments to briefs filed by other states who support the expanded Medicaid option.

The likely lynchpin to the court deciding on the constitutionality of Obamacare is the provision which mandates that all Americans who don’t have health insurance buy coverage or pay a penalty.  The power of the Congress to legislate such a mandate was discussed at length, with strong and opposing views among the Justices.

The Court is expected to rule on this case in late June.  Many court observers anticipate that the conservative leaning court will invalidate some provisions, if not the entire law.  This view is based on the pointed questions posed by the five conservative Justices.  Other observers aren’t sure that the sharp questions fully indicate how each Justice will actually vote.

The Arc was among many groups strongly supporting the enactment of the Affordable Care Act.  The disability community has much to gain if this law is fully implemented.  Since Medicaid constitutes the vast proportion of DD programming in every state, a change, positive or negative, will impact the DD system.  The Supreme Court ruling this summer will need to be closely monitored.  In many respects, the future of our nation’s health care system will be shaped by this decision.

For NYSARC and the rest of the disability community, this critical decision may or may not have major implications on the future of Medicaid.  Obviously, if the Court decides to support the law, the Obama Administration can move forward with full implementation. However, if parts of the law are deemed unconstitutional, will all of the other provisions also fall since many of the law’s provisions, particularly the bases for funding the mandate, render the law unimplementable?

Most of the health care law’s provisions don’t kick in until 2014.  If the Court rules that some or all of the law’s provisions are unconstitutional, it is possible that the Congress could revisit parts of the statute, particularly the more popular aspects of the law.  Those provisions could include the pre-existing condition exclusion and allowing parents to maintain their children on their health policies until the age of 26.

Clearly, politics are strongly in play in this situation.  It is unlikely that this Congress and President Obama will attempt to address this further with only a few months between the Court’s decision and election day.  The election results will themselves likely play a major role on how Obamacare will ultimately be implemented, if at all.

Paul Marchand
NYSARC Consultant on Governmental Affairs 

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.

The actions on pension reform and redistricting begin to clear the way for an early budget and possibly a timely end to this year’s legislative session.   If everything works out, these accomplishments would amount to another set of big victories for the Governor.

See Governor’s press release on redistricting:  http://www.governor.ny.gov/press/03152012redistrictingamendment

See Governor’s press release on pension reform:  http://www.governor.ny.gov/press/03152012pensionagreement

PEF rallies against the Governor and for preservation of State-operated services under OPWDD and OMH.

See:  http://www.poststarnews.com/news/x872941674/Thousands-of-PEF-Members-Rally-at-the-Capitol-Urging-Lawmakers-to-Hold-the-Line-on-the-State-Budget

March is Statewide Family Advocacy Month, in  conjunction with CP of NYS and Alliance of Long Island Agencies

DON’T LET THEM FORGET US!! March is the opportunity to visit or call your legislators and make it clear to them that the people we serve have acute, unmet needs.  

Also, Friday, March 9th is Family Advocacy Call-In Day.

With only a few weeks until the State budget passes and March as federal Developmental Disabilities Awareness Month, now is a particularly good time to get our message out.  Therefore, NYSARC and CP of NYS have collaborated on March as Family Advocacy Month!

Because it has become increasingly difficult to coordinate a single Statewide Family Advocacy Day and since NYSARC and CP of NYS are not doing an Albany Lobby Day, we are asking that you coordinate local events with your legislators.  To help you with this, please download NYSARC’s budget priorities for the 2012-2013 state fiscal year.

Since some chapters have already held events with their local Legislators, we are suggesting that you have families participate in the Alliance of Long Island Agencies’ Family Advocacy Call-In to local Legislators on FRIDAY, MARCH 9th (for more information, please download this flyer).  If Families can’t call in on March 9th, they can call their local Senator and Assemblymember any time during the first three weeks of March.

Because Family Advocacy events will be held throughout the State on different dates and the Governor’s OPWDD budget did not include new funding cuts, most associations decided that it was not useful to ask for additional funding as providers.  However, families, many of whom are waiting for a variety of services, must make sure that their legislators understand that there is a growing need for additional services. 

It is also critical to highlight the needs of our direct support professionals.

Families can call their local legislators about OPWDD, Early Intervention, Preschool Special Education or other priorities important to your Chapter.

NOW IS THE TIME TO BE HEARD.  WE CAN NOT LET OUR LEGISLATORS FORGET US.  They must understand that people with developmental disabilities continue to have critical unmet needs!

Please get the word out to your families ASAP!

Resources

For Assembly member contact information go to:

http://assembly.state.ny.us/mem/

For Senate member contact information go to:

http://www.nysenate.gov/senators

On a regular basis, NYSARC will present an important issue facing the field of intellectual and other developmental disabilities and explain the Organization’s position on the issue. For a complete and more detailed description of our Issues and Positions, please visit our Advocacy page and click on the “Read Our Position Statements” link.

Autism and the full range of autism spectrum disorders, as a field, has received a tremendous amount of attention over the past decade by many advocacy and service organizations.  Autism is, at its most basic roots, another classification under “intellectual and other developmental disabilities.” Autism is treatable and with the right services and supports, people on the autism spectrum can lead full, healthy, and meaningful lives.

Given that the need for services to people on the autism spectrum is rapidly increasing, it is NYSARC’s position that the same supports and services we provide to other people with intellectual and developmental disabilities must be provided to people on the spectrum in a way that is appropriate and accessible to their specific needs, no matter the strain on resources. Furthermore, we feel that the education and service networks in New York State must develop strong diagnostic resources to accurately identify people on the spectrum and their specific needs. Finally, research must be done to study the diagnostic and treatment models to provide the greatest supports to people on the spectrum.

This position was last adopted with amendments on October 21, 2011 at the NYSARC, Inc. Delegate Assembly

Topics for Discussion

Please use the commenting system below to respond to these questions or, if you have another question that we have not raised below, we encourage you to ask it.

• Are you on the autism spectrum? If so, what do you feel are the most important issues you face?
• What can NYSARC do to provide better supports, services, or advocacy on behalf of people with autism spectrum disorders?
• Why do you think that autism has received so much attention nationally?
• How well do you think movies and TV shows portray the lives of people with autism?

If you would like to get involved with NYSARC, Inc.’s efforts towards providing supports and services to people on the autism spectrum, we encourage you to become a member of your local Chapter today.

“[After Willowbrook,] New York and other states emptied their warehouses, started group homes and companies grew to run them, taking in billions of dollars in state aid. Families of the disabled felt relief, some for the first time.

But a New York Times series finds that things have once again gone terribly wrong.

Reporters uncovered cases of patient abuse by low paid staffers who were transferred rather than fired, and overpaid executives who were never charged for misusing state dollars. A whistle blower describes the system as a cult. The Times describes New York state’s relationship with one care provider as a spouse caught in a bad marriage.”

Listen to the interview

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

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.