Nothing about us without us!

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Bruce Darling

Please join the Center for Disability Rights, New York State ADAPT and other disability-led organizations in demanding independent, disability-led, aggressive and comprehensive Protection and Advocacy!

New York State is being required to change its Protection and Advocacy system, but the Governor and Syracuse University want control instead of allowing it to be disability-led.  We can’t let that happen.

TAKE ACTION NOW: Any organization can sign on by sending an email

Please indicate if the organization is based in New York, is a national organization, or is another state or local organization.


The New York Times reported on the fact that the Protection and Advocacy (P&A) system in New York has functioned as a part of state government, and we have had serious abuses in our state’s institutions.  The federal government has made it clear that this cannot continue and has told New York that it needs to designate an independent Protection and Advocacy entity.

The disability community supported a proposal by Disability Advocates, Inc. (DAI).  They have a strong track record and are recognized for suing New York State over the institutionalization of people with mental health disabilities in adult homes.  DAI has agreed to change their organizational structure and work with the disability community.

Syracuse University has also applied for these funds.  The Syracuse University proposal has some serious problems.  It:

  • was developed without involvement of the disability community;
  • minimized the role of systemic litigation, suggesting that students and volunteers could be as effective as career disability lawyers;
  • would unnecessarily divert funds for disability rights advocacy to the University’s “indirect” costs; and
  • gives governing authority of the P&A to Syracuse University, dis-empowering the disability community and potentially subjecting the P&A to influence of the University and its donors.

Instead of selecting DAI, which has broad support of New York’s disability community, the state is now trying to force DAI to work with Syracuse University.  DAI would be forced to give control of the DAI Board of Directors to Syracuse and the Governor.

We have reached out to Syracuse University and they have made it clear that we want the P&A to be disability-led with our community in control of who sits on the board, but it is our understanding that Syracuse University and the Governor are unwilling to let that happen.

To assess these proposals for yourself, read the standards for P&As that were established by the National Disability Rights Network.

We need to send a strong message to Governor Cuomo that the academic and political establishment should not control our lives.  It’s time that Governor Cuomo and Syracuse University understand there should be NOTHING ABOUT US WITHOUT US!


James Introne

Deputy Secretary of Health and Human Services

New York State Capitol Building

Executive Chamber

Albany, New York 12224


Dear Mr. Introne,

The undersigned organizations represent the disability rights community and are writing to express our serious concerns about the development of the State’s designated Protection and Advocacy (P&A) entity.

It is our understanding that the State is engaged in negotiations with Disability Advocates, Inc. (DAI) and Syracuse University to determine how they will work collaboratively as New York’s P&A entity.  The disability community has serious concerns about this process, which has been characterized by Curt Decker of the National Disability Rights Network as a “back room deal” and a “shot-gun wedding”.

We are deeply concerned that people with disabilities and our disability-led organizations are not involved in this process.  While the State offered a public comment period to weigh in on the selection of the P&A entity, the discussions have moved well past “selection”.  It is our understanding that the “back room” negotiations include the discussion of organizational and governance structure, as well as the allocation of funding, which will have a clear impact on the work that the P&A entity will do. Critical decisions about organizational and governance structure, priorities and the allocation of funding must be made by the disability community, including people with disabilities and our disability-led organizations.

Aside from the fact that this approach disempowers people with disabilities, there is serious conflict of interest for the State to be involved in making such decisions.  As you know, the P&A system was developed to provide legal representation and other advocacy services to people with disabilities.  A fundamental role of the P&A is to maintain a presence in State facilities serving people with disabilities, where it monitors, investigates and attempts to remedy adverse conditions.  Having the State involved in determining what the P&A will do and how the P&A will function is a clear conflict of interest.

Additionally, it is our understanding that the Administration is considering retaining a role in the governance of the reconfigured nonprofit P&A through board member appointments and, perhaps, other means.  We strongly oppose the Governor playing such a role in the P&A.  In her December 13, 2011 letter to Roger Bearden of CQC, Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD), regarding the findings of the review of the PADD program, noted that the gubernatorial appointment of the CQC Chair and Commissioners and the influence of the political structure on the PADD program called into question the independence of the current P&A.  Should the state insist on having a role in the governance of the P&A, we believe the ADD will have grounds to continue to voice identical concerns about the independence of the newly designated P&A entity.

We also have serious concerns about the Syracuse University proposal and consequently any role they may play with a newly designated P&A.  While we haven’t been afforded the opportunity to evaluate the proposals, Syracuse University published a document online that we reviewed.  From the document that we have seen, Syracuse University’s proposal would not assure that we have an independent, aggressive and comprehensive P&A entity that is accountable to the disability community.  Briefly, we are concerned that:

  • Statewide disability-led organizations were not consulted and included in the development of the Syracuse University proposal and the materials we have seen do not address how the broader disability community and our disability-led organizations will work with Syracuse’s proposed model in any way beyond identifying our needs for assistance with community organizing;
  • The Syracuse University proposal inappropriately minimizes the role of systemic litigation.  This is a primary function of the P&A.  In addition, Syracuse University proposed that students and volunteers can be as effective as lawyers who have devoted their careers to the study and practice of disability law. This premise is clearly absurd;
  • The established indirect rate for Syracuse University is astronomical, potentially three times what an independent, mission-driven, disability-led non-profit organization would use for those functions, diverting precious and needed resources for advocacy on behalf of people with disabilities to the University;
  • By selecting board members for the P&A, Syracuse University disempowers the disability community and potentially subjects the P&A to influence from the University and its donors; and
  • Ultimately, the Syracuse University proposal embeds the P&A within an academic establishment instead of within the disability community where it belongs.

Given the issues we have identified with the Syracuse University proposal, we are deeply concerned that these negotiations could be seen as an effort to minimize the independence and effectiveness of the P&A in New York.  More serious questions could also be raised.  Disability Advocates, Inc. sued New York State under the Americans with Disabilities Act and the Olmstead decision regarding the institutionalization of people with mental health disabilities in adult homes.  Efforts by the State to fund a competing organization whose proposal minimizes the role of systemic litigation could be considered self-serving or – worse – retaliation for DAI’s work in enforcing the ADA.  Indeed, after the creation of the current P&A system under the Commission on Quality of Care, CQC established DAI in the late 1980’s to serve as the statewide entity focusing on systemic litigation and advocacy. The role of DAI has always been to provide back-up to the smaller subcontracting agencies which focused on individual representation and to identify and pursue systemic litigation on issues impacting a broad class of people with disabilities. As DAI has successfully served in this role for decades, in addition to providing all related P&A services, it would be incongruous to now claim DAI is in need of assistance in fulfilling the mission which was set for it by the current P&A itself.  To avoid such concerns, we call upon the State to move forward in designating Disability Advocates, Inc. as the P&A entity, so it can work with the disability community to develop the necessary organizational and governance structures and programmatic priorities.

Moving forward, we expect that New York will have a statewide, autonomous, self-governing, disability-led organization serving as the P&A entity.  There is much work to do in achieving this.  We are ready to work with Disability Advocates, Inc. to identify and vet candidates for the board of directors so that the leadership of the P&A understands and supports the disability community’s efforts around critical issues, including opposition to forced treatment, institutionalization, segregated employment, inappropriate surrogate or unilateral provider decision-making, and physician-assisted suicide.

Ultimately, we can develop a strong governance model that assures the P&A is accountable to the disability community.  Again, we oppose the Governor or Syracuse University having any authority to select board members of the P&A entity, either initially or in any on-going manner as we see this as a clear conflict of interest, and it also undermines our efforts to have an autonomous, self-governing, disability-led organization serving as the P&A entity for New York.

We also expect that the P&A entity will do comprehensive, aggressive systemic litigation and advocacy built on priorities developed by the disability community.  Ms. Lewis stressed in several instances the need for increased substantive and meaningful public input regarding priority setting of the P&A. The process through which the State has considered the re-designation has completely lacked transparency, let alone public input at this juncture.  Furthermore, the prior public input by the disability community, which overwhelmingly endorsed the proposal of DAI, has been ignored.

Now, more than ever, we need aggressive advocacy on behalf of people with disabilities.  There are a myriad of issues that need to be addressed, but comprehensive and aggressive advocacy by the P&A can impact Olmstead compliance in New York, assuring that the right to live in the most integrated setting becomes a reality for New Yorkers with disabilities, as Governor Cuomo has stated is his priority.  It can also provide important advocacy on behalf of people with disabilities as we transition systems for providing long term services and supports into new models of managed care.  When the new Justice Center for the Protection of People with Special Needs was proposed, concerns were raised about the lack of independence of oversight of the developmental disability, mental health and other service systems, and the creation of administrative remedies rather than involving law enforcement in cases of abuse and neglect. This lack of independent oversight underscores the critical need for an independent P&A to complement the work of the new Justice Center. Indeed, the new Justice Center has no jurisdiction over nursing facilities, and the P&A would therefore serve as the only independent oversight entity for residents of these facilities.

A statewide, autonomous, self-governing, disability-led organization serving as the P&A entity also creates an opportunity for the P&A to leverage the substantial expertise we have in our disability-led organizations across the state in this important work.  There are models across the country where P&A entities work in true partnership with disability-led organizations in every aspect of the P&A’s work.  In New York, we have a variety of disability-led organizations that have demonstrated expertise, including expertise in policy analysis and advocacy on disability issues.

We understand that we have raised a significant number of issues and respectfully request an opportunity to meet with you to discuss them further and identify how the Administration can support disability-led organizations to not only participate in the decisions that affect our lives, but support us as leaders in making those decisions.  Please contact Bruce Darling of NYS ADAPT at 585-546-7510 or by email at