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Protecting Those Who Need it The Most: Does New York Need to Rethink its Regulation of State Institutions for Persons with Disabilities?

This fall, the State of New York paid a 5 million-dollar settlement to the family of a 13-year-old boy with autism after a state worker crushed him to death. The boy, Jonathan Carey, was in an institution that was overseen by the state’s Office for People with Developmental Disabilities (“OPWDD”). The institution clearly violated the Office’s regulations, including the duty to report, record, and investigate every complaint of abuse and mistreatment, as well as procedures for background checks.

Since the initiation of the lawsuit and the barrage of media attention (including a New York Times exposé this summer) Governor Cuomo replaced the Commissioner of the OPWDD, and the state passed a law giving parents access to reports of alleged abuse involving their children. The OPWDD has increased terminations for abusive employees; has implemented cross checks with child abuse registries, sex-offender registries, and criminal databases; and they have also begun online report cards. In addition, the agency has hired an Investigations Chief, required real-time reporting to a central database, and instituted an “early alert” system to track program quality and to disclose organizations with “substantial” issues.

However, given the disabled population’s vulnerability to abuse, it is worrisome that state will be relying on internal investigations when the secrecy of such internal review has recently allowed for horrendous abuses.  The system needs more external pressure, and N.Y. Code Title 14

§ 624, regarding “reportable incidents,” could easily include specific requirements for notification of and involvement by the parents, guardians, or advocates of disabled residents in incident reporting and response.  Currently, the regulation states that the primary function of incident reporting is to enable “executives, administrators and supervisors” to become aware of problems and to fix them.  However, buy-in by parents—those who have the greatest personal stake and therefore the most drive to act—would provide additional assurance that abuses will not recur once media pressure has subsided and litigation has come to an end.

Currently, the mandatory mechanisms for outside monitoring are insufficient to provide accountability in the agency’s response to abuse.  N.Y. Code Title 14 § 624.7 requires a “Standing Committee” to review and monitor reportable incidents and allegations of abuse within every state-certified facility. However, there is no requirement that the standing committee include people from outside the organization. A physician, physician’s assistant or nurse practitioner must be available “for consultation to the committee,” and the participation of a psychologist on the committee is merely “recommended.” To ensure that the fox is not guarding the henhouse, there should be a requirement for at least one person on the standing committee to come from outside the organizational structure. The additional oversight surely outweighs any privacy concerns. Many parties could fill this role, including a parent or guardian; someone from a disability advocacy group; or an unaffiliated health or mental health professional. We have seen that it is an insufficient check for the organization to monitor itself, and this is a free way to provide substantive external review.

Likewise, I would suggest a duty that the regulations do not contemplate.  In the case of Jonathan Carey, the federal government barred his facility from accepting new residents financed by Medicaid due to chronic problems.  Yet the Careys, like the parents of other residents, had no idea.  There should be mandatory notification for the guardians of current residents when a facility has been barred from accepting federal funds due to continuing abuse.  Although the state is working on an “early alert” system, their system would only make the information available on a list that parents would need to actively and repeatedly seek out.  In such severe cases of abuse, guardians should have a right to immediate and direct notification, so that they can chose to take action to protect their children from harm.  It is simply unjust to lull them into a false sense of security by showing state certification and then failing to inform them when that certification is no longer accurate.

Thus, with minor revisions, the regulations for “reportable incidents” could become an effective tool to ensure the safety of people with disabilities in the state of New York.  However, the state must recognize that in addition to the agency and facility employees, they need a seat at the table for the parents of residents with disabilities.  Only then can OPWDD fulfill its obligations to this vulnerable population.

–Emily Goldman is an editor for MJEAL.

The views and opinions expressed in this blog are those of the authors only and do not reflect the official policy or position of the Michigan Journal of Environmental and Administrative Law or the University of Michigan.

[1] Danny Hakim, $5 Million Payment to End Suits Over Death of 13-Year-Old Boy in State Care, N.Y. TIMES, Sept. 21, 2011, available at (last accessed Nov. 6, 2011).

[2] N.Y. COMP. CODES R. & REGS. Tit. 14 § 624 (2011).

[3] N.Y. COMP. CODES R. & REGS. Tit. 14 § § 633.5(b)(3) (2011), which requires at least two personal references other than relatives. One of the state workers involved in the incident had only listed his sister and his wife.

[4] Danny Hakim, Abused and Used:  A Disabled Boy’s Death, and a System in Disarray, N.Y. TIMES, Jun. 5, 2011, available at (last accessed Nov. 6, 2011).

[5] Hakim, supra note 1.

[6] Press release, NYS Office for People With Developmental Disabilities, OPWDD Reports on Strengthening New York System of Care for People With Developmental Disabilities (Oct. 24, 2011), available at (last accessed Oct. 30, 2011).

[7] Press release, NYS Office for People With Developmental Disabilities, OPWDD Reforms Investigation Process, Announces New Investigations Chief (Sept. 6, 2011), available at (last accessed Oct. 30, 2011).

[8] Press release, NYS Office for People With Developmental Disabilities, OPWDD Acts to Publicly Inform Individuals & Family Members of Troubled Nonprofit Providers (Jul. 08, 2011), available at (last accessed Oct. 30, 2011).

[9] N.Y. COMP. CODES R. & REGS. Tit. 14 § 624 (2011).

[10] Id.

[11] N.Y. COMP. CODES R. & REGS. Tit. 14 § 624.7 (2011).

[12] NYT original article.

[13] See Press Release, supra note 8.

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