Albany Law Sch. v. N.Y. State Office of Mental Retardation

• Decision Date: 26 April 2012
• Citation: 968 N.E.2d 967,945 N.Y.S.2d 613,19 N.Y.3d 106,2012 N.Y. Slip Op. 03227
• Parties: In the Matter of ALBANY LAW SCHOOL et al., Respondents–Appellants, v. NEW YORK STATE OFFICE OF MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES et al., Appellants–Respondents.
• Court: New York Court of Appeals Court of Appeals

19 N.Y.3d 106

968 N.E.2d 967

945 N.Y.S.2d 613

2012 N.Y. Slip Op. 03227

In the Matter of ALBANY LAW SCHOOL et al., Respondents–Appellants,

v.NEW YORK STATE OFFICE OF MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES et al., Appellants–Respondents.

Court of Appeals of New York.

April 26, 2012.

Eric T. Schneiderman, Attorney General, Albany (Victor Paladino, Barbara D. Underwood, Andrea Oser and Nancy A. Spiegel of counsel), for appellants-respondents.

Disability Advocates, Inc., Albany (Jennifer J. Monthie, Timothy A. Clune and Cliff Zucker of counsel), Patterson Belknap Webb & Tyler LLP, New York City (Christopher Jackson of counsel), and Albany Law School Civil Rights & Disabilities Law Clinic, Albany (Bridgit Burke of counsel), for respondents-appellants.

Paul Kietzman, Delmar, for NYSARC, Inc., amicus curiae.

Wilmer Cutler Pickering Hale and Dorr LLP, New York City (Fraser L. Hunter, Jr., David F. Olsky and Edward Sherwin of counsel), for National Disability Rights Network and others, amici curiae.

OPINION OF THE COURT

GRAFFEO, J.

Petitioners Albany Law School and Disability Advocates, Inc. provide protection and advocacy services to individuals with developmental disabilities pursuant to contracts with the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities, an agency that oversees New York's protection and advocacy system. After receiving a complaint regarding the discharge practices of respondent New York State Office of Mental Retardation and Developmental Disabilities—now the Office for People with Developmental Disabilities (OPWDD)—petitioners requested access to the clinical records of all individuals residing at two OPWDD facilities to investigate whether they were being denied the opportunity to live in less restrictive settings. Relying on Mental Hygiene Law § 45. 09(b) and § 33.13(c)(4), petitioners asserted that they were entitled to unrestricted access to the clinical records.

OPWDD disagreed, taking the position that the two Mental Hygiene Law provisions cited by petitioners incorporate the records access procedures established in the federal Developmental Disabilities Assistance and Bill of Rights Act, which were designed to balance the privacy rights of developmentally disabled persons with the need of protection and advocacy organizations to access residents' personal information in order to investigate complaints and advocate on behalf of those individuals. In accordance with federal law, OPWDD agreed to provide records pertaining to residents for whom petitioners had obtained authorization, either from the individuals themselves or their legal representatives (which, in OPWDD's view, included actively-involved family members), and for individuals who were unable to provide authorization and did not have a legal representative.

This case requires us to decide two significant issues that implicate competing interests with regard to the clinical records of developmentally disabled persons. First, whether Mental Hygiene Law § 45.09(b) and § 33.13(c)(4) provide petitioners with unqualified access to clinical and other records or whether the state statutes embrace the access provisions in federal law. And second, whether actively-involved family members can be deemed legal representatives for purposes of the federal and state access provisions. We conclude that section 45.09(b) and section 33.13(c)(4) must be read in accord with federal law and that actively-involved family members can possess sufficient decision-making authority to qualify as legal representatives under the pertinent regime.

I.

In 1975, in response to the deplorable conditions revealed at New York's Willowbrook State School and other state-operated facilities, Congress enacted the Developmental Disabilities Assistance and Bill of Rights Act (the DD Act). ¹ The DD Act was designed to encourage states to safeguard the rights of individuals with developmental disabilities by offering federal funds to states with an effective protection and advocacy (P & A) system ( see Virginia Office for Protection and Advocacy v. Stewart, 563 U.S. ––––, ––––, 131 S.Ct. 1632, 1635–1636, 179 L.Ed.2d 675 [2011] ). To qualify for funding, a state's P & A system must, among other powers, “have the authority to investigate incidents of abuse and neglect of individuals with developmental disabilities if the incidents are reported to the system or if there is probable cause to believe that the incidents occurred” ( 42 USC § 15043[a][2] [B] ). The P & A system must also be able to “pursue legal, administrative, and other appropriate remedies ... to ensure the protection of, and advocacy for, the rights of such individuals” ( 42 USC § 15043[a][2][A][i] ).

In 1984, Congress amended the DD Act to require states, as a condition to maintaining eligibility for federal funding under the program, to grant their P & A systems access to the records of individuals with developmental disabilities subject to certain requirements ( seePub. L. 98–527, § 142, 98 U.S. Stat. 2662, 2679–2680 [98th Cong., 2d Sess., Oct. 19, 1984], amending 42 USC former § 6042[a] ). The 1984 amendment gave the states until October 1986 to implement these access requirements ( see id.). In particular, the DD Act currently describes four sets of circumstances under which a P & A entity must be given access to the clinical and other records of developmentally disabled persons.

First, the P & A organization is entitled to “immediate access,” without the consent of any person, if it “determines there is probable cause to believe that the health or safety of the individual is in serious and immediate jeopardy” (42 USC § 15043[a][2][J][ii][I] ) or if the individual dies ( see42 USC § 15043[a][2][J][ii][II] ). In these emergency or death situations, Congress determined that facilities must provide immediate, full record access in order to protect the health and safety of the resident or, in the case of death, to timely commence an investigation.

Second, in nonemergencies, the facility must grant access to the P & A organization if authorization is given by the individual or the individual's “legal guardian, conservator, or other legal representative” (42 USC § 15043 [a][2][I][i] ). Not all developmentally disabled persons residing in facilities are incompetent to participate in medical and therapy decisionmaking or decisions relating to training or residential choices. Federal law acknowledges the right of these residents who are consistently involved in the management of their own care to be notified and to authorize or deny access, recognizing the reasonable privacy expectations of these individuals in their personal information and their right to make decisions regarding their own treatment and welfare.

Third, a P & A entity is to be afforded access where (a) the individual is incapable of granting authorization; (b) the individual does not have a legal representative; and (c) the system has received a complaint with regard to the individual's treatment or, as a result of monitoring activities, there is probable cause to believe that the individual has been abused or neglected ( see42 USC § 15043[a][2][I][ii] ). Clearly, the DD Act recognizes the imperative need of P & A organizations to protect and advocate on behalf of residents who are not capable of providing authorization and lack a legal representative. Even without receiving a complaint, if P & A personnel have probable cause to believe that a resident has been neglected or abused—reflecting the importance of on-site monitoring activities by P & A organizations—they may demand record access to investigate the circumstances and safeguard the resident at risk.

Finally, access is mandated if (a) the individual has a legal representative; (b) the P & A entity has received a complaint with regard to the individual's treatment or, as a result of monitoring activities, there is probable cause to believe that the individual has been abused or neglected; and (c) the P & A entity has contacted the legal representative and offered assistance but the representative has failed or refused to act on the individual's behalf ( see42 USC § 15043[a][2][I][iii] ). In nonemergency situations, the records of individuals who lack the ability to consent but who have a legal representative (accordingto OPWDD, this is fairly common) must therefore be disclosed if the legal representative grants authorization (category two) or if the legal representative fails or refuses to act in response to a complaint or probable cause (category four). Again, if the situation is such that the health or safety of the resident is in “serious” or “immediate jeopardy,” the immediate access provisions of category one would instead apply.

In short, in amending the DD Act, Congress acknowledged the necessity of allowing P & A entities record access in order to fulfill their “watchdog” role. Yet, Congress also considered the right of competent individuals or legal representatives acting on behalf of developmentally disabled persons to participate in the decision to disclose their records—some of which may contain sensitive, personal information. Therefore, federal law established a carefully calibrated system that took into consideration both the privacy interests of developmentally disabled persons and the need for P & A organizations to examine records in order to pursue their statutory functions.

Following the adoption of the DD Act, the New York Legislature created what is now known as the Commission on Quality of Care and Advocacy for Persons with Disabilities (the Commission) to oversee the care, treatment and delivery of services to individuals who are developmentally disabled (L. 1977, ch. 655; see also Mental Hygiene Law art 45). The Commission is empowered to review the operations of the Department of Mental Hygiene, which includes OPWDD, and to investigate complaints pertaining to the treatment and care of individuals who...