Bar News - August 14, 2009
The Dignity of Risk: the NH Supreme Court’s Affirmation Of the Right to Live a Life of One’s Own Choosing
Most of us take for granted that we may make our own decisions, those that impact the quality of our lives, such as deciding where we want to live and with whom we choose to spend our time. Even as we age, we expect to direct the course of our lives, but for individuals with disabilities and for the elderly receiving state-funded services, the right to make these decisions is not always clear. In an important NH Supreme Court decision, Petition of Gretchen Parker, the Court recently affirmed the rights of individuals with developmental disabilities to direct their lives. In doing so, the Court provided some useful guidance to those dealing with issues of choice and risk.
Gretchen Parker is a 29-year-old woman with a developmental disability. Although she requires support services, she is her own guardian and is able to make informed choices about her lifestyle, associations, and opportunities. She receives state-funded residential and day services through her local area agency, the state-funded agency that provides services to individuals with developmental disabilities. These services include providing Gretchen a supportive living environment, and assisting her in engaging in employment and other meaningful daily activities. In 2006, Gretchen lived with residential care providers Jen and Vince, along with her housemate Richard, who also has a developmental disability. She loved living there – it was her home. But in November 2006 the area agency notified her that she would have to move, on the grounds that it was "too risky" for her to continue to live with her housemate, because of behavior he had exhibited at his day program.
Gretchen was very fond of Richard and had never had any problem living with him, so she appealed the area agency’s decision to the Department of Health and Human Services, Administrative Appeal Unit (AAU). The area agency argued that allowing Gretchen to remain with Richard was "outside the bounds of reasonable risk" under the regulations governing developmental services, and the AAU hearings’ officer agreed. The hearings’ officer, however, restricted review of the evidence to that which existed at the time of the area agency’s initial decision, instead of conducting a full de novo review of the evidence required by federal and state law.
Gretchen challenged the AAU ruling, and in a unanimous decision, the NH Supreme Court agreed with Gretchen, reversing the decision of the area agency and the administrative hearings’ officer. First, the Court clarified the rights of all individuals taking appeals to the AAU to present all evidence, without limiting it to that which was before the agency making the initial determination: in all administrative appeals before the AAU, the Presiding Officer is "obligated to conduct a full evidentiary hearing, independently review the evidence, and make a determination on the facts and the law."
Additionally, Chief Justice Broderick, writing for the Court, ruled that Gretchen Parker had every right to decide where and with whom she could live, even if there was some risk involved: "The risk of harm is part of everyday life and reasonable people commonly choose to engage in activities that include exposure to some risk." Recognizing that people with disabilities should be able to make similar decisions about their own lives, the Court stated, "When making life decisions, persons with developmental disabilities may voluntarily expose themselves to circumstances that involve some reasonable risk without jeopardizing the funding for particular services available to them."
The Court highlighted some of the core principles of New Hampshire’s law for services for people with developmental disabilities – RSA 171-A – independence and autonomy in decision-making, and the right of individuals to make choices weighing quality, safety, relationships, and factors most important to them because individuals "are best able to determine their own needs."
In 1972, Bengt Nirje introduced the world to the idea that individuals with disabilities should have a role in their own choices and that society should take actions that would enable them to have choices to control their lives and destinies. At around the same time, Robert Perske argued that normalization includes the opportunity to make and learn from mistakes, coining the phrase the "dignity of risk." When New Hampshire developed its statutory scheme in 1975, RSA 171-A, it had these principles in mind.
Recognizing that people with developmental disabilities and their families are "best able to determine their own needs," New Hampshire developed a framework for community care delivered through area agencies; this framework was intended to protect the rights of people with developmental disabilities and maximize their opportunities and the potential for self-sufficiency, choice, independence, and autonomy. New Hampshire’s statutory scheme was developed in response to the evolution of society’s understanding of the civil and human rights of people with developmental disabilities, and constituted a rejection of discriminatory or paternalistic attitudes and policies that had prevented people from living lives of their own choosing.
While there is a clear focus on self-determination, RSA 171-A, as well as federal laws and programs such as Medicaid, also requires the State to exercise its parens patriae protective role when the circumstances warrant. However, balancing the need and right to self-determination and autonomy with the government’s protective role is not relegated to circumstances of individuals with developmental disabilities.
With an aging population, this tension is increasingly seen in the context of elderly individuals deciding whether to "age in place" or to live out their final years in nursing facilities.
Nursing facilities, case managers, home health agencies, and state and local government entities, are working through the challenges they face in determining the proper course of action when an elderly individual with significant limitations wishes to remain in his/her home, or return home after treatment, when service providers or family members have safety concerns.
Although there is not the same single, comprehensive statutory scheme for the provision of services to the elderly that provides the same emphasis on individual decision-making and self-determination, statutory provisions such as those in RSA 161-F, RSA 464-A, and RSA 151, provide considerable guidance. The Parker analysis of what constitutes "reasonable risk" and the importance of choice and self-determination, provide additional and salient guidance on whether an individual can choose to remain at home, despite some risk, without jeopardizing the funding for supportive services.
The past 40 years have marked significant advances in the civil rights of individuals with disabilities, giving rise to advancements such as the right to education in public schools, to equal treatment, to living in the least restrictive environment, to humane and adequate treatment, and to full integration into community life. At the heart of this matter is the concept of self-determination, which incorporates the basic principles of freedom for all people, and includes the principles of autonomy, respect, choice, and opportunity. Petition of Gretchen Parker is one more step in the in the right direction.
Amy Messer is the legal director of the Disabilities Rights Center (DRC) and Adrienne Mallinson is a staff attorney there. They represented Gretchen Parker in her appeal at the New Hampshire Supreme Court.
The DRC is a statewide non-profit organization dedicated to the full and equal enjoyment of civil and other legal rights by people with disabilities. It is New Hampshire’s designated Protection and Advocacy agency and authorized by federal statute "to pursue legal, administrative and other appropriate remedies" on behalf of individuals with disabilities.