HD59 - The Rights of Parents of Persons with Mental Disabilities

  • Published: 1993
  • Author: Department of Mental Health and Mental Retardation and Substance Abuse Services
  • Enabling Authority: House Joint Resolution 129 (Regular Session, 1992)

Executive Summary:
Over the last thirty years, extraordinary changes have occurred in the mental health field. Changes in treatment philosophies, the availability of new medications, and shifts in funding priorities within mental health systems have moved the traditional focus away from inpatient, facility-based care and toward community-based care. The language of diagnosis and service delivery has also changed dramatically. Some obsolete, offensive terms were discarded completely. Other phrases, such as "mentally ill," "mentally retarded" or "handicapped" have been replaced by the more inclusive and less stigmatizing term "disabled". In an attempt to be sensitive to the ongoing evolution of the language in this field, the Committee has decided that all those who make use of services traditionally covered under the rubric of "mental health" will be generally designated in this report as "consumers."

During this same time period, a heightened awareness of human rights has led to expanded consumer participation in planning their own treatment and involvement in structuring the programs and systems from which they will receive services.

Changing perceptions of the consumer's role often proceeded from changes in laws. Courts recognized previously undefined rights, legislatures granted new and specific protection to consumers, and administrative agencies developed extensive regulations elaborating procedures for invoking those legal rights. Outdated legal presumptions that took away choices from those labeled mentally ill or mentally retarded were replaced by a new perspective: we now assume that all people retain their ability to make life decisions despite their disabilities, unless the law specifically prescribes for others to decide in their behalf.

"While consumers have undoubtedly benefitted from the legal and social recognition of their rights to autonomy and self-determination, the proper roles of the significant other people who continue to assist, support and provide care for them have become less clear. Though parents and families no longer have the automatic legal power they may have wielded in the past to speak for consumers, they continue to function as the strongest advocates and best representatives of the desires and needs of disabled family members. Yet, they sometimes report an attitude of indifference on the part of service providers toward their concerns and suggestions. Consequently, those who feel the most compelling moral responsibility for the care of persons with mental disabilities feel least able legally to ensure that appropriate care is given.

In recognition of this dilemma, a group of parents approached the Virginia General Assembly in 1992 with a request for clarification of their rights - as parents. In response, the Assembly adopted House Joint Resolution No. 129 [HJR 129 is included as Appendix A]. The Resolution recognized the need for clearer definitions of and publicity for the rights of parents, guardians and other authorized representatives of persons with mental disabilities. It directed the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS), with consultation from the Office of the Attorney General, to study the appropriate roles and rights of parents of mentally disabled persons who receive services within state programs. Specifically, the Assembly mandated: 1) a review and determination of rights currently accorded to parents of the mentally disabled under state laws, rules, regulations and administrative policies; 2) an identification of problems or deficiencies in those laws, rules, regulations and policies; and, 3) recommendations for change.

Following the Assembly's direction, the DMHMRSAS convened a Study Committee that included representation from a broad spectrum of the mental health community. In addition to DMHMRSAS staff members, participants included parents of persons with mental disabilities, representatives from consumer groups, state and private facility administrators, human rights advocates, members of community service boards, and staff from the Department for Rights of Virginians with Disabilities. Legal consultation was provided by the Office of the Attorney General and the Committee was chaired by an attorney from the Institute of Law, Psychiatry and Public Policy of the University of Virginia. [A list of Committee participants is included as Appendix B].

The Committee met formally four times during the summer of 1992 to explore questions raised by HJR 129. The Committee's conclusions are contained in the body of this report.