Introduction

House Joint Resolution 614, patroned by Delegate DeBoer, agreed to during the 2001 General Assembly Session, established a select committee to study the system of providing substitute consent to persons with mental disabilities (Appendix A). The study resolution was introduced at the request of the Virginia Association of Community Services Boards (VACSB).

Background

After the General Assembly enacted legislation in 1999 (5B 1224) to strengthen the human rights' protections for consumers of mental health and mental retardation services, a limited population of consumers in the community with mental illness or mental retardation who are unable to make decisions for themselves and who have no guardian, authorized representative or available family member, were left with no one to make decisions for them.

Very often, these consumers need medical and dental care that may not be of an emergency nature, but that significantly affects their comfort, health and safety. Prior to 1999, the director of a community services board could serve as a legally authorized representative and consent to treatment. Although it is possible to obtain judicial authorization for treatment (§ 37.1-134.21) the process is expensive, time-consuming and cumbersome. The time that it takes to get a hearing, especially in rural areas, can be detrimental to the consumer's health and well-being. Recent regulations promulgated by the Board of Mental Health, Mental Retardation and Substance Abuse Services allow for a "next friend" to serve as a substitute consent maker. However, in order to be a "next friend" there must have been a pre-existing relationship between the parties. A method is needed to authorize urgent and emergent medical and dental services in a timely manner so that the needs of consumers are met with regard to and respect for their human rights.

Committee Activities

The committee heard from the VACSB, the Virginia Guardianship Association, the Department for the Aging, and the Department of Mental Health, Mental Retardation and Substance Abuse Services. A number of other state agencies and advocacy groups followed the work of the committee.

The committee asked that information be collected on (i) the number of people in facilities without a legally authorized representative, (ii) the number of persons with mental disabilities who are unable to give consent served by community services boards and are without a guardian or legal authorized representative, (iii) the number of times that community services boards have faced situations where consumers have needed urgent or emergent medical or dental treatment and there was no one to authorize treatment and (iv) descriptions of those situations.

The VACSB conducted a survey to respond to this request and to determine the extent of the problem. Twenty-seven of the 40 community services boards responded. The survey results indicated that 916 people fell in the category of being unable to give informed consent themselves and had no guardian or family member able to give consent for them. Three hundred forty-seven of those people needed urgent or emergent medical care within the last year. For 165 persons there was no problem, often because the provider was willing to treat without obtaining informed consent. For the remaining 182, the lack of substitute consent presented a problem.

It was noted that those consumers who have no one to give consent are often persons who have been recently released from state mental health and mental retardation facilities. As more persons with serious disabilities are released from institutions into the community, the lack of a mechanism for substitute consent will be an increasing problem.

A representative of the Virginia Guardianship Association advocated for the expansion of the Public Guardian and Conservator Program (VPGCP), stating that the most direct and expedient method to address the need for more substitute decision makers for this portion of the population would be to expand the VPGCP throughout the Commonwealth, with special emphasis on regions where public mental hospitals and residential facilities are located. The VPGCP was established in 1994 when the General Assembly appropriated funding to explore the feasibility of a publicly funded program. The cost of providing public guardianship services is approximately $2,500 per person, annually. The protection provided to the individual by appointment of an accountable public entity governed by statute and regulations far exceeds other stopgap measures. It is estimated that a high percentage of public guardianship costs are recovered by a reduction in the cost of medical and social services for persons receiving public guardianship services.

The Department for the Aging's administrator of the VPGCP stated that Virginia's nine programs were selected from 17 good proposals. The programs are administered by a variety of agencies and are rigorously monitored by the Department for the Aging. Because state funds are not sufficient, many of the nine entities subsidize the program. The VPGCP serves 212 persons and it is estimated that statewide there are 2,288 additional persons who are in need of public guardianship services. These numbers include persons who are elderly as well as persons with mental disabilities.

An evaluation of the program by the Center for Gerontology at Virginia Tech, which was completed subsequent to the committee's deliberations, is attached as Appendix B.