What follows are examples of P&A outreach, enforcement, and legislative activities related to advance directives.

Outreach Activities

Numerous P&As distribute documents designed to educate consumers, lawmakers, the courts and professionals about the specific psychiatric advance directive options in their state. Just a few of these P&As include: California, Florida, Kansas, Kentucky, Maine, Maryland, Michigan, Minnesota, Montana, New Mexico, New York, North Carolina, Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, and Wisconsin.

The Minnesota P&A manual on advanced psychiatric directives for health care is illustrative of the types of information these documents include. The P&A prepared two separate manuals: one for clients and one for service providers. Both manuals contain similar information, packaged differently to address the unique concerns of each audience. Specifically, the manuals cover: 1) what a psychiatric advance directive is and a sample; 2) reasons why an individual might consider preparing one; 3) specific information about the Minnesota advance directive law; 4) suggestions for the types of information an individual might include in a directive and a worksheet to help individuals identify issues to consider, 5) recommendations of communications to have with a proxy and others about your directive; and 6) tips for increasing the likelihood that the directive gets enforced.

Another frequent form of outreach is to offer training on advance directives to individuals and groups, such as those described below.

The Florida P&A is in the early stages of establishing advance directives pilot projects, in four geographically diverse counties. Each project will involve:

1) a stakeholder advisory group comprised of consumers, local providers of community mental health services, representatives of state mental health programs, drop-in center staff, mental health advocacy and consumer run organizations, the P&A and legal aide representatives.

2) training 10-15 individuals from that advisory group about state law concerning advance directives for mental health.

3) trainees identifying three consumers who are interested in and likely to need an advance directive in the future who they will accompany to a day-long training on developing a directive.

4) consumers providing copies of their directive to their chosen proxy, and anyone else they select. If in the future their directive is not honored the P&A will open a case to determine why and seek remedies.

5) data collection and evaluation by an independent outside agency after one year to identify successes and problems with the current state law and the training. It is hoped that individuals who are trained will continue to train others, and that the data collected by the project will provide incentive for state providers and others to promote advance directives for mental health.

The New York P&A trained the Mental Health Legal Division of the New York Supreme Court. This division is particularly important to educate because it provides free representation to individuals with mental illness regarding retention in a mental health facility and involuntary outpatient commitment.

The New Mexico P&A provided training to the state Department of Mental Health and to the consumer board and staff of the HMO that provides behavioral management supports.

The Wisconsin P&A developed a video to accompany their trainings on advance directives. The video instructs consumers how to complete a directive, and addresses many questions consumers may have regarding content and enforcement.

The Kentucky P&A runs a program focused on individuals called “Making Our Own decisions.” As part of this program, in 2002 alone, the P&A trained over 500 people at 22 therapeutic rehabilitation programs about state law covering psychiatric advance directives. Following this training, 50 people sought additional assistance from the P&A to create a directive. Once the directive is completed the P&A provides a copy to the individual and keeps a copy in a central advance directive registry maintained at the P&A office. These individuals are also given a wallet sized card that notifies police and hospital staff of the existence of the directive and how to contact the P&A to obtain a copy. The P&A collaborates with other disability rights agencies in Kentucky to provide information about the assistance the P&A will provide.

The Kansas P&A leaves time following presentations on advance directives for audience members to have private appointments and discuss individual concerns.

The Oregon P&A runs a program to assist individuals with mental illness who are about to be paroled from out of state correctional facilities to identify community services and understand their treatment rights. One support this project offers is training on advance directives and support with development or enforcement if requested.

Enforcement Activities

In 1998 TASC/NAPAS surveyed P&As seeking information about the biggest barriers to psychiatric advance directives as an effective tool for consumer empowerment. The vast majority responded that hospital staff’s refusal to enforce directives greatly weakens effectiveness; to compound the problem many consumers choose not to complete a directive because they doubt it will be enforced. When a directive is ignored, individuals are often left with no means of enforcement, since private attorneys are expensive and often not familiar with psychiatric advance directives. For this reason, P&A enforcement of advance directives is particularly useful.

Often just the threat of legal action is all that is required to obtain compliance by hospitals. This was the case for Cathy Jones, a client of the Texas P&A. Ms Jones prepared a mental health advance directive indicating medications she preferred, those she was allergic to, and those she objected to. She used certified mail to send copies of her directive to her clinic and the state hospital. She was subsequently admitted to the state hospital and injected with medication she objected to, despite the fact that she wore a Medic Alert bracelet identifying her allergy to the medication and that she verbally told her treating physician and staff that she had an advance directive.

Ms Jones called the Texas P&A, who contacted the ward nurse and asked if she was aware of Ms. Jones’ directive. The nurse found no directive in Ms. Jones’ file and reported that the hospital did not have a system for ensuring that directives sent to the hospital were available to staff. The P&A sent a letter to both the hospital supervisor and the director of state mental health facilities demanding that psychiatric advance directives be honored and that the state hospital implement a policy by which patients’ declarations are discovered and honored upon admission. The legal counsel of the state mental health director responded immediately, confirming procedural changes to handle situations involving declarations in the future. The P&A is engaged in follow up to ensure the new procedures are implemented.

P&As must always attempt to enforce client problems without court intervention. Sometimes, however, it is necessary to seek judicial enforcement. Below are examples of P&A use of the courts to demand enforcement of psychiatric advance directives.

The Massachusetts PAIMI program has assisted numerous clients to draft advance directives and enforce their directives. For one client the P&A worked closely with her public defender to obtain a positive state Supreme Court ruling concerning when an individual can revoke a directive.

The Vermont P&A brought the first case seeking to enforce a psychiatric advance directive in federal circuit court. The P&A is seeking to uphold the decision of the Federal District Court that the state psychiatric advance directives law discriminates against people with disabilities in violation of the ADA. Specifically, the law allows doctors to ignore patient’s advance directive not to be given involuntary psychotropic medications, yet doctors are not allowed to ignore an advance directive for any other disability group or override any other type of treatment decision.

Legislative Activities

In some states an advance directive statute exists, but it specifically prohibits or limits the use of a directive to cover mental health care decisions. P&As in those states are working to ensure that advance directives are equally available for individuals seeking to make decisions in the event of a mental health crisis. Below are examples of P&A legislative activities.

The Michigan P&A learned from numerous clients that some state hospitals were circumventing their duty to enforce psychiatric advance directives by refusing to declare individuals "incompetent," without a finding of which a directive is not triggered. The Michigan P&A is working with several mental health self-advocates in the state to introduce legislation in the state mental health code that would fix this and other flaws in the advance directive law.

The Alabama P&A has provided training to the state Department of Mental Health and Mental retardation on advance directives law. Additionally, the P&A provided recommendations to the Department of Mental Health for increasing consumer control and informed consent offered by the state advance directive.

Since 1999 the Montana P&A has made it a priority to assist individuals to voluntarily complete advance directives and to offer trainings on the state law. Interest in these directives grew as consumers’ battled attempts by the state to increase enforcement of involuntary outpatient commitments and to amend the law to allow faster commitments. These state attempts have been quashed.

In 2003, the policy environment in Montana is finally shifting, with the state seeking to cap admissions to the state hospital. On the bad side, the shift is coming at the same time as huge cuts in mental health services. On the good side, the P&A is hoping to take advantage of the states’ search for low cost mental health services by introducing an advance directive statute as a means to divert individuals away from commitment and state hospitals. The P&A will also emphasize that advance directives promote self-determination and crisis planning.

Since 2000, the Maryland P&A has served on a state task force charged with studying the desirability of involuntary outpatient commitment. In 2001, the task force issued a report to the legislature strongly opposing involuntary outpatient commitment. Instead the task force recommended the use of mental health advance directives and funding for a broader array of community mental health services. The task force drafted a bill to amend the state Health Care Decisions Act to add a Psychiatric Advance Directive, which passed in 2001. In educating the legislature about the role of advance directives for mental health, the P&A was a strong voice to successfully explain the need for the directive to be revocable at any time by the individual.

In addition, throughout 2002, the Maryland P&A worked with a coalition of advocacy organizations to encourage the state to develop a statewide crisis response team to prevent suicides, homicides, unnecessary institutionalizations, arrests and detentions. All the services in this system would be voluntary and would involve a communications center, mobile crisis teams and short-term follow-up services, such as assistance preparing an advance directive.

The Washington P&A worked with a variety of disability agencies, providers, consumers, family members, elder law attorneys, professors, state legislators, and researchers to create a psychiatric advance directive. Part of the P&A's responsibilities included researching the advance directive laws in other states to answer questions related to enforceability, revocability, compatibility with living wills, and liability of providers for failure to follow the directive or for

injuries sustained when following directives. The state passed a statute allowing psychiatric advance directives and in 2002 the P&A made it a priority to assist individuals who have trouble enforcing a psychiatric advance directive.

Advance directives are not the ultimate answer to prevent involuntary treatment, but it is one tool that is not expensive and not hard to enforce. Directives have been shown to decrease involuntary treatment, increase communication between doctors and patients, and contribute to the quality of individual mental health supports. For these reasons, P&A will continue to provide outreach, training, and enforcement assistance.