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None of us want to think about dying, or even about making difficult medical or psychiatric treatment decisions for ourselves or our loved ones. We hope to live for at least one hundred years as is now statistically possible and to remain in full mental and physical health at the same time. Thus, we have an excuse to procrastinate and not plan for our future. Nevertheless, planning for the inevitable, whether death, or the need to make other medical decisions, including psychiatric treatment if foreseeable, makes for a more comfortable environment for ourselves and our families and promotes our autonomy by protecting our wishes. It should be one of our priorities.

One way to plan is to set out written instructions regarding our wishes if we become incapable of making these decisions. These written instructions are called advance directives. A person with a mental disability, if s/he has the capacity to make an informed decision, can complete an advance directive and should do so to promote his/her autonomy, since people with disabilities have historically been subjected to both overtreatment, undertreatment, and exclusion from the decision making process.

Throughout history, people with disabilities have been denied the opportunity to make decisions about their lives on the presumption that they are incapable of making informed decisions. More recently, public policy, case law and statutory amendments now emphasize that individuals with disabilities should be afforded every opportunity to make decisions for themselves, or at least be active participants in the decision making process, whenever and to whatever extent they are capable of so doing.

In New York State, the statutorily preferred means to provide an advance directive to plan for future medical and psychiatric care is the healthcare proxy, as authorized by Article 29C of the Public Health Law. This law provides for the individual to appoint another individual to make healthcare decisions on his or her behalf in the event of future incapacity or when your doctors believe you are no longer able to make such decisions. Your agent, the individual you appoint, will not be legally liable for treatment decisions made in good faith on your behalf.

People with mental disabilities can execute a healthcare proxy if they have the mental capacity to do so. The law provides for a presumption of capacity unless a guardian of the person has been appointed or a court of law has determined that the person is not capable of appointing a healthcare agent. To promote a finding of capacity, persons who have a guardian appointed or any person with a mental disability can ask a mental health or developmental disability professional to conduct a mental status exam and document in the clinical record that the person was of sound mind and capable of making such a decision. Residents of mental hygiene facilities must have a specialized professional witness the execution of a healthcare proxy.

Mental Hygiene Law AS9.60 (c)(8) as added by Chapter 408 of the Laws of 1999 (Kendra's Law) provides that a court shall take into account any directions included in a healthcare proxy in determining a written treatment plan for court-ordered assisted mental health outpatient treatment. The healthcare proxy form, together with a helpful and explanatory set of questions and answers, is available from most hospitals, doctors, and the Department of Health (DOH) and from the DOH web site: www.health.state.ny.us/nysdoh/hospital/english3.htm#appointing

Suggestions for specific instructions regarding psychiatric treatment are available from www.bazelon.org/advdir.html however, the NYS healthcare proxy format must be used in this State if you choose to appoint an agent to act on your behalf. A booklet developed by Disability Advocates, Inc., may be requested for guidance in this area by writing Disability Advocates, Inc., 5 Clinton Square, 3 rd Floor, Albany, NY 12207. Sample language to choose from is available with the DOH sample form.

Unless you limit the healthcare agent's authority, the appointment of an agent under the healthcare proxy law allows your agent to act on your behalf for all medical decisions, other than artificial nutrition and hydration if your wishes are unknown, and to get access to necessary information when you are unable. Hospitals, doctors and other healthcare providers must follow your agent's decisions as if they were your own. You can provide instructions to your agent right on the form or defer to him or her to make decisions for you as s/he considers in your best interests. You should appoint someone you trust to carry out your written instructions or to act in your best interests and to be an advocate for you. Give copies of the proxy form to your agent, your doctor and anyone else you believe should be informed.

Nevertheless, in the event that you disagree with a determination that you are incapable of making medical decisions or with a particular proposed treatment, your objection to the capacity determination or to the particular treatment prevails unless a court determines you lack capacity to make healthcare decisions.

The New York State healthcare proxy law allows for revocation of the healthcare proxy, Public Health Law Section 2985, as well as changing your agent or a change in any of your treatment instructions. In accordance with this law, even a revocation by an individual whose capacity is questionable will suffice to revoke the healthcare proxy unless a court of law determines that the person is incompetent to make the decision to revoke. To revoke or make a change, merely execute a new proxy form.