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Date: July 1, 2011

Recently we attended the Fourth Annual Future Planning Conference in Albany, New York sponsored by NYSARC, Inc., and the Schoharie County ARC. Programs were presented by attorneys and other professionals from the Office for People with Developmental Disabilities (OPWDD), the Mental Hygiene Legal Service, local service providers, and by a panel of local Surrogate Court Judges. Ed Wilcenski gave a presentation on Financial Planning and Government Benefit Eligibility with James Moragne, Director of Revenue Support for OPWDD’s Rome, New York office. This year the Conference devoted a number of programs to health care decision making and end of life decisions by people with developmental disabilities and mental retardation.

The case of Terri Schaivo captured the attention of the nation for months. Before her death, Terri had been in a persistent vegetative state, and her parents and her husband disagreed on whether her feeding tube should be removed. Ultimately, and after years of litigation and appeals, a Florida court agreed with her husband, finding sufficient evidence that she would not have wanted to be sustained in that condition by artificial means. While reasonable people can disagree on whether Ms. Schaivo’s parents or her husband had the better argument or point of view, we can all agree that similar situations can be avoided with proper advance planning and discussion with family members. Advance planning is just as appropriate for individuals with disabilities as it is for those without.

In New York, our Public Health Law contains a sample “Health Care Proxy” form that allows an individual to designate who will make medical decisions in the event the individual reaches the point where she can no longer do so. This form is available on the Department of Health website. In addition, our laws recognize the right of an individual to determine those circumstances when life support should be removed or withheld. When in writing, this latter statement is traditionally called a “Living Will.” Unlike the Proxy, there is no statutory form or other State-sanctioned model for a Living Will. In our office, our practice is to draft the Living Will as a separate document.

When we counsel clients in this area, we encourage them to consider a number of issues, including:

  • Who will serve as the healthcare agent and successor agent?
  • If the client has identified one or more people in the family who do not share the client’s values, does the client want to expressly deny those people any authority to make healthcaredecisions for the client?
  • Under what conditions, if any, does the client want to authorize the withdrawal of lifesustaining medical treatment?
  • Does the client’s authorization to withhold or withdraw life-sustaining medical treatment extend to artificial nutrition or hydration (feeding tube)?
  • Does the client have a known physical ailment that should be described along with the treatments that the client wants or rejects?
  • Does the client have any specific preferences concerning healthcare facilities or providers?
  • Does the client have any moral or religious convictions that dictate the use or rejection of certain forms of medical treatment?
  • Does the client want to make anatomical gifts (organ donation) or give the agent the power and authority to make these gifts?

In light of the privacy rules in the Health Insurance Portability and Accountability Act of 1996 (HIPAA), we draft our Health Care Proxies to include authorization under HIPAA for the agent to obtain confidential information concerning the principal’s mental and physical condition. This will allow the agent to talk with the client’s physicians and review the client’s medical records. Although many clients are accompanied by their children (or, in the case of a client with a developmental disability, his or her parents or other caregiver) to routine medical appointments, in an emergency situation, it is important to ensure that a designated agent will be able to talk with the treating medical professionals without delay.

Advance health care directives are important for everyone, including individuals with disabilities. When the disability is cognitive in nature, however, there are other considerations. The first involves the question of capacity, i.e., whether the person with the disability understands what she is doing in signing such a document. The consensus among the professionals at the Future Planning Conference was that a person with a cognitive disability must be able to understand that she is delegating the authority to make medical treatment decisions; it is not necessary that she fully understand the nature of any particular medical procedure. In addition, when the person executing the Proxy resides in an OPWDD certified residence, then there are also state regulations which govern the identity of the witnesses to the Proxy, as well as a few other procedural requirements which must be followed.

Issues involving end-of-life decisions are more complicated to explain and understand, and all agree that this can be an especially difficult conversation to have with a person with a cognitive disability. Some presenters at the conference recommended that a capacity evaluation accompany  the signing of a Living Will by an individual whose capacity might later come into question.

Finally, for an individual with a diagnosis of mental retardation who would never be competent to make medical decisions, including end-of-life decisions, New York allows for the appointment of a Guardian to make these decisions on the individual’s behalf through proceeding filed under Article 17A of the Surrogate’s Court Procedure Act. This proceeding requires the submission of two medical affidavits that support the finding of permanent disability and the grant of medical decision making authority to the Guardian.

In our Special Needs Estate Planning practice, we find that this decision, i.e., the decision to pursue guardianship or to rely on the execution of a Health Care Proxy and Living Will, is an especially difficult one for families, especially when the family member with the disability has only a mild cognitive limitation. On the one hand, the individual with the disability should have the right to make her own decisions if she is able, just like those of us without a disability. On the other hand, because the individual must have the requisite “capacity” to execute a Proxy and Living Will, the legal viability document may later come into question if there is evidence that the individual with the disability did not fully understand what she was doing.

We encourage our clients to talk through these issues, and if in the end they choose to pursue legal guardianship, then we remain willing and able to assist them. Whichever route they choose, we know from watching the last days of Terri Schaivo’s life that it is better to meet these questions head on, and in advance.

This newsletter is not intended as a substitute for legal counsel. While every precaution has been taken to make this newsletter accurate, we assume no responsibility for errors or omissions, or for damages resulting from the use of the information in this newsletter. If you would like to be removed from our distribution list, please email us or call us at (518) 881-1621