On November 10, 2006 the Tennessee Chapter of the American Association on Mental Retardation (AAMR) hosted a day long discussion of “the rights, realities and risks involving consent, personhood and conservatorship in people with intellectual disabilities.”

The discussion was wide-ranging and open to questions from the audience. It was led by a panel of experts including parents, a gentleman with mental retardation, a doctor, an ethicist, an attorney, and providers.

Much of the discussion focused on the provision of outside medical services for residents of institutions such as developmental centers and ICFs/MR. In this litigious age doctors are wary of treating patients if they cannot determine easily that the patient is capable of giving fully informed consent. Absent conservatorship papers that clarify who is authorized to approve medical procedures many doctors are forced to refuse even routine treatment to persons with MR. Although touched upon briefly, there was little in-depth discussion of legal alternatives to conservatorships for the provision of medical services.

In the discussion of home and community-based alternatives to institutions an interesting philosophical sentiment was expressed that we should be mindful not force people out into the community for the sake of integration. Of course, with Tennessee dead last in the provision of home and community-based services there is little reason to believe that institutions such as the developmental centers and ICFs/MR will become extinct. Rather our greater concern should be on providing quality alternatives to institutions so that people have a variety of choices to consider.

Finally, there was an extended discussion of the judiciary and its role in overseeing conservatorships. Most surprising for some was the fact that a family member who is appointed conservator is not truly the person with final authority over a ward. Rather it is the court that is the final arbiter of what is best for a person with MR and not the conservator. That is why it is so important that judges learn more about people with MR and their capabilities. We can’t risk a judge assuming that person with MR automatically needs a conservator.
It was also clear that judges, family and many others need a better education about conservatorships, especially our obligation to tailor conservatorships so that they grant no more authority to a court and conservator than absolutely necessory. It seems that far too many individuals with MR are granted full conservatorships rather than limited conservatorships that would preserve a greater degree of freedom and choice for the individual.

Coming away from the conference it is clear that all parties involved need to begin thinking about ways to preserve greater freedom and choice for individuals with MR. A good start would be to focus on the following:

  • Better education for individuals and families regarding alternatives to conservatorships for the purposes of health care decisions.
  • Improved education for the judiciary that focuses on tailoring conservatorships to ensure the greatest independence possible for a ward and to ensure that conservatorships are not needlessly granted for individuals who could better be served by other legal instruments. To do this, there should be procedures in place to ensure an independent assessment is made of someone who receives a conservator.
  • Increased alternatives to life in institutions and greater support for home and community-based services.

Perhaps the next conference can focus on action steps to move us toward guaranteeing that individuals with MR are not denied the right to make choices regarding how they live.