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A guardianship – or conservatorship depending on the state – is a legal action that grants an adult legal power to make decisions for another person. Guardianship is a legal means for protecting adults who cannot take care of themselves, make decisions that are in their own best interest or handle their assets.

Generally, the natural guardianship of a minor child terminates at the age of 18, and the parent is no longer the child’s legal guardian regardless of a disability. Some adults with disabilities may not be able to give reasoned and well-informed consent when making a decision. Depending on the severity of the adult’s disability, setting up a guardianship may be an option.

However, keep in mind guardianships can be relatively inflexible as compared to less intrusive options such as trusts (described later in this section). When considering the different types of available financial planning tools, families will need to consider some of the following questions:

  • Is the individual able to work? If so, to what extent?
  • Is the individual able to manage small amounts of money on a monthly basis?
  • Does the individual now or in the future need residential care?
  • Can the individual live with a friend, relative or group home in the future?
  • What are the estimated costs of these arrangements?
  • What are the person’s recreation, leisure time and social needs?
  • Does the person’s disability involve the possibility of deteriorating health and more involved health care needs and costs?
  • What will the transportation costs for this individual be now and in the future?

The following is a brief description of the types of guardianships generally available:

  • A Guardian of the Person is responsible for monitoring the care of the ward.
  • A Guardian of the Estate or Conservatorship should be considered for persons with disabilities who are unable to manage their finances and who have income from sources other than benefit checks or have other assets and/or property.
  • A Limited Guardianship may limit the guardian’s decision making to certain areas, such as decisions about medical treatment, to allow the ward to continue making his/her own decisions in all other areas.
  • A Temporary Guardian or Conservator may be appointed in an emergency when certain decisions must be made immediately.

A letter of intent is an important accompanying document for guardianships. A letter of intent describes the person’s disability history, his/her current state and what future needs may be. This document is important as it provides guidance to the trustee regarding the family’s wishes for the family member with TSC in the future. To the maximum extent possible, involve the adult in the writing of this letter, so the letter truly represents his or her interests. Completing the letter of intent should be done as soon as possible and updated regularly to reflect any changes in a person’s health status or situation. This ensures the letter is ready at any moment should a parent become ill, become disabled or die. Although it is not legally binding, it provides direction for the person(s) who will care for the adult with special needs in the future.