Guardianship and People with Intellectual Disabilities

Who will look after my loved one? Does he or she need anyone to look after them? Some families rely on other family members or friends to handle this matter. Others enter into formal arrangements with individuals or advocacy organizations such as The Arc to provide this service. An advocate can offer advice and other assistance concerning the person who has special needs, but cannot make legal decisions.

Legal decisions are generally handled through a Guardianship or, in some states, a Conservatorship. These two terms are used interchangeably. A Guardianship is a court-approved legal relationship between a competent adult (known as a guardian) and a minor child or an adult who has been declared legally incompetent. It gives the guardian a defined degree of authority and a duty to act on behalf of the person in making decisions affecting that person’s life. The role of the Guardian is established by state law.

Guardianship is a legal, not medical determination. Parents are legal guardians only until their children reach the age of 18, regardless of disability. When a child becomes an adult at 18, he or she get all the legal rights and responsibilities of any adult. Only the courts have the authority to remove these rights. Parents who want to retain decision-making power must go to the courts to seek guardianship. A court makes this decision based on the person’s abilities to handle personal decisions, money, property, and similar matters. The incapacity (or legal inability) to handle these matters ¾ not the disability ¾ is grounds for a guardianship.

How do I decide if my child needs guardianship?

Appointing a guardian for someone is a serious matter. This legal status deprives the person of some rights and independence, and has the potential for abuse because of the power it gives one person over another. However, there may be reasons why a son or daughter with a disability may need a guardian. Some of the common reasons are:

  • Medical care or other services will not be provided unless there is a clear understanding about the person’s legal capacity to consent to treatment or services.
  • Parents or siblings cannot get access to important health records or other documents.
  • The person has assets he or she cannot adequately mange.

What are the different types of guardianship?

Guardian of the person or property – the individual needs a guardian to decide personal issues, such as where to live, consent for medical treatment, signing for services. The court will usually identify specific decision-making areas and frequently require periodic reports from the guardian about actions taken over the course of the year or other period.

Full Guardianship – this includes guardianship over all the person’s personal and property decision-making. It is usually a collection of all the powers and responsibilities and involves controlling every aspect of the person’s life. It is the most restrictive, although the person under a full guardianship still retains his or her basic civil rights. This type of guardianship is useful for individuals with a disability so severe that they are not capable of making informed decisions and should be used only after exploring the alternatives, including limited guardianship. Courts are most familiar with full guardianship as it is the most common.

Limited Guardianship – offering a middle ground, this guardianship is for persons with developmental disabilities who are competent but need some supportive assistance to make certain choices, such as where to live. Limited Guardianship provides only specific powers to the Guardian, rather than giving virtually complete control over essential life decisions for the person with special needs. These powers or rights often include the right to enter into a financial contract, choose an educational program, receive medical care, enter into marriage, and so forth. Each power is delivered to the Guardian in an “all or nothing” fashion, that is, with complete authority to make decisions in a selected area. For this reason, courts in many states authorize a mix of guardianships. For example, a person may need full guardianship of the estate but only limited guardianship over personal matters.

Temporary guardianship – some states allow guardianship for a limited time. The court may issue a “protective order” or temporary guardianship when a legal problem arises from a specific situation, giving another person, a public guardian,* or corporate guardianship program* the authority to handle that specific situation. When the problem is resolved, the order usually ends with no permanent guardianship. For example, medical or other treatment may be necessary because of questionable ability to consent, but once the treatment is provided the guardianship is reviewed to determine if it should be removed.

* These guardianships should be explored with a knowledgeable attorney as they generally involve state resources or incorporated agencies.

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