Guardianship is an important issue for individuals with intellectual and developmental disabilities, and their families and caregivers. We offer the following information as a primer on guardianship and The Arc Oregon programs.
In Oregon, parents are recognized as the natural guardians of their children, with or without a disability, until the children reach the age of 18. At that time, natural parental guardianship ceases by law, whether or not the child has a disability. Any person attaining the age of 18 is recognized as a competent adult by law, and remains so unless found incapacitated by a court of law.
Without the court’s determination that an individual is incapacitated, the individual retains all his or her constitutional rights and is responsible for making his or her own decisions. These rights include the rights to decide residence, consent to or reject medical care, sign a contract, marry, and make lifestyle choices.
The Arc Oregon believes individuals should remain independent whenever possible, and that guardianship should only be considered as a last resort. With that in mind, there are specific issues to be considered before seeking guardianship for any person.
A person can be found to be incapacitated under Oregon Revised Statute (ORS) 125.005 if he or she is an adult whose “…ability to receive and evaluate information effectively or to communicate decisions is impaired to such an extent that the person presently lacks the capacity to meet the essential requirements for the person’s physical health or safety. ‘Meeting the essential requirements for physical health and safety’ means those actions necessary to provide the health care, food, shelter, clothing, personal hygiene and other care without which serious physical injury or illness is likely to occur.”
DETERMINING THE NEED FOR A GUARDIAN
Whether or not an individual needs a guardian depends on many factors. Perhaps the most significant is the individual’s ability to give informed consent. Informed consent is a person’s agreement to allow something to happen, based on full disclosure of the facts needed to make the decision intelligently. Many persons with intellectual/developmental disabilities are capable of independently making, or significantly participating in, many decisions that affect them. The imposition of guardianship can greatly reduce or eliminate this freedom to participate by transferring decision-making powers to the guardian.
Even those persons who are apparently unable to make significant decisions on their own may not require guardianship if they have trusted support from family, friends or interested others who are willing and available to counsel them. Unless they are totally incapable of giving input to decisions that affect them, persons with intellectual/developmental disabilities are likely to benefit from assistance and counseling, which is less formal than guardianship. This allows them to retain their essential civil rights while still benefiting from the guidance of those who care.
It is important to remember that persons with intellectual and/or developmental disabilities are capable of increasing their potential throughout their lives, particularly if they are allowed to do so in ways which are least restrictive to their personal liberties. For the vast majority of individuals, this means living in a supportive community environment where they are able to learn from a variety of social situations. This learning process may provide a knowledge base sufficient to decrease the need for guardianship.
Considerations for Parents
There are a number of factors that may lead parents or others interested in the welfare of adults with intellectual/developmental disabilities to seek guardianship.
Perhaps the most common for parents is the desire to establish some control over their child’s life. They may fear that their child is incapable of acting responsibly, or they may wish to exert what they feel is a positive influence over their adult child. Unfortunately, this is not always a valid or even an effective reason for establishing guardianship. Although legal authority is established upon the appointment of a guardian, the legal mechanism in itself cannot prohibit the protected persons from acting as they please.
Another common reason for establishing guardianship is to create substitute decision-making authority in case the protected person is unable to give informed consent. Consent is generally considered to be valid only if it is given by someone capable of recognizing the potential ramifications of his or her decision.
This dilemma often arises in medical situations in which physicians and other health care professionals are placed in the legally sensitive position of treating a person of questionable capacity and asking for informed consent. Some physicians, in this situation, will accept consent only from an adult, legally empowered by appointment as guardian, to provide substitute consent on behalf of the individual. The appointment of a Health Care Representative either by the individual or by the ISP team may be desirable and/or preferable over the expense of obtaining a guardianship. (The laws governing the appointment and responsibilities of a Health Care Representative are contained in ORS 127.505-127.660.)
Parents may also seek guardianship in order to control their offspring’s finances. They may fear the potential of an unscrupulous person taking advantage of him or her. They may also be concerned that he or she may make unwise purchases without fully realizing the consequences. Financial protection alone is generally an insufficient motive for establishing guardianship due to the protected person’s loss of fundamental rights.
If an individual’s assets consist primarily of payments from Supplemental Security Income, Social Security Disability, or other sources of governmental support, a representative payee-ship might be most appropriate. This is a mechanism that authorizes one person to receive payments allotted to another person who is deemed incapable of handling them properly. The Social Security Administration, Veterans Administration and some private pension plans have created payee provisions. Under payee-ship, a person is not declared by the court to be incapable of handling his or her property. The person remains legally capable of controlling all of his or her property and assets, except those subject to payee-ship.
Other parents may petition for guardianship to gain increased authority to demand better and more appropriate services for their daughter or son. This may or may not be an effective strategy, depending on a number of factors outside of the guardianship itself, such as the overall relationship between parents and service providers. Guardianship does allow access to a protected person’s records, and that fact alone may be a driving force for parents to seek guardianship.
Whatever your motivation as a parent, it is imperative that you explore all available options and seek legal advice before making any final decision on how to proceed. Our GAPS Program Director is very happy to answer any questions that you may have about guardianship options. You may also want to visit the Guardian/Conservator Association of Oregon or the National Guardian Association websites, or our Frequently Asked Questions page for additional information.