If couples have any motivation to plan, it comes from concern about the welfare and continuity of care for their child with special needs.

As a parent of a child with special needs, you are probably very involved in the medical care, education, and personal issues of your special child. But, when your child reaches the age of 18 years, you will no longer have the decision-making rights you are accustomed to having; you do not automatically continue to be your child’s guardian. The law presumes that all adults are competent to make decisions, unless proven otherwise, regardless of whether or not they have a disability. Therefore, in order for you to continue to have parental authority after your child reaches 18 years of age, you must file for "guardianship."

Guardianship is a legal relationship between a competent adult and a person over the age of 18 years who is unable to make decisions for him or herself. The disability may be caused by mental illness, developmental disability, accident, age, or other causes. The court makes the decision to assign guardianship based on the individual’s ability to handle personal decisions, money, property, and other similar matters. The disability itself may not be reason enough to declare someone incompetent and require guardianship; it is the incapacity of the individual instead.

The guardian is given the right to make decisions on behalf of the individual with a disability. When the court gives the rights to the guardian, they are taken away from the individual. Since this causes deprivation of liberty and dignity, the law requires that guardianship be imposed only when alternatives are proven to be ineffective. Typically, the guardian is given the same rights as a parent has over a minor child, however, the guardian does not have to use his/her own funds and the guardian is not liable for the acts of the individual with the disability.

Although every state has its own specific laws on guardianship, most states have the following four types:

• Guardian of person or property - When an individual needs assistance with personal issues (i.e., where to live, consent for medical treatment, etc.) they may be appointed a guardian of person. A guardian of property, on the other hand, typically has power strictly over the individual’s property or assets and not over personal issues.

• Full Guardianship - This type of guardianship includes power over an individual’s person and property. It is the most common type of guardianship, and is also the most restrictive. Full guardianship is typically for an individual who is severely disabled and is unable to make informed decisions.

• Limited Guardianship - Limited guardianship is used so that an individual can retain as many rights as possible. With this form, a guardian can only have decision-making rights over areas where there is evidence that the individual with the disability is not competent to make on his own (some individuals can make decisions in some areas of their lives). For example, a guardian may be given rights solely to consent for medical treatment. Since the law is interested in maximum independence for all individuals, limited guardianship is usually preferable when possible.

• Temporary Guardianship - Some states allow guardianship for a limited amount of time. This type of guardianship only applies to temporary situations that are caused by drugs, momentary illness, or special medical situations. Once the problems have been resolved, the guardianship ends.

The Probate Code has a recommended order of preference for appointing a guardian:

1. The individual or organization named by the person in need of a guardian

2. The spouse

3. An adult child

4. A parent - or person nominated by the will of a deceased parent

5. Any relative with whom the person in need of a guardian has lived for more than six months prior to the filing of the petition

6. A person nominated by the individual who is caring for the prospective ward (incapacitated adult or paying benefits to him/her (5-311)

7. State government agency

Guardianship should be given to a person who plays a significant role in the individual’s life. It should be a person who respects the dignity of the individual with the disability. Guardianship can be given to two individuals (known as co-guardianship) if they wish to share the duties.

If the parent chooses to be the guardian, consideration must also be given to what will happen to the child upon the parent’s death. A sibling, family member, or close friend would likely be the next best choice, however, if there is none available to provide guardianship, there are two types of guardianships available: public and corporate. Public guardianship is provided by individuals who have an agreement with the state or local government agency to provide services. Unfortunately, public guardians generally have large caseloads, making the time allotted to each individual minimal. Therefore, public guardianship is usually considered when all other options have been exhausted. A corporate guardianship is an incorporated agency that provides guardianship by assigning a professional staff member or volunteer to carry out guardian responsibilities. Parents can contract with a corporate agency to start services upon their death or when they are no longer able to care for their child.

To begin guardianship proceedings, a Petition for Guardianship must be filed with the court in the county in which the individual lives (if the individual lives in a residential school, it can also be filed in the county in which the parents live). The petition involves areas such as the nature of the incapacity, the reason for guardianship, names of the proposed guardians, and information regarding the individual’s property. Once the petition has been filed, the court may appoint a temporary guardian (ad litem) to determine whether there is a need for guardianship and the proposed guardian is appropriate. The temporary guardian also meets with the individual with the disability to determine if an attorney is needed to represent the individual. A written report is then submitted to the court.

At the hearing, the individual must be present, unless there is a reasonable justification for his or her absence. The proposed guardian is also usually present. The court will review the petition and report provided by the temporary guardian (if applicable), will listen to any testimonies, and then will determine whether a guardian is necessary. Should it be decided that it is a necessity, an order appointing a guardian is entered and the type of guardianship is also determined.

The guardianship stays in effect until the court orders termination. Anyone, however, may petition the court at anytime to modify or terminate the guardianship, including the individual with the disability.