When Your Child Turns 18: A Guide To Special Needs Guardianship

Mother Child Down Syndrome

When someone turns 18, they become an adult and are expected to make the right to make decisions about their medical treatment, finances and life.

In order to make these decisions binding (in a legal sense), the person should be competent to understand the decision being made and the consequences of that decision.

What is Guardianship?

Guardianship is a legal proceeding in which someone (usually a family member) asks the court to find that a person is unable to manage his or her affairs effectively because of a disability. A guardian steps in the shoes of the person with a disability and makes the decisions for them.

The process to set up a guardianship can be long and expensive and is not a decision to be taken lightly. This article presents five things to think about when considering whether to seek guardianship for your child once he or she turns 18.

There are different types of guardianship depending on the person’s needs. Generally, there is a guardian of the person and guardian of the property and one person can serve as both.

A guardian of the person can make decisions about a person’s healthcare, housing, food, clothing, and other subjects that affect the person.
A guardian of the property makes decisions about a person’s money, income, property, public benefits and other financial matters.

1. Will your child need a guardian?

Appointment of a guardian is a serious issue. Guardians are appointed by the court and it can be difficult, costly, and time consuming to establish and maintain a guardianship.

Because the guardian makes all the decisions as ordered by the court, the individual under the guardianship loses a great deal of independence. He or she will no longer have the authority to make decisions about his or her personal life or property because that authority has been delegated to the guardian.

In general, a guardian should be appointed only if there are no less restrictive alternatives. A diagnosis of a mental illness or intellectual disability does not automatically mean that a person lacks the capacity to make decisions.

2. Alternatives to guardianship

Below is a list of some general alternatives to guardianship. These alternatives can be used alone or in whatever combination is necessary to support the person to live as independently as possible. Ideally, these choices will begin to be discussed as you, your child, and your child’s teachers and providers begin to discuss the transition plan from school.

Special needs trusts

A Special Needs Trusts can be very helpful for an adult with special needs. For more information about this topic check out my previous post: The Pros and Cons of a Special Needs Trust

Family guidance

If a family member is available to provide advice and help and individual with special needs make a decision voluntarily there may be no need for a guardianship. However, if the person is too easily influenced, there is a potential for that person to be taken advantage of and guardianship may be appropriate.

Assistive or Supported living services

If there are only a few areas where the person needs assistance, there may be programs, providers, or professionals who can assist with just those tasks. For example, if transportation is an issue, there are services available to take the person to and from medical appointments. There are various levels of services available to meet varying levels of need. Usually a case manager can help coordinate services for the person.

Durable power of attorney

If the person has periods where he would be considered competent, he can enter into a power of attorney which names one particular person to make certain types of decisions on his behalf.

Financial Representative 

Representative payees or joint ownership of bank accounts to help the person manage his or her finances.

3. Who should be named as guardian?

States usually have a preference for persons to be named guardian. For children with disabilities who turn 18, the preference is usually for the parents, or if parents are not available, an adult sibling or other adult family member. If no family members are able to serve as guardian, then a close friend. And if no friends are available, then the court can appoint a professional guardian.

Guardians are subject to court supervision, which provides a powerful tool to prevent the guardian from mishandling the person’s finances or taking advantage of them. Sometimes, especially with professional guardians, the guardian must post a bond (a special type of insurance that protects the person’s estate from mishandling).

In some cases, guardians can be reimbursed for their expenses and paid for their services from the assets of the person they are taking care of. Generally payments are made only to professional guardians, but a family member who has been appointed as guardian may, depending on state law, also seek compensation by making a request to the court.

When a guardian can no longer serve, the guardianship itself does not end. Rather, a new guardian is appointed by the court. In the case with a parent of a child with a disability, as the parent ages, he or she may no longer be able to care for their child. The guardian should consider who would replace him should he no longer be able to serve.

4. Obtaining guardianship through the court

A guardian is appointed by the court upon petition by an interested person. The petition contains all the basic facts including the petitioner’s relationship to the person to be under guardianship and a brief description of the disability and how it affects the person’s ability to make decisions. The petition should also include the reasons why the court should appoint a guardian. This may generally include an affidavit or certification from a doctor attesting to a person’s level of functioning.

There will be a hearing before a judge. The petitioner must present evidence of the need for guardianship. The petitioner usually must prove: that the person lacks sufficient understanding or capacity to make responsible decisions; that this lack of capacity is caused by a disability; and that no less restrictive alternatives are available.The petitioner must also show that the proposed guardian is fit to be appointed, is capable of carrying out the responsibilities of a guardian, and that no one of higher priority (for example a parent) is available.

Generally, for the hearing, two attorneys are involved (one representing the person asking the court to appoint a guardian and one representing the best interests of the person to be cared for. Witnesses such as the person’s doctor or other providers or friends or family may be called to provide information on the person’s level of functioning.

Anyone, including the person who is to be under the guardianship, can object to the appointment of a guardian in general, or to a specific choice that the guardian makes. There are different processes through different courts but generally, any objections involve a hearing and filing papers with the court.

5. Determining competency

To obtain a guardianship, a judge must determine that the person does not have the capacity to care for him or herself in some way. Determining capacity is important because the degree to which a person is capable of making an informed decision relates to which decisions he or she can make. Capacity is a fluid concept depending on the person, the circumstances, and the decision to be made. A person can be competent to make some decisions, but not others.

Usually, an affidavit, a statement written under oath, from a medical doctor attesting to the person’s level of functioning, decision-making ability, prognosis and diagnosis must be used to support a claim that a guardianship is necessary. However, depending on the state law, more evidence, like an evaluation by a psychologist, school performance records, prior medical records or testimony from the person and his or her support network may be necessary to establish the need for a guardian.

The standards differ from state to state so it is important to check the law where you live. In general, there must be clear and convincing evidence that a person lacks understanding to make or communicate decisions or is unable to manage his property and affairs effectively due to disability.

6. What are the powers and duties of a guardian?

The court will outline the powers and duties given to the guardian and those powers and duties will be only those necessary to provide for the demonstrated need of the person with a disability (i.e., for a specific type of decision, or of the person, of the property, or both).

There are some instances where the guardian must ask special permission from the court like in the case of a life-threatening medical treatment or changes in where the person will live (i.e., selling property or moving the person to a facility or group home).

The guardian usually must file a regular (usually annual) report with the court. The report allows the court to supervise the guardian’s actions, to verify the person’s needs are being met, and to question whether the guardianship should be modified or terminated. In the case of finances, the guardian must provide a record of everything done with the property under the guardianship order.

If a guardian fails to perform the duties of that position appropriately, she may be removed or subject to other court sanctions.

In Conclusion

It is important to keep in mind that laws governing guardianship can vary from state to state. The information in this article is general and not intended to present the rules for any particular state. Prior to seeking guardianship in your state, be sure to check the applicable laws or consult with an attorney specializing in guardianship issues.

For more information on guardianship check out The ARC,  NICHCYCincinnati Children’s Hospital and the Autism Resource Network of Indiana.

Do have Guardianship tips and resources? Tell us about it in the comments below.

Melissa Stuart

Written on 2012/10/16 by:

Melissa Stuart

Melissa Stuart is an associate attorney at Cohen & Malad, LLP in Indianapolis, Indiana. She graduated J.D., cum laude from Indiana University School of Law, 2011 and was Editor-in-Chief of the Indiana Health Law Review. Prior to joining Cohen & Malad, LLP, Melissa worked for several years at Riley Children's Hospital in the Christian Sarkine Autism Treatment Center as a Research Specialist.
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