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Turning 18: Options for When Your Child Needs Decision-Making Help
Once individuals turn 18 years of age, they are presumed capable of making sound judgments for themselves, and they become legally responsible for their own decisions. Some individuals with Autism Spectrum Disorder (ASD), however, may not be able to make all decisions for themselves, or they may need assistance to do so. In most cases, family members lend support to the individual with ASD informally. They may provide housing, transportation, and a social structure, or even be a co-signer on a bank account. Sometimes, however, more control is needed to help keep the individual with ASD healthy and safe. In these cases, there are several options available to parents or other caregivers to help support individuals with ASD once they turn 18.
It is important to think about your child's ability to care for him or herself long before he or she turns 18. If your child has an Individualized Education Program (IEP), a transition plan may be put into place as early as age 14. As your child gets closer to age 18, you will have a better understanding of your child's future ability to make important decisions that can affect his or her health and welfare. Beginning at age 17, you may want to consider the options of a Power of Attorney or guardianship, particularly if you are concerned about your child's ability to make good decisions about finances, health, and/or living arrangements. However, most individuals with ASD live with the assistance of their families and support networks and do not utilize either option.
Power of Attorney
A Power of Attorney is a written document in which an individual (called the principal) designates another person (known as the agent) to perform certain acts on the principal's behalf. The Power of Attorney is specific as to what acts the agent can perform, for example handling financial affairs or making medical decisions. Anyone 18 years old or older can consent to a Power of Attorney, but the principal (and the agent too) must be able to understand the document when he or she signs it. The principal can withdraw the Power of Attorney at any time.
A Power of Attorney may be a good idea if your child is capable of making most decisions for him or herself, but if you may need to intervene at times. For example, a financial Power of Attorney could allow a parent to pay bills, access bank accounts, and manage government benefits on behalf of the principal (though other forms may be necessary; for example, the Social Security Administration may require an Appointment of Representative form as well). A healthcare Power of Attorney might allow a parent to access medical information and make medical decisions on behalf of the principal. Without a healthcare Power of Attorney, parents are not allowed access to medical records of their adult children under the Health Insurance Portability and Accountability Act (HIPAA).
Although a Power of Attorney does not require court approval, it is a good idea to have a lawyer prepare the document. The lawyer will ask questions of your child to make sure he or she understands that the Power of Attorney gives you (or the agent you select) authority to act on his or her behalf. In order to execute the Power of Attorney document, it must be signed in front of a notary and two witnesses above the age of 18. You will need to provide proof of identity (for example, a state issued identification card) for both parties in order to have a document notarized. Banks and other entities may request a copy of the notarized document before allowing the agent to make decisions or conduct transactions on behalf of the principal. In 2015, new laws in Pennsylvania were implemented that required the first page of the Power of Attorney document to include statements indicating the the serious nature of signing this document. Mandatory statements include "It is possible for a principal to give the agent authority to give away all of the principal's property during the principal's life or to substantially change how the principal's property will be distributed at his or her death". These notices are meant to increase understanding for the principle and ensure the document reflects their intent with the agent.
Legal guardianship gives the guardian full or partial control over an individual's affairs. The purpose is to protect someone from neglect or injury by making or helping to make decisions about finances, health, and daily life. While guardianship provides important safeguards, it also deprives an individual of autonomy. In addition to being deprived of making many everyday decisions, in general, full guardianship deprives the person of the ability to vote and marry. It may also prevent an individual from being held accountable for committing a crime.
To obtain guardianship over an individual, the individual must be declared "legally incompetent" or "incapacitated" by a court. A legal proceeding will take place, and the court may appoint someone to represent your child to make sure his or her interests are protected and may require that other family members be notified of the guardianship petition. States set their own rules for guardianship, and therefore the process for obtaining guardianship varies depending on the state in which you live. In some states, the legal relationship between the guardian and the person in need of guardianship is called a conservatorship.
In Pennsylvania, to obtain guardianship over an individual, the individual must be declared incapacitated by the Orphan's Court. As defined by Pennsylvania, incapacitated means that the person's ability to receive and evaluate information effectively and to communicate decisions in any way is impaired to such a significant extent that the person is partially or totally unable to manage financial resources or to meet essential requirements of physical health and safety.
In most states, the party requesting guardianship must prove incapacity or incompetence by clear and convincing evidence, including expert testimony from treating doctors and others with a relationship with the individual or who have conducted evaluations. The guardianship process may take many weeks or months to complete. Because guardianship involves a court proceeding, most families hire an attorney to help with the petition for guardianship, which entails costs that may be prohibitive for some families.
You may choose to be your child's guardian, if you can show that you are capable of handling your child's affairs, or you may select (and perhaps pay) someone else to fulfill the role of guardian. In Pennsylvania and other states, even a corporation can be a guardian. Many states, including Pennsylvania, have residency requirements for guardians, which require them to live in the same state as the individual or have a co-guardian who does. If you or your child moves to another state, you may need to apply for guardianship there.
If guardianship is granted, the guardian must periodically file a report with the court that approved the guardianship. (Pennsylvania requires reports to be filed once a year.) Pennsylvania has created a Guardianship Tracking System (GTS) a web-based system to help file, manage, track, and submit reports. The report must provide an update on guardianship, including living arrangements, financial circumstances, social activities, and medical and psychological services. Each year the court can determine if the individual remains incapacitated. If not incapacitated, the court can enter an order discharging the guardian.
When appropriate, courts favor a limited guardianship, meaning that guardianship only applies to certain areas of an individual's life. This gives the individual control over areas he or she is competent in. When carving out a partial guardianship, it is especially a good idea to meet with a lawyer with experience in creating partial guardianship and who will be able to guide you in creating a plan that gives your child as much independence as possible.
While Power of Attorney and guardianship are sometimes necessary, they should never be used to undermine the right to self-determination of the individual with ASD. All efforts should be made to enable the individual to make as many choices as possible on his or her own, and, when restrictive measures are needed, the individual should still be included in life choices. Make sure you take into account the individual abilities as well as needs of your child, and craft a plan that will allow your child to be as independent as possible.