Guardianship and Autism: A Crossroads in Life

Your ASD child is turning 18 and will technically be an adult. If you feel that your child will be incapable of making adult decisions on their own behalf, you can pursue a legal guardianship so that you will retain the rights to make those decisions for them. A guardianship ends or severely limits your child’s rights and freedoms. State laws require that less restrictive alternatives are explored before guardianship is ordered.

Autism Speaks’ website explains:

“Adult guardianship is a court proceeding to appoint an individual to make decisions about a person’s health, safety, support, care, and place of residence. The procedure for obtaining a guardianship varies from state-to-state, but generally the process is initiated by an interested party filing a Petition with the court that states probable cause as to why a guardianship is necessary. The proposed ward and other interested parties – such as the proposed ward’s spouse, children and relatives – will receive a copy of the Petition, and the court will appoint an independent evaluator to assess the ward and make a written recommendation about the ward’s capacity. A hearing is held after the completion of the evaluation where the court will make a determination regarding the necessity of a guardianship. The ward has a right to hire counsel to represent him or her or the court will provide counsel.”

Once a guardian is appointed, the court may limit or terminate the ward’s right to consent to medical treatment, establish a residence, change domicile or vote. A guardian of the person may exercise most of the ward’s personal rights with the exception of the right to vote. The guardian must make decisions that are always in the ward’s best interests, cooperate with the conservator, if any, and encourage the ward’s participation in personal decisions so he or she may become more independent and regain the ability to manage his or her own personal affairs. The guardian must also file an annual report with the court to advise of the ward’s personal status.

Guardianship rules vary a great deal from state to state. The length of the hearing process also varies. Some states take away almost all of a disabled person’s rights while others allow them to retain some of them. Florida, for example, has Guardianship Advocacy which is similar to Guardianship but doesn’t require a capacity hearing.

Most states have passed a law called the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). Florida, Kansas, Texas and Michigan prove the exception. This law makes it easier for the state to transfer guardianship from one state to another if the person moves.

A Power of Attorney is an alternative to Guardianship that allows a disabled person to choose a person to make critical decisions concerning finances or health care for them. Unlike guardianships, Power of Attorney can be canceled at any time.

There is also the Representative or Protective Payee who is appointed to manage benefits such as Social Security.

Financial options also exist to assist your disabled child through life as well:

ABLE Account – If your child became disabled before they turned 26, an Achieving a Better Life Experience (ABLE) account can be setup. An ABLE account allows for up to $15,000 per year to be deposited into a tax-free savings account without affecting eligibility for government awarded benefits. While it can be easy to setup, the account can’t hold more than $100,000 and there are other hidden pitfalls that should be carefully considered before selecting this as an option.

Special Needs Trusts – A Special Needs Trust also called a supplemental needs trust allows for your special needs child (before or after they turn 18) to receive gifts, an inheritance, or other funds to provide supplemental care, life-enhancing services and equipment beyond that what the government provides. The Trust directs the funds so that the funds are not considered to belong to your child when they apply for government programs, such as Medicaid and Social Security Income (SSI). The 3 main types of Special Needs Trusts include first-party special needs trust, third-party special needs trust, and pooled trust. For more information click here.

Life Insurance – If you don’t have funds to put into an ABLE Account or a Special Needs Trust, life insurance is an option to consider. If you do establish a Special Needs Trust for your child, the life insurance policy can be directed to payout to the Trust without being subject to estate taxes or probate. It is important to make sure you choose a life insurance plan that provides your child the same quality of care for the remainder of his or her life.

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Guardianship is an emotionally charged issue that requires soul searching. Parents want what’s best for their adult ASD child. They want them to be protected, yet given space to grow and become more self sufficient.

But issues arise. The special needs individual may not want a guardian. An individual facing a guardianship petition has the right to an attorney and under some state laws, that attorney must advocate for their “best interests” as determined by a court-appointed guardian ad litem or GAL (A GAL is an individual appointed by the court to represent the best interests of a child or incapacitated person involved in a case in superior court). If the client of the GAL disagrees, their legal representative is essentially fighting for them to lose their case.

ASAN or the Autistic Self Advocacy Network strongly believes it is wrong to “subject guardianship” upon a special needs individual. They believe everyone should have the ability to make their own decisions. They point out that neurotypical people rely upon the input and feedback of others when making decisions in their lives, and they should be able to as well. A movement called Supportive Decision-Making is gathering force across the nation.

It began in 2013 with a young woman with Down’s Syndrome named Jenny Hatch. Jenny was a high school graduate, worked at a thrift store she loved and volunteered in political campaigns. At her parents’ request, a court put her in temporary guardianship, placing her in a group home where they took away her cell phone and laptop and wouldn’t let her return to work or socialize with friends. Her parents filed for permanent guardianship, wanting her to remain in the group home that they felt was the safest environment for her.

After a year of litigation she won the right to make her own decisions through Supported Decision-Making, a process in which a team of allies help the disabled person to make key decisions about their life. She became a national and international hero for the rights of the disabled and speaks publicly of her experiences. A growing number of states now have Supported Decision-Making laws to give the disabled maximum freedom while retaining a network of support for them throughout their lives.

You can find the states that have Supported Decision-making laws at: www.supporteddecisionmaking.org/50_state_review

There’s a wealth of information to consider and assimilate as a parent facing the prospect of your ASD child becoming an adult. You’ll want to review the laws of your state, weigh your options and seek legal advice. Each ASD person has their own constellation of strengths and challenges and it is understood that every parent wants the best for their child. None of us has a crystal ball into the future, but if we did, we would want to see our adult child living their best life possible. In this spirit, we take the hard steps to blaze a trail forward for them.

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