Autism guardianship is a decision with major repercussions; for some parents, however, it may seem like the only choice offering maximum protection for their almost adult child with developmental disabilities.
In most countries around the world a child becomes a legal adult on their 18th birthday; this is a fact most parents find terrifying. Thinking of your child making their own life altering financial and medical care decisions is not easy. For parents of neurodivergent children the stakes are even higher—especially those parents who still need to figure out which decisions their child is capable of making independently.
Guardianship under scrutiny
When an autistic child is approaching the age of majority, guardianship may be mentioned as an option to ensure the safety and wellbeing of the child. Should parents obtain guardianship and/or conservatorship if an adult child with autism spectrum disorder seems incapable of looking after themselves and making decisions about important matters like financial affairs? Full adult guardianship is not something courts regard lightly, it essentially means the person under guardianship—the ward—is stripped of many, in some cases most, of their legal rights to act independently.
Should a parent be appointed as the autistic child’s guardian, they may be exercising most of the ward’s personal rights. The court could terminate your child’s right to vote, make decisions about where they want to live, and limit their right to consent to medical care. While courts make every effort to ensure guardians act in their wards’ best interest, and encourage wards to participate in decision making, full guardianship is a drastic measure that will take away many of your child’s rights.
Adult guardianship and conservatorship was scrutinized by the media and public recently when pop star Britney Spears’ conservatorship ended after more than 13 years. The #FreeBritney social movement, fueled by her fans, was based on growing dissatisfaction with Britney’s lack of control over her own life. She was put under her father’s conservatorship in 2008 when she allegedly struggled with mental health issues.
Although many felt she needed guidance and probably help with making decisions at the time, why had the legal process stripped her of important rights for more than a decade? The case emphasized just how grave the consequences of court decisions impacting independence may be…unfortunately, for some individuals with a developmental disability, guardianship and conservatorship is sometimes granted without proper consideration of more appropriate alternatives.
Parents should consider gathering expert opinions from their child’s healthcare and education team, research extensively about guardianship and less drastic alternatives, and obtain help from a legal professional before approaching a court for petitions pertaining to guardianship or conservatorship.
A legal expert may suggest alternatives to guardianship that take the child’s strengths into consideration. If your child has the potential to function independently in certain areas they should not be deprived of an opportunity to enjoy some of the rights accompanying adulthood. Options like limited or partial guardianship or Supported Decision-Making may often be a more appropriate solution for individuals on the spectrum.
For parents with autistic kids, planning for the future should be a priority, long before the transition to adulthood draws near. Around the world, countries have their own laws and regulations, but in many a parent will no longer have access to (and any authority over) their child’s medical, financial, and educational information once their child turns 18. Plans should therefore be in place long before this milestone birthday is reached.
Age of majority; your child becoming a legal adult
Although the age of majority is higher in a few countries, generally a child is no longer considered a minor when they reach the age of 18. Both neurotypical and neurodivergent kids, for the most part, become emancipated from their parents at this age.
Parents may be caught off-guard by the implications of their loss of parental rights. A parent, involved in every aspect of their child’s life, could suddenly find themselves excluded from medical and financial decision-making. From taking care of almost every aspect of their child’s life, parents may be prohibited access to medical records and other important information protected by privacy laws.
Research (Saldaña et al., 2009) proves that which parents know, they have a vital role to play when their autistic kids transition to adulthood. Navigating this role involves tough choices when an adult child is not ready, or capable of embracing independence. Legal options range from extensive control over an adult child’s life to limited or supported powers over certain aspects where they lack capacity or capability. These choices should be considered at length in advance, so that plans providing the best quality of life for your autistic child are in place when they transition to adulthood.
Guardianship and conservatorship
In the US, a transition plan will probably form part of the child’s Individualized Education Program (IEP). Such transition planning from an early age (usually around 14 years) facilitates thoughtful future decision making; taking time to consider each option carefully means parents can avoid making snap decisions when a child turns 18.
If your child is getting close to the age of majority and you know they are not capable of independent decision-making you may be advised to consider guardianship. Parents may hear the term conservatorship used interchangeably with guardianship and wonder if there are any material differences between the two.
Because laws differ from one state to the next—and because there are no standard definitions for guardianship or conservatorship across the world—the terms are often confused and used interchangeably. In most countries, however, guardianship pertains to everyday decisions like living arrangements, safety, health, and support. Conservatorship on the other hand is more focused on financial decision making and decisions regarding protection of property.
Often parents petition courts for guardianship and conservatorship simultaneously; in many states, however, conservatorship should not be applied for when the child’s only income is from Social Security Administration.
A legal expert should be consulted for laws applicable to each child’s country of residence and specific circumstances; a professional will be able to advise parents about the implications of guardianship and conservatorship—and the option that may be most appropriate to keep your child safe, happy, and as independent as they are capable of being.
Careful consideration should be given to the rights your child will be deprived of should you obtain guardianship. While laws differ greatly, guardianship will most probably deprive your child of the right to get married, vote, and most of their autonomous decision making rights. Conservatorship could mean your child is unable to buy or sell property, to enter into contracts, and their rights to conducting business may be limited.
Obtaining guardianship
Bearing in mind all relevant requirements and regulations (according to local laws) guardianship may be granted during legal proceedings where a court finds an individual lacks capacity or that they are legally incompetent.
A plenary guardian is appointed where an individual lacks the capacity to take care of themselves; if a parent obtains such (full) guardianship, the legal rights that belonged to the autistic individual now belong to the parent. Some compare guardianship to extending parenting rights applicable during childhood; the parent “receives” the legal rights the autistic child would have possessed when reaching the age of majority.
As this is an extraordinary deprivation of rights, courts may have safeguards in place to protect individuals from exploitation and abuse. These may include notification of guardianship petitions to concerned persons in the child’s life, an appointment of a representative to ensure the child’s rights are looked after, and an annual review of guardianship.
The court will take various factors into consideration when ruling about an individual’s capacity to make decisions and take care of themselves. Such considerations may rest on whether the individual is capable of making financial decisions and decisions concerning their physical and emotional health. Experts like healthcare professionals may be approached to give testimony in this regard.
A great concern for autism advocates is whether a nonspeaking individual on the spectrum will receive a fair opportunity to be heard during legal proceedings. A nonspeaking person may communicate well when provided with appropriate accommodations and support, but when deprived of a means to communicate, the individual may be at a serious disadvantage.
Parents probably know their child best; they are often in a great position to determine the least restrictive means of ensuring their child’s safety in the adult world. For instance, if your child is capable of living independently and shows increasing responsibility as far as financial affairs are concerned, obtaining guardianship may not be in their best interest.
It may not be in your child’s best interest, but full guardianship will probably be the option most frequently suggested to parents, with other options rarely being discussed (Jameson et al., 2015). If you feel your autistic child will need support in specific areas when they become an adult, limited or partial guardianship or even powers of attorney may be a better option.
Partial guardianship and powers of attorney
You may want to remain in control or involved in certain aspects of your child’s life when they reach the age of majority. As a partial guardian, parents will obtain only specific powers; powers set forth by relevant documents like the order of appointment and the letters of guardianship. Partial guardianship in most contexts mean the ward (in this case your adult autistic child) will possess or retain a certain amount of legal control.
Parents may feel partial guardianship offers the best protection (and freedom) for their child on the spectrum. It is important to realize, however, that as a partial guardian a parent will not possess all the powers and rights of a plenary (full) guardian. Rather, a court order will set out the rights, powers, and duties of the partial guardian.
For other parents, concern about their child may be limited to a specific aspect like access to medical records. If you believe it is in your autistic child’s best interest, ask them to sign a HIPAA or other relevant release form when they reach the age of majority. When your autistic child becomes an adult their health records will be protected; the Health Insurance Portability and Accountability Act (HIPAA) ensures the privacy of information shared between patient and healthcare provider.
A conversation about sharing medical information should take place long before your child turns 18, otherwise you may find yourself in a position where you are unable to find out whether they have been admitted to hospital. Such crucial information may be withheld when your child becomes an adult with a legal right to privacy of healthcare information.
Your adult autistic child may also want to sign a healthcare power of attorney. If they are unable to make healthcare decisions, the power of attorney will enable a parent to make such decisions for them. A parent could also ask their lawyer to draft a Durable Power of Attorney (DPOA) if applicable in their state or country.
A general DPOA, unlike a durable power of attorney for health care, could give a parent the authority to act as an agent for their adult autistic child or to do business on their behalf. This may be a great choice for parents who would want to be involved in making health care and financial decisions when their autistic child is unable to do so.
Supporting independence
Your autistic child deserves all the freedom and independence they can handle when transitioning to adulthood. While guardianship may be the best option in some cases, alternatives should always be considered before parents petition courts for drastic measures. Many individuals on the spectrum have strengths that when developed could contribute to self-determination and growing independence.
For those areas where they do need help, a supportive team (led by parents) will be invaluable to assist them in making decisions that are in their best interest. An autistic child transitioning to adulthood, supported by a network embracing their strengths and differences, will be in the best position to handle their new adult rights and responsibilities.
References:
Jameson, J. M., Riesen, T., Polychronis, S., Trader, B., Mizner, S., Martinis, J., & Hoyle, D. (2015). Guardianship and the Potential of Supported Decision Making With Individuals With Disabilities. Research and Practice for Persons with Severe Disabilities, 40(1), 36–51. https://doi.org/10.1177/1540796915586189.
Saldaña, D., Alvarez, R. M., Lobatón, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism : the international journal of research and practice, 13(3), 303–316. https://doi.org/10.1177/1362361309103792.
