Do you know what guardianship is? Do you know there are alternatives to guardianship?

The Self-Advocacy Association of New York State (SANYS) has been working with Institute for Community Inclusion (ICI) and Massachusetts Advocates Standing Strong (MASS) on a project called GATOR (Guardianship Alternatives and Transfer-of-Rights). In this issue, we will share some of the findings of the GATOR project.

I hope this issue will help guide you as you figure out what kind of decision-making model is right for you and your child.

Many thanks to Sandy Mislow, Regional Coordinator, NYC-Westchester Region, SANYS, and Sophia Roberts, Western Region Coordinator, SANYS, for sharing this project with us. 

Best to you and yours,

Maria Schaertel

Guardianship refers to a legal arrangement where one person (the “guardian”) is appointed by a court to make decisions on behalf of another person.



• Requires only certification from one physician and one psychologist or two physicians
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• A guardian is appointed by the court
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• Very broad in scope of decision-making – a guardian legally can make all healthcare, financial, housing, education, employment, and every other decision for the person
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• Most restrictive type of decision-making – takes away a person’s civil rights and gives them to the guardian
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From Bridges, https://www.starbridgeinc.org/bridges-winter-2017#what-is-guardianship

Theme 1: The reasons that people choose guardianship

Fear of losing access to education and health information of their children and fear that their children will be exploited. Parents usually have good intentions behind getting guardianship. Parents may have been told guardianship is the best option, and they don’t know of any other options.

Pressure from professionals. Seeing people with disabilities as “perpetual children” in need of guardianship moves doctors, lawyers, and other professionals to routinely advise parents and supporters to get guardianship. Their views pressure parents and supporters to become guardians.

People make assumptions about the capabilities of people with disabilities, such as lack of skills to make decisions, inability to communicate, and lack of competence. Guardianship is often based on the assumption that people with I/DD (Intellectual or Developmental Disabilities) are unable to make decisions for themselves. Some people think individuals with disabilities can’t articulate their own thoughts and may think they are not able to make decisions without a guardian. Some people are biased and make assumptions that people with disabilities can’t do things or be capable just because of their appearance.

Theme 2: Guardianship limits self-determination and has long-term consequences,

Guardianship limits individual decision making. It also takes away a person’s rights, independence, and freedom. When a parent tries to get guardianship without talking with the youth about it first, the parent is assuming that the youth’s decisions are not important. People with disabilities are not always taken seriously. Guardianship can also have a negative emotional impact.6,8 People with IDD feel they need to fight for respect, and they want to be heard and seen as individuals. Under guardianship, abuse can happen, and can be hard to prevent and prove.

Guardianship can have a long-term impact on many choices later in life.

Guardians can make decisions about a person’s life without discussing the decisions with the person. If a person has a guardian, the guardian can make major decisions that affect the life of the person under guardianship. Guardians can receive personal information about the person, make educational decisions, control their right to contract, control their marriage and reproductive rights, decide their place of residence and travel, decide who the person can spend time with, make health care decisions, and make financial decisions. The person loses complete control over some or all parts of their lives.

Theme 3: Strategies and recommendations to increase choice

A range of alternatives beyond guardianship are available to help support people in making decisions, and for youth to be independent. There are a number of less restrictive alternatives to guardianship, including Supported Decision-Making, power of attorney, representative payees, trusts, and health care proxies.

Youth and families should choose supporters who treat people with disabilities with respect. A good supporter is one that treats people with respect, understands them, and supports their decisions. A support team can include friends, family, community members, teachers, helpers, and self-advocates. The team can help a person with a disability do what they want with their life.

Parents and others can support youth to practice self-advocacy skills, allowing them to use their voice. People should have the support they need in order to feel they have a voice and feel empowered. Being empowered to use their own voice has many benefits to individuals. People with greater self-determination are healthier, more independent, more well-adjusted, more integrated into communities, and better able to recognize and resist abuse. It’s better for people and they are happier and more confident if they are involved in decisions about their lives through options like Supported Decision-Making. If people are respected and taken seriously, they are more empowered and able to do more independently

People with greater self-determination are healthier, more independent, more well-adjusted, more integrated into communities, and better able to recognize and resist abuse.

Adapted from https://gator.communityinclusion.org/uploads/gator_2_f_remediated.pdf

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• Supported Decision-Making is widely recognized as a less restrictive alternative to guardianship.
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• It allows people with disabilities to make their own decisions with the support of trusted persons in their lives.
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• SDM promotes self-determination, inclusion, and dignity for people with disabilities.

• It provides families with the assurance that their loved one will always have a circle of committed supporters to help them make good and healthy decisions.
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New York State’s Supported Decision-Making Agreement Act was signed into law by Governor Kathy Hochul in 2022. https://sdmny.org/great-news-a-day-like-no-other/

The process of Supported Decision-Making

People with intellectual and developmental disabilities (who we call Decision-Makers) can choose trusted persons in their lives—often family members, neighbors, or friends—to support them in making decisions in a variety of areas.

In the SDMNY process, a trained facilitator, supervised by an experienced mentor, works with the Decision-Maker and their chosen Supporters to negotiate and formalize an agreement, the Supported Decision-Making Agreement (SDMA), that sets out the responsibilities and obligations of the parties. Facilitation meetings are generally an hour long and can take place bi-weekly or monthly, or as the parties agree. On average, the facilitation process requires about 14 meetings.

The facilitation process allows the Decision-Maker to explore how decisions are made, the different areas in which they may want support (health care, education, living arrangements, finances, etc.), and the kinds of support they may want/need in making decisions in each of those areas:

• gathering information;
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• understanding the information;
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• identifying alternatives;
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• considering consequences;
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• weighing the alternatives;
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• communicating the decision to third parties;
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• implementing the decision.
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Decision-Makers identify persons they want as their Supporters and the kinds of support, in a particular area, they want from each Supporter.

Decision-Makers may choose one or more Supporters for each area in which they want support, and may request different kinds of support from each Supporter. In the SDMNY project so far, the number of Supporters chosen by a Decision-Maker has varied from 2 to 13, and it is not uncommon for Supporters to be located outside New York (participating in meetings and providing support remotely) and even outside the United States.

As with everything else in the facilitation process, it’s the Decision-Maker’s choice!

From https://sdmny.org/the-sdmny-project/how-we-do-it/

There are certain situations in which a guardianship agreement may be reversed or revoked. For instance, it may be possible for a guardian to get out of legal guardianship duties if they are no longer able or willing to continue carrying out the duties required to care for the person. 

Another example of when a guardianship agreement may be reversed is when the agreement expires on its own. This can happen when a guardian is only appointed on a temporary basis or if a person’s parents wish to regain custody over their child and the court decides that this would be in the child’s best interest. 

A person may also petition the court to reverse a guardianship agreement if they believe that a guardian is not performing their duties in accordance with the agreement. Another example is when they reach the age of majority, which is 18 in New York State, and feel that they no longer need a guardian to make decisions on their behalf.

One other way that a guardianship agreement can be reversed or revoked is if a third party petitions the court to remove the guardian in cases of abuse or neglect. For example, if a guardian is abusive towards the person, exhibits violent tendencies, or neglects caring for the person entirely, then a court can intervene to cancel the agreement and appoint a new guardian. 

To reverse a guardianship, please consult with an attorney for specific directions and options.

Adapted from https://www.legalmatch.com/law-library/article/reversing-a-guardianship-agreement.html