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