Guardianship and Guardianship Alternatives

Supportive Decision-Making Networks

One of the most important transitions a family faces is when their child turns 18 and legally becomes an adult.  Like most 18-year-olds, children with disabilities are not ready to be on their own without the support of their families. Guardianship is an important and vital tool for many families when planning for their child to turn 18 and legally becomes an adult.  But guardianship is not right for every young adult. There are other less restrictive options available that help protect these young adults that do not strip them unnecessarily of their rights.   A new report from the National Council on Disability, entitled,  Beyond Guardianship: Toward Alternatives that Promote Greater Self-Determination for People with Disabilities, found that upon turning 18, persons with disabilities are being placed into a guardianship before they have the opportunity to exercise their civil rights, liberties or have time to learn about their decision-making options.  The report made several key findings:

  • Guardianship is often imposed when not warranted by facts or circumstances, because guardianship proceedings often operate under erroneous assumptions that people with disabilities lack capability to make autonomous decisions and rely upon capacity determinations that often lack sufficient scientific or evidentiary basis.
  • Although guardianship is considered a protective measure, courts often lack adequate resources, technical infrastructure, and training to monitor guardianships effectively and hold guardians accountable, which at times allows for guardians to use their positions to financially exploit people subject to guardianships or subject them to abuse or neglect.
  • People with disabilities are often denied due process rights in guardianship proceedings, and their input of their wishes or desires is often not being considered.
  • Although most state laws require consideration of less-restrictive alternatives, courts do little to enforce those requirements. Similarly, though every state has a process for the restoration of one’s rights lost through guardianship, the process is rarely used.

Courts rely too heavily on physicians who lack the training, knowledge, and information about the individuals or persons with disabilities to make an accurate determination.  There are several other less restrictive options available to families.  One alternative option to guardianships is supported decision-making agreements which support protections of civil rights and the well-being of people to make important decisions for themselves. Supportive decision-making (SDM) is a recognized alternative to guardianship through which people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face, so they can make their own decisions and retain their rights.

SDM is a process of supporting and accommodating an adult with a disability to enable the adult to make life decisions, including decisions related to where the adult wants to live, the services, supports, and medical care the adult wants to receive, whom the adult wants to live with, and where the adult wants to work, without impeding the self-determination of such person.

In a supported decision-making agreement, the person with a disability chooses a network of people (called supporters) who are friends, family, or professionals who are trusted by a person with a disability to help them get information they need to make an informed decision, consider their options, understand the risks and communicate their decisions to others.   These supported decisions include those pertaining to legal, financial, employment, housing, educational and medical issues.

A supported decision-making agreement is an informal agreement that does not require court involvement and is voluntary and may be terminated by either party at any time. These types of agreements could delay or negate the need for guardianship as a legal tool.  These network consists of persons that have advanced directives including Durable Power of Attorney, health care surrogates and the like.