BY LAUREN AGORATUS, M.A.
Families may be concerned about what the future holds for their child with disabilities. Parents may be
fearful if the child will be able to live independently and make decisions for themselves. Children with
special needs must have input, based on their abilities. Families and professionals need to start at a
young age to help the child develop decision-making skills and maximize their potential as adults.
Is Guardianship the Only Way?
Once a child is 18, they are considered capable of making decisions regarding their education, healthcare, etc.— despite having special needs. In fact, shared decision-making is one of the cornerstones of healthcare reform. In addition, one of the Maternal and Child Health core outcomes for children with special needs states, “Families of children and youth with special health care needs partner in decision- making at all levels and are satisfied with the services they receive.” As parents may be unsure about their child’s ability to make decisions, some may decide to go through the legal process of guardianship. Some families and self-advocates see this as a civil rights issue as the individual will not legally be able to make decisions about their own life, including where they live, work, or even if they are able to vote, etc. Although some states have limited guardianships, there are other choices available to families which may allow the individual to be more independent throughout their lifetime.
There are other options besides guardianship which may work for families and maintain the civil rights of the
individual with disabilities. Some families use a Power of Attorney when needed. This allows families to participate
in decision-making on healthcare issues for their young adult with disabilities, without the need for guardianship.
For young adults with mental health issues, a “durable” Power of Attorney which is revocable may be the best
choice to use when the person is temporarily incapacitated, but most of the time otherwise competent to make
decisions. Besides Power of Attorney, another type of Advance Directives document is the “Living Will” which
includes end-of-life care decisions. Lastly, the publication Self Advocacy Guide to Guardianship is also a good
resource at: www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf
Please note: This information was current at the time of publication. But medical information is always changing,
and some that is given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org – the AAFP patient education website.
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org