When students with disabilities become young adults, they and their parents often ask whether and how decision-making practices should change. After all, the student and family, the school, medical, vocational, and service providers have been using the transition process for several years to help prepare the student for complete community inclusion.
Now that the student is nearing or has attained the age of majority, how should decision-making responsibilities be addressed? This article answers that question.
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Developing Decision-Making Skills
A key component to each of these goals is providing the student with the skills and support necessary to make good choices. Indeed, if the transition planning principles of self-determination and person-centered planning have been followed throughout the development of the transition plan, the student, his or her parents, and the participating professionals should have had many opportunities to help the student develop the ability to make choices.
As a young adult, the process continues, even as the decisions become more complicated. The preferred means of ensuring the young adult’s safety and security at home, school, work, or leisure is to ensure that strong decision-making skills and supports are created and remain in place.
Ensuring that young adults are empowered to make necessary decisions is critical.
Learning Real World Skills
As with all students, students with disabilities need to learn real-world skills and need to have the chance to make mistakes and to learn from them. Many transition and vocational education programs focus on building community living skills, like counting money [2], finding a job [3], getting to and from work, performing assorted tasks at work, buying food [4], and budgeting money.
These are vital skills to community inclusion, but they are decision-making skills as well.
Promoting Self-Determination
Self-determination focuses on developing skills and supports that preserve and enhance, rather than limit, the young adult’s ability to exercise choice in all facets of his or her daily life.
Many options exist that advance self-determination, including teaching self-advocacy skills, teaching young adults how to name patient advocates for medical decision-making, and granting powers of attorney for complex financial needs.
Self-determination teaches young adults to use the same decision-making resources that are available to and used by us all, including professional consultations, the support and feedback of family and friends, access to materials that explain choices in language and formats we can understand, and guidance from appropriate advocacy or support agencies.
Legal Choice Issues
It is easy to understand why legal choice issues can arise once a young adult moves to community independence. Often members of the general community do not respect either the right or the ability of the young adult who has disabilities to make his or her own decisions.
They presume that because the person has a disability, they, therefore, lack the legal capacity to make their own choices. Self-advocacy and direct support from the family or advocacy agencies can educate the community members to accept the young adult’s right to choose and the wisdom of the choice.
Challenges with Medical Service Providers
Some medical service providers, again fearing out of ignorance that the young adult cannot exercise “informed consent,” will try to insist that a family member or case manager obtain a guardian or other representative to consent on behalf of the young adult before providing services.
Again, strong self-advocacy and support from parents, family, other service providers, and advocacy agencies can educate the balky medical provider about the adult’s rights and abilities. These strategies also are proving to be successful in other situations.
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Challenges with Medical Service Providers
Even with strong family and community support in place, there are instances when a young adult either has a hard time understanding the available choices in a specific situation, such as whether or not to have surgery [6], or in a particular area of life skills, like medical decisions or money management situations.
All states have laws that allow adults to designate other adults to act as their patient advocates in some or all medical matters or to give other adults permission to make medical, economic, and other choices for them by using powers of attorney.
These options are in wide use throughout the nation by many adults — whether or not they have disabilities – who want to preserve their legal right to make choices for themselves and, at the same time, delegate that power to others of their own choosing without involving courts.
Last Resort Options: Guardianships and Conservatorships
The most restrictive decision-making options involve the imposition of court-ordered guardianships or conservatorships. Guardianships control decisions related to the person, like where to live, medical decisions, and the like, while conservatorships control decisions related to the person’s property, like wages, bills, property ownership, etc.
Guardianships and conservatorships can take partial or total control over the person’s decision-making and property rights. It is important to remember that these devices actually strip the young adult of the legal right to make some or all choices for himself or herself and, in the State’s name, give that legal right to another adult, who might or might not even know the young adult.
Once the courts take away some or all of the young adult’s decision-making rights, it becomes next to impossible to have them restored later, whether or not the person named as the guardian remains alive and able to serve throughout the young adult’s life.
Guardianships and conservatorships have been overemphasized throughout the nation for many years because it has been common to presume that people who have disabilities must, therefore, be legally incompetent.
Many states use public or corporate guardians when family members are unavailable or refuse to serve as guardians. This exposes the young adult to a whole different arena of indifference, mistreatment, and other potentially serious harm.
Conclusion
Transition services stress decision-making as a central part of the process of daily life in the community and as part of the means by which young adults have been able to move from the home or facility into the community.
Hopefully, the self-determination process and the availability of strong community support will further reduce the need for guardianship or conservatorships.
Guardianships and conservatorships are the last resort option and should be used only if and when all other decision-making skills and supports have completely failed.
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Reprinted with permission from © 2012, Calvin and Tricia Luker
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This post originally appeared on our July/August 2013 Magazine [33]