“Self-determination” is when people with disabilities make choices about their own lives and future. Family and friends can help, but the individual is the captain of the team.
(From Lorri Mary and Janet Shouse at TennesseeWorks)
When you have a big decision to make, what do you do? Do you consult with your spouse, your parents, your siblings, your friends? Do you seek out opinions of knowledgeable people? Most of us do.
How would you feel if you were suddenly told someone else would make all decisions for you, often without your input? Most of us would hate that. Yet, for many individuals with disabilities and some older adults, this is a daily reality.
In the summer of 2013, a young woman named Jenny Hatch won a landmark legal battle protecting her right to make her own life decisions using what is called supported decision-making, instead of being subjected to guardianship. You can read more about Jenny’s case at the Jenny Hatch Justice Project.
Nationwide, people with intellectual, developmental and other disabilities are often placed under guardianship or conservatorship, losing their rights to make basic, fundamental decisions like where to live, what to do and whom to see. In most cases, this is done in a sincere effort to protect the individual — from abuse or neglect or exploitation. Or it may done in order to allow family members access to medical care/decisions, educational records/decisions, or to assist with financial decisions.
Supported decision-making is an effective, less restrictive alternative to guardianship/conservatorship that uses trusted friends, family members and advocates to give people with disabilities the help they need and want to understand the situations they face and the choices they must make, so they can make their own decisions. Supported decision-making shows great promise for increasing self-determination and improving quality of life outcomes.
In the United States, Texas was the first state to pass legislation to allow supported decision-making as a formal, recognized process for people with disabilities and older individuals. The Tennessee General Assembly is considering legislation that would allow a similar process in our state. While there is general philosophical support for the concept of supported decision-making, the legislature moved the bill to a summer study committee. Lawmakers want to fully examine the best option for creating a supported decision-making process that will work within the structure of the current laws. You can read the bill here.
My colleague, Lorri Mabry, recently testified before the Senate Judiciary Committee about her views on supported decision-making. Lorri uses a wheelchair and communicates using an iPad. Here is a transcript of her testimony:
“Hi. My name is Lorri Mabry, and I work for the TennesseeWorks program at Vanderbilt Kennedy Center. I was the first student to be included in regular classes in public school. I have spent most of my life fighting the stereotype that my mind doesn’t work simply because my body doesn’t work like everyone else’s.
“I’ve had to fight to maintain my independence and to not have someone appointed as my conservator simply because I can’t communicate like everyone else. Yet, I do need help to make decisions, and my communication challenges often make it necessary for me to have a trusted friend help me out, but sometimes doctors and others won’t let that person help me because they are worried about HIPAA rules or they think I’m incompetent to make decisions. Having supported decision-making as a legal option will make it easier for my friends to help me make decisions and to communicate my decisions to others – but it maintains my right to make the decisions – even bad ones. If I don’t ever get to make bad decisions like other people, how will I learn from my mistakes? I don’t need a conservator – I just need some support. Please support this legislation so that people like me can maintain the dignity of being able to maintain control of our lives and our decisions – even when those decisions aren’t perfect.”
(You can read more about the “dignity of risk” here.)
Supported decision-making will look different for everyone. It means finding tools and supports to help a person with a disability understand, make, and communicate his or her own choices.
Examples of these tools might be:
- Plain language materials or information in visual or audio form
- Extra time to discuss choices
- Creating lists of pros and cons
- Role-playing activities to help the person understand choices
- Bringing a supporter (a designated friend, family member, advocate) into important appointments to take notes and help the person remember and discuss his or her options
Should [Kentucky] pass this legislation or something similar, supported decision-making would be a formally recognized process (as it is in Texas). A person with a disability would then be able to sign a formal document with his or her chosen supporters in which they all agree to undertake supported decision-making. Although we wish that our society always recognized everyone’s inherent right to speak for themselves and make decisions, too often that is not the case. This document would help doctors, bankers, lawyers, and other third parties to feel confident in accepting the decision of the person with a disability without fearing lawsuits or malpractice claims. This document will give families a new option to consider, in addition to existing options like power of attorney and conservatorship.
One of the benefits of supported decision-making is that it does not require a court process. The document is not a contract, but an authorization. Supported decision-making offers the flexibility of the process and documentation being handled by the individual and their family, and it can be tailored for an individual’s needs. Supported decision-making is a “middle ground” between no support and all decision-making rights overtaken by a guardian/conservator.
Certainly, there are individuals with disabilities and aging adults who need a conservator; who are not able to make decisions due to a limited ability to understand the choices and the consequences. But many times, I think, families are encouraged to become conservators when their child with a disability turns 18 regardless of the child’s decision-making abilities, because there is a fear that the parent(s) will no longer be able to help with medical or educational decisions. If the child who is turning 18 can make a clear decision as to whether he or she wants Mom and Dad involved and gives permission, then parents should be encouraged to explore other options to conservatorship. And it would be wonderful to have supported decision-making as one of those options to avoid over-broad legal authority over a young person’s life – and expensive court processes.
As we, as a nation, have moved from paternalism to empowerment of individuals with disabilities, we have come to realize the value of person-centered thinking. What is more person-centered than allowing an adult to make his or her own decisions with the input and support of family and friends?
Learn more about Supported-Decision Making from the following resources:
- Autistic Self Advocacy Network: http://autisticadvocacy.org/tag/supported-decision-making/
Module about self-determination and advocacy
About the Author:
Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.