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Promoting Independence with Supported Decision-Making

Many 17-year-olds cannot wait for the day they will be on their own and can do whatever they want! Even as people warn that being an adult has challenges, they believe they will figure it out.

When my neurotypical, oldest daughter reached adulthood, I was able to relate to this frame of mind. After much reflection, I accepted that she would be OK, like myself or any other person who imperfectly survived being a young adult.

That was not my honest opinion when my youngest daughter, who is on the autism spectrum, reached adulthood. Where potentially imperfect decisions and actions were par for the course for my oldest, they were potential landmines for my youngest. I believed my job was to go ahead of her, detecting danger and filtering the world for her to improve her ability to meet these challenges. (Sounds more like a bomb squad expert with a metal detector than a mother.)

 

Considering guardianship

To be a guardian or not to be a guardian was the fretful, angst-filled question that came up more and more during my daughter’s last couple of years of high school. I was fearful of her being taken advantage of, especially around financial matters. I wanted to protect her from EVERYTHING!

Then we attended a workshop on Supported Decision-Making, a team approach to decision-making. We learned that many of our concerns could be addressed without guardianship. In the blog article “Guardianship: Confessions of a Mother,” Autism Resource Specialist Jan Combs explains that guardianship gives a designated guardian the legal right to make certain decisions on behalf of an adult. Guardianship may not be appropriate if the adult can care for themselves, make decisions in their own best interests, or manage their financial assets.

My youngest daughter directly and indirectly disclosed concerns about becoming adult. But she did not totally lack “sufficient capacity to manage affairs or to make or communicate important decisions concerning herself, family, or property due to specific causes.” These areas needed development but were not lacking. So, what were we to do?

 

Supported Decision-Making

Supported Decision-Making can serve as an alternative to guardianship or it can be implemented as an additional resource to guardianship or other options for managing affairs. According to one guide, Supported Decision-Making (sometimes referred to as SDM) is “a series of relationships, practices, arrangements, and agreements of more or less formality and intensity designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life. Put more simply, Supported Decision-Making is a model to support people with disabilities in making and communicating their own decisions about their lives.”1

To utilize SDM or not… That became the new question. Many people are unfamiliar with SDM. Let’s start by discussing what it is and what it is not.

SDM is a way of

  • supporting people with autism in making their own decisions while helping maintain their rights and independence
  • promoting autonomy

SDM is not

  • going to meet the needs of everyone
  • enforced through a judicial process

With this new information about SDM, we just had to determine how to support my daughter in a less restrictive manner.

 

SDM team in action

Now, we meet every other month at the least with advisors my daughter chose. She creates an agenda and we review specific areas of need. She takes the lead in making healthy, safe, well-informed decisions. Everyone is given an opportunity to provide input. We reach a consensus on next steps and action items. We review the outcomes at each meeting.

Over the years, the concept of SDM has given her what I had no earthly idea was possible. There has not been a moment where we needed to go back and take a second look at guardianship. For some, SDM might seem too much of a risk; for others, it may seem like the answer to a difficult question they are pondering.

There have been moments when I wanted to override some of the decisions she has made since turning 18, but they were overall similar to the moments that I experienced with her neurotypical older sister!

It is not easy, and I have more “tinsel” in my hair, but I even appreciate the live and learn experiences we have had with scammers and credit card offers. If I protected her from EVERYTHING, how would she mature, and learn and have experiences of her own?

She does not always like her advisors’ input. I’d wager that her skills in negotiation and her self-esteem are the better for it. Ultimately, the amount of support she receives and the opportunity to engage in conversations about her life positively impacts her emotions and her wellbeing. She is OK, and that is what matters.

 

Some ways to determine whether Supported Decision-Making may be an option for you or your child: 

  • Review the additional resources below and talk as a family about options.
  • Consult an attorney. Please do not consider the information provided here as legal counsel.
  • Contact an ASNC Autism Resource Specialist.

 

The Autism Society of North Carolina respects and values the uniqueness of all individuals with autism. We believe that when provided the opportunity, each person can make a unique contribution to their family, community, and society. The premise of SDM reflects these values.

 

Learn more

Your Teen Just Turned 18 – free ASNC webinar

Autism Guardianship: What You Need to Know – free ASNC webinar

Guardianship – ASNC tips sheet

About Supported Decision-Making – First in Families of NC

Alternatives to Guardianship – Disability Rights of North Carolina

Supported Decision Making and Health Care – National Disability Rights Network

 

Courtney Chavis, an ASNC Autism Resource Specialist in Greensboro and mom to a daughter with autism, can be reached at cchavis@autismsociety-nc.org.

 

1 “Supported Decision-Making: A User’s Guide for People with Disabilities and Their Supporters” -Promoting Independence as an Alternative to Guardianship in Maine

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