Breaking Ground 107 - Who makes decisions about my life? New Center for Decision-Making Support can help you know your options

By Dara Bacon, The Arc Tennessee & Kelsey Loschke, Disability Rights Tennessee

Tennessee is the first state in the nation to offer people with disabilities and their families one place to learn about decision-making options: The Center for Decision-Making Support is a one-stop-shop for learning about ways to get help with making financial, healthcare, or other kinds of decisions. You’ll learn about tools like:

  • powers of attorney
  • advance directives
  • special needs trusts
  • ABLE accounts
  • having someone manage your Social Security benefits (“a representative payee”)
  • conservatorship
  • and more.

The Center offers helpful resources and staff to talk one-on-one about your options and to refer you for legal consultation, if you need it.

“The Tennessee Center for Decision-Making Support is an incredibly valuable resource for the disability community. Individuals and families can access accurate, easy-to-understand information on topics like special needs trusts, conservatorship, and more. It’s all in one place,” says Heidi Haines, Executive Director of The Arc Tennessee.

Finding the right decision-making supports for your life shouldn’t be hard. You shouldn’t have to be able to afford a lawyer or know the right people. You should be able to find help to make as many choices about your own life as possible.

The Center offers the LifeCourse “Exploring Decision-Making Supports” Tool to get you started. The LifeCourse tool will help you think about areas where you make your own decisions and areas where you need help. For example, you’ll write down how much help you need for decisions about daily life, staying safe, where you live, and your social life. You might make some decisions all on your own, and you might need some help for others. Maybe there are some decisions you need someone else to make for you.

The Center’s website is organized to match the levels of support on the LifeCourse Tool. That makes it easy to find information and tools to fit the kind of support you need.

The website also offers accessibility and language options for people who need them. In fact, visitors can translate website content into any of 100 different languages with one click. People with visual impairments or learning disabilities can change the visual layout of the site to make it easier to use. For example, you can change the background color, have content read out loud, enlarge the font size, and more.

Photo shows Scott, an older gentleman with Down syndrome with white hair seated on a walker, wearing a nice black suit with a blue collared shirt. Behind him stand his supporters, mentioned in the caption. All are smiling, in front of a blue mosaic statue or mural with pretty insect and flower designs.
Scott’s colleagues and board members of The Arc Tennessee are an important part of his daily life. Scott has a designated circle of support team that offers support when he needs it. Pictured: Scott Finney, Ashley Coulter, Robyn Lampley, and Rick Guiden.

The Center’s Stories: Making Decisions about Our Own Lives

The Center’s website features many stories to show how different people get support to make decisions. One story features Scott Finney, a nationally recognized self-advocate with Down syndrome. When Scott turned 18, he began making decisions about his life as a legal adult. His parents still supported him with decisions, and after their death, his sister and colleagues now offer him support when he needs it.

“I discuss my wants and needs with my sister and circle of support. We are a team,” says Scott, who makes most of his own decisions and has been employed with The Arc Tennessee for 33 years.  “I know I can call upon my sister and circle of support for any reason, at any time.”

Scott is part of People First Tennessee, a disability rights group led by self-advocates. People First is a primary way Scott shares information about the Tennessee Center for Decision-Making Support. “When I share about my life, I like telling others about the Center and decision-making options because it’s so helpful. I’m really glad I get to work, make decisions for myself, and be part of things that are important to me,” Scott says.

Helping with Difficult Issues

In the first month of its launch, the Center took more than 1,000 questions from Tennesseans. Many of the situations involve complex issues, like abuse and exploitation with no easy way out of the legal arrangement like conservatorship. These situations show serious issues with the current system. The Center will be working with judges and lawyers to better understand and begin addressing these difficult issues.

How We Help

“The transition from school to adulthood is a common time when families begin really exploring decision-making tools,” explains Penny Johnson, who serves as the Center’s Program Coordinator. “It’s important for individuals and families to know that the Center is an unbiased, easy-to-navigate resource for all ages.”

You can contact the Center for any issue related to decision-making, even if you don’t know where to start. The Center sometimes gets calls from people who just want to share their story, and this helps us learn. Here are some examples:

  • Caller: “Hello, we have a conservatorship in another state and are wanting to move to Tennessee. Can you help us?”
  • Center for Decision-Making: “Yes, we can refer you to the court in your new county. Be sure to check out the Center for Decision-Making page on conservatorship best practices: “
  • Caller: “Hello, I am a teacher. A student and their family have asked me about getting conservatorship. How can I help them?”
  • Center for Decision-Making: “We encourage everyone to start by taking the LifeCourse Tool for Decision Making as a self-assessment first. It helps you learn about the areas where the person wants and needs support: From there, you can refer them to us and we can work through the options that best fit the student’s life.“
  • Caller: “Hello, I know I need some legal help with decision-making. Can you help me?”
  • Center for Decision-Making: “We have a directory of lawyers across the state who practice law in this area. Based on your county, we can give you a list of lawyers in your area to try.”

How to contact the Center

Dara Bacon is the Director of Communications & Public Awareness for The Arc Tennessee. Officially joining the staff in January 2020, Dara manages all online resources for The Arc Tennessee, including the Tennessee Center for Decision-Making Support.

Kelsey Loschke is the Director of Community Relations at Disability Rights Tennessee. She has worked with diverse disability groups throughout her career, including individuals with intellectual and developmental disabilities. Her experience includes communications, public relations, voting rights, and systemic advocacy.