TN’s Center for Decision-Making Support: Help for the Process of Making Life Decisions
by Penny Johnson, The Arc Tennessee Program Coordinator, Center for Decision-Making Support
Editor’s Note: For years, our Council staff heard stories about the need for people with developmental disabilities to have more choices and control over their own lives. Families had no easy way to find tools, resources, and legal advice to help them support decision-making for a loved one with a developmental disability. Out of these needs, we partnered in 2019 with The Arc Tennessee and Disability Rights Tennessee to establish the TN Center for Decision-Making Support. We’re proud of how the Center’s work has grown and benefited so many lives since it was founded.
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Making life decisions is part of everyday life. Most of us make countless decisions each day with little effort. However, for some people with disabilities, decision-making is not so easy. People with intellectual or developmental disabilities, with mental illness, or age-related disabilities like dementia may need support from family members, professionals, or other trusted advisors to help them make life decisions.
There are many ways to support someone with decision-making. Some ways are informal, like helping someone understand the benefits or risks related to a specific decision or going to a doctor’s visit with someone to take notes to help them understand their medical condition or treatment. Some supports are formal, like legal documents or processes such as a durable power of attorney, conservatorship, representative payee, special needs trust, wills, supported decision-making, and more. We all need support with decisions at one time or another.
For situations when someone needs legal documents, it can be overwhelming to try to figure out which documents are appropriate or how to go about getting them. In Tennessee, we have the TN Center for Decision-Making Support to help people understand these legal documents and processes. People from all walks of life call the center for help regarding all kinds of situations related to decision-making documents and supported decision-making practices.
The Center in action: one family’s story
Recently, the Center received a call from the parents of a young adult with a disability. Mom and dad were told by a case worker that because their daughter has an intellectual disability and is over eighteen years old, the parents needed to get a conservatorship for her. The case worker said this was in order to protect her from being taken advantage of and so the parents could be involved in decisions for her.
Neither mom nor dad knew what conservatorship was or the process to obtain one. Their daughter had recently graduated from high school and was working part-time at a local business. She was in a program to help her increase independent living and job skills. Up to this point, mom and dad had just talked with their daughter to help her make decisions and plan her future. However, when they were told they needed a conservatorship to protect her, they became concerned that they needed more protection.
The family scheduled a consultation to meet with a Center staff member to discuss their situation and the various decision-making support documents. They learned about:
• conservatorships,
• durable powers of attorney,
• special needs trusts,
• ABLE savings accounts,
• and healthcare directives.
After learning what these legal documents are, how they work, and processes to obtain them, the parents realized they did not need a conservatorship for their daughter. They realized a durable power of attorney for medical and financial decisions would give their daughter the support and help she needed without removing her legal decision-making rights. They were able to choose the best support options based on their daughter’s individual decision-making abilities. During this consultation, they also learned of various support services that could help their daughter to achieve greater independence.
A growing resource for Tennessee
Since its launch in May of 2021, the TN Center for Decision-Making Support has become an invaluable resource for Tennesseans. Staff have conducted hundreds of one-on-one consultations, provided hundreds of trainings, attended scores of transition fairs, and reached thousands of families through outreach and website resources.
The need for decision-making resources and information continues to grow. Currently, the Center is making more updates to the website and adding new content, including:
● more videos of Tennesseans sharing their stories,
● Webinars,
● and decision-making tools.
Our biggest website change will be a new legal database that will enable families to search for attorneys in their area that specialize in various aspects of disability law. Recently, the Center was awarded a grant in the Governor’s budget to continue and increase the work of the Center. With this additional funding, the Center will be able to serve more families with this information.
Watch for the new legal database, videos and resources coming to the website in 2024!
To learn more about the TN Center for Decision-Making Support, you can visit our website at tndecisionmaking.org, contact our office at (615) 248-5878, ext. 322, or email ds@thearctn.org.
Penny Johnson is the Program Coordinator for the Tennessee Center for Decision-Making Support with The Arc Tennessee. Penny joined The Arc Tennessee in July of 2020 to oversee the project from the website and program development to the ongoing management of the day-to-day activities and services.
Prior to joining The Arc Tennessee, Penny worked as a Pre-Employment Services Coordinator for youth with disabilities. She has over eighteen years of social services experience ranging from eligibility worker to program manager. Throughout her career, Penny has been dedicated to supporting and advocating for vulnerable populations, including individuals with intellectual and developmental disabilities. Penny is passionate about helping individuals with disabilities achieve their greatest potential and success in life.