In my early 20s, I began attending IEP meetings for my brother Evan, who is 6 years younger than I am. Evan (soon to be 26 years old) is a bright, funny, curious young man who is autistic, has other disability labels, and experiences many communication challenges. I found these meetings, where we talked as a family and a team about Evan’s educational goals and life after high school, to be interesting but overwhelming. Despite the best efforts and good intentions of everyone in the room, it felt like we often ended up talking about the same problems, getting hung up on details, speaking in very complex language, and rarely focusing on what needed to happen to really help Evan achieve a good future. When Evan began getting ready to enter his transition program at age 18, I was working at the TN Council on Developmental Disabilities and was introduced to the Charting the LifeCourse framework and tools.
The LifeCourse framework and tools were developed by people with disabilities and families FOR people with disabilities and families (though nothing about it is specific to disability and they can be used by ANYONE!). It was meant to create some simple shared language and ideas for talking about supports, life transitions and future goals for all members of a family. LifeCourse tools encourage us to:
- Think across a person’s life path (“trajectory”) – how does what has happened to a person in their past impact what their life looks like right now and what they want for their future?
- Think about not only what services and supports a person needs to achieve their vision for a good life, but the general life experiences will help them get closer to that vision.
- Think about all kinds of supports – not only formal government programs or services we pay for, but the ways that we can get support from others in our lives, resources in our local communities, technology we use and from building our own strengths and skills.
- Think about all areas of a person’s life and how the areas affect each other.
In 2012, Tennessee became a member of the original LifeCourse learning community (“Supporting Families Community of Practice”), now known as the LifeCourse Nexus.[1] In my role at the Council, I got to spend a lot of time learning about these ideas and tools, practicing using them in my own life, and training others to understand them.
I spend a lot of time during Evan’s IEP and support planning meetings trying to help Evan communicate thoughts and choices, since he doesn’t speak to communicate. (This means that I listen to the conversation, take notes for him in plain language on my laptop or a pad of paper, and find ways to ask simple questions or offer choices so we can hear his perspective. You can read a bit more about this in an article I wrote for our Council magazine Breaking Ground a couple years ago). This often means it is hard to me to share with the group my own thoughts and feelings about what might be helpful for Evan. I began using tools like the LifeCourse Trajectory for Planning before Evan’s meetings to write down what I thought a good life for him would look like, based on what we knew he loved, what we didn’t want for him, and what had been positive and negative experiences during the past school year that could inform goals and experiences he should explore for the next year. I brought the tools to his meeting and I believe it helped us as a team (parents, teachers, therapists, etc.) stay focused on Evan’s entire life inside and outside of school and a good future for him.
Since then, I have frequently used various LifeCourse tools to reflect and organize my thoughts about Evan’s goals, support needs and sources of help we could explore. When Evan had a really hard time in the early months of the pandemic, we decided to hold a person-centered planning meeting to talk about what needed to change. The Life Trajectory tool allowed me to think about what had worked and what had NOT worked well in recent months about his schedule and his services, and gently share those thoughts with professionals in his life AND also suggest solutions or different approaches. When my family had future planning conversations about what life might look like for my parents when they retire, I used a LifeCourse Trajectory tool to guide that discussion; it was a positive way I could share my own hopes for my parents’ future and learn more about their personal goals.As someone living with an anxiety disorder, I have found it useful to problem solve with the Integrated Supports Star to think about new ways that I can manage my anxiety and stress. Our team at the Council once filled out One-Page Person-Centered Profiles about ourselves and then shared with our colleagues, so we could talk together in open ways about what things in our work lives are most important TO us, what is most important FOR us to be successful, and how others can best support us at work. Most recently, in a LifeCourse class I am in, I did a Life Trajectory tool thinking about what I want my life to look like in about 5 years and it helped me think more clearly about the next steps I need to take to make that vision happen. 
Using LifeCourse tools and ideas for your life, for a loved one, or for someone you are working with doesn’t have to be about printing off a worksheet or filling in a form on a computer. Anytime I am training people on using the LifeCourse framework and tools, I emphasize that the tools themselves are not the point – and there is no right way or wrong way to use them. The main idea is to use the core concepts to think in new and productive ways about our lives, the supports we all need and use, our relationships, and our goals for the future. On the LifeCourse website, you can either explore the “person-centered tools” which you should use if you want to do planning for yourself OR support another person to reflect and do planning for their own lives. Or you can explore the “family perspective” tool, which has prompts for people who are using the tools to think about another person, like a loved one, student or client.
The LifeCourse tools are flexible and simple – you can use them to plan for next month or 10 years down the road; you can use them to think about the big picture of a person’s whole life or to home in on one particular problem or topic. Nothing about the LifeCourse tools are focused on disability and can be used by anyone in any stage of life for any reason. They aren’t meant to be one-time tools either – we don’t just plan for the future or think about the support we need just ONCE! It’s a regular process and these tools can help any time you’re having those conversations or thinking about those topics. Whatever works for you is the right approach! I hope you will visit www.LifeCourseTools.org, learn and explore. If you have a group that would like a training on these ideas and tools, email me at emma.shouse@tn.gov.
Emma Shouse Garton lives in Nashville, TN and works as a Public Information Specialist for the Tennessee Council on Developmental Disabilities. Emma hasbeen with the Council since 2011, helping lead the Council’s communications and outreach efforts. She also coordinates the Tennessee Adult Brothers and Sisters (“TABS”) statewide sibling support network, launched by the Council and Vanderbilt Kennedy Center over a decade ago. Emma’s close family includes her husband T.J. and their 3 pet rabbits, her parents, and twin younger brothers (Evan and Brendan), who are 25 years old. Evan has autism, other disability labels, significant communication challenges and lives in his own apartment nearby in Franklin, TN with help from support staff. Emma graduated from Belmont University with degrees in social work and sociology. She is passionate about finding ways for people like her brother, who rarely communicate with speech or words, to have their “voices heard”, as well as increasing support for siblings of people with disabilities.
[1] Note – while Tennessee remains very involved in using promoting the LifeCourse framework, at this time we are not an official member of the national Nexus group. If you would like more information about TN’s activities using the LifeCourse framework, contact Emma at emma.shouse@tn.gov.