Using the LifeCourse framework with adults regardless of communication style or abilities

April 29, 2015 - 11 minutes read

Recently, an attendee contacted us with a question about the LifeCourse framework.  Here is the response that our director, Sheli Reynolds, sent:

The two questions you asked about were:

  1.  Applying life course with non-verbal person
  2.  Adult person who has developmental disability so behavior capabilities remain in younger life stage

The LifeCourse framework and its tools are designed to assist anyone to think about what they want in their life and to then break that down into manageable steps to moving towards that vision, regardless of communication style or abilities. It is the person that is using the tool that must identify ways to communicate with the person to understand what they need or want. For a person who is non-verbal, it’s typically the family or a close caregiver that can interpret the things that make this person happy.

Photo: Eric (left) and his sister, Sheli, at campMy brother is 32.  He communicates using words, but does not have a large vocabulary and he also has cognitive capabilities that are similar to those that are in much younger life stages. My family works really hard to understand what makes Eric happy– we know he likes race cars, being helpful and around people. We also know when he is stressed and when there might be times of tension. Eric does not verbally communicate any of this to us, but we can tell by his behaviors, his emotional state, his attitude, etc. Sometimes much of this would go unnoticed if someone did not know Eric well. I imagine the the person you are referring to has someone in their life that can see the “twinkle in their eye” when it comes to different things they are dealing with– it is those twinkles that can enhance the vision for the future beyond only ensuring healthy and safety.

I am unsure of the person’s abilities to do different things, but this framework is about starting small and starting where a person is. We have been meeting with some parents in St. Louis who have children across the lifespan and after hearing about the framework and applying the tools to their situations, they started to make very small baby steps.  For one, the baby step was to just start capturing the things that ensured quality of life in the different life domains (what makes the person happy as it pertains to their day-to-day activities, to their social and spiritual relationships, to their housing situation, to their health and wellness).  Regardless of a person’s ability, the vision for a quality of life in each of these life domains is predominately the same (to be happy, healthy, loved, safe and secure– as defined by that person). The goals as a family or caregiver is to begin identifying these things beyond only paid services to ensure that this quality happens.  From personal experience, I know that the state of disability services cannot ensure Eric’s quality of life, the services are designed to assure health and safety.  It is knowing the “twinkle in his eye” types of things that are going to do that.  I know that staff are very important to Eric’s life, so this requires us to 1) build a relationship and trust with the staff to ensure that they care about and love Eric and won’t harm him and 2) articulate to them what is important to Eric.

Also, It is the “life experiences” that sometimes feel risky but are the things that give us meaning in life….such as trying new things we didn’t know we could or saying “hello” to a stranger when we are scared.  What are the “life experiences” for this person that you can take baby steps in doing?  What we have found from the parents we have been talking to, it is really the parents that need to begin allowing those baby steps to happen.  Out of fear and love, the overprotection has created isolation which becomes even worse as a person ages.  It could be as small as letting the person order their own meal at a restaurant, checking in by themselves at the doctors office, or being silent for longer so they have time to respond to someone communicating with them.

A new life experience happened in our family recently when Eric got a new cellphone for Christmas.  For years, I asked my dad to get a phone for Eric even though he thought that was something that would not work for him (for a whole list for reasons).  My siblings and I decided to take the leap and get Eric a phone, we figured: What would it hurt to try? Now, three months later, my dad has upgraded Eric’s phone to a smartphone so he has the ability to see the pictures of people calling and can play games in his free time.  The first few weeks were a little tricky as he learned about the phone: his entire phone book received a text a few times in the middle of the night from Eric, somehow he changed the message settings to Spanish, and, of course, he called dad multiple times.  So, yes, we had to take the risk of Eric “messing” up with his phone to teach him how to use it and to work through some of our concerns. Now, only after a short time, my parents are wondering why more people with disabilities don’t have phones as part of their life. They now see that this phone has created another level of quality assurance by having the ability to communicate with Eric at any given time and for him to also communicate back. It also has created a closer bond with me and his other family members who live out of town. He can now call me or his nephews when he wants to say, “hi,” and right now it is us calling him more until he figures all of this out.

I don’t know the person you are referring to, but I do believe that all human beings, at any age or any ability, have a way of communicating their “good life.”  I also strongly believe that everyone has the same vision for a quality of life, and that, for persons with disabilities, it may require others to continuously, sometimes through trial and error, keep identifying strategies and life experiences to make the vision a possibility.  The vision must build upon health and safety, but it must go beyond that for all people.

I’m not sure if I answered your question, but the framework is only as good as the people and the relationships around the person.  The tools are not a “new” way to communicate but rather a tool for capturing the information the way the person already communicates. The life experience book built on life stages is designed to give ideas of the type of experiences that make us human and a part of the fabric and expectations of being an American citizen. The stages are only a way to organize the booklet, so that someone who is older who has not had life experiences from the others stages should start at a younger stage. It is by life domains to allow the person or their family to start with the domain that is most relevant to them, there is no way to do all of those things at one time. As with anything in life, baby steps that slowly nudge towards a “good life” is the goal, and hopefully the tools can help make that more manageable.

I am always open to learning from those that are trying to understand and apply the LifeCourse framework we are develpoing, so please feel free to stay in communication with me.  I would love to hear back from you if this answer was helpful and if there are other suggestions you have for me as I think about how this can be something helpful to as many people as possible.

 

Sincerely,

Sheli

Michelle “Sheli” Reynolds, PhD
Director of Individual Advocacy and Family Support
UMKC Institute for Human Development
University Center on Excellence on Developmental Disability
www.mofamilytofamily.org

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