One of the events I really looked forward to during my time as Executive Director of LABBB Collaborative was our Alumni Dance. Students who graduated as far back as the ’80s attended. These graduates are in their 50’s now!
As I walked around to each table to speak with the graduates, I was prepared to ask three questions. I did this every year and they became stories that I stored in my head to tell every new parent why we were so committed to our mission statement. I would ask the graduates 1. “What social activities are you involved in?” 2. “Where are you working or going every day?” 3. “Where are you living?”
I heard many stories that were very positive and stories that were very sad as well. Most times, the sad stories were about how a graduate lost a parent. What stirred in my head afterward, was, “who is taking care of them? Are any siblings or extended family members involved?” Who has all the information that the parents or guardians had? This void has to be taken care of by someone, I am sure they have medical appts, SSI/SSDI, a Special needs trust, among many other needs, who is managing all this, was this all in place before the parents or guardians passed away?”
LABBB colleagues often reflected on the reunion dance for the next few days and we shared the stories we heard from the graduates and many of them heard the same stories as I did. We always expressed our concerns and wondered about their future care.
We worried about graduates who were older and still living at home. We understood the reasons behind this, but we also knew that graduates who live in group home settings have many of their needs taken care of, especially social activities, and being part of an extended family of peers is so important to their well-being.
Planning is emotional. So isn’t hearing stories like we heard at our alumni dances. We know losing a parent or guardian will always be the most difficult of all, we just wanted to know how their lives were being taken care of and if there was any planning for when this eventually happened.