Supported Employment: The End of an Era

 My mom passed away in August 2018.  Leanne had to leave the community where she was raised - her friends, neighbors, church, dayhab - to join our family in another state.  Because she is such a social individual, I knew that finding that sense of community in her new residence would be instrumental in helping her heal from her loss.  

We found a supported employment agency and they interviewed Leanne about her skills and preferences.  She told them that she would like to work in the grocery store.  Leanne said this was her "dream." 

The agency was able to land Leanne her "dream job" within the grocery store, contingent upon passing a drug test.  Click Here to see Iconic Video

They tried Leanne in a couple of different roles within the grocery store.  Neither turned out to be the right fit.  But this opened the door to Leanne's ultimate job opportunity: grocery bagger.  "Paper or plastic?" are the sweetest words Leanne had ever heard.  This is the first thing she asks customers when they come through her line.  Even when familiar faces show up and greet Leanne, she cannot proceed with small talk until the imperative question, "paper or plastic?" is answered. 

Underemployment is a significant issue that faces the Down syndrome population with available data suggesting an employment rate of only 53% (SOURCE).  While cognitive challenges can create a barrier to employment, people with Down syndrome also face lack of opportunities, transportation challenges, insufficient support systems, and discrimination.  Leanne has experienced all of these things.  

I recently told Travis that one thing I've learned with both Leanne and Josie is that, as a caregiver, we can be as proactive as possible and advocate for the best opportunities for our loved ones, but it's a dynamic challenge.  One variable changes, and suddenly a situation that worked before is no longer an ideal fit.  

Leanne's employment journey has ebbed and flowed.  Some of the challenges have been systemic, and to be completely transparent, some of the challenges have been behavioral.  Ideally, a job coach can help teach the client to do the job, and eventually back off and allow for more independence.  Leanne had gotten to the point where she worked the first 2 hours of her shift independently, and then the job coach came to keep her encouraged to finish strong during the last hour.  However, managerial changes at the store mandated 100% job coach support.  Because of staffing challenges at the supported employment agency, Leanne's shift was reduced from 3 hours to 2 hours.   That's a two hour shift, two days per week.  

There were moments when it didn't seem worth it, but we knew how important this job was in providing socialization and a sense of purpose.  There were hard moments, but there were also beautiful moments.  There are customers who are impatient and short-tempered when their grocery bagger works at a slower pace.  But there are also customers who compliment, praise, and tip their chromosomally enhanced bagger who is doing the best she can.  

One day, Leanne came home and asked, "What's a stranger?"  I said, "Well, it's someone that you don't know."  And Leanne said, "Like the customers?"  I said, "Yes, the customers are usually strangers."  Leanne chimed in, "And we don't take things from strangers, right?"  (and important lesson that we've had to review several times).  I said, "Yes, we don't take things from strangers.  Why?"  She told me that this man came through her line and she complimented his hat - it featured a sports team and Leanne is a big fan.  The man took the hat off and attempted to give it to Leanne!  Leanne politely declined because of the aforementioned policy, but talk about an example of sheer kindness and generosity from a complete stranger!  

As I am navigating caregiving for an aging adult with Down syndrome for the first time, I've questioned when one knows when it's time to retire.  Leanne's physician talks about "accelerated aging" in Down syndrome, meaning people with Down syndrome tend to "slow down" in their late 40's (SOURCE).  Signs of aging that affect the general population medically, physically, and functionally, happen earlier in Down syndrome.  Leanne will be 48 in June, and for this reason, I wanted to support Leanne as long as she wanted to work, while not pressuring her to continue beyond what she was comfortable with.  

Recently, Leanne's supported employment agency approached me about a new day program they're starting on Tuesdays and Thursdays.  It's currently 4 adult females with disabilities and one staff member.  The staff member is a former Special Education teacher and a Special Olympics coach, and she's absolutely terrific.  It seemed like the perfect opportunity for socialization with peers and customized programming in a small environment with plenty of oversight.  However, it overlaps with Leanne's work schedule.  I was a little conflicted on how to proceed, until I talked to Leanne.  Leanne immediately chose "day program with Maria!" 

Leanne handed in her resignation letter and worked her last day at the grocery store.  She received gifts from coworkers, a $5 tip from a customer, and plenty of hugs and well wishes.  She is grateful for the opportunity to spend the last five years working in her "dream job," but she's ready to move on to a different endeavor.  

We just received the schedule for the first two weeks of the day program and one day they're having a lesson devoted to dental hygiene.  Call it serendipity or a "God wink," but it definitely made me feel like the right decision has been made.  Leanne has always been incredibly passionate about oral hygiene.  She brushes her teeth after every meal!  

Please don't assume that "retirement" means Leanne will be resting on her laurels.  She will still find herself in the community at least five days a week engaging in various activities including volunteering at the library, strength training at the YMCA, Special Olympics, and serving as a Eucharistic Minister at church.  So here's to the end of an era, and then beginning of a new one!