We were pleased to welcome Dr. Yona Lunsky as guest speaker at our Annual General Meeting on July 19, 2017. Below is a copy of her incredible presentation.
When I was invited to speak, I am guessing it was to impart some wisdom about where we have come from in the developmental disabilities field, and where we are going. But what I came to realize over the past little while as I prepared my comments for tonight, is that it is impossible for me to speak to this group professionally without making it deeply personal.
I want to begin by saying how grateful I am for this opportunity to speak with all of you. Let me tell you why.
I was first introduced to Reena in the 80’s, when my older sister, a teenager, and our entire family were navigating that difficult terrain of the transition to adulthood. At the time, I understood that Reena was a Jewish agency that my family was involved with in order to plan for my sister’s future, its office was this little building on Cartright and I knew that it also had some great recreational programs that she loved.
Reena must have made an impression on me then because it was through Reena that I got my first job in the developmental disabilities field. In the summer of 1990, fresh out of high school, I was head of the Drama program at Camp Reena. I spent 3 summers in Palgrave Ontario, and those summers changed my life. (And I am not just talking about meeting my future husband.) After my first summer at Reena, I decided that instead of being an economist or a school teacher, I would study psychology, and specialize in this field and I have never looked back.
Much of what I have studied over the past twenty something years, I began learning about over those summers. I want to highlight some of the most important learnings briefly now.
1. First and foremost, I observed how common both mental and physical health issues were in the developmental disabilities population, especially in adulthood. What I didn’t understand then but I know now, is that these issues emerge early. Some are closely tied to the disability etiology, like sleep apnea and Down syndrome, but far too many are the result of an interaction between biology and environment. But we get so used to seeing these health issues in our work, that we can forget this important fact. Sometimes called diagnostic overshadowing, we discount mental and physical health problems or we just begin to accept that they are part and parcel of developmental disabilities. They are not. As adults with developmental disabilities age, we have to work extra hard to promote their health: regular checkups, diet, exercise, positive relationships. Careful use of medications. Work from my H-CARDD and MAPS research colleagues in partnership with Reena and the Ontario Partnership on Aging and Developmental Disabilities (OPADD) has shown that adults with developmental disabilities age faster: “80 at 50”. Falls prevention, chronic disease management, complex health care planning has to start at a much younger age. Our standard models of aging supports don’t fit. In terms of mental health, the age at which adults with developmental disabilities are most likely to be admitted to hospital psychiatrically is in late adolescence and early adulthood, 15 to 20 years younger than what we see in other adults. We need better mental health supports sooner, so we can avoid repeated and stressful hospital admissions. To address these health issues we have to be inventive, bringing sectors together, as Reena knows and models extremely well.
2. I worked with young, creative staff over those 3 summers. I saw how the work they did inspired them, but how without the proper supports in place, it could also exhaust them. And I saw how much they meant to the people they supported and how much they meant to each other. I learned about team work. And for any of you, who want to learn about how to work as part of an effective team, spend time with the direct support professionals at Reena and in this sector.
3. I met many families. I learned then, although I can appreciate much more now, how much it meant to a family to hear about the great things their family member was doing, to share with a family how much you really cared for their family member. How you appreciated them. We use the phrase “catch ‘em while they’re good” in our interventions to develop positive behaviours in those with developmental disabilities. But we don’t remember enough how this applies to what we share with families. Knowing how much a teacher or a staff loves your son, daughter, brother or sister, especially when everyone is always focused on flagging and then fixing problems that is the necessary medicine that keeps families going.
4. Most important, I learned about the strength and resilience exhibited every day by people with developmental disabilities and the importance of friendship, love, and respectful support. Starting in childhood, this group is at terrible risk of feeling lonely and isolated, of being ridiculed and stigmatized, and having to endure some very difficult and stressful situations. But if you think about it, they handle their situation, for the most part, with more grace than other people might. Having a sense of humour, being honest, being able to be flexible and put up with all sorts of changes and many things they have little control over, but staying open, appreciating the good in others. Trying every day to navigate a complex world that wasn’t designed with them in mind.
So I am grateful for that early exposure to some important realities, pieces of the puzzle that I have focused on in my research and clinical efforts: mental and physical health promotion, supporting families and paid caregivers, and building resilience.
But my gratefulness, so closely tied to my career also extends beyond my career. As a sister of someone who moved into a Reena residence in 1991, I am grateful that Reena worked together with several families of young adults to invent something that wasn’t, to find a way to design something new so my sister could move out as a young adult, similar to me and to her other siblings. The home co-created by Reena and several families including my own, was modeled and funded differently than the group homes in existence at the time, with increased family involvement.
Knowing my sister was supported, I went to the states to graduate school before settling in Toronto. I was able to enjoy then and I am able to enjoy now being part of my sister’s life, but I also know that she has her own life, and is not reliant on me or on our aging parents 24/7. What I have never really put into words before is that the only reason why I am able to do the work that I do from 9 to 5 Monday to Friday to benefit the developmental disabilities field is because I am not a full time caregiver for my sister and I can work collaboratively, respectfully, and in partnership with the caring people who are. I am keenly aware that there are far too many parents and siblings who haven’t had this luxury of time and support the way I have to make a difference for others. Because their life is full, AS IS. Imagine the innovations we could explore if more of them had this capacity to give back the way I have. If we want to hear their voices in the work we do, and the work we want to do, we need to listen extra carefully. Because it is those families who have the hardest time taking part in board activities, coming to events, and making their needs and their ideas known.
So here we are now in 2017, 30 years after my family was meeting with Reena to plan for my sister’s adult life. Some things are the same, but lot has changed, in my family, and in the sector. That said, I think we can learn from the past to guide the future.
So here is the million dollar question: How do we meet the emerging needs of those not yet receiving services who very much need them while at the same time continuing to meet the changing needs of those in service, like my sister?
I don’t have the answer, but it is question we need to keep asking. Otherwise, we are at risk of focusing on one to the detriment of the other. I am guessing Bryan, that your mom and the Reena board from the 80’s wrestled with this same question 30 years ago, in trying to support and plan for my family and other families then.
It comes down to this: we need to understand the evolving needs of those receiving service and those seeking services. Some things we can prevent, and others we just prepare for. Being afraid of what might come, and doing all we can do to avoid it is not sustainable and it is not responsible.
My kids understand this concept well. I am here in the city and 2 of them are tripping in Algonquin Park. Now I admit, I wish it wasn’t such a rainy summer. I pray that when they are in the depths of the park that it doesn’t rain on them, or if it rains that it finishes quickly. But my kids know that part of camping means getting wet. Sunshine when it happens is a glorious treat. “Lightening position” is something they get up in the middle of the night and do. And they do it with grace.
Looking into the future, we can pray, we can invest and prevent, with the hopes that things will go well. But sometimes they won’t go well, so like my boys in Algonquin, we need to prepare.
How do we prepare?
Partnerships between staff, families, individuals, and our broader community – Big cities are awesome when it comes to needing the most specialized specialist, or when you are looking for a kosher, gluten free sushi place that serves breakfast at 3am. But they are lonely and complex and can be terribly anonymous. This makes community building harder but we have to keep doing it.
Remembering that there are all kinds of experts. Decision making is harder, but the outcomes are far richer when we figure out how to play in the sandbox together – service providers, researchers, policy makers, individuals, and families. I don’t want to belabor this point, but we need to keep in mind that family is broader than just parents. We need to find ways to support and engage siblings as much as we support parents, as well as other extended family.
We need to continue to find ways to make sure that the quietest voices can be heard, and discovering new and creative means of doing so. These are the antidotes to the challenges that will come.
I thought I would end my comments with a story, one that I shared with parents of kids with developmental disabilities in a workshop focused on siblings that I did a few years back.
Once there was an aging Hindu master with a very unhappy apprentice. He instructed the young man to get himself some salt, put it in a glass of water and drink it. How does it taste? Bitter, spit the apprentice.
Next, he asked the apprentice to take a similar handful of salt and put it into the lake. They walked in silence for a little and then the master asked his student to drink from the lake. How does it taste? Fresh.
The salt was there, as much as it was in that small cup, but it was surrounded by fresh water. The lives of the people we support through Reena and their families have some salt. But love, friendship, support, and community, can be the water to help dilute that bitter taste.