Empowerment in Practice: How One Innovative Program is Helping Several St. Louis Seniors Make the Most of Retired Life
They say that we tend to befriend those who look like us, so you’d expect that the new friend I made on a recent business trip would be a lot like me: a young, professional, millennial (though I hate to claim the label), White guy from a big city on the East Coast.
In reality, my new friend, Georgia, is a little different.
I met Georgia when work had taken me to St. Louis to attend the annual convention of the American Association for Intellectual and Developmental Disabilities. While I was there, I decided to pay a visit to St. Louis Arc, an ANCOR member and one of the region’s largest providers of services to people with intellectual and developmental disabilities (I/DD). I met Georgia when I sat down to learn more about St. Louis Arc’s Aging with Empowerment program — a program they affectionately call “AWE.”
I have to admit that I was a bit skeptical about a program that proclaims “empowerment.” Sure, “Empowered” is in the name of the public awareness campaign I’ve been managing since I joined the ANCOR team four months ago. So often, we hear people talk about how they’re empowering others, but rarely do we truly see empowerment in practice — giving people with I/DD the opportunity to make their own choices, or the opportunity to own their own successes (or even, on occasion, their own failures).
When I got to AWE — tucked away in a quiet, shady neighborhood somewhere around where St. Louis City stops and St. Louis County starts — I met Georgia. When I say Georgia doesn’t look like me, I’m not exaggerating. We’re both young, but Georgia has a few years on me (my mother taught me never to reveal a lady’s age) and could hardly be considered a millennial. Whereas much of my life centers around work, Georgia is retired. Though I grew up in the Midwest, I’ve been living in the D.C. area for nearly a decade, while Georgia has spent her entire life in St. Louis.
And, although it hardly makes a difference, Georgia has a disability.
When I met Georgia, she was having a bad day. She wasn’t too keen on talking, though she had agreed to be interviewed. That changed, however, when Mary interrupted our conversation. Mary — another participant in the AWE program — interjected about the time they most recently went to the casino. When she did, Georgia lit up. “The casino?” I asked. “Is Georgia some kind of high-roller,” I started to wonder.
As I took a moment to reflect, I started to feel guilty for being surprised that Georgia enjoyed going to the casino. Why wouldn’t Georgia enjoy going there?
Perhaps not. Georgia excitedly explained to me all about how she likes to visit the riverboat casino across the Mississippi in Illinois — I could see it from my hotel room. She beamed about how she loved going to the buffet there. And though she’s hardly a high-roller, she did mention that she played the penny slots a couple times with some money she had gotten from family for her birthday.
As I took a moment to reflect, I started to feel guilty for being surprised that Georgia enjoyed going to the casino. Why wouldn’t Georgia enjoy going there? I’ve been known to throw $20 into a slot machine once or twice in my life, and nothing can stand between me and a buffet. What about Georgia’s disability would make her any less likely than me to enjoy an afternoon on the riverboat?
Admittedly, I didn’t arrive at that conclusion right away. Rather, my conversation with Nora Cunningham helped galvanize my thoughts on the matter. As one of the Direct Support Professionals, or DSPs, who works in the AWE program, Nora’s job is to ensure that folks like Georgia have a decision to make every single day about where they want to go. It’s also to ensure that the individuals she works with have the support they need to make it happen.
In some ways, AWE’s focus on supporting program participants to make and carry out daily choices to be in the community is borne of staff’s innate desire to make people happy. But in other ways, this focus reflects the very purpose with which the program launched a little more than a year ago. “The longer people are active, the longer they live. Plain and simple,” Jessica Gantner told me. Jessica is the associate program director for AWE, and explained to me that for years, St. Louis Arc watched their supported individuals retire and almost immediately start losing their mental faculties, their fine motor skills and more. This isn’t surprising. Decades of evidence reinforce Jessica’s belief that the mind and the body deteriorate when people stop being active.
And so, AWE derives from an evidence-based premise: people with I/DD, even when able to enjoy a decades-long career in the workforce, are more likely than their peers without disabilities to experience dementia or see their lifespan shortened because they have fewer opportunities to be active in their communities. To put it in Jessica’s words, the span between the end of one’s career and the end of one’s life is the “second great transition age.” Just as what happens in the years after a person with I/DD graduates high school are primary predictors of their chances of success later in life because of the transition away from school-based services into postsecondary education or the workforce, so too are the post-retirement years a significant indicator of how long and how well a person with I/DD will live.
“The longer people are active, the longer they live. Plain and simple.”
Hence, this focus on personal choice and decision-making being a daily feature of life makes a good bit of sense. Many of the AWE participants live around the corner in St. Louis Arc’s Dautel Circle community, a naturally occurring retirement community (NORC) which Georgia and some of her friends have called home since the 1970s. When they arrive at AWE for the day, a DSP has been assigned to support anywhere between four and six people. The DSP greets the program participants as they arrive and finds out what they’d like to do that day. If they want to go to Applebee’s, they go to Applebee’s. If they want to go to temple with their sister, they go to temple with their sister. If they want to volunteer at the local food bank, they volunteer at the local food bank.
And yes — if they want to go to the casino, their DSP better be ready to help them find the bill changer so they can use their birthday money on the penny slots.
The impact of this level of autonomy and independence is huge, but as Nora explained, achieving these outcomes isn’t always easy. When I talked with Nora, I heard a lot that I already knew. That the work of a DSP is hard. That the hours are long and the pay is abysmal. That supporting people with I/DD requires a skilled professional, but that too few skilled professionals are willing to do the job. This complicates the fact that when someone is relying on you to be there, you have no other choice but to show up — morning sickness be damned. This was a lesson Nora was still learning, as she was still in the first trimester when I met her, pregnant with her third child.
But Nora also told me much that I didn’t know. For example, she recounted the difficulty she had in making dentist appointments for some of the people in the AWE program. When she was at a conference with other DSPs and service providers several months prior, she learned why: people’s biases about disability have made dentists weary about filling their waiting rooms with patients with I/DD.
It might be easy to think, “Well, getting someone the dental care they need is part of your job.” And that’s not untrue. But what’s also true is that tasks like tracking down an orthodontist — or writing up case notes, or documenting health challenges, or catching up on emails from your 650+ colleagues and everything else that comes with being a DSP — happens outside the eight-hour (or 10-hour, or 12-hour) workday. Often, folks like Nora are spending 40 hours each week with the individuals they support, in addition to addressing the other duties of the job, which can often eat up a couple dozen more hours. Compounding this challenge is that the average wage for a DSP at St. Louis Arc — an amount over which the agency has very little control given that the state sets rates in accordance with federal Medicaid regulations — is $11.32 per hour. Meanwhile, Qwik Trip, a chain of convenience stores through out the Midwest, is starting employees at $15 per hour in the St. Louis area.
Hearing Nora describe this conundrum was troubling. But in the same conversation, she had shared so much about what happens in her life outside the walls of AWE. For starters, raising two children keeps her busy. On top of that, she’s recently gone back to school for her Master’s degree. She has a ton of management experience already, but with the degree, she’ll have more flexibility to combine her management skills and her passion for human services into a force for good.
When I asked Nora what keeps her going, she told me that she appreciates doing something that doesn’t carry the same stress as banking or property management, the two fields she worked in prior to changing careers and joining the AWE program.
But something Nora didn’t say to me was just as apparent: it’s in her blood. Perhaps it’s because supporting people with I/DD is something she’s always known, as her parents own a provider agency for children with disabilities in Florida. Regardless, she knows that the people at AWE are relying on her — if she’s not there for them, who will be?
In all, this is why Included. Supported. Empowered. exists: to raise the visibility of the challenges facing groups like the St. Louis Arc and to celebrate the role of people like Nora in ensuring people like Georgia can continue to be part of the community in places like St. Louis.
Herein lies the problem. In a perfect world, we’d say that when Nora is sick — or, as will be the case, needs to go on maternity leave — then Janelle or Don or Janice would be ready to step in. But nationally, the DSP workforce is in crisis; with a 45% turnover rate, nearly half of all DSPs leave their jobs within a year of being hired. In other words, even if St. Louis Arc hired Janelle, Don and Janice when they found out Nora is expecting, odds are that only Janice will still be around by the time Nora’s new arrival makes her debut. Luckily, St. Louis Arc’s turnover rate is much lower than the national average, somewhere around 30%. But in no other industry would we consider a 30% turnover rate to be acceptable. Why should we accept the same or worse for the pros who support people with I/DD?
In all, this is why Included. Supported. Empowered. exists: to raise the visibility of the challenges facing groups like the St. Louis Arc and to celebrate the role of people like Nora in ensuring people like Georgia can continue to be part of the community in places like St. Louis. AWE is just one of dozens of programs operated by St. Louis Arc, and St. Louis Arc is just one of thousands of I/DD service providers in the United States. But without proper investments in people like Georgia and Nora, programs like AWE will cease to exist.
The silver lining in all of this? You can make a difference. Want an easy way to get involved? Sign up to receive our monthly emails and like the campaign on Facebook. Want to dive deeper? Share your story with us. Still can’t get enough? Talk with me about how your organization can become a sponsor.
There’s no shortage of opportunities to advance the campaign, or to show the world what it truly means to ensure that people with I/DD are included, supported and empowered for a lifetime of success.