In this podcast episode, Mike Carr discusses the importance of finding caregivers who are motivated by helping others rather than just viewing their work as a job. He suggests that colleges, universities, churches, and communities with a giving culture are good places to find such individuals. He also emphasizes the importance of making the work fun and enjoyable in order to retain these individuals.
The Staffing Challenge in Autism Care: Lessons from Over 30 Years of Experience
For over three decades, my wife and I have been on a journey that few understand but many families face: the complexities of autism care. Our son, diagnosed at 12 months, is now 34 years old, and during all these years, one thing has remained a constant struggle—the staffing challenge. It’s a problem that so many families in the autism community know all too well: how do you find and keep the right people to provide care, therapy, and companionship for someone who can’t communicate verbally?
This journey of finding the right staff to care for our son has shaped our approach to autism care, and it has taught us lessons that we want to share. These lessons have been learned over countless experiences, many sleepless nights, and endless trial and error. There are three key takeaways that have helped us navigate the staffing challenge: resetting expectations, finding the right staff, and most importantly, keeping them once we find them.
Resetting Expectations: Trust and Reliability Above All
The first step in solving the staffing puzzle is resetting expectations. This doesn’t mean lowering your standards, but it does mean finding a balance between idealism and pragmatism. Over the years, we’ve learned that certain qualities—trust and reliability—are not just desirable; they are absolutely essential.
Trust: The Foundation of Care
From the beginning, we realized that trust was the cornerstone of our care model. When you’re hiring someone to take care of your child, especially a child who cannot communicate their needs, trust becomes non-negotiable. These caregivers are responsible for intimate tasks—helping with bathing, dressing, feeding, and monitoring health—all of which require not just competence, but a deep understanding of how much you depend on them. We’ve been in situations where we had to leave our son in someone’s care, and there was no room for doubt or hesitation. The person had to be someone we could trust without question.
Trust is something that cannot be compromised, and over time, we learned that even if a caregiver had a strong connection with our son or excelled in some areas, a lack of trust would create chaos. We needed to be able to count on them in every moment—especially when our son couldn’t speak up for himself.
Reliability: The Key to Consistency
The second lesson we learned was the importance of reliability. Early on, we worked with high school students. While many of them were great with our son, we quickly realized that their inconsistent schedules caused more harm than good. They would show up late, cancel at the last minute, or simply not have the maturity needed for the responsibility of care. While their intentions were good, the disruption this caused in our son’s routine was not worth the risk.
We soon discovered that while experience and flexibility might seem important, reliability was by far the most crucial quality we could look for. We needed caregivers who would show up on time, every time, and who could maintain a routine that provided stability for our son. Once we reset our expectations, we understood that a caregiver’s reliability was the most important factor in the peace of mind that we sought.
Where to Find the Right People: Our Most Effective Resources
Once we got clear on the qualities that mattered most—trust and reliability—the next challenge was finding the right people. Over the years, we’ve cast a wide net, trying various resources to find caregivers. Some methods worked, others didn’t, but we’ve learned a lot along the way.
High Schoolers: A Mixed Experience
In the early years, high school students were our go-to caregivers. They were energetic and enthusiastic, and they had a natural rapport with our son. But as he grew older and his needs became more complex, we realized that these young caregivers were not equipped for the physically demanding tasks that came with caring for a grown adult with autism. It wasn’t long before we started to notice that high schoolers weren’t quite up to the challenge.
Churches and Community Groups: Older, Caring Adults
Churches and community organizations became another valuable resource for us. These venues often attract people who are motivated by a desire to help, rather than just a paycheck. We found older, caring individuals—especially those who were retired or semi-retired—who wanted to offer their time and expertise. But there was one hitch: energy levels. Some of these wonderful individuals couldn’t keep up with the physical demands of our son’s care. Despite their maturity and compassion, they lacked the stamina needed to handle our son’s high energy.
Colleges and Universities: A Goldmine for Talent
By far, our best staffing resource has been universities. Specifically, we turned to graduate students in fields like special education, kinesiology, nursing, and speech therapy. These students were already studying human services and often sought hands-on experience to apply their coursework. Graduate students, especially those pursuing master’s degrees, tended to be more prepared—both physically and emotionally—than undergraduates. Their practical knowledge and commitment to their chosen fields made them perfect candidates for our son’s care.
We also built relationships with local professors and program coordinators, who were invaluable in helping us identify the right students for the job. Over time, this connection with universities became a reliable pipeline of skilled, motivated caregivers who brought expertise and compassion to the job.
Unconventional Communities: The Climbing Community
Sometimes, the best candidates come from the most unexpected places. For us, that place was a local climbing gym in Austin, Texas. The climbing community turned out to be an excellent source of energetic, physically capable caregivers. Climbers are often highly attuned to teamwork, have physical endurance, and possess a strong sense of community. These qualities made them perfect for caring for our son. The sense of adventure and physical stamina required in climbing made these individuals more than capable of handling the demands of autism care.
How to Keep the Right Staff: Keeping the Flame Alive
Once we’ve found the right people, the next challenge is retaining them. Caregiving can be grueling, and turnover is often high, especially when caregivers are paid hourly and don’t have opportunities for advancement. But we’ve discovered a few key strategies for keeping staff motivated and engaged.
Making the Job Fun and Rewarding
We’ve learned that making the caregiving job enjoyable is crucial. We’ve organized group activities, like park outings or trips to arcades, to make the experience more fun for the staff. Additionally, socializing our son with other individuals facing similar challenges has created a sense of camaraderie, not just for him, but for the caregivers as well. These shared experiences have helped reduce burnout and foster a sense of community among the staff.
Creating a Family Atmosphere
Another strategy is fostering a family-like atmosphere. When caregivers work with our son, we invite them to join us for dinner. We strive to make them feel like part of the family, not just employees. This small gesture goes a long way in helping them feel valued and appreciated, which in turn helps keep them engaged and motivated.
Offering Above-Average Pay and Benefits
Of course, pay is critical in retaining good staff. While budget constraints can sometimes make this challenging, we’ve always prioritized offering above-average pay. The emotional and physical demands of caregiving require compensation that reflects the hard work and dedication caregivers put in. We’ve found that paying a competitive wage is a key factor in keeping staff loyal and motivated.
Forming a Nonprofit: Building a Supportive Community
Several years ago, we took the step of forming a nonprofit organization dedicated to providing care for individuals with profound autism. This allowed us to bring together a team of caregivers who could support each other, provide training, and help prevent burnout. It’s created a sustainable model of care, and we’ve been able to offer enriching experiences for our staff, like outings to the climbing gym. This supportive environment has made it easier to retain staff and build a strong, committed team.
Conclusion: Navigating the Staffing Challenge with Empathy and Practicality
The staffing challenge is one that will resonate with any family raising a child or adult with autism. It’s a long, difficult process to find the right people, but it’s also one of the most important aspects of ensuring that our loved ones have the best possible life. By resetting expectations, focusing on trust and reliability, seeking unconventional staffing resources, and fostering an environment that supports caregivers, we’ve been able to build a system that works for our family.
If you’re facing the same challenge, know that it’s not about finding the perfect caregiver. It’s about finding the right fit for your situation. Whether that’s through universities, community groups, or even the local climbing gym, there are solutions out there that can make all the difference. Prioritize trust, reliability, and motivation, and you’ll find a caregiving team that lasts.
Stay tuned for more insights in our next video. We’re all in this together.
Transcript
Mike Carr (00:08):
So for this week’s Autism Labs video, I’m going to talk about what’s been our toughest problem, and I think it’s probably everybody’s toughest problem in this space, which is how to solve the staffing challenge, the people challenge. So our son’s 34 and he was diagnosed with autism at 12 months. So we’ve been working on this problem for 33 years, and we have tried probably just about everything I want to go over in this podcast. In this video, three things that I think you might find helpful. One is resetting expectations. The second one is where to find the folks. What have we found the best resources, the best places to go? And then how to keep them once you have them. So resetting expectations, but without settle. So one of the things that I think we’d all agree is you can’t compromise on is trust. You absolutely have to be able to trust the individual, the colleague, the staff with your son or daughter, especially if they can’t talk, if they can’t communicate what’s been going on.
(01:14):
The second one though, however we have settled on, and that’s been a bad decision and that’s reliability or consistency. So we’ve had folks over the years, high schoolers, let’s say in some cases musicians and artists that were just fantastic with our son. They enjoyed working with them. They had fun, he had fun with them, but they didn’t always show up on time. Even though you may feel desperate and that you have to compromise on that, we found that the disruption and the stress and the angst it causes isn’t worth it. So trust and reliability are the two that we just feel are super, super important. The third thing is motivation. And in here I think we have settled and I think it’s okay to settle a little bit. What we have found though is that folks that have a calling, they want to serve, they want to help, and they get charged from that, right?
(02:06):
They find joy from helping others. Man, if you can find somebody like that, they’re motivated for the right reason. It’s not just a job. They actually want to engage with your son or daughter. They actually want to see if they can bring something out of that person. We always are on the lookout for somebody like that. So where do you find folks like this? Where are the places to go? Problem we’ve had with high schoolers is as your son or daughter grows older and our son’s now 34, you can’t really have someone that’s 17 or 18 or 19 working with someone that’s 30, 40 years old, especially if they’ve got to take ’em to the bathroom and shower them and all that. It’s just the dynamic there doesn’t work very well. Churches though have been an interesting place to go to. Sometimes you’ll find older adults there that are caring and giving.
(02:52):
The biggest challenge we found there though is just energy level and endurance. Our son is very active. I’m not saying there aren’t older adults that don’t have high energy. There certainly are, but that has been a problem that we’ve run into with going to some of the churches or communities that we’re part of and trying to find folks that are older and more mature, but they’re not quite up to the endurance that’s required. Here’s a place that absolutely for us has worked out the best are colleges and universities where they have degreed programs that people have already made a conscious choice for a career and we’ve been more successful with grad students than undergrads. But some of the degrees that we’ve found very helpful is special education. If you’ve got somebody with a master’s or working on their master’s and they need some money, a great choice, they’re already sort of looking for opportunities to try out some of the things that they’re learning.
(03:52):
They’ve got training and skills that often benefit our son and the professors, the teachers themselves will help direct students that are more in tune with what you may be needing if you have a relationship with a school already or some teachers that could help funnel the right students to you. That has just been invaluable. So what are the degrees? Special ed, kinesiology, nursing in some cases, speech in some cases, recreation therapy or recreational oriented degrees. Another good one are communities where the culture is about giving. What do I mean by that? Well, one of the places that we found that’s just amazing is crux climbing gyms in Austin, Texas. Climbers as a community are used to helping one another. It’s part of the vibe and the expectation. If somebody’s climbing up the side of a mountain, somebody else has got to be either helping making sure that it’s safe and that they’ve got all their equipment.
(04:51):
Other communities like that, hiking, rafting. Also, a lot of these folks are younger and they have energy, right? They’re outdoors, they’re hiking, they’re rafting, so they have the energy level. Those folks have just been an invaluable resource for us. And then the last thing, the third point is how to keep ’em once you got ’em. And if you’ve got just your own kiddo and that’s all you’re worried about, which is where we were for many years, it’s hard to offer the career advancement and all the other things that they may be looking for. So what did we do? We tried to make it really fun. We tried to get them out of the house and make suggestions, and we had a golf cart for a while and they could drive the golf cart around to the parks and everything. Or maybe have a group activity where there’s maybe somebody else in the neighborhood that has someone similar and that they can get together and socialize and have your son and daughter socialize with someone else that’s maybe a little bit higher functioning.
(05:44):
In some cases, we’ve seen situations where fuera a profoundly autistic or severely autistic individual with someone else that’s maybe more verbal. It’s almost like a sibling relationship, and there’s a bond there that develops. That’s really cool and really exciting. And then for the colleagues, the staff, it’s also fun. They have somebody to talk to, they have somebody to commiserate with. That really is a great way we think, to keep folks excited and engaged and they don’t get burned out, start looking for a job elsewhere. We also try to create a family atmosphere. So if they’re here during the dinner shift, they’re always invited to dinner and we don’t charge ’em anything for that. We just want them to sit down at the table as if they were our son or daughter or just a member of the family with our son, and we have a nice meal just like you would.
(06:31):
And that’s a perk that we offer. But it’s just a way to make them feel part of something that’s different than just a normal job that they get paid for. And that’s it. With respect to pay, we do pay above average. Now, there’s often budgetary and financial constraints there if you don’t pay a little bit above minimum wage. It’s just tough even with people who have the right calling and mindset to get them to stay because they’re just not making enough money to live on. The biggest thing that I think that we’ve done besides what I’ve already talked about, and this is a heavy lift, is you form an organization. We formed a nonprofit. You bring in not just three or four, but half a dozen, a dozen or more folks. You have then a staff that you can offer career advancement, you can offer all kinds of training.
(07:20):
We get them out into the community and into very fun environments like Crux Climbing gym. It’s just a really fun, exciting place to have this kind of a community involved. It’s much better than sitting inside somebody’s house working puzzles all day long. Or we go to an arcade where they get to play games and then they get to go outside and have a picnic and all that. So our parks, right? So this idea that if you can associate yourself with a community or start an organization where there are lots of other like-minded individuals, it’s the best of all worlds and helps you maintain the right culture and everything else. So I hope this helped and we’ll continue talking to you with the next video. See you.
