ROCHESTER, N.Y. — The special needs population relies on the assistance of caregivers to support them in every day activities. However, years of shortages don’t seem to be coming to an end any time soon, and volunteers have become more important than ever.

“We made collages with a group of people from lifetime assistance,” Sarah Mehta, the director of Grow for Adults with Intellectual and Developmental Disabilities (IDD), said.

She created the club at the University of Rochester because she recognized the need from watching her older brother grow up.

“Growing up, I kind of saw a lot of the problems that kids faced and like, adults as my brother kind of like transitioned into becoming an adult. Right now he's 24, and he has down syndrome. So I just kind of saw sometimes there's lack of community engagement. There’s lack of like inclusive programs,” she said.

“It used to make me upset because I was like, 'oh, this is so annoying. Why are there so many waitlists for day-hab and stuff?' But I understand why there is. I think that this is a field that is definitely hard to get into because of the lack of seeing different people have different abilities. So it’s no one’s fault that there’s a caregiver shortage, but we can all do things to try to make it better," Mehta said.

Growing up familiar with the special needs community, caregiving came naturally to Mehta, but that is not always the case for the next generation.

“That was actually a little bit harder to figure out how to train volunteers, I guess, because you want to kind of like emphasize inclusivity. And sometimes people don’t know how to act in certain situations, but I think a lot of it is just about meeting people where they’re at. Do you need help with this? If not, then you just kind of let them do whatever they’re going to do,” Mehta said.

Lack of knowledge and practice is why the National Library of Medicine doesn’t see the caregiver shortage coming to an end anytime soon. It found that less information about the industry is being passed along to the next generation of potential caregivers.

“It's significantly challenging now to find, people who want to work in this field,” said Michele Suhr, vice president of residential and day services at Arc of Monroe. “We talk about continuity or consistency with the people that we support, which anybody wants in their life. And we have unfortunately a revolving door.”

Arc of Monroe is an organization who sees firsthand the impacts the caregiver shortage has on the community. Every little bit of help can go a long way for their staff.

“We love volunteers because, when you're volunteering, you're doing it for a purpose. And that's what we're here for. We want to make a difference in people's lives. So if a volunteer is coming to us asking us if we could utilize their time, we certainly want to,” Suhr explained. “Natural supports and building a relationship. It can be a volunteer now, but maybe a friend for life. But it does help. We have a shortage in staffing. So if we have volunteers coming in, there's certain things they can't do. That maybe the staff are overpowering food for lunch and they're at the table, you know, socializing or doing activities with them. So it gills a void for the people that we’re supporting while they’re there volunteering.”

“I think a big part of it is the fact that people who don't have developmental disabilities are just not exposed to people with IDD like ever. I know a lot of college students had never had any sorts of experiences like this or just experiences with people with different abilities for them,” Mehta explained. “Some people just don't think about this as a career path. And I know a lot of people when they have experiences like this in college that will kind of like set their career path.”

She says everyone should have an opportunity to test the waters of the industry and feel the impact caregivers have on the special needs community as well as themselves.

“It’s just too good to create like an integrated environment, because I think sometimes with the habilitation services there, if you don't get a chance to do community engagement activities, it can very much feel like you're separating people with it from people without. So I think by just having everyone together, like people of all abilities, just doing things side by side, you're just creating a more inclusive environment,” Mehta explained. “The people here like the participants here. I think that they do get a lot out of it as much as we do, just because it's fun. We're meeting new people and making new friends and just working together. I think that's the most important thing."

“I've been in the field for over 25 years. I started in college, and I think once you get your feet wet, you just come in and see what we have to offer and what we're doing in people's lives to make a difference, you may decide this is where you want to stay in. Your career can land here, or you just become a support to the person,” Suhr said.

Grow for Adults with IDD volunteers with many organizations multiples times a month, and student volunteers are welcomed to join however they can, when they can, even if they aren’t studying a field to join the industry. Mehta is a cellular and developmental biology student.

“We do art classes, but we also are running a cooking workshop in a few weeks. We try to host seminars about the support of decision making or the Office for People with Disabilities, because it can be kind of hard to navigate that website. So we want to have seminars about like self-advocacy and learning how to apply for services and stuff like that, so people with it feel empowered to do so. Also, we had a panel discussion of a bunch of experts in the fields like developmental pediatricians, teachers, people with ID just like talking about their experiences and how they want to be treated and respected and things like that,” she said.

Due to the caregiver shortage, the Arc of Monroe has looked into ways to get more people involved, and it starts with training. They train all of their staff to care for people with IDD, but have plans to expand to a younger demographic in 2025.

“We aren't going anywhere. And I have to share with you that the people we support are living much healthier and longer lives. So, we need people, and we, we would love to have the next generation start and stay here, for a lifetime, if you will, and be able to support the people,” Suhr said.

Programs and clubs like Grow for Adults with IDD can be another stepping stone for training and another way to get involved in the community.

“I actually really look forward to these kinds of events because I love art, generally speaking, and everybody who comes: volunteers, participants, support staff, they’re all so nice. So, it’s always just a really good environment,” Mehta smiled.