Finding a reliable sitter can be a challenge for any parent, but for parents with special needs children, finding someone reliable who can also understand the child’s complex care or behavioral needs can be even harder.

This was the situation Jen Ivey and Tessa Quinlan were dealing with when they decided to start a Facebook group to help people network with reliable caregivers.

The Illinois Department of Public Health reports that 1 in 6 Illinois adults identify as a caregiver for a friend or family member with a health problem or disability, including special needs children.

Special Needs Respite Connection of SW Cook and Will Counties is a community on the social media platform created by Ivey to help parents like her and Quinlan share contacts and connect with caregivers capable of looking after individuals with special needs.

“Both of us have sons with autism, and as they got older, finding caregivers for them was getting harder,” explained Quinlan. “A lot of people in local babysitting groups don’t have the experience with special needs kids, especially teens who are bigger and sometimes stronger than the sitters. We were talking about it one night and the next day Jen called me and said ‘look what I did.’”

Ivey had created the Facebook group and added Quinlan as an admin to help run it in 2018, when their sons were 14 and 12.

“At the time we had a core group of resources to pull from through schools and therapy and we invited them, and they brought in other friends and connections,” said Ivey.

Since starting the group, the community has grown significantly and currently has over 2,800 members, about 40% of whom are caregivers.

“The families were there from the start,” said Quinlan. “That wasn’t the problem. The hard part was getting more caregivers to fill the demand. We started looking for people in other groups online for special needs parents and started messaging them to ask them to join.”

Growing the circle

While the pair originally started the group with a focus on Will County, they quickly expanded their radius. Quinlan lives in Mokena while Ivey lives in Lockport, which put them both within driving distance of many southern Cook County communities like Tinley Park and Orland Park and Naperville in DuPage County.

“We knew our resources needed to expand, and we found caregivers from the Tinley and Naperville areas who were willing to travel for jobs,” said Quinlan. “We allow parents from outside our immediate area to join too, but we always remind them that it isn’t our main focus, and taking jobs is at the discretion of the caretakers.”

Quinlan noted that the group grew in popularity even outside their expanded radius, because “there was no other group like it in the area.”

Recently, she noted, she and Ivey helped some members from the Wheaton area set up their own similar group for their area, which had seen a growing demand.

In addition to helping start a sister group further north, Quinlan and Ivey have also recently expanded within the group itself, opening up posting to requests for care not just for special needs children, but for elderly family members with disabilities.

“The original intention was just for kids and family members with special needs, and that’s still our primary focus,” explained Quinlan.

The mission has expanded into trying to connect people looking for help with parents with dementia or who are recovering from things like a stroke.

“After talking to people in the community, we realized those circumstances can be very similar and some of the caregivers have the same required skills,” Quinlan said.

Many of the caregivers who frequent the group are college students pursuing careers in nursing, medicine, or special education.

Many are also nurses, registered behavior technicians, or special education teachers who are either retired or looking for extra money on the weekends.

Building a trusted network

“This group isn’t for people looking for full time nannies,” said Ivey. “It’s more to find trusted sitters who can provide care a few days a week before or after school for kids, or in the evenings so people can go out and enjoy themselves without worrying about their loved ones at home.”

Quinlan and Ivey vet posts in the group to ensure that posts are only from individuals offering or requesting services, and encourage people to share their experiences (positive and negative) with other group members.

Still, the group recommends all users do their own background checks or seek references when making agreements with caregivers. Many members of the group are willing to provide that information for each other.

“This is something we do on our time for free because we know how important it is for us, and we wanted to help other families,” said Ivey. “We do encourage people to do their own checks, but the community helps a lot with that.”

She said on more national care connection websites it may be harder to know who is performing the background checks.

“Which is part of why we wanted that personal connection with the community in the group,” Ivey said.

Outside of the group both Quinlan and Ivey, who originally met through their church and community activities for special needs children, do separate advocacy work for the disability community.

Quinlan is on the Will County Mental Health Board while Ivey and her husband have lobbied in Springfield for continued support of the state’s Direct Support Professionals Medicaid funding, which helps a lot of families with disabled children pay for care and special services.

“This was just another avenue for us to expand on our advocacy for our kids and for other families,” said Ivey. “We just want to get the word out to help other families get the support they need to live their best lives.”

“We have some really great stories that have come out of this group,” Quinlan added. “It really empowers us to keep going and let us know this has a purpose.”