When Vivi was just two and a half, her parents learned that she had Autism. As librarians, their instinct was to dive in and research as many resources as they could. They found that most of the therapies Vivi would need would be provided by the school district, but there wasn’t any real support for the family offered by the school. They didn’t have a lot of family nearby and weren’t sure who to turn to when they needed a well-deserved break from daily care of a toddler with Autism.
Then they found In-Home Respite at Community Living.
Families in the In-Home Respite program are given an annual allowance they can use to pay their respite providers. Community Living runs background checks on the providers, who work as independent contractors, and can help direct families to lists of public providers if they don’t already have someone in mind. The family is responsible for the hiring, firing, and paying the provider, and Community Living helps families receive reimbursements for the wages they paid.
After some trial and error, Vivi’s parents were able to find two amazing providers. Grace and Emily were college students studying special education and had their own small business offering respite services to help them pay for school. Because of their expertise, and thanks to In-Home Respite funding, the family decided to pay the students $25 an hour, a generous wage fifteen years ago. Vivi’s dad Jim says it’s some of the best money he’s spent. “Those two young ladies became an important part of the team raising my daughter,” he said.
After spending a lot of time with Vivi, Grace and Emily eventually asked to start taking her into the community. They’d visit the zoo, amusement parks, and concerts, and because Jim didn’t have to worry about where their hourly pay for respite was coming from, it freed up room in his budget to pay for Vivi to have those experiences. And because Grace and Emily knew Vivi so well, Jim started asking them to come to IEP meetings at the school. They could provide more insight about what Vivi was like at home and understood the verbiage the school district used since special education was their area of study.
“Those two young ladies became an important part of the team raising my daughter.”
While Grace and Emily were over, the family was able to accomplish everyday tasks that were tougher to tackle while taking care of Vivi, too. “A lot of the stuff we used respite for was just mundane,” Jim said. “We would call those girls in so we could go to the grocery store or clean the house.” They also called on Grace and Emily when they wanted to just take a break and see a movie or spend special time with their son, Vivi’s younger brother. When they had to spend a day doing something like picking out and purchasing a couch, they didn’t have to worry or feel guilty about leaving Vivi at home. “You think ‘If I take the time to go buy a couch, am I shortchanging my daughter who needs constant play therapy?’” Since he knew Vivi would be perfectly happy hanging out and playing with play-doh with Grace and Emily, he was able to do the things he needed to do.
Eventually, Vivi’s grandma moved from Texas to Wentzville and because In-Home Respite allows for family members to serve as respite providers as long as they don’t live in the same home as the person being cared for, she could be paid to look after Vivi. “You can’t just keep going to your sister or your mother-in-law because they have their own lives and taking care of people with special needs is hard. It’s difficult for the family to be constantly called on,” he said. Jim says that because the money is coming from a third party, it makes it easier to offer to pay for a family member’s time, and makes it less awkward for the family member to accept payment for caring for their relative.
“It’s helped my family tremendously.”
Now that Vivi is older and more independent, the family doesn’t rely on respite like they used to. She graduated from high school and is headed to St. Charles Community College this fall. She can be left alone at home like any other adult, so the family says they haven’t touched the funding in years. Since it wasn’t a “use it or lose it” allowance, they didn’t feel the pressure to use unnecessary respite, but could rest assured that it was there just in case an emergency situation arose.
Reflecting on the times when respite was their lifeline, Jim said “If we hadn’t gotten the type of help we got early on, we probably would’ve had to move or my wife would’ve had to change her professional aspirations.” He says it’s hard to imagine what life would look like now but that not having respite would’ve had a “significant negative impact” on their family. “It’s helped my family tremendously,” he said.