Current Caregiving Stories

story-shawn-2With father as full-time caregiver, Shawn always has someone to count on

In many ways, Shawn is a typical 19-year-old. He and his father, Taz, look forward to camping trips and like to tinker with technology and gadgets. Sundays are spent watching football, and tonight he wants pizza for dinner.

 

But their lives are also complex. Shawn has been diagnosed with a severe Autism Spectrum Disorder and needs around-the-clock supervision. He has difficulty with changes to his routine and feeling comfortable around new people. He is non-verbal, and instead communicates through pictures and modified sign language. Taz and Shawn have developed their own shorthand—a language only father and son know. It is indicative of the bond and relationship they have, which Taz feels could not be replaced by outside supports.

“Someone said to me, ‘Nobody is ever going to be good enough for your son in your eyes, are they?’” Taz said. “And nobody would. Nobody would take care of him like family, like I would.”

 

Just one year ago, Taz and Shawn did not know what to expect each day. Taz, a single father, worked second shift as a diesel mechanic. Shawn, a student at the time, needed support to complete various aspects of his daily life. He needed someone to identify potential risks and help him make sound choices, like picking out clothes for the day. Using the traditional waiver approach, Shawn had different support providers each day.

 

“They didn’t know him,” Taz said. He recalled coming home from work and realizing his son’s incontinence brief had not been changed.

“That was her first and last day working with Shawn,” Taz said. “When it comes to cleanliness, health and respect, there’s no excuse.”

 

Another time, his provider watched Shawn knock pictures off the walls, causing over $1,000 worth of damage to the home. “He’ll test people,” Taz said. “You have to stand your ground. You can’t let him destroy the house.”

 

Finally, Taz and Shawn found a care provider who stayed with them for a year and a half, and Shawn instantly attached himself to her. “He took to her like a mother,” Taz said. But when a new job opportunity forced her to leave, their situation felt desperate.

 

“It broke his heart,” Taz said. “It destroyed his world when she left. That’s when I decided I’m not going to have his heart broken any more.”

 

The rotation of care providers began again. There were times when no one would show. Often, Taz would stay home from work or leave in the middle of a shift to care for his son. Ultimately, his job let him go.

 

“I didn’t have any other options,” said Taz. “That’s when I discovered Caregiver Homes.”

 

Person-Centered Care

 

As part of a growing movement and paradigm shift toward person-centered care, Caregiver Homes began serving people with developmental disabilities in Ohio in 2012. Structured Family Caregiving, known as Adult Family Living or Adult Foster Care in Ohio, enables family and non-family caregivers to make the full-time commitment of caring for elders and individuals with disabilities. The program provides training and support from a professional team including a registered nurse and care manager, as well as a financial stipend to keep caregiving at home and in the community.

 

The program coincides with state-wide efforts to provide quality person-first services such as OACB’s Good Life Network and the Region V “Imagine” Project—an initiative of 18 county boards of DD in eastern Ohio to transform the developmental disabilities system in Ohio through person-centered planning.

 

“Through our Structured Family Caregiving program, referred to as Adult Family Living and Adult Foster Care in Ohio, Caregiver Homes provides a care option that coordinates services, forms lasting relationships, and keeps families together,” said Sue Gregg, Midwest Regional and State Director of Caregiver Homes of Ohio. “These services make it possible for people with disabilities to remain active participants in the community—something we all take for granted until we are faced with limited options.”

 

Ben Battista, Service and Support Administration Supervisor at the Miami County Board of DD, worked with Shawn and Taz to help them find the care option that worked best for them. After learning about Adult Family Living, Battista recommended the program to Taz. Through communication and teamwork with Miami County, Taz has now been a caregiver through Caregiver Homes for more than a year.

 

“Adult Family Living has given this family the confidence that Shawn’s needs can be met, and it’s given them peace of mind that the person providing those supports is the best person for the job, and that’s Taz,” Battista said. “I think Adult Family Living was a big boost for county boards and has renewed our faith in person-centered approaches. People want that kind of intimacy and level of care in their daily lives. When you have an option like this, you’re going to be supported by someone who cares for you, and that person is probably going to be a long-term support instead of there being a high volume of turnaround.”

 

Taz and Shawn have now settled into a comfortable routine. They paint old trains and wooden ducks together; they fixed the antique victrola that now sits in their living room. A collection of old lanterns are displayed in their house. Shawn goes on eBay and tells his dad which radios he wants. He even has his own auction number when they visit local auctions.

 

“Shawn is really mechanically inclined,” Taz said.

 

Providing Support and Structure

 

Three more hours. Ten months. Thirty minutes. Shawn needs to know when things are going to happen, ranging from when he will see his care team, to when he will get to do one of his favorite activities. Today, it is all about when they will go out for ice cream. “A half hour, Shawn.”

 

Taz points to the clock that Shawn studies and gives him times for upcoming events—mile markers to set expectations for the coming days, weeks, and months. It brings a new meaning to “around-the-clock” caregiving, and it is yet another sign of the consistency Taz is now able to provide, and the promises he is able to keep.

 

“I don’t think Taz feels like he has to take on the world alone anymore,” said Christine Kristanich, Caregiver Homes Branch Manager for Columbus. “If I could build a model caregiver, it would be Taz. When I’ve gone with him to meetings, he speaks from the heart. He doesn’t pretend that Shawn doesn’t have some challenges, but he also expects his son to be treated with respect. Taz is such a good advocate for that.”

 

Taz leans on his care team for support. He receives monthly visits by his care team and enters daily notes about his son’s health, behavior, and general well-being.

“My care team is always there for me and Shawn,” Taz said. “I call them for advice, and to make sure I’m doing things right. The daily notes help me find patterns in his health, which is helpful.”

 

Since Taz took on the full-time caregiver responsibilities, Shawn’s health has improved. When Taz first gained custody of his son, Shawn was 9 years old and only weighed 31 pounds.

 

“Shawn’s mom did not want him to get big,” said Taz. “She worried if he got big, she wouldn’t be able to handle him. She wouldn’t let him eat in the house because he’s very messy when he eats. She didn’t want to clean the mess up, so she made him eat on the porch. It took forever to get him to eat in the house.” Shawn’s mother is no longer very active in Shawn’s life.

 

It took two years, but now Shawn’s weight is within normal limits. Taz’s care team reminds him to take his own health into account, and together they are in the process of identifying an alternative caregiver so he can take respite if necessary.

 

Thirty minutes pass, and Shawn reminds Taz it is time for ice cream. On the drive, Shawn wants the radio turned up. Like it is for other people his age, the music never seems to be loud enough. He wants to feel it. Father and son sit side by side at a table, wearing baseball hats, eating orange sherbet and ice cream. They recently moved from Miami County to Darke County, but despite the distance, they still make the 45-minute drive to visit their neighbor and cut his grass. Taz said he feels it is important to give back whenever they can because “Caregiver Homes has given us so much.”

 

“Taz went with the company that was best able to show him the ropes and make sure he’s supported,” Battista said. “I think he has gained a lot of skills. By working with Caregiver Homes, he has not only been helpful to Shawn – he’s been able to help himself, too.”

 

Taz says he believes his full-time caregiving role was the right option for his family.

 

“Shawn is my best friend,” Taz said. “If you love the person, caring for them at home is the best thing you do for them.”

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