With 10 minutes left to go in his private session at CP Rochester, a little boy took the hand of physical therapist, Karen Terp, and led her to the hallway for an afternoon stroll.
“You want to walk? Ok,” Terp said.
Nudging Terp to initiate the walk is one of the few ways the four-year-old can communicate with her. When he first arrived at the center, which supports people who are living with physical and developmental disabilities, the boy, who cannot be identified, was a non-verbal two-year-old. Now, he’s a child of few words, however, he is still unable to walk without help.
“He’s very close. He’s starting to take some steps,” Terp explained. “He wears a brace on one of his legs, so he needs a lot of help with that.”
Terp and her student intern, Sarah, work with the boy every weekday. To assist with his cognitive challenges, CP Rochester provides him with special education. Amputated fingers also limit the use of his hands.
“Because of the involvement that he has in his hands, an occupational therapist helps him learn how to do things more easily with his hands,” she said.
The goal at CP Rochester is for the students to eventually be able to attend regular school classes, and ultimately live independently when they become adults.
And, so the boy can live more comfortably at all times, Terp has made arrangements with his mother and modified his home.
Environmental Modifications are internal and external physical adaptations to the home, which are necessary to ensure the health, welfare and safety of the participant. These modifications enable the participant to function with greater independence and prevent institutionalization.
Additions like door alarms and locks, wheelchair ramps, and shower chairs can be all the change a caregiver needs to get some relief.
“If you’re a teenage boy, you don’t have to have your mom come in and give you a shower because you can get in there by yourself," Terp said.
A technical solution
Parents and support staff who care for 36-year-old Adam Joachimiak said the TouchStream Solutions tablet has been a game changer. For two years, the monitoring system has helped him organize his daily activities and manage his medications.
“It helps me stay on track of where we go,” Joachimiak said.
Just 24 hours after he was born, Joachimiak suffered a massive stroke and lost the functioning of about one-third of his brain. At 13, his behavior became more difficult to manage, so his mother, Joyce Steel, decided he would benefit from living in a group home setting. Among others, he lived in homes in Utica and Canandaigua, New York; however, as Joachimiak grew older he got tired of his living arrangement.
“It was crazy…We had people going everywhere,” Joachimiak said.
Now, it’s been five years since Joachimiak began living the independent life he’s longed for. He lives in his own, full-sized apartment, adjacent to the home of Steel and his stepfather, Scott.
“My vision for him was that he would be a contributing member to the community, to this world,” Steel said, “I didn’t know what that would look like for him because he gets to call those shots.”
The customized TouchStream tablet keeps the family connected in real-time. Joachimiak and his caregiver, Jeff, use a web portal to input important reminders and activities, so that the tablet can speak to Joachimiak at the appointed time.
Through a text message or email, caregivers are instantly informed when Joachimiak has completed the task.
The tablet system, manufactured in Rochester, costs a one-time purchase fee of $250 and the monthly subscription, which includes a data plan, is priced at $60. TouchStream is not covered by health insurance plans, however, the Office for People With Developmental Disabilities has made a program called “Self-direction” available to help families afford it.
“It provides a budget to hire your staff, and purchase other goods and services that help your child or whoever do what they need to do to live a life that works for them,” Steel said.
Increasing confidence, independence, and peace of mind
“Our road map for TouchStream is very much dictated by our customers,” said Wendy McLaughlin, who has worked with the company for two years, “[Customers] say we want it to do this, they say we want it to do that, and that’s truly what our development team works to put on the road map.”
But systems like TouchStream won’t solve everything. For example, Joachimiak’s family is anxiously awaiting a future version of the tablet, which will better align the system with medication dispensing.
“Adam still, even though he’s prompted to take his medication, he still has to go into his case, pour out his medications, and do the weekly setup with the pill container boxes.”
And modifications around the home can mean a good night’s sleep for caregivers who selflessly give their time and effort to ensure a quality life for a person living with a disability.
“Caregivers have to give up control to this person, but they still want to know that things are being handled in a way that’s going to keep this person safe,” Terp said.
These stories were presented as part of Dialogue on Disability Week - a partnership between WXXI and Al Sigl Community of Agencies - in conjunction with the Herman and Margaret Schwartz Community Series.
Dialogue on Disability is supported in part by The Golisano Foundation with additional support from the Fred L. Emerson Foundation.