From Channel 13 WHAM website...
Child with autism injured at group home Updated: Friday, August 23 2013, 06:49 PM EDT
Rochester, N.Y.-- On Friday, July 19, a 15-year-old boy with a moderate-to-severe case of autism was injured at a local group home. The boy, named Jared, had become agitated because his routine was disrupted. He was living at a group home in Macedon run by the Hillside Family of Agencies.
We met Jared's mother, Jerri Sparks, who told us the staff members who handled her son put him in an "illegal hold" with their hands around his throat.
"It's outrageous," Sparks said. "It clearly shows someone lost control. I imagine the violence that was going on and I get really upset because that's my little child being treated like -- it was just awful."
Sparks shared photos she took the next day. They show scrapes and bruising to several parts of Jared's body, including his chest, neck, and back. Now Sparks has two goals: She wants to understand what Hillside is doing to address her son's case, and she wants to put together a community symposium on the delicate subject of physical restraint.
"I'm aware of the difficulty of the job," Sparks said. "I don't think the tools they're currently using are having the intended effect."
13WHAM News contacted Hillside. The agency declined an on-camera interview and instead released this statement:
- "Hillside Family of Agencies believes that the safety and security of the individuals we support, their families and staff is our most important priority. For more than 175 years, Hillside has continually earned the respect of this community by offering a safe haven for children and families, and we remain committed to providing a nurturing environment for the youth in our care."
A spokesperson explained that Hillside could not comment on Jared's specific case due to privacy restrictions, even though Jared's mother is willingly discussing it.
Physical holds and restraints: Do they work?
At the root of Jared's story is a question faced by Hillside, and by thousands of group homes across the country that care for children with autism: When is physical restraint appropriate? Hillside would not answer that specific question for 13WHAM News. AutismUp, a local organization, is looking deeper into this question.
"Clearly, this is an issue that is important to our parents and warrants further discussion," said Sarah Milko of AutismUp. "It's become apparent that a community discussion around seclusion and restraint is necessary in order to fulfill our mission and our commitment to the families we serve.”
Sparks, who has been meeting privately with Hillside, is happy to hear that.
"Holds escalate the crisis," Sparks said. "They do not calm anyone down. It risks the staffer's safety as well. It's like putting fuel on a fire."
13WHAM asked Sparks about extreme situations involving children with autism who become violent.
"I'm five-foot-four," she replied. "My son has had incidents with me, and I've never had to resort to choking him or physical violence. That's what you do when you are not prepared to handle the situation."
After Jared was injured, Sparks says she received a call, but the situation was downplayed. "The group home didn't tell me that Jared had been taken to Urgent Care, and that alarmed me -- that the injuries were possibly more severe than I'd been led to believe," she said.
Jared's case is unique, and yet bears similarities to so many cases across the country. That's because kids like Jared -- the verbally impaired who struggle to communicate and are diagnosed as moderate-to-severely autistic -- rely heavily on routine. They thrive when routine is followed; they can suffer meltdowns when even basic points of routine are disrupted.
"The challenge is about learning the idiosyncrasies of each child," Sparks said. "No one who has ever met me and spent time with me has hurt my son. That's because I take time to explain his patterns. But if staffers aren't educated, they can lose control."
Milko agreed with the value of training and communication with staffers.
Sparks had praise for Hillside's track record, saying that her son has generally had an excellent experience in the group home. "But training has to be comprehensive, because it only takes one incident for something to go very wrong," she said.
A community forum to address the issue of restraint
Nothing is scheduled, but a community symposium focusing on holds and restraint could happen as soon as this fall. Sparks plans to make several suggestions:
- Staff members at group homes should have the portraits of a resident's family visible in the office, to personalize the resident
- Parents should be allowed to put together video introductions, giving them a chance to explain a child's routine and idiosyncrasies
- Parents and guardians should have mandatory meet-and-greets with all new staff members
"This is about two vital steps," Sparks said. "The first is prevention. If you know a child well, you know what they need, and you can avoid having them become agitated. The second is diffusing a crisis. Even when things become heated, physical restraints don't help. Knowing a child means knowing how to approach these situations."
Sparks knows her position -- no physical restraints allowed -- will be progressive and even controversial. Some staff members who work with people with autism could object to having physical restraints taken away as an option. Sparks worries that when holds are an option, they will be abused.
"I am going to fight to make sure this doesn't happen again, not only for my son, but for other children on the spectrum," she explained.
Jared will continue living in the Hillside group home, but Sparks has requested additional meetings to make sure her son is treated appropriately. She has also contacted the Wayne County District Attorney to explore all of her options.