It is Autism Awareness Month and now, there are eight new beds ready for kids and young adults who need medical care.
The brand new unit at Hospital For Special Care in New Britain is an expansion of the state’s only inpatient resource for youth diagnosed with autism.
HFSC said they are working to meet a growing need as recognition of autism and early diagnosis has improved. Right now, one in 44 children nationwide is diagnosed with autism.
The HFSC program is helping Connecticut kids and their families, in addition to welcoming patients from around the country.
With big smiles and high fives, medical providers at HFSC opened the new eight-bed inpatient for children and teens with autism Wednesday. The space joins the hospital’s 12-bed autism unit, helping young people like Ally Gomes.
"The care that she got here was around the clock,” Jackie Gomes, Ally’s mom, said.
Gomes said when Ally became a teenager, she started to experience behavioral changes.
“She could not express what she was going through. And when you're nonverbal, that's torture,” Gomes said. “We hit rock bottom. Because she couldn't communicate, behaviors started coming out, significant behaviors. And the behaviors started to become unsafe, unsafe for us as a family.”
They sought help at HFSC. During a three-month stay, Ally received medical care and psychological treatment. Hospital staff also taught her family strategies to stabilize her behaviors.
“My husband and I would visit the facility every day,” Gomes said. “We learned strategies. Every single day we walked away with the strategy that we would have to apply to Ally once we left the facility.”
However, before Ally got this care, she was on a waitlist for months. Her mom feels that proves the need for these additional beds and services.
“It's going to help so many moms and dads out there,” Gomes said. “As a mom being on a waitlist, that was that was so emotional for me. Because we were in a crisis situation, and I couldn't help my daughter, and no one could.”
Lynn Ricci, HFSC president and CEO, said Jackie demonstrated a critical need felt by many parents when she demanded a face-to-face meeting.
“Jackie was being a tremendous advocate for her daughter, who had been on our waitlist for a very long time,” Ricci said. "There are not a lot of experts in this area. So it takes a tremendous amount of resources to provide that level of care."
On its opening day, two patients have already moved into the new autism Inpatient Unit. It has six treatment beds and two crisis beds for kids who may harm themselves, others or destroy property.
HFSC said on average, youth will stay in the patient treatment program for 28 days, and they experience lower readmission rates and fewer visits to the emergency room following treatment.
“Children specifically with severe autism will often end up in the emergency room for a variety of different reasons such as behavioral dysregulation, severe anxiety, severe OCD,” Hassan Minhas, MD, HFSC chief of autism services, said. “Often times these children will end up waiting in emergency rooms and unfavorable circumstances for weeks and sometimes even longer on end.”
HFSC leadership said better placement of these kids became all the more essential as COVID patients crowded ERs, making bed space invaluable.
Gomes said the pandemic changed things from a parent’s perspective, too.
“We have a mom hat, we have a dad hat. We don't have a special needs education crisis hat,” she said. “So with these children at home, their parents did not have strategies to help them cope, not only with their behaviors, but then behaviors in a pandemic.”
It is why she is gratefully that Ally received care prior to the pandemic, and that now at 20, she is in school and thriving.
“I am happy to say that she's a success story,” Gomes said. “She's back home in Cheshire, we have our life back, we have our Ally back.”
HFSC also offers partial hospital and outpatient programs to continue services for kids once they go back home.
Ricci said about 80% of funding for the autism practice comes from the state, adding that the cost of care has increased four-or-fivefold due to the pandemic.
“We need their continued support so that we can continue to provide this level of service,” she said.
Get updates on what's happening in Connecticut to your inbox. Sign up for our News Headlines newsletter.
Minhas adds that even more funding is needed. To get diagnosed with autism through outpatient services, he said the waitlist could be six to twelve months.
“Even though we're lucky enough to have one of the few inpatient psychiatric autism centers in the country, we're also lucky enough to have a robust outpatient department, we still need much more,” he said. “Even with the additional beds that we're going to be opening this week, we still project that waitlists for children with autism in the emergency rooms is going to be weeks, if not more.”
HFSC said at any given time, there are 20 children on the waitlist for the inpatient program.