Family of young man with autism frustrated with restrictions: ‘Texas is treating him differently’

Investigations

AUSTIN (KXAN) — Jack Fawell will be celebrating his 21st birthday on Friday.

It’s a milestone for any young man, but his parents, Doug and Amy, said they are frustrated they won’t be able to celebrate together.

“He’s a healthy 20-year-old, and the state of Texas is treating him much, much differently than other 20-year-olds in the state of Texas — for one reason. The reason is that he’s disabled and lives in a group home,” Doug said.

Jack Fawell’s parents are worried how COVID-19 restrictions are affecting their son with autism spectrum disorder (Photo provided by: Amy Fawell)

Jack’s parents said he has moderate functioning autism with severe behaviors. He moved from their home in Austin into a Type-A Assisted Living Facility in San Antonio several years ago.

While many industries and businesses are back open, albeit with capacity and mask restrictions, Jack’s facility is still on full “lockdown.” In mid-March, the state restricted non-essential visitors at these homes, after COVID-19 began to spread among communities housing elderly, vulnerable Texans.

“So, our son is a 20-year-old who’s probably the healthiest person in our household,” Doug said. “In his group home are all young men and women that are 21 years old or younger. That’s, you know, not a big, high-risk factor group, and yet he’s being treated like he’s someone who’s got all these co-morbid conditions and someone who’s generally elderly, in a nursing home.”

Regarding the restrictions, a spokesperson for the Texas Health and Human Services Commission said, “Current state guidance to long-term care facilities, including assisted living facilities, requires that facilities limit visitors to only essential visitors who are providing critical assistance and have been properly screened.”

Doug and Amy said the staff at the home are following all the state’s guidelines, but are allowed to come and go. So, they said they requested the opportunity to be able to come see their son for his birthday, “taking the proper precautions,” but said HHSC denied their request.

Governor Greg Abbott announced they were working on a plan to provide a safe way for people to visit loved ones in long-term care facilities.

In mid-June, Gov. Abbott told KTAB News in Abilene, “We expect to make an announcement in a week or two that will provide some way of having loved ones go into a nursing home and be able to physically see their family member, using strategies to make sure we are not importing COVID-19 in those nursing homes to make sure that we keep them healthy and do not increase the risk of death.”

KXAN Investigators have reached out to the Governor’s office several times for an update, in light of a recent spike in COVID-19 cases in the state, but haven’t heard back.

Meanwhile, Doug and Amy said they feel the state has “lumped” all types of homes together, without a qualitative look at how people are being affected.

Jack Fawell’s parents are worried how COVID-19 restrictions are affecting their son with autism spectrum disorder (Photo provided by: Amy Fawell)

“Abbott stressed that we cannot treat everybody the same, in his press conference,” Doug said. “And yet, they’re doing exactly the opposite in the group homes.”

The Autism Society of Texas said they’ve heard other families express frustration about the restrictions.

“It seems like they could provide visitation in a safe way. It’s very disruptive for people with autism to have their routines changed,” Deputy Director Jacquie Benestante said. “If they are used to regular visitors, this could be facilitated by safe outdoor visits — staying 6 feet apart and wearing masks, or via video visits.”

She said anxiety can be “sky high” as families deal with school, work, and activities being canceled or rescheduled.

“The huge unknowns for both autistic adults, and for families trying to support those with autism, present challenges that are very difficult to work around when you are used to having plans that are structured and stable that are now beyond your control,” Benestante said.

Doug and Amy are worried about how the changes and restrictions are affecting their son’s behavior.

Jack Fawell in his room at the assisted living facility where he lives (Photo provided by: Amy Fawell)

“He needs to get out and stretch his legs. He needs to get out and see other people, and I’m pretty sure that, you know, morale is down for him,” Amy said. “They say you can Face Time or look through the window, but that just doesn’t work for our son, with the developmental issues that he has.”

Kelle Rich, Executive Director at the Central Texas Autism Center, said their behavior analysts have been helping families establish a route and some sense of normalcy throughout the pandemic.

“COVID-19 changed that for all of us,” she said. “Now, school and therapy is a home. It’s a screen and not in-person. So many changes, and change is hard for all of us, but especially for children with autism.”

She emphasized the “spectrum” of autism spectrum disorder, meaning there are different strategies to help different individuals. With some people, they are talking through the changes. With others, they are working on learning visual cues to communicate while social distancing.

“We’re teaching kids to wear masks. Some of our kids are very fearful — that’s another visual display for them,” Rich said. “At the Center we have ordered clear shields and clear masks, so they can see our facial expressions. Here we are trying to teach social cues, and you lose half of those social cues with the mask.”

She said they are using concrete examples, picture cues, or through trial and error.

Benestante said the Autism Society made a video on how to wear a mask for children and adults with autism. They also have posted a toolkit to help people with autism address COVID-19.

Benestante has also heard concerns about a lack of internet access, especially for adults with disabilities in homes being unable to access teletherapy and telehealth appointments. Another concern was unemployment for caregivers and for autistic adults looking for work, as well.

“Most autism families are just continually trying to cope and do the best they can in a constantly changing situation,” she said.

The Fawells wonder if, and when, the state will take a more critical look at situations like the one facing the young people in Jack’s home.

 “The least of our asks is that we would be able to come and go to see him, if we follow the same conditions as the caregivers that are coming and going,” Amy said.

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