WEST PALM BEACH, Fla. — They say that music soothes the soul. But for Daniel Rubenstein, the notes are not flowing.
Daniel Rubenstein is 36 years old with autism. His mother, Jaclyn Merens, describes him as "pretty much non-verbal."
Music is one avenue Rubenstein uses to express himself.
"Overtime as a kid, he learned a lot of concepts through music. ... He can sing thousands of songs, but, 'Hello, how are you?' is sometimes just over his head," Merens told Contact 5.
"Lately, it's been very difficult to get him to sing with me. I think he's depressed," Merens added. "The music stopped on March 13 at 3 p.m."
On Mar. 16, Gov. Ron DeSantis issued a statewide emergency order to prevent the spread of COVID-19 inside nursing homes and long-term care facilities across Florida, by prohibiting visitor access.
But the order also closed the door on Merens and thousands of other families from visiting more than 10,000 loved ones in more than 2,000 group homes throughout the state.
Since then, Merens has only seen her son twice. Both times were at doctor's appointments.
"It's heartbreaking, because he only wants to know if he's coming home with me or not, and I have to say no," Merens said.
Five months have passed with no changes to the statewide visitation policy. Soon, however, the music may start flowing between Merens and her son.
DeSantis convened a Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities, which met virtually for the first time Aug. 14.
This week, the group expects to issue recommendations to the governor on loosening visitor restrictions at long-term care facilities, including allowing individuals who qualify as "essential caregivers" or "compassionate caregivers" to enter long-term care facilities. The task force's recommendations will cover group homes, like the one where Rubenstein lives.
Five months has taken a toll on the Merens and other families throughout the state.
"I think he misses the normalcy of his life the same way we all do, but he doesn't have the words to express that," Merens said.
The CEO of the nonprofit that runs Rubenstein's group home described the residents as "incredibly resilient" and told Contact 5 the state visits every couple of weeks.
"I'm a little distraught that, on that committee, there is nobody from the developmental disability community," Stacey Hoaglund said when discussing the task force.
Hoaglund is the president of the Autism Society of Florida. She has worked with lawmakers to help families get visitation.
"There are parents (who) are very stressed because they're wondering if they're safe, physically safe," Hoaglund said.
"When families go into group homes and they can visit them, they're checking things out, they're making sure they're safe," Hoaglund noted.
But with no visitors allowed, Hoaglund worries how the isolation has impacted those with special needs.
"I was talking to a mom yesterday, whose daughter lives in a group home [and] got bed bugs," Hoaglund told Contact 5.
"We need to have some parameters because not everybody makes great decisions," Hoaglund conceded, before stating, "but removing everybody's right to access their own family? I don't -- I'm never going to agree with that."
Florida's Agency for Persons with Disabilities sent Contact 5 this statement:
"The Agency for Persons with Disabilities remains committed to the highest level of care for our customers during this pandemic. APD is following closely the Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities and will implement any approved recommendations related to visitation at our APD licensed facilities."
"I think if there was rapid testing, if everybody in the house is negative and we're negative, [then] I don't see any reason why we shouldn't be able to spend time together," Merens told Contact 5.
For now, Merens can only wait and reminisce, to once again hear the music that soothes the soul.
"I look forward to being able to hug my son and get a kiss from him. ... I can't wait for that day," she said. "I really can't."
