Editor’s Note: This is the second in a series of articles looking at the “system” and services for disabled people.
PHILADELPHIA – It took three years for Eileen and Chris Romich to painstakingly research where their intellectually disabled son, Jonathan, 28, should live when they moved him out of their family home.
It took just three weeks for that plan to implode, leaving the family with ongoing fears for their son’s safety.
Flash back to 2014, when Eileen, 58, and Chris, 59, realized that Jonathan was ready to start establishing a life away from his family.
“I weighed every option – it took almost three years,” says Eileen, sitting with Chris in the kitchen of their Collegeville home. “We looked at group homes, but none felt right. At one of them, the residents were all in bed by 6 o’clock at night and the aides were watching TV. We were like, ‘What’s the deal here?’ ”
The Romiches finally decided to rent a one-bedroom home for Jonathan, eight miles away, where agency-provided staff would monitor him around the clock, transport him to his daily activities and manage his complex medical needs. He was born with Delleman syndrome, a rare genetic condition that causes brain malformation. As a result, he is blind, and has muscle weakness, seizures and intestinal abnormalities that have required multiple hospitalizations.
He barely speaks, but he’s aware of his surroundings, knows and loves his family (the Romiches also have daughter Julia, 23, and son Scott, 22), and likes to play cassette tapes of music he has collected over the years. He has a musician’s ear: After hearing a commercial jingle just once, he can tap it out on an electronic keyboard. And he enjoys the sounds of timepieces; every half-hour, soft chimes from multiple wall clocks echo around the family room.
Fears of moving on
The family has moved heaven and earth to let Jonathan and the world know that he is cherished. So it was a big decision to move him out of their home and into one of his own when he became an adult.
“Our goal was for him to be engaged, happy and safe,” says Eileen.
Chris was thinking about Jonathan’s future.
“One day, we won’t be here,” he says, “and we wanted him to be set up for whenever that day comes.”
The family was still getting used to Jonathan’s new arrangement when they got a call just three weeks into it: He was in the ER. He had fallen when one of his aides had him walk around the house without the physical supports he needs.
The fall cracked Jonathan’s right leg in two places. It took 10 days for the swelling to subside enough for a surgeon to fix the break with a steel plate and 10 screws.
“I cried so hard,” says Eileen. “I felt so guilty. I thought, ‘What have we done?’ ”
The Romiches soon learned that the aide had ignored numerous protocols, explained in meticulous detail in Jonathan’s care plan, that would’ve kept their son safe. They brought a lawsuit against the agency that employed the aide and the case recently settled (its terms are confidential).
But that hasn’t ended their problems with subsequent agencies and service providers whose workers have chafed at the couple’s rabid advocacy for their son. One agency went so far as to forbid the couple from dropping by Jonathan’s home unannounced or calling the staff to check on him. Even though speaking with staff is the only way they can find out how their mostly nonverbal son is doing.
“They made us give them our keys to Jon’s house. They saw us as ‘problem parents,’ ” says Eileen, who is her son’s legal guardian.
“They don’t get that they work for Jonathan in his home,” says Chris angrily. “It’s their job to put him first, not our job or Jonathan’s job to make life easier for them.”
No guarantees for care
The Romiches’ experience is a cautionary tale to parents of intellectually and developmentally disabled adult children who might look at the family’s financial situation – Jonathan has a coveted Medicaid waiver that pays for the services he needs – and presume all is well.
But, in the world of I/DD, just because a service is financially covered doesn’t guarantee there will be enough competent direct-support professionals (DSPs) – like home-health aides, job-support coaches and community-living specialists – to deliver the care with skill, compassion and professionalism.