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.
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."
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 the truth is, 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.
Nor does it guarantee quality oversight from the agencies that employ the workers. For shocking evidence of the latter, read my colleague Harold Brubaker's recent stories about Blossom Philadelphia, formerly known as United Cerebral Palsy of Philadelphia. In October, the company lost its license to operate community homes for intellectually disabled individuals after the Pennsylvania Department of Human Services found "gross incompetence" at the Chestnut Hill-based agency.
By 2020, the U.S. Department of Health and Human Services estimates that the equivalent of 1.2 million full-time DSPs will be needed to care for 1.4 million Americans with developmental disabilities needing residential, vocational and other supports. And the U.S. Bureau of Labor Statistics has projected that "home health care" and "personal care aides" will be two of the three fastest-growing occupations in the country between now and 2024.
The work can be physically demanding and emotionally challenging, and requires extensive skills and ongoing training. But these workers rarely receive benefits like insurance, sick leave, and paid time off.
The state sets the rates that support professionals are paid via the waivers. In Pennsylvania, it equates to an average $11.17 an hour. That's roughly half of what MIT has determined to be a living wage here for a family of two, points out Kathy Brown McHale, CEO of Special People in the Northeast Inc. (SPIN), a local provider of services to people with intellectual disability and autism.
"Yet they're expected to possess professional skills and knowledge and demonstrate the highest of values and ethics," says McHale, who is also board chair of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability and — more important — mother to an intellectually disabled daughter, 26.
"Even the most committed workforce members are leaving positions and clients they love because they need a family-sustaining wage."
The turnover can destabilize the workforce, attracting some workers who exploit the vulnerabilities of clients such as Michael Anderson, 35, who lives with two housemates in a ranch house in Merion.
He has cerebral palsy and depends on direct-support professionals for all activities of daily living: eating, bathing, dressing, toileting, walking and continence. One of his aides cleaned out Michael's entire bank account. Another would "look after" Michael while using his van to run her personal errands or party with her friends.
Other infractions by aides have been less horrifying yet still serious, says Michael's mother, Susan Tachau.
"One aide was arriving late all the time. Michael would just lay in bed, hungry and needing the bathroom, until she got there," she says, quickly adding that her son's current helpers are terrific. "He didn't want to tell us because he didn't want to make anyone angry. You never want to piss off the person you depend on to stay alive."
Other parents tell stories of supports people who have just plain checked out. While their clients languish in a chair or bed, the aides watch TV. Disappear into their phones. Nap through their shifts. Become sloppy about giving medications on time or keeping their clients clean and comfortable.
And, in worst-case scenarios, they become fatally disengaged from their clients, the way that aide Hussanatu "Ayesha" Wulu did with Christina Sankey, 37, who had profound intellectual and developmental disabilities and was prone to wandering. On a frigid winter day in 2014, Christina walked out of the downtown Macy's while Wulu, distracted, inspected baubles at the jewelry counter. Christina's body was found the next morning. She had frozen to death overnight.
But for every uninterested aide there are many, many more who care deeply about their clients and are passionate about enhancing their well-being. Nicholas Smith is one of them, says Latisha Ridley, 31, whose brother Will, 34, is provided one-on-one support by Smith.
"Nick really knows Will, and he stays in good touch with me," says Ridley, 31, who became her brother's legal guardian after their mother died in 2010. She and her husband have three young children and are unable to care for Will on their own. She checks in on him whenever she wants and always finds him to be happy and well cared for. "I don't worry about Will at all."
Smith beams when he hears the praise.
"You've got to have a love of people, and just feel good about giving and helping," says Smith, 41, who is employed by SPIN.
A single father with sole custody of his teenage daughter, Smith left a promising but soulless quality-control career in corporate America 18 years ago to deliver one-on-one support to clients like Will. The job fills him with joy.
"I know I'm making a difference every single day," he says. "Will's a great guy; he works really hard. It's satisfying to see how much he has matured in the last year alone."
Smith works with Will on behavior modification, monitors his medications, takes him to medical appointments and to activities that make him happy: basketball at Carousel House, the Fairmount Park rec center for people with disabilities; walks in the park, where they eat lunch on a bench; a day trip to the beach; dog walking at a nearby animal shelter.
On this weekday evening, Smith is watching as Will prepares dinner in the sunny kitchen of the small group home shared with Max Cheney, another adult with I/DD.
Will reheats vegetable leftovers from lunch and slides a pizza into the oven. There is great affection between the two men, but Smith stresses that the relationship is professional. "Will sees me sort of like an uncle, I think, but I'm not family. When I come here, I leave my worries at the door. This is Will's time, not mine."
To make ends meet, Smith often clocks 60 hours a week (he takes extra shifts working with Will or with other SPIN clients). But he's not complaining.
"This is important work," he says. "This is what I'm called to do. It's where I'm needed."
SPIN's CEO McHale says her industry needs more godsends like Smith, but that unrealistic government funding and new, expensive requirements for agencies like hers make it hard to attract and retain a strong workforce.
How bad is it?
The national turnover rate among America's four million support professionals is a staggering 45 percent, according to a 2016 survey commissioned by the American Network of Community Options and Resources (ANCOR), a national, nonprofit trade association representing 1,200-plus private community providers of services to people with disabilities
The instability wreaks havoc on provider agencies and devastates those whose lives depend on services and supports, according to ANCOR's 2017 report, "Addressing the Disability Workforce Crisis of the 21st Century."
For clients like Will, losing someone like Smith, who has painstakingly built a strong and trusting relationship with him, could set back the progress he has made under Smith's dedicated, patient and careful guidance.
That ongoing, heartbreaking possibility exists for clients with disabilities who depend on direct support professionals. And it frustrates Maureen Devaney, mother of an intellectually disabled daughter and cofounder of Vision for Equality, an advocacy group for individuals with disabilities and the loved ones who care about them.
DSPs, she says, "are devalued people caring for devalued people. Their work is hard and they're paid so little. After a while even the most dedicated ones think about leaving."
Not surprisingly, there is talk of the need for direct-support workers to organize in order to push for better wages and benefits that would increase job retention in their industry. In 2015, Gov. Wolf issued an executive order allowing the establishment of an intermediary between certain home aides paid under a Medicaid waiver and the Pennsylvania Department of Human Services. But critics say the order equated to forced unionization on the industry. Last year, Commonwealth Court overturned the order, which was then appealed. Last week, the Pennsylvania Supreme Court heard oral arguments on the appeal. A decision is expected in early 2018.
This is not what leaders in the disability rights movement envisioned two decades ago when the push began for the closure of state-run institutions, many of which had residents who routinely suffered abuse and neglect.
The goal then was for those with disabilities to be integrated and included in mainstream society in every way possible. But society didn't have a ready workforce of professional caregivers available to provide them services, says Joseph Macbeth, executive director of the National Alliance of Direct Support Professionals.
We still don't.
"We cannot realize the promises we've made to people with developmental disabilities without investing in the direct support staff who know them best," Macbeth says. "They make it happen for people with disabilities and their families."
Our laws finally acknowledge that Americans with disabilities are as entitled to the pursuit of life, liberty and happiness as any able-bodied American is. But without highly qualified people to help in the pursuit, the entitlement means nothing.
Just ask Eileen and Chris Romich, who trusted the system to keep their son safe. The fall Jonathan experienced in early 2015 has changed him. Despite his blindness, he used to walk freely around their house, wearing the leg supports that kept him steady. He'd use a wheelchair only when outside or in unfamiliar surroundings.