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.

“One day, we won’t be here, and we wanted him to be set up for whenever that day comes.” – Chris Romich, father of Jonathan Romich

"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 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.

The Low Pay of Home Health Aides Although home health care is expected to be one of the country's fastest-growing occupations, the pay is low and has grown more slowly than that of the typical Pennsylvania worker. SOURCES: Paraprofessional Health Care Institute; Bureau of Labor Statistics; Pa. Center for Workforce Information and Analysis Although home health care is expected to be one of the country's fastest-growing occupations, the pay is low and has grown more slowly than that of the typical Pennsylvania worker.

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 turmoil of constant turnover

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.

“One aide was arriving late all the time. Michael would just lay in bed, hungry and needing the bathroom, until she got there.” – Susan Tachau, mother of Michael Anderson

"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 roommaates in a ranch house in Merion.

DAVID SWANSON / Staff Photographer Michael Anderson at home 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.

'I know I’m making a difference'

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.

Will is intellectually disabled and has ADHD and bipolar disorder. Without close supervision and redirection, his behaviors can devolve quickly into physical aggression, says Ridley, who lives in Germantown.