Crushed by their brother's death, but unable to mourn.
That's where the McNamara family finds itself more than three months after the New Year's Eve choking death of their disabled brother, who was in the care of Blossom Philadelphia, a Chestnut Hill nonprofit.
Vincent McNamara, 60, died after caregivers gave him a slice of Ellio's pizza, even though he was supposed to have only soft or pureed foods, just days before Blossom turned his South Philadelphia residence over to a new manager. The Pennsylvania Department of Human Services revoked Blossom's license in October, citing "gross incompetence."
"We're so disgusted that the passion for justice at this point has taken over any kind of mourning process," said sister Catherine Glick.
What happened to Vincent as Blossom collapsed is endemic of widespread problems in the system of community-based care for adults with intellectual and developmental disabilities, say advocates. They say the system is careening into one that warehouses the disabled in the community rather than true community living. In Philadelphia, there are about 700 group homes with 1,790 residents.
Advocates, some of whom spent their entire careers developing a system of community supports, cited low pay for direct caregivers, lack of training, and light oversight from regulators — despite a 66 percent gain in statewide funding for community services to $2.9 billion in fiscal 2017 from $1.75 billion a decade earlier.
It's not enough, maintains James Conroy, who created a monitoring system for former residents of Chester County's Pennhurst State School and Hospital, which closed 30 years ago last November. "We're in danger of recreating the same conditions that we had in underfunded, neglected institutions a generation ago," he said.
The McNamara family filed a lawsuit Wednesday against Blossom in the Philadelphia Court of Common Pleas, alleging gross negligence against former chief executive Paula Czyzewski, other Blossom executives, and a Plymouth Meeting staffing firm. The lawsuit says Vincent choked for at least 15 minutes and went without oxygen for five to nine minutes.
If the 30-page lawsuit results in a monetary settlement, the family wants to use the money for a foundation in Vincent's name that will help people like their brother gain access to better care.
"It was clearly just a letting go of standards, negligence on the part of those who are entrusted by the families of the most vulnerable people on the planet," said another sister, Joanne McNamara. "Unless we expose these things, they are going to continue to happen."
The only formal, written communication the McNamara family has received from state and local regulators was a three-paragraph March 29 letter from Deborah Cackowski, director of the risk management unit in Philadelphia's Intellectual disAbility Services department.
The letter offered condolences and confirmed that the caregivers fed Vincent pizza. "Staff failed to adhere to Vincent's diet or to his dietary feeding protocol. There was also a failure to act in a timely manner to seek emergency medical assistance," the letter said.
The agency staff "should be ashamed of themselves for not being more communicative with the family," said the family's lawyer, Leonard G. Villari.
For his family, Vincent's death was a devastating end to a life that had a special spark of joy and largely dodged the worst that struck many individuals born in the 1950s with severe disabilities from cerebral palsy.
"At that time and for many many years after, parents were told by the medical establishment, 'If you love your child and your other children, you will institutionalize your child with a disability,'" said Marianne Roche, an intellectual-disabilities expert who worked in the industry for 50 years.
Those experts got to Vincent's mother when he was 6, recommending "institutional training" at a school in North Jersey.
"We would go every Sunday to visit him. It would tear our hearts out," Glick said. "He would cry his eyes out." He was there for just one year, she said, "because we couldn't take it."
Except for that detour, Vincent, the youngest in a family of nine children growing up in Chestnut Hill, led his entire life in the community, at home until he was in his early 20s and then starting around 1980 in homes managed by United Cerebral Palsy (UCP).
Family life was busy. "My brothers would throw him over their shoulders and take him places," McNamara said. "They wrestled with him on the floor."
McNamara and Vincent were less than a year apart in age. "He was a big flirt. He used to love all my girlfriends in high school," said McNamara, who lives in Florida.
Music was Vincent's passion. Stevie Wonder, Earth Wind & Fire, Fats Domino, and Bob Marley were among his favorites. A brother, Hugh, had a band that practiced in the basement. They gave Vince his own drums, so he could bang along, reveling in the black lights.
Those were good times, his sisters said. Vincent was happy, engaged in the community, spending lots of time with siblings. On weekend visits with family, Vincent always wanted something to do. Glick recalled: "He'd come over to my place and say, 'I need your drill. Where's your drill?'"
At UCP, conditions were more or less stable for years. "We went into a soft kind of complacency, because he was there for so long," McNamara said.
Highlights were provided by caregiver Stacy Teel, a 25-year UCP veteran who worked with Vincent for 22 years before being fired in August 2016. She was one of many longtime staffers who were let go. "I was told I wasn't going in the direction they wanted to go in."
Experiences with Teel included a trip to Walt Disney World in 2015 and regular visits to an Irish festival in Wildwood. "Some people I took care of weren't nice," Teel said. "Vinnie was truly, truly a beautiful person. Even when you looked your worst, he would tell you you looked great."
Teel said troubles started immediately under Czyzewski, who became UCP's chief executive in 2014 despite a lack of experience in running community homes. She changed the 71-year-old nonprofit's name to Blossom early last year and got rid of all senior managers in the community homes unit. Caregivers were supposed to drop the attitude that clients were like family, Teel said.
Czyzewski's employment by Blossom ended last month. Neither she nor Blossom responded to requests for comment.
Vincent had been getting $50 a month spending money from his Supplemental Security Income — which he liked to spend on music — but that stopped under Czyzewski, Teel said. After that, she or a coworker would sometimes take Vincent to a record store on South Street and buy him something for $10 or $20.
Under Czyzewski's leadership, frustration mounted for the McNamara family.
"As it got progressively worse, he would have the wrong clothes on when he would come to visit," Glick said. He needed help going to the bathroom, Glick said, and "they would have him in pants that were so small you couldn't zip them up or down."
Sometimes it didn't even matter if Glick called ahead to remind caregivers to have him dressed properly. "The people who are working in these houses, if they don't believe in that or they don't care to think about it, it doesn't matter what we think," Glick said.
That was bad, but nothing prepared Glick for Vincent's condition when she arrived on Dec. 30 at Pennsylvania Hospital, where Vincent had been taken after choking. No one had told her that Vincent was on life support. "That initial shock was so severe that I think I haven't been able to cry since then, because everything was like boom!" Glick said.
Still, Glick and McNamara have some ideas on how to get beyond the pain and anger.
They want justice for their brother, including criminal charges against Blossom executives, if appropriate — the Pennsylvania attorney general is investigating — and a monetary settlement from their lawsuit.
Then, after they throw a party to celebrate Vincent's life, they want to establish a music program in Vincent's name for adults with intellectual and developmental disabilities to set them up with good equipment, McNamara said.