James and Jill Patterson wish they could better enjoy this moment. They both work full time for Empower of Niagara County, where their weekly duties allow them to spend one day together in helping men and women with developmental disabilities run a center for handling returnable containers.
While their positions are different – Jill, 30, is a community work site supervisor and James, 34, is activities coordinator – they are grateful for the chance to work side by side.
“These guys are our family,” Jill said of the people they serve. “We know them and want to stay with them. We know their ins and outs and who they are.”
To the Pattersons, the proposed state budget released by Gov. Andrew Cuomo underlines why they doubt they can remain at those jobs for long – uncertainty that human service advocates describe as a crisis in the field.
After a surge in state help approved in 2017, this budget contains no extra money to boost salaries for direct support workers whose agencies have contracts with the state. Without higher wages, the Pattersons say, they will need to leave the profession, probably sooner than later.
Jill makes $13.85 an hour while James earns $12.75, for a combined income of about $55,000 a year. After bills, they have enough left to set aside about $75 to $100 for two weeks of family groceries. In return, they are front-line caretakers who monitor medications, teach life skills, deal with sometimes fragile emotions and stay on constant lookout for situations that could put someone at risk.
There are about 20,000 direct support staff with similar responsibilities within nongovernmental agencies in Western New York, said Kevin Horrigan, an associate vice-president for People Inc. and co-chair of the statewide bFair2Direct Care Coalition.
These workers often start off at the new upstate minimum wage of $11.10 an hour, slightly lower by state law than minimum wage in New York City, where the cost of living skyrockets. By comparison, upstate fast-food workers, through a state law supported by Cuomo, now earn at least $12.75 an hour.
Nothing in this campaign, Horrigan said, is meant to minimize hard work done in fast-food restaurants. The real question involves sweeping cultural priorities about why people offering immediate, life-affecting care to other human beings often receive the absolute minimum in compensation.
The Pattersons were among the featured speakers last week at a breakfast meeting organized by the family committee of the Developmental Disabilities Alliance of WNY (DDAWNY). Kathryn Bunce and Barb DeLong, co-chairs of the committee, said a talented, empathetic young person should be able to envision direct support as a career, and not as a starter job.
Turnover rates for staff remain far too high, they said, because the pay is so low. They are asking for what Horrigan described as a second burst of the support – specifically targeting salaries – that Cuomo offered over the past two years.
They hope they can still persuade him to free up tens of millions more in this year's budget. As Horrigan says, that would provide a significant boost toward a goal of starting upstate direct care workers at more than $15 an hour, an amount he said would provide a reasonable shot at a decent living.
“We are asking to meet with the governor,” said DeLong, whose daughter Laura was born with developmental disabilities. “We’re not slamming him but we really need his attention. It’s a desperate and dangerous thing if you have group homes dedicated to serving people for the rest of their lives, and you can’t staff them.”
Officials with the state Office for People with Developmental Disabilities say they recognize the problem. In a statement Wednesday, communications director Jennifer O'Sullivan described direct support workers as the "backbone" of the profession, and said the governor approved a staggered investment of $262 million two years ago to bolster those salaries.
"We need more to keep up," Horrigan said. "It's not about minimum wage, it's about a living wage."
Sagittarius Porter, for instance, earns $11.75 an hour while providing direct care for Heritage Christian Services. At the breakfast, she explained how the deep meaning of that work was reinforced by her grandson Julian, who died in 2012, as a 2-year-old, from complications related to a mitochondrial disorder.
Porter still grieves the loss. She said Julian's warmth, his full humanity, is a powerful reminder of the difference made by those who work with the disabled for a living.
“This is a job that involves top care and it goes on a back burner," she said. "It doesn’t make any sense.”
The Pattersons, too, spoke bluntly of their fiscal challenges. They love their jobs and do their best to be frugal, but they have two sons and they struggle to keep up. At Christmas, they managed to afford gifts for the kids “by scrounging up everything we could find in change,” James said, and by asking the landlord to let them pay their rent a little late.
Every day is tight. They are accustomed to calls from bill collectors, wondering why one payment or another is running late. "Going to Denny’s as a family is a luxury,” Jill said.
At one point, wife and husband both worked second jobs at a fast-food restaurant, where James was offered a full-time managing position that would have paid a little more than what he earns at Empower.
He turned it down. The work at the restaurant, he said, would have been easier but much less fulfilling than what he does each day for Empower, where he serves as a teacher, coach, friend and mentor to adults with developmental disabilities.
Considering the financial struggles faced by his family, he is not sure he could make that choice again, in good conscience.
Speaking before a packed house about their budget was unlike anything the Pattersons experienced before. They agreed to do it, they said, because so many of their co-workers are being forced out of the field.
Jill, earning $28,000 a year, recalled how she was working one day when an elderly man with severe disabilities went into a series of terrifying seizures.
She called 911, as his skin turned purple and his lips blue. She was with him, reassuring him, as paramedics arrived and saved his life. She wept as she spoke of the bond created by such a moment, and then she spoke of daily reality.
The Pattersons live under severe financial pressure. Unless something changes, they will need to find new jobs.
Jill tries not to dwell on it while she works with men and women she sees not as clients, but as friends. She knows their family backgrounds, their dreams in life. In a sense, they have helped her to learn a new language, to see the world in a new way, and she finds it maddening that her paycheck might force her to give it up.
“It’s going to be a horrible day,” she said, “when I walk out and say to someone new, ‘Please take care of my guys.’ ”