Paul Blaustein wakes at 4 a.m. every day to be ready to drive an hour to his disabled son’s apartment if the person who takes care of him in the early mornings can’t make it.
Blaustein, who is chairman of the New Jersey Council on Developmental Disabilities, told the State Senate’s Budget and Appropriations Committee on Thursday that he lives in fear that there won’t be a carer available for his 42-year-old son — who needs help getting out of bed, washing, dressing and brushing his teeth — because of a severe shortage of those workers, known as direct support professionals (DSPs), statewide.
“Almost every night I have the same nightmare that my son and others will awake without a DSP to make sure they are OK,” he told the panel during a hearing on a bill that would provide more state money for the workers.
Advocates say there are about 30% fewer DSPs than needed because their low pay rates — funded by the state — have driven many into higher-paying jobs in the retail or logistics industries, leaving agencies with hard-to-fill positions. DSPs make an average starting salary of $12 an hour.
In an attempt to make the jobs more competitive with major employers like Amazon or Target, the committee unanimously approved a bill sponsored by Senate President Stephen Sweeney (D-Gloucester) to provide another $16.5 million to pay for a 10% raise for the carers, on top of an existing appropriation of $40 million in the current fiscal year.
About a dozen supporters including DSPS and patients applauded after the committee voted to send the bill to the full Senate.
“At an average starting salary of $12 per hour, DSP wages are not competitive, with an increasing number of retailers paying $15-18 per hour, and New Jersey’s minimum wage on a path to $15 per hour for jobs that are far less demanding,” the bill said.
Second and third jobs to make ends meet
The new money, if approved by the full Legislature and then matched by the federal government, would result in a $1.20-an-hour raise for DSPs, according to the Coalition for a DSP Living Wage, a campaign group. Advocates hope that would make it easier to keep existing carers and may mean that fewer of them would be forced to take second or third jobs to make ends meet.
Tori Villafana, a former DSP, told the committee that she had worked as a carer for 11 years, and loved the work, but was working another job and driving Uber “just to pay the bills” so reluctantly decided last year to quit.
“I had to make the choice of leaving the career that I loved with individuals that I absolutely adored,” she said. “I had to make a decision to leave, and I think it’s very unfair that people who are doing this heart’s work have to make these hard choices.”
Tom Baffuto, executive director of the Arc of New Jersey, a nonprofit that advocates for people with intellectual and developmental disabilities, said before the hearing that the supplemental appropriation would “just barely keep us in the game” but would put DSP agencies in a better position to compete for workers.
“Every time Amazon opens up a new warehouse, they are taking folks from us. We just can’t get the people paying a starting salary of $12 an hour,” he said.
At the Arc of Bergen and Passaic Counties, CEO Kathy Walsh wants to open a day care center but can’t find the staff on the money she’s able to pay them, and is having trouble retaining employees in her existing facilities.
The constant churn of employees takes its toll on her clients, who are unsettled by new faces, she said.
Vacancies that can’t be filled
“One of the really important things for the people we serve is to have good, consistent, caring staff,” she said. “If we have vacancies that we can’t fill, it means our existing staff have to work extra. Eventually, it gets to be too much for them, and they sit in human resources in tears because they love the job, and they love the people that they serve but they just can’t do it anymore. So then they go to a higher paying job which creates another vacancy that we can’t fill, which creates turmoil for the people we serve.”
Her clients have conditions including autism, Down syndrome, intellectual disabilities, and may have to stay at home, sometimes with elderly parents, if there are no vacancies at group homes or day centers, Walsh said.
“You could end up with an 80-year-old parent and a 65-year-old son or daughter who has to be lifted and bathed and changed, and pushed in a wheelchair every day, and they can’t get placed in a group home and they don’t have a day program to go to.”
Lisa Weissbach of Cherry Hill gets state funding to provide round-the-clock care for her son — who has severe autism, is bipolar and nonverbal, and has a bleeding disorder — at home under a “self-directed” regime. That means she’s able to afford to pay carers at a higher rate than if they were working for an agency with its running costs.
The proposed new funding will help, Weissbach said, but to be effective it should provide at least a 20% pay rise for DSPs, and even higher for carers of severely disabled people.
For now, they can work at Wawa or Target with none of the stress and none of the responsibility, which sometimes requires unqualified carers to administer controlled drugs.
“They are dispensing medication, sometimes even narcotics, controlled substances, with a high school diploma,” she said.