Lawmakers Looking to Find More Dollars for Direct Caregivers

It’s easy to see why there’s a shortage of direct-support professionals. They’re paid so little they can do better financially working at a fast-food chain

direct service professional DSP
Senate President Steve Sweeney is determined to find at least $20 million more to pay healthcare workers who provide critical daily assistance to disabled individuals in New Jersey as part of the ongoing budget negotiations between the state Legislature and the Murphy administration.

Sweeney (D-Gloucester) told NJ Spotlight that increasing the Medicaid reimbursement for these nonclinical direct-support professionals, or DSPs, is a priority for him and other lawmakers, given the important work they do in homes, schools, and workplaces for some of the state’s most vulnerable residents. Pay for these jobs starts at $10.50 an hour; New Jersey’s minimum wage is $8.60.

The Senate president led the fight during last year’s budget battle to include $20 million in the current state spending plan, which functioned as a one-time bonus. He said he would “fight to make sure” it is also included in the budget for the coming fiscal year, which must be adopted by the end of June.

Social-service policy experts also flagged this issue in their transition policy report to Gov. Phil Murphy, who took office in January, but the fiscal year 2019 budget proposal he unveiled in March did not include additional money for DSP pay. That raised concerns for frontline workers, agencies that employ them, and individuals and families they serve. Members of the Assembly budget committee also questioned the decision at a hearing in May.

“The personal-care workers who go into their homes and communities to provide direct care and to help them with daily needs are performing some of the most important duties imaginable,” Sweeney said. “It is shameful that they are too often underpaid and underappreciated. The budget is tight, but this is a priority that I am determined to fund.”

Negotiating a budget compromise

Representatives from the Legislature and the Murphy administration are now negotiating a compromise to the $34.7 billion budget proposal. But a revenue crunch has already forced the state to suspend spending, including delaying nearly $500 million in hospital-aid payments scheduled to go out later this month.

The Senate president’s commitment to DSP wages was welcome news to family members and care providers, who joined forces last year to form the Coalition for a DSP Living Wage to address what they said has become a crisis. There are now 25,000 DSPs providing daily care — personal tasks, physical assistance, communication, and more — for 22,000 New Jersey residents with intellectual or developmental disabilities, a population that is growing and has increasingly complex needs as it ages.

The situation has resulted in a staffing shortage, the coalition said, with low pay and strenuous demands driving DSPs into other jobs and making it hard to find replacements. Provider agencies report a 44 percent turnover rate and a 20 percent vacancy. In addition, DSPs often work multiple jobs and receive food stamps and other welfare benefits to be able to provide for their own families, advocates said.

Thomas Baffuto, executive director of the Arc of New Jersey
“This is a crisis situation. People are just not going to get services,” explained Thomas Baffuto, who heads the coalition and serves as executive director of The Arc of New Jersey, which advocates for and assists individuals with disabilities and their families. “We’re not going to be able to sustain the system. We’re not going to be able to grow.”

Hoping for higher salaries

In fact, the coalition would like to see a more robust, sustained investment in DSP wages, which average $11.36. The goal is to increase the pay to roughly $16 an hour, over five years — an increase of $1.25 a year. The group calculates this would cost $72 million in the first year, with $36 million in state funds and an equal match in federal dollars.

Baffuto said coalition members are talking to lawmakers on both the Senate and Assembly budget committees and officials at the Department of Human Services, which oversees Medicaid, in hopes of securing a long-term plan for more investment. “These are not minimum-wage jobs. They’re more important than minimum wage jobs, and we just can’t compete” with other industries, like fast-food chains that offer starting pay as high as $13 an hour, he said.

“These are really wonderfully devoted people who do this work,” agreed Gail Frizzell, an Arc board member and the mother of a 32-year-old who is severely disabled. “They’re helping these individuals with a life of connectivity and quality that they can’t achieve on their own because of their intellectual or developmental disability.”

While Sweeney has not committed to the five-year plan for new dollars, he appears open to a long-term solution. “We will also look to better commit to the continuation of the pay increase by incorporating it into the state’s Medicaid rules,” he said. “Those in need will not be forgotten and those who care for them should not be shortchanged.”

DHS Commissioner Carole Johnson is also focused on sustainable change; the governor’s pledge to increase the state’s minimum wage to $15 would also benefit DSPs, she has noted. (Murphy’s budget proposal does include $16.7 million, which will trigger a federal match, to boost hourly pay for another group of frontline health workers, personal-care assistants, or PCAs, who assist elderly and disabled individuals with dressing, bathing, and daily tasks.)

Putting others first

“New Jersey’s most vulnerable residents deserve the best, and our direct-support professionals put the needs of others foremost every single day, which is why we remain eager to find a long-term solution to this concern,” Johnson said yesterday.

Frizzell said a sustainable plan for improvement is essential to aging parents of adults with disabilities, like her, who fear what will happen to their children after they die. “Parents are really worried,” she said. “They don’t know what they’re going to do. There’s not a workforce to replace them when they go.”

Frizzell’s daughter, Lauren, can’t walk, talk, eat, or dress herself and she suffers from regular seizures, but she is able to live independently thanks largely to the five DSPs who care for her in shifts. When her longest-serving aid — a 70-year-old woman who had been with her since age nine — decided to retire a few years ago, Frizzell said it took six months to find a proper replacement.

“Lauren isn’t sick. She doesn’t need a nurse,” she said, “but her very survival depends on these DSPs.”