With Gov. Kathy Hochul’s first State of the State address approaching, supporters of New Yorkers with intellectual and developmental disabilities are eager to hear how the governor plans to address a growing staff shortage who reached critical proportions during the pandemic.
Leaders of nonprofits say they have long faced barriers in recruiting and keeping direct care staff – it’s tough work with low pay – but COVID-19 has pushed even further out ground.
Jobs are crucial, advocates say, if New York is to live up to its commitment to ensuring residents with disabilities live as independently and productively as possible. But workers – mostly women, often immigrants and people of color – face a growing wage gap.
âOur toes are on the edge of a cliff,â said Sen. Mike Martucci, R-Wawayanda, whose district encompasses parts of Delaware, Orange, Ulster and Sullivan counties. âIt’s really something we’ve been doing for decades. “
The cost goes far beyond money, say family members like Nancy Witherell, whose sister Susan lives at Fisher House, a group home run by Jawonio that provides support for people with developmental disabilities in the Mid-Hudson region.
âWe have lost residents and staff to COVID,â Witherell said during the December 15 virtual conference with lawmakers and leaders on the ground. âYet DSPs continued to present themselves and their families at risk. Most of these people have two jobs to make ends meet. Can no one discern that workers for disabled people deserve more than crumbs? “
Shortages of professional direct support staff – known as DSPs – exceed 20% statewide. About 93% of agencies say that applicants for a growing number of vacancies have fallen. Half of the agencies that support people with developmental disabilities say they have had to cut programs and services because they cannot find staff. Group homes are closing and consolidating, particularly in the Finger Lakes and western New York State.
While fast food workers across the state will see $ 15 an hour minimum wage in 2022, the average hourly wage for DSPs – those who assist people with daily tasks – is $ 14.56.
âIf we can’t recruit and retain the workforce,â Witherell asked, âwhat happens then? The nursing homes? The institutions? I promised our parents there many years of being the voice (of Susan) “.
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Hochul has taken important steps to help. She also made calculations that cause concern.
In November, Hochul allocated $ 1.5 billion in federal US bailout funding to help with the retention and recruitment of DSPs. This included bonuses for those who worked during the pandemic and for staff vaccinated against COVID.
And the governor recently signed a list of bills intended to support people with intellectual disabilities. A bill demands an investigation into the state’s response to the COVID pandemic and its impact on people with developmental disabilities. Last year the Office for People with Developmental Disabilities Referred ‘Asymptomatic’ Residents to Group Homes, using advice similar to a controversial rule that sent People infected with COVID in nursing homes. OPWDD has documented 607 deaths of residents of COVID group homes, to December 16.
But Hochul vetoed the legislation on December 30 this would increase funding for private schools that cater for disabled children. Schools said they could not retain staff or attract new teachers due to low salaries. Instead, it committed to including the additional funding in its budget.
Some advocates have expressed concern that Hochul will use the additional funding for the school as a way to impose further budget cuts on lawmakers.
Hochul, however, said when announcing the school funding plan: âPeople with disabilities have my commitment: As governor, I will always be by your side and fight for you.
Lawyers welcome Hochul’s decision to give Kerri Neifeld the post of Acting Commissioner of the OPWDD. Neifeld has a long history in social services, and elected officials and advocates say conversations with her have shown concern about the workers’ crisis.
There is no guarantee that Hochul will mention the personnel crisis during his Jan. 5 speech, which often provides a governor’s budget plans for next year.
Hochul’s office did not respond directly to requests for comment on the matter.
However, Jennifer O’Sullivan, spokesperson for the OPWDD, said in December that “the Hochul administration is working on several strategies to deal with this crisis and improve the situation of the staff”.
O’Sullivan added, âOPWDD and our provider agencies, as well as most social service organizations across the country, are facing a labor shortage on the scale of a crisis. “
Tom McAlvanah, president of New York Disability Advocates, said Hochul recognizes the community is struggling. “I am encouraged by the conversations I have already had with her and her staff,” he said during the December 15 virtual conference.
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What defenders want
Advocates called on Hochul to include the 5.4% cost of living wage hike in his 2023 state budget plan.
While the state operates some programs and residences directly for some New Yorkers, most group homes and day rehabilitation programs are run by nonprofit agencies that receive reimbursements from the state. Wages are blocked by what provides for state and federal formulas.
In the years to come, advocates want the state to honor a commitment made in 2006 to adjust DSP salaries to the consumer price index.
Michael Seereiter, president and CEO of the New York Alliance for Inclusion and Innovation, uses the word âpermanentizationâ to describe the problem.
âI find it continually frustrating that we have to fight for something that is already there,â Seereiter said.
There is also pressure to offer income tax credits to direct care workers.
The estate should also have a “career ladder,” advocates say. This would include certification and training programs through the local programs of BOCES, SUNY and CUNY.
Professionalizing work, advocates say, would better reflect the responsibilities that DSPs take on. This means increases for more responsibility.
While the $ 1.5 billion Hochul earmarked for DSP retention is widely praised, advocates are calling it triage – “Dressing on the wound,” Seereiter said. They want built-in bonuses, so DSPs that stick around and advance their skills are rewarded.
Westchester County Democrat MP Tom Abinanti also wants the federal government to develop what he calls a “clear green card” that could help recruit workers to come to the United States.
âWe’re not going to fix these issues in a year or two,â Seereiter said. “It’s going to take years and years because it took years and years for it to degrade.”
“A Different Tone” in Albany
New York was considered a leader in personal care until the shock of the Willowbrook scandal of the 1970s when the institution’s abuse of people with developmental disabilities came to light. The state, as part of a federal court settlement, agreed to move residents of Willowbrook State School to small group homes. Changes in laws followed, and the system of large state-run institutions gave way to group homes and daytime adjustment programs.
âThirty years ago, a DSP was a career position that paid twice the minimum wage,â Seereiter said. âWe have seen the direct support professional work slip away economically. “
The salary increases were sporadic. But any economic impetus faded as DSP wages stagnated amid subsequent minimum wage increases and more than a decade of failed attempts to pursue cost-of-living adjustments for DSPs.
The situation has worsened over the past decade, advocates say.
âWe had a governor who was not paying attention or actively declaring war in the area of ââsocial services,â said Abinanti, referring to former governor Andrew Cuomo, who was the target of several lobbying efforts to increase DSP salaries.
Missy Miller MP R-Hempstead recalled her advocacy days when she traveled with her son, Oliver, to Albany to attempt a meeting with Cuomo. “Our governor was not even willing to meet with us,” she said. âI hope our new governor will be ready to meet firsthand. It makes a big difference – meeting the people who are leaving unaided.â
Lawyers and lawmakers recognize that fixes will take years.
âI am very encouraged by the completely different tone in Albany,â said MP Chris Burdick, D-Bedford, who represents parts of Westchester. “We now have a great opportunity. Let us seize this opportunity this legislative season and in the next budget.”
But advocates and family members like Miller say there is no time to wait.
âWe are at serious risk of seeing people die from not getting the help they need,â said Miller, who said his son’s health has deteriorated during COVID isolations and staff shortages. “Do you know who pays? Oliver.