More resources are needed in the Rochester area
By Deborah Jeanne Sergeant
The COVID-19 pandemic highlighted the need for greater availability of nursing home and assisted and independent living opportunities for older adults.
Too few staff and too few residences mean that this population has few choices when they begin to need more support.
The same is true of people with developmental disabilities as they come of age.
As parents of people with disabilities grow older and die, parental support will not be available. But those who want to and are able to live independently of their families as young adults have few places to go.
Group homes are in short supply as are workers who support them.
Typical setups include a private bedroom and bathroom for each resident with shared living rooms and kitchens. Workers staff the group home 24-7 with the level of assistance needed to help residents with activities of daily living.
The Office for People with Developmental Disabilities in Albany provides certified housing support to more than 35,000 people with developmental disabilities statewide. The OPWDD invests more than $5 billion annually to maintain and develop more housing options for people with developmental disabilities.
“Frontline staff, such as direct support workers, are critical to helping people with developmental disabilities reach their goals and be active and inclusive members of our communities, as well as ensuring people’s health, safety and wellbeing,” said Jennifer O’Sullivan, director of communications for OPWDD.
Brittany Jencik, president of Parents Helping Parents Coalition of Monroe County, mothers 21 children, 14 of whom have intellectual and developmental disabilities.
“Professionally, I most often hear ‘Who will care for my child when I’m gone’ and ‘Where will my child live as an adult?’” she said. “These concerns are very valid and very challenging to find individual solutions, especially given shortages of resources, program cuts and the housing crisis.”
The Arc Ontario in Canandaigua operates 15 residential group homes and supervised apartments. The latter are for people who are capable of living more independently, but still receive oversight and support as needed.
Jenine J. Cleary, senior certified human resource professional and HR director at The Arc Ontario, said that both staffing shortages and availability of appropriate housing impede the organization from opening more facilities.
“Some of our homes are two-story dwellings, which proves challenging based on the accessibility of the individual,” Cleary said. “The state prioritizes individuals for housing. If we have one bed available, they give us a list of the top 50 needs and we determine based on the space available. You’re looking at the ability to accommodate the individual. If we say none of these 50 are available because this is a two-story home and the individual needs accessibility, they send us a new list. We have three open spaces right now, but we’re working through the list.”
As for staffing, the organization has tried to mitigate this difficulty by cross-training staff so that people who work in a day program could also pick up shifts as needed to support residential individuals, for example. The Arc sends out a group text to let employees know about shifts available.
For people who cannot find placement in a group home or independent living apartment, they simply must wait for an opening.
“Certainly, from the parents’ perspective that they share with me, there’s a high need for placement options for their children and the wait list can be years for them, even when there’s an urgent need,” said Lorna Patanella, pediatric nurse practitioner UR Golisano Division of Developmental and Behavioral Pediatrics. “What I hear is that they are under-staffed, which limits the availability of residential placements for families who need them. We’d prefer to have a home fully staffed with qualified providers than risk someone being placed in a home that’s not fully staffed.”
She thinks that additional funding would help organizations offer more enticing wages and thus hire more employees.
Families who can afford to do so may hire help for their adult children or look at community habilitation and day programs, which work for individuals whose behavior is appropriate in those settings.
“The harder part is for children who have very dysregulated behaviors because of their disabilities,” Patanella said. “They can be aggressive towards themselves and others and that can limit their day program options. Those are families in greater need of residential placement.
“It’s frustrating to everyone involved, including clinicians like myself and certainly the families.”
The OPWDD maintains that funding increases and other efforts should improve the situation.
“New York has taken aggressive action over the past several years to counteract the workforce shortage being experienced by OPWDD and our provider agencies, as well as most human services organizations across the country, including enhanced wages and bonuses, professionalization of the workforce and through our #MoreThanWork recruitment campaign,” O’Sullivan said.
The state’s executive budget proposes a 2.1% targeted inflationary increase for all OPWDD providers to further address rising operating costs and cost of care. O’Sullivan said that when added to funding that has been provided since 2022 for cost-of-living increases, rate updates, bonuses and American Rescue Plan projects, the proposals add up to almost $4 billion invested in the developmental disabilities service system over the last four years.
Training support workers is also a big priority to OPWDD, which has been working with SUNY and National Alliance for Direct Support Professionals to offer credentialing and certification to direct support workers.
These efforts “improve retention among staff and professionalizing the career,” O’Sullivan said. “More than 2,000 DSPs and frontline supervisors having earned their national certification — as well as college credits and stipends — in the last year.”