L. to R.: Residential nurses Theresa Entler, her daughter Allison, and ACDS CEO Michael Smith.

When residents of Long Island group homes for the developmentally disabled were hospitalized for treatment of coronavirus, a Plainview-based nonprofit’s staff stayed with patients in 12-hour shifts so they wouldn’t be alone.

The heroic feats were but some of the notable efforts that nurses and direct service providers from ACDS performed when the COVID-19 pandemic recently peaked on LI, resulting in some serious cases among the 55 residents of the agency’s eight group homes in Nassau County.

“You have got to be pretty special to say, ‘I’ll take a 12-hour shift in a COVID unit in a hospital so that the resident says they have somebody they know who’s there with them,’” Michael Smith, who’s been executive director of ACDS for the past 15 years, told the Press. “We had several weeks of having to do that.”

Founded in 1966 as The Association for Special Children and later changing its name to the Association for Children With Down Syndrome, the agency now known as ACDS provides much-needed services to children and adults with Down syndrome and other developmental disabilities. The pandemic easily ranks as the biggest challenge it’s faced in its half century of existence. 

The agency’s about 500 employees provide lifetime services to more than 1,000 people with developmental disabilities and their families. It has an early childhood education center on Long Island encompassing day care, center-based early intervention and preschool special education; a special needs preschool in Westchester; eight group homes and one transitional apartment; two locations for its “Opportunities” day habilitation program without walls; a five-plus program for recreation and respite that meets in various sites throughout the community; a sleepaway summer camp in upstate Garrison; and brokerage/fiscal intermediary services for families on LI. 

Many of those services have been disrupted by the crisis. Schools shifted to remote learning. Summer camp was canceled. Some of the group home staffers had to quarantine in the group homes for two weeks to ensure isolation. More than two dozen staff members — two of whom lost husbands — had to self-isolate after being exposed to the virus. Personal protective equipment proved challenging to acquire.

“Nobody prepared any of us for these changes to our lives,” Smith says, noting that no residents were lost to COVID-19. “We were able to hold it together.”

While stagnant reimbursement rates and ever-rising costs challenged in good times the agency’s ability to maintain sufficient resources to recruit and retain quality staff and invest in innovative programs, it is now issuing a special fundraising appeal to defray the cost of hazard pay issued to its staff.

The added expense to its $27 million annual budget comes as ACDS is in the process of finalizing the purchase of the 47,043-square-foot headquarters on Fern Place it has leased from the Plainview-Old Bethpage School District for the past two decades. 

“Neither the state nor federal government is reimbursing us for hazard pay, for these extra costs, which by now are reaching hundreds of thousands of dollars,” Stern says. “We do have an appeal underway to try to help us raise some money to recognize the efforts and help us with those unexpected costs.”

For more information or to donate, visit acds.org

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Timothy Bolger is the Editor in Chief of the Long Island Press who’s been working to uncover unreported stories since shortly after it launched in 2003. When he’s not editing, getting hassled by The Man or fielding cold calls to the newsroom, he covers crime, general interest and political news in addition to reporting longer, sometimes investigative features. He won’t be happy until everyone is as pissed off as he is about how screwed up Lawn Guyland is.