Reopen New York’s adult day health care programs

As Gov. Andrew Cuomo weighs new business closures in order to curb a resurgent pandemic, the venues of one vital health care service were never given a chance to reopen in New York: nurse-staffed adult day health care programs. These programs, known in the industry as “medical model ADHCs,” served roughly 8,000 chronically ill patients across New York, the vast majority of whom are elders and receive Medicaid, according to Anne Hill, executive director of the Adult Daycare Health Care Council.

Normally, these patients, with serious conditions such as heart disease, COPD and dementia, would be transported several times each week from where they live with family members or in a group home to these program venues, where they are supervised by skilled nursing staff. Along with providing the patients with this doctor-ordered care, this frees family members to attend to other life matters such as working and parenting.

After months without permission to reopen, at least 11 programs have closed down permanently, according to an email Hill received from the state Department of Health. That leaves vulnerable patients and families on their own to match the services normally prescribed by physicians and provided by skilled nurses.

The state managed to get all other health care facilities, as well as retail, restaurants, in most areas back up and running. Even schools, with all the complications that reopening them entailed, are running at least part-time in most of the state.

So why aren’t these vital day programs for an old, small, and vulnerable population also open? Medical ADHCs differ from social day programs which are not physician-directed, serve a much larger population – typically with less severe conditions – and have been allowed to remain open. ADHC patients face a range of often life-threatening, chronic conditions, so staff administer and monitor critical medications and provide occupational, physical, and speech therapies. They also provide at least one hot meal, sometimes two, per day.

All of these services offer a sorely needed respite for family caregivers, allowing them to go to work unencumbered by anxiety about what might happen to a frail parent or spouse at home alone. For patients, they are a buffer from isolation and depression and a bulwark against declining health.

Among the latest ADHC operators to announce a permanent closure is one of the oldest and largest in the state, GuildCare, which operated the only program in the state designed for patients who are blind or low-vision; one-third of their clients have a developmental disability, according to a November 2 memo from Dr. Calvin Roberts, CEO of parent organization Lighthouse Guild. The nonprofit program operated facilities in Manhattan, Albany, Buffalo and Niagara Falls, serving about 350 patients in total. Former patients are reporting “mental health decline, depression, anxiety and suicidal ideation,” Roberts wrote in the memo. 

The risks are not just to mental health: according to the non-profit umbrella group Adult Day Health Care Council, the 113 member ADHCs in New York reported an average of 12 emergency room visits and hospitalizations for now-homebound clients over the three months from April to June, compared to just two on average for the entire six months prior to the shutdown. Roberts’ Nov. 2 memo also reports that, since the closure, 13 GuildCare clients have died, mostly from causes other than COVID-19. Nearly 40 have been hospitalized for causes unrelated to COVID-19, including fractures induced by falls. At least nine have been moved into long-term nursing homes. Updated figures were not available.

ADHCs were initially designed as a less-costly and more patient-friendly alternative to long term nursing care, enabling clients to remain at home and within their community. The extended closure threatens an already-struggling health care model, which has been in decline over the past several years as managed Medicaid plans replaced fee-for-service reimbursement models. Hill said that when she joined the Adult Daycare Health Care Council a decade ago, there were 168 members. When the pandemic struck, that number had already declined to 124. It now stands at 113.

The usually talkative governor has kept his lips sealed on when ADHCs will be able to resume services. He has not responded to two letters sent to his office by Roberts urging him to permit reopening. 

The governor’s office did not respond to a request for comment.

Cuomo’s silence has baffled and infuriated program operators, participants, and at-home caregivers. “Families are wondering why a member may eat at a restaurant, go to the movie theater, even gamble at a casino,” said Hill. “But they are not allowed to receive physician-ordered skilled nursing services or therapies at a certified, regulated adult day health care program.”

Jonah Bruno, a spokesperson for the Department of Health, responded in an email to me, “DOH currently allows ADHCs the flexibility to provide services through telehealth.” Telehealth has clearly benefited many during the pandemic, yet it is a poor substitute for hands-on in-person daily nursing care. 

In the absence of these community-based programs, people may not only miss medications and meals – which they are unable to prepare – but may injure or soil themselves without help at hand. They may see gains from regular therapies slip away or may slide more quickly into dementia. According to Anne Hill, anecdotal reports from more than 40 member ADHCs across the state underscore that many patients are missing some or most medication. Many are also eating only sporadically, and personal hygiene is suffering.

Family members or other non-professional caregivers have been forced into roles they are poorly equipped to handle. They are also often balancing the needs of a parent or grandparent, earning a living – often at a low-wage and/or essential job – and helping school-aged children thrust into distance learning. For many, it’s an unworkable situation.

The state’s reticence to reopen centers and renew services to this very vulnerable population may seem logical in the face of the devastation wrought by COVID-19 among older people, New Yorkers with comorbidities and in nursing homes. But the state’s refusal to acknowledge the problems the closures have created is inexcusable. Yes, these mostly older, chronically ill people are at serious risk from the coronavirus. But leaving them at home unsupervised without professional medical assistance creates health risks for all involved.

Hospitals will remain open because people need care. Critically important medical ADHCs should be allowed to reopen and should remain open for the same reason. With trained and certified nursing staff, these programs provide a safer daytime environment for their participants than home. And in easing the pressure off home caregivers, they make home environments safer as well.