‘These people are out here and they need help’: NY’s Adult Day Health Care programs remain closed
New York state has allowed doctor’s offices to remain open during the pandemic and reopened day programs for the developmentally disabled. It’s even loosened visitor restrictions at nursing homes.
Yet Adult Day Health Care, which provides medical services and socialization for disabled adults of all ages, has remained closed since the pandemic began. This week marked one year since the state ordered the programs to close, and now families are speaking out.
Fifteen years ago, Chris Williams suffered a traumatic brain injury in a motorcycle accident. He’s now 42, uses a wheelchair, has some difficulty with speech and lives in Lackawanna with his mother, Charlotte Kregg.
“Can you imagine going from your brain tells you, ‘I know how to walk, I can walk, I’ve walked my whole life,’ and now you can't?” Kregg said.
Williams has gotten some help over the years through Adult Day Health Care, or ADHC.
The programs, licensed by the New York State Department of Health and covered by Medicaid, provide nursing, therapy and leisure during the day for adults with physical and mental disabilities. They typically serve about 8,000 clients statewide.
Williams had attended Schofield Adult Day Health Care in Buffalo, one of nine such programs in Western New York. There, he would get physical, occupational and speech therapies, as well as socialization.
“He did fairly well,” Kregg said. “He enjoyed going.”
But since the start of the COVID-19 pandemic last year, Williams spends the entire day at home with his mother, who is disabled herself.
“So we don't go a lot of places,” Kregg said. “His day consists of sitting in a chair. He sits in a recliner and plays games on his iPad. It's been too cold to really go outside. Ever try to push a wheelchair in the snow? So we're kind of stuck in the house.”
She said she understood the decision to close ADHC programs at the start of the pandemic. Not much was known about the virus and facilities weren’t prepared. But then July came, and New York reopened adult day programs for the developmentally disabled, which mostly provide socialization but not medical care.
Not to mention the reopening of schools, restaurants, bars, stores and movie theaters.
“Why can't my son do this? Why are these people any better than my son?” Kregg said. “I need someone to know that we're out here. These people are out here, and they need help.”
Williams' story isn’t unique, said Anne Hill, executive director of the Adult Day Health Care Council, which represents 115 New York ADHC programs, which is more than 90% of all ADHC programs statewide.
“We've heard so many stories over the past year from families,” Hill said. “They're unable to get services, they're unable to get home care in the home, they've gone months without a shower. We know that it's been difficult for these people to get their medications.”
It’s also putting them in hospitals and nursing homes. According to figures provided by the ADHC Council, ADHC programs report their clients experienced an average of two hospitalizations and emergency room visits during a six-month span before the pandemic. That number increased to 12 during the first three months of the pandemic.
Schofield Adult Day Health Care, Williams' program, reported 20 clients have gone into a nursing home permanently since the pandemic began.
“There are participants and caregivers in crisis,” Hill said. “And the state has the ability to solve the problem by reopening Adult Day health care, but they have failed to do so.”
Other states, including Maryland, have reopened their ADHC programs. Hill said the ADHC Council has had conversations with the New York State Department of Health and Gov. Andrew Cuomo’s office, but has gotten a timeline for reopening.
“It's really hard to be heard through all of the other stuff that's going on in Albany right now,” she said. “And we've met with them and met with them, and they just won't do it.”
WBFO asked the state Department of Health why ADHC hasn’t been allowed to reopen. In a statement, a spokesperson said ADHC will be permitted to resume in-person activities at “the appropriate time.”
The spokesperson also said the state is reimbursing ADHC programs for providing telehealth services. However, Hill said telehealth simply isn’t good enough.
“You can't give somebody a shower or toilet them or feed them over the phone,” she said. “And a lot of Medicaid recipients have Medicaid phones, with a limited number of minutes and data on them. So while telehealth is an important tool, it's not a replacement for in-person services.”
It’s possible the Department of Health is concerned that ADHC participants are more medically vulnerable than adults in other day programs. But virtually anyone attending an ADHC program is now eligible for a COVID-19 vaccine, whether because of age, disability or chronic condition.
And Hill said ADHC could even help with the vaccination effort.
“Rather than individuals going to a large vaccination site in Buffalo, or having to contact Medicaid transportation and get them to a Walgreens or a Walmart, Adult Day Health Care programs could contract with a pharmacist and the pharmacist could come to program and vaccinate everybody all at one time,” she said.
Williams has lost muscle mass staying at home, and without speech therapy, he’s gotten more difficult to understand.
It’s also been difficult for his mother as a caregiver.
“There’s no break now,” Kregg said. “At least before he would go to program four to six hours a day, three days a week. I can get my shopping done, I can go to doctor's appointments, keep up with my own health. I can't do that now.”
With state lifting more restrictions everyday, like the elimination of curfews at gyms and casinos, Kregg said she feels ADHC clients are being left behind.
“Everybody feels good that everything is running smooth, but what about these people that are still left behind?” she said. “What about people's self-esteem and self-worth? They're not brain dead. They're just disabled.”
The ADHC Council has gotten public support from some state lawmakers, but as far as Hill is aware, none of them have proposed legislation to reopen ADHC.