It was 9 a.m. on a Sunday in May, and Chloe Mead was already worn out.

In her living room, she cradled her 7-year-old son, Henry, supporting his head with one hand and helping him toss a ball with the other, careful not to disturb the ventilator that was keeping him alive. A nearby monitor tracked his blood-oxygen levels and a pump was at the ready should his tracheotomy tube need cleaning. In the corner, her 4-year-old daughter was building a pillow fort.

“I need, like, five extra arms,” she said.

Ordinarily, she wouldn’t be by herself. Since infancy, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, has had intensive, round-the-clock nursing at home, with Ms. Mead and her husband serving as fallbacks when a nurse unexpectedly cancels a shift.

But the recent shortage of home-care nurses has forced the couple, who live in Queens, to handle longer and longer periods on their own — as many as 36 hours at a stretch. That morning, her husband, Andy Maskin, was catching up on sleep so he could take that night’s late shift, from 2 a.m. until 7 a.m., when he begins his own workweek.

About 4.5 million Americans with illnesses and disabilities are cared for at home by aides, therapists or nurses. Most of these patients are older, but hundreds of thousands are children with complex health needs, a number that has climbed upward as medical advances allow more to survive into adulthood.

The families of these children have long struggled to find skilled help, but many say Covid-19 has made an already untenable situation even worse. Nurses left the work force to care for their own out-of-school children, or abandoned the profession permanently. And the surging demand for personnel at hospitals, testing sites and vaccination centers drew nurses away with as much as double the wages they earn caring for patients at home.

The easing of the pandemic may not improve conditions much. The shortage of nurses is longstanding and in the wake of a public health crisis that prompted 29 percent of health care workers to consider leaving the profession, many expect a wave of retirements.

“This is as bad as it’s ever been,” said Liz Wise, who works for the nationwide nonprofit Bayada Home Health Care, helping transition young patients from hospitals to homes. Her own daughter needed home-care nursing, so she feels it keenly when patients can’t get the coverage they need. “Disappointing families is enough to keep me up at night.”

It’s no secret that the road to earning the title of “medical doctor” is an arduous one—on average, prospective doctors must complete a four-year undergraduate degree, followed by four years in medical school and three to seven years of residency training. It’s true that all physicians study the human body, but, for most, an essential part of medical training is all but ignored. Most doctors have little to no experience working with and caring for people with intellectual or developmental disabilities (IDD). And it’s this lack of experience that may result in harm, however unintentional, to people with IDD.

People with IDD have complex medical needs just like other patients do. Unfortunately, receiving appropriate care from clinicians who are familiar with the unique needs of those with IDD can be extraordinarily difficult. But many doctors still oversee and provide care to people with IDD, regardless of their lack of experience. Dr. Craig Escudé, president of IntellectAbility, says, “In medical school, even though I studied the heart, cardiac surgery isn’t my field. If I attempted to perform open-heart surgery, I would most likely fail as I don’t have the necessary preparation in that area. The same goes for people with IDD. Most doctors lack the expertise necessary to effectively treat this population and would treat the overlying condition rather than seeking out the underlying cause.”

Families of residents of a state run facility targeted for closure say they are not giving up their fight to keep the doors open. The White Haven Center in Luzerne County is home to about 90 residents with intellectual and physical challenges.

The state announced closure plans in 2019. Families of residents have been fighting ever since to stop the closure. Eyewitness News spoke with a man who’s daughter was a resident here for 40 years. She recently passed away.

“Maria, being at the White Haven Center, really gave her a quality of life that I don’t see how we could have done that at all,” said Thomas Kashatus, the president of White Haven Center Relatives and Friends.

Kashatus’ 52-year-old daughter Maria lived at the White Haven Center since she was 12. She passed away several weeks ago. Kashatus has been one of the leaders in the fight to keep the White Haven Center open.

The state has been gradually phasing out facilities like White Haven, citing better service as well as cost savings to the commonwealth.

State officials argue that residents will be better served in a community setting. 400 employees also will be out of work. The closure announcement sparked protests from family and friends as well as community leaders.

Carl DeBrodie's family hadn’t seen him for months when his remains were found encased in concrete in a Fulton storage unit in April 2017. What they discovered in the weeks following was even more horrifying.

DeBrodie, 31, was a developmentally disabled man living at Second Chance Homes, a care facility in Fulton that had a contract with the state.

In the wake of DeBrodie's highly publicized death, the Missouri Developmental Disabilities Council, a federally funded council appointed by the governor to advocate for the developmentally disabled and advise on policy, released a statement.

"The Council has been following Carl DeBrodie's story and has high expectations that once all investigations are completed that there will be justice for Carl and that there will be necessary systemic changes implemented so that others may avoid such a gruesome death and lived experience," the 2018 statement read.

Years after DeBrodie's death, a close examination of division policy and interviews with officials and front-line staff suggest little has changed in

Colleen M. Lutkevich, who advocated for 35 years on behalf of COFAR and served as its unpaid executive director for more than two decades, officially retired this month from the organization.

When she was 25 years old and pregnant with her first child in 1985, she first went to work part-time as a secretary for COFAR, which had only been established a couple of years earlier.

“People organized COFAR for the sad reason of having a loved one with an intellectual disability,” Colleen said in a farewell message to the Board this past week. “But they channeled their sadness into advocacy and made a real difference in people’s lives, and in the DDS system.

“I feel good about this decision (to retire) and I know that no one is irreplaceable!” Colleen’s message continued. “I remain willing to offer help and advice as needed and I wish all of you the very best in continuing your work with COFAR.” She is continuing to serve as president of the Wrentham Family Association, an affiliated organization to COFAR.

Direct care workers for the elderly and disabled could soon make more money in North Carolina.The House Health committee passed two bills unanimously Tuesday to add more money to Medicaid to increase the pay for staff at group homes and nursing homes, as well as home health aides.

The workers, who feed, bathe, toilet and give medication to disabled and elderly people in care facilities and home settings make an average of only $10.50 an hour, and the coronavirus pandemic only exacerbated shortages of certified nurse aides and home health aides.

Rising wages in other job sectors, such as retail and fast food, are making it even harder for care facilities to compete for workers.

Rep Donna White, R-Johnston, said turnover rates for care workers are at a record 56 percent, and as many as one-third of jobs needed for adequate staffing are vacant.