A nurse comes to Karell Richards’ Vernon home for eight hours each night to care for her 7-year-old son, Zayden. Otherwise, Richards would be up most of the night with Zayden, who has a chromosomal disorder and, according to Richards, needs to be watched constantly.

Zayden does not speak, has a weakened immune system and chews on objects that are not food, causing him to become sick frequently. He has respiratory problems that require frequent treatment and a history of seizures.

Before the nurse started, when Richards was instead getting help from a home health aide who couldn’t administer medication or breathing treatments, Richards was often up all night. She said she sometimes fell asleep in her car at stop signs. The home health aide’s agency suggested Richards needed more skilled help. A nurse can, among other things, spot and address changes in Zayden’s condition that he can’t communicate, Richards said.

But last month, Richards received a notice from the state’s Medicaid program, which pays for Zayden’s care, saying the nursing service was not considered medically necessary and that his care could instead be handled by a home health aide, with short visits from nurses to administer the breathing treatments.

Home care agency officials say Richards isn’t the only caregiver facing a significant cut in Medicaid assistance to care for a child with intense medical needs. The service at issue, known as extended, or complex, nursing care, involves a nurse providing services in a person’s home for more than two hours at a time. Clients must have their services reauthorized periodically to continue receiving them.

Data from the state Department of Social Services shows the denial rate for requests for extended nursing services has risen sharply since the beginning of the year.

During the first four months of 2015, authorization for extended nursing services was either denied or partially denied in five out of 282 cases reviewed, a rate of 1.7 percent. From April through the end of June, that rate rose to 5.7 percent – 12 out of 210 cases. Then, from July 1 through Aug. 27, 13 out of 175 cases reviewed were either denied or partially denied — 7.4 percent — more than four times the rate in the first four months of the year.

To be sure, the vast majority of cases continue to be approved, the total number of denials is small, and some denials have been reversed upon appeal.

But home care providers and advocates say the uptick in denials is worrisome, particularly since it affects families caring for young people with significant medical needs, for whom the prospect of cuts in nursing care can lead to worries that they won’t be able to keep their loved one at home.

“The trend toward denials is alarming,” one home care agency official said. Another said some clients were denied continued extended nursing care even if they had not experienced any changes in their medical situations and had been receiving the services for years – and had them deemed medically necessary by Medicaid in the past.

“That’s really a big change,” said Deborah Hoyt, president and CEO of the Connecticut Association for Healthcare at Home, which represents home care agencies. “This is really a challenge, not just for the family members but for these children. The amount of care and supervision and home health that they really require, this change can really put their status in jeopardy.”

Department of Social Services spokesman David Dearborn said some denials appear to occur because of a lack of information from the clients’ health care providers, rather than a lack of medical necessity. He noted that the agency routinely seeks more complete information from providers, but doesn’t always receive it.

Of the 30 denials or partial denials this year, 11 were overturned on appeal.

“Our staff indicates that when additional and appropriate information is submitted during the appeals process, most of the denials in these cases are overturned,” Dearborn said.

Dearborn said that the current situation seems to be the result of increased oversight from the department’s health services staff, “who emphasized clarity in how the medical necessity definition should be applied.”

Why the increased oversight on extended nursing cases?

“Oversight of contractors is normal and required,” Dearborn said. “Contracting authorities sometimes focus on certain aspects.”

Asked why there has been an increase in denials, Dearborn said, “We have no definitive determination at this point of the fairly narrow window.”

‘Families are feeling pressured’

Families who appeal a denial can maintain services while the appeal is pending. But Tracy Wodatch, vice president of clinical and regulatory services for the Connecticut Association for Healthcare at Home, said some families are reluctant to fight, fearing they will lose their services completely.

“Families are feeling pressured, overwhelmed, fearful, stressed, very stressed, and they’re feeling lost, not knowing what to do,” Wodatch said.

While clients denied extended nursing care could instead receive help from a home health aide and brief, periodic nursing visits, critics say that’s not appropriate in cases in which a person’s condition can change quickly or a client’s need for treatment doesn’t follow a predictable schedule.

One client denied continued extended nursing services, 19-year-old Anthony Caruso, who has cerebral palsy and does not walk or talk, frequently removes the feeding tube used to deliver medication and fluids. Without a nurse there to reinsert it, he would need to go to the emergency room, according to a letter from his doctor.

In his case, the denial was eventually reversed. But in the interim, his caregiver worried she would not be able to continue caring for him at home.

“I’m hoping to keep him in the home for at least another couple years or for the rest of his life, but quite honestly, I don’t know if I can,” Anthony’s step-grandmother, Ruby Caruso, said before the denial was reversed.

One home care agency official said it’s appropriate for those authorizing care to ask more in-depth questions.

But it would make an “enormous” difference, the official said, if agencies could work with the Medicaid program to provide documentation to continue care before a family receives a denial notice. Otherwise, families and agencies are left scrambling to meet an appeal deadline. That can be problematic if, for example, a child’s primary physician is away and unable to immediately provide information before the deadline.

“If the clinical guidelines are changing, we can support that, we just need to make sure that everyone is on the same page in terms of the needs of these children being met so that they’re not hospitalized, families are able to keep them in the homes, which is everybody’s desire,” the official said.

The Mirror spoke with officials at multiple home care agencies, who spoke on the condition that their names and agencies not be identified because they contract with DSS.

A growing need

Although receiving care at home is generally less costly than care in a nursing home or hospital, extended nursing care can be costly, particularly compared to services from home health aides.

State Healthcare Advocate Victoria Veltri said there’s a larger policy issue the state must face, even as it deals with tight budgets.

“What are we going to do to address situations of many more kids with very complex health care needs living at home, and making sure their needs are actually addressed so they can stay at home?” she said. “Between more kids…being diagnosed earlier with complex needs, more kids on the autism spectrum, more kids coming out of the [neonatal intensive care unit] with complex health needs, what are we going to do to adjust to that?”

Medicaid is one of the largest items in the state budget, and lawmakers have looked in recent years to find ways to trim costs in the program. The current two-year state budget relies, in part, on a $17.5 million annual savings from Medicaid.

Asked if DSS or Community Health Network of Connecticut, the company that administers Medicaid on DSS’ behalf, had any savings targets for extended nursing services, Dearborn said no.

In response to a question about whether the department had concerns about physicians recommending extended nursing care for patients without enough scrutiny, Dearborn said the department’s “only concern is that members receive the services they require and only the services they require, based upon an assessment of the member’s individual needs in accordance with the state law definition of medical necessity.”

Questions about the process

The partial denials of continued extended nursing services have meant that some clients who had received between 16 and 23.5 hours per day of care were notified they would instead get 12 to 16 hours, said Wodatch, from the home care association.

Some who are less medically fragile but have significantly debilitating conditions have been denied continued extended nursing care, she said.

It’s important to monitor how cuts in services affect both the patient’s physical needs and the family dynamics, since without family members to provide care, the client would most likely end up in a nursing home or another institution, she said.

Wodatch contrasted the reductions in approved care for extended nursing clients with a separate process used to scale back home care services for patients with behavioral health needs. In that situation, the organization that administers the behavioral health side of Medicaid, ValueOptions, would eliminate a small number of nursing visits per week and see how it went before attempting additional reductions.

“If you cut back slowly and you try and see how they manage, and you make sure that the family dynamic stays intact, then ok, do so,” Wodatch said. “But do so methodically and with good thought and good judgment. Don’t just go from this to this without really having any premise for it and hope, keep your fingers crossed, that the patient doesn’t end up back in the hospital.”

Dearborn said the suggestion would be discussed with Community Health Network. Currently, he noted, people whose care is deemed not medically necessary are given a 30-day transition period before the alternative type of care begins.

Worry, then a reversal

The denial notice caused weeks of worry for Anthony Caruso’s step-grandmother.

Ruby Caruso, 61, has taken care of her step-grandson for most of his life. He had a stroke before birth and has cerebral palsy. When he was a baby, she was told he would be “a vegetable.”

She proudly notes that Anthony is not a vegetable. Although he has significant disabilities, he has a job he can do with his right hand – his left arm is paralyzed – and is a generally happy person. It’s happened with a lot of help, including up to 16 hours of nursing care per day.

But in July, she got a notice saying that the nursing services were not medically necessary and that he could instead receive services from home health aides and scheduled nursing visits.

Caruso appealed the decision. Then, after Anthony’s neurologist sent a letter about the need for services, Caruso got a call notifying her that the determination was reversed and the services would be maintained.

She was glad, but had one question: “When are you going to come back at me again?”

She said she was told, “I really don’t know.”