Tagged California Healthline

Children With Disabilities Endure Long Waits For Life-Changing Medical Equipment

Bev Baker-Ajene waited so long to get an adult-sized wheelchair for her teenage daughter, Savitri, that she eventually forgot she’d ordered it.

For the better part of a year, Baker-Ajene pushed Savitri — who has cerebral palsy, spastic quadriplegia and epilepsy — in a child-sized chair that was too small for her. Baker-Ajene said she also has run into problems getting an appropriate shower chair for 17-year-old Savitri. Because of that, she mostly gives her daughter sponge baths in bed.

“It’s ridiculously difficult to get what you need for your child,” said the 62-year-old Clovis, Calif., resident and graphic designer. “I’m tired now. I try not to argue with people anymore, because I need my energy for her.”

Bev Baker-Ajene was frustrated trying to acquire an appropriate wheelchair and shower chair for her teenage daughter, Savitri, who has cerebral palsy, spastic quadriplegia and epilepsy. (Courtesy of Bev Baker-Ajene)

Many California children with serious health care needs often wait months, or even years, before they receive essential medical equipment like custom wheelchairs, shower chairs and hospital beds, according to a recent report.

For some children, these long waits aggravate existing health problems, cause pain and pressure sores, or exacerbate developmental delays, said the report, published in May by the Lucile Packard Foundation for Children’s Health.

“It’s a big bureaucratic mess, and kids are suffering,” said Maryann O’Sullivan, an independent health policy consultant and author of the report.

In one case Sullivan documented, a boy with muscular dystrophy started kindergarten in a stroller because his parents could not get him an appropriate wheelchair in time, in part due to the slow insurance approval process. In another case, a 7-year-old with a serious bone disorder has remained in diapers for years while waiting for a state public health program for children to find a vendor to supply him with a modified commode.

A variety of factors lead to the delays. Families say they are often bounced between private health insurance companies and publicly funded programs such as Medicare, Medi-Cal and California Children’s Services (CCS), which provides coverage for 200,000 children with special health care needs. Once families have navigated that bureaucratic maze to obtain approval for equipment, low reimbursement rates paid by some of the public insurers can make it difficult to find vendors willing to provide the equipment.

Juno Duenas, the executive director of the San Francisco-based Support for Families of Children With Disabilities, said appropriate equipment can be essential to a child’s independence, future job prospects and ability to contribute to society.

Many parents say they struggle to get equipment, in part, because they don’t understand the system. Yuki Baba, a 54-year-old translator who lives in Berkeley, Calif., waited a year to get a hospital bed for her son, Nate, who has cerebral palsy. At 5, Nate was still sleeping in a crib he’d outgrown. Nate is insured by both California Children’s Services and Medi-Cal, the state’s health insurance program for low-income people, and Baba kept calling the wrong program for help.

“Because I didn’t know the system very well, I wasted a lot of energy and time,” she said.

Even when the approval process is smooth, low rates paid by the government-funded programs California Children’s Services and Medi-Cal can mean there are sometimes no outside vendors willing to provide equipment.

California Children’s Services covers treatments and therapies for children under 21 who meet income guidelines and have a range of eligible serious medical conditions, including cerebral palsy, traumatic injuries and cancer. Many of these children also are insured by Medi-Cal. Others have some private insurance coverage combined with CCS.

Dave Kramer-Urner, CCS administrator for Santa Cruz County, says he has a hard time finding vendors to provide padded bath benches, bidets and certain crutches because reimbursements from the program are low.

CCS rates haven’t changed in 10 years, he said. And the disappearance of small “mom and pop” vendors has exacerbated the problem. The last such vendor in Santa Cruz shut its doors three years ago, he said.

“The big companies have the capacity to say ‘no’ more easily,” he said.

O’Sullivan’s research relied on three existing surveys of parents, advocates and health care providers. She also interviewed dozens of medical therapists, nurses, physicians, vendors, advocates, parents and staff from Medi-Cal managed-care health plans.

O’Sullivan notes in her report that the California Department of Health Care Services, which administers both Medi-Cal and California Children’s Services, doesn’t track wait times for medical equipment and hasn’t set a minimum time frame for the delivery of such equipment.

Tony Cava, a spokesman for the department, said in an emailed statement that it “has been working for several years to improve health care and to emphasize quality and coordination of care for children and youth with special health care needs.”

The department will roll out a program in 21 counties in the coming months to coordinate health care under California Children’s Services and Medi-Cal, Cava said. The program should address many of the issues outlined in O’Sullivan’s report because it will reduce bureaucratic back-and-forth, he added.

However, the majority of children in the CCS program don’t live in those counties, so the changes won’t affect them.

Health Plan of San Mateo, which piloted the integration of Medi-Cal and CCS five years ago, has addressed many of the administrative hurdles detailed in the report, said Sophie Scheidlinger, the plan’s pediatric health manager. However, she continues to see delays due to a shortage of vendors willing to work with the public programs.

In the meantime, many parents fight to find workarounds — or just pay for things themselves.

Alison Beier’s son, Evan, was born two months early with renal failure, a malformed urinary tract and multiple congenital anomalies. While still an infant, Evan was stuck in the hospital for several days after doctors insisted that he needed an automated blood pressure monitor with an infant-sized cuff before they would release him. Neither his public nor private insurers would pay for one.

“Insurance wouldn’t pay for the monitor, we couldn’t afford the monitor, and we didn’t know how to get the monitor,” Beier said.

Eventually, Beier posted her problem on Facebook. A friend of a friend worked at the company that manufactured the monitor and was able to help her.

She feels blessed to have her son, who has gone through 50 surgeries and has battled rejection of his two transplanted kidneys since 2012. She describes him as a brilliant 8-year-old and “the happiest guy on the planet.” Still, advocating for his needs can be overwhelming.

“It’s like I’m always fighting for somebody to cover something,” she said.


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

States Attacking ACA Would Hurt Most If Shield On Preexisting Conditions Were Axed

If the Affordable Care Act’s protections for people with preexisting medical conditions are struck down in court, residents of the Republican-led states that are challenging the law have the most to lose.

“These states have been opposed to the ACA from the beginning,” said Gerald Kominski, a senior fellow at the UCLA Center for Health Policy Research. “They’re hurting their most vulnerable citizens.”

Twenty Republican state attorneys general and governors challenged the constitutionality of the ACA in federal court in February. Last month, U.S. Attorney General Jeff Sessions and the Department of Justice made the unusual decision not to defend key portions of the law against this legal challenge.

The states’ lawsuit argues that because Congress eliminated the Obamacare tax penalty for not having insurance coverage, effective next year, the entire law is unconstitutional. By extension, the suit calls on federal courts to find the health law’s protections for people with preexisting conditions unconstitutional — and Sessions agrees.

Nine of the 11 states with the highest rates of preexisting conditions among adults under 65 have signed onto the lawsuit to strike down the ACA, according to data from insurance companies and the U.S. Centers for Disease Control and Prevention. The 2015 data, the most recent available, were analyzed by the Kaiser Family Foundation in 2016. (Kaiser Health News, which produces California Healthline, is an editorially independent program of the foundation.)

Those who support the lawsuit contend that there are other means of protecting people with preexisting conditions.

“If a court strikes down the constitutionality of the ACA, there are ways to repeal and replace without Arizonans with preexisting conditions losing their coverage,” said Katie Conner, a spokeswoman for Arizona Attorney General Mark Brnovich.

Conner said her boss, who is party to the lawsuit, believes preexisting conditions should “always be covered.” In Arizona, more than 1 in 4 adult adults under 65 have a preexisting condition, according to the data.

The state with the highest rate of adults with preexisting conditions is West Virginia — 36 percent of those under age 65. That means that about 1 in 3 of them could have a hard time buying insurance through the individual marketplace without the ACA protections.

The office of West Virginia Attorney General Patrick Morrisey, who joined the legal challenge against the ACA, declined to comment. But a spokesman for Morrisey’s re-election campaign told PolitiFact last month that “help should be provided to those who need it most, including those with preexisting conditions.”

Plaintiffs in the lawsuit “are paying lip service to these critical protections for people, but they are in fact engaged in a strategy that would get rid of those protections,” said Justin Giovannelli, an associate research professor at Georgetown University’s Center on Health Insurance Reforms. “Frankly, it’s hard to square what they’re saying on the one hand and what they’re arguing in the courts on the other.”

According to a poll released in June, also by the Kaiser Family Foundation, three-quarters of Americans say that maintaining protections for people with preexisting conditions is “very important.” This includes majorities of Democratic, Republican and independent voters.

Before the health law was adopted, insurance companies routinely denied coverage to millions of people with preexisting conditions who purchased insurance through the individual marketplace. If they didn’t deny coverage outright, some health plans charged consumers exorbitant premiums, or offered policies that excluded coverage for pricey conditions. (Although many people got insurance through their employers or public plans that covered preexisting conditions, they could have been left vulnerable if their employment status or other circumstances changed.)

The ACA ended those practices.

Common conditions that led insurance companies to deny coverage included high blood pressure, cancer, obesity, diabetes and depression, among many others. Some people were denied for having acne, asthma or for being pregnant.

The KFF analysis estimated that at least 27 percent of adults under 65 — more than 50 million Americans — had at least one preexisting condition that would have jeopardized their coverage pre-ACA. The foundation said its estimates were an undercount because some diseases that insurers cited when declining coverage are not in the survey data. Also, each insurance company set its own rules and conditions for denials, making accurate counts of those who could be affected hard to nail down.

Less precise estimates by other researchers and the Department of Health and Human Services show that up to half of all adults under age 65 have at least one preexisting condition.


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

The Other Victims: First Responders To Horrific Disasters Often Suffer In Solitude

The day a gunman fired into a crowd of 22,000 people at the country music festival in Las Vegas, hospital nursing supervisor Antoinette Mullan was focused on one thing: saving lives.

She recalls dead bodies on gurneys across the triage floor, a trauma bay full of victims. But “in that moment, we’re not aware of anything else but taking care of what’s in front of us,” Mullan said.

Proud as she was of the work her team did, she calls it “the most horrific evening of my life” — the culmination of years of searing experiences she has tried to work through, mostly on her own.

“I can tell you that after 30 years, I still have emotional breakdowns and I never know when it’s going to hit me,” said Mullan.

Calamities seem to be multiplying in recent years, including mass shootings, fires, hurricanes and mudslides. Just last week, a gunman burst into the newsroom of the Capital Gazette in Annapolis, Md., killing five journalists and injuring two others.

Many of the men and women who respond to these tragedies have become heroes and victims at once. Some firefighters, emergency medical providers, law enforcement officers and others say the scale, sadness and sometimes sheer gruesomeness of their experiences haunt them, leading to tearfulness and depression, job burnout, substance abuse, relationship problems, even suicide.

Many, like Mullan, are stoic, forgoing counseling even when it is offered.

“I don’t have this sense that I need to go and speak to someone,” said Mullan. “Maybe I do, and I just don’t know it.”

In 2017, there were 346 mass shootings nationwide, including the Las Vegas massacre — one of the deadliest in U.S. history — according to Gun Violence Archive, a nonprofit organization that tracks the country’s gun-related deaths.

The group, which defines mass shootings as ones in which four or more people are killed or injured, has identified 159 so far this year, through July 3.

Signs that read “Vegas Strong” can be seen all around Las Vegas. “Certain things trigger emotions that I didn’t expect,” says Antoinette Mullan, nursing supervisor at University Medical Center of Southern Nevada. (Heidi de Marco/KHN)

The “first responders” who provide emergency aid have been hit hard not just by recent large-scale disasters but by the accumulation of stress and trauma over many years, research shows. Many studies have found elevated rates of post-traumatic stress disorder among nurses, firefighters and paramedics. A 2016 report by the International Association of Fire Fighters found that firefighters and paramedics are exhibiting levels of PTSD similar to that of combat veterans.

Experts have found a dearth of research on treatment, insufficient preparation by employers for traumatic events and significant stigma associated with seeking care for the emotional fallout of those events.

“When we have these national disasters or have a guy take a truck and run people over … those are added stressors we aren’t prepared for,” said Jeff Dill, a former firefighter and licensed counselor.

Dill said the emotional toll of these large-scale horrific events is magnified because everyone is talking about them. They are inescapable and become emotional “trigger points.”

“Anniversaries are the hardest,” he said.

Some employers are working on developing greater peer support, he said, but it often comes after the fact rather than proactively. “We met a lot of resistance early on because of the [stoic] culture,” said Dill, who travels the country teaching mental health awareness workshops for firefighters and other emergency personnel.

He said the culture is slowly shifting — particularly because of the rise in mass public shootings across the country.

The Inland Regional Center (IRC) in San Bernardino, Calif. (Heidi de Marco/KHN)

A memorial sign near the Inland Regional Center (IRC) in San Bernardino honors the 14 people killed and 22 others seriously injured during a shooting on Dec. 2, 2015. (Heidi de Marco/KHN)

‘I Was Scared’

In 2015, Gary Schuelke, a police watch commander, raced to the scene of a holiday party in San Bernardino, Calif., where he and his fellow officers faced a fusillade of gunfire from a pair of homegrown terrorists.

He’d seen a lot on the force over the years, but this call was different — and not just because of the numerous casualties. His son, a young police officer, was there with him.

Schuelke and his son, Ryan, chased the assailants’ car as the bullets whizzed by. It was the younger Schuelke’s first time exchanging fire with suspects.

Gary Schuelke, a police watch commander, raced to the scene of a holiday party in San Bernardino, Calif., where he and his fellow officers faced a fusillade of gunfire from a pair of homegrown terrorists. (Heidi de Marco/KHN)

Afterward, when both were safe, “I asked him, You doing OK?” Gary Schuelke recounted. “If you’re not, it’s cool. You can talk to me about it. He said, ‘I’m good, Dad. I’m very happy to be part of taking down the bad guys.’”

Ryan was “just like I was when I was in my 20s … chasing bad guys and making arrests,” the elder Schuelke said. He said he had decided early in his career to try to “compartmentalize” his work experiences so they wouldn’t affect his personal life.

Still, certain calls have stuck with him. Like many first responders, he is particularly affected when kids are hurt or killed. He still recalls his first homicide, a 13-year-old girl shot in the hip.

“She bled out and took her last breath right there in front of me,” Schuelke said. “That was the first time I was like, man, this job is real.”

Generally, no one focused on officers’ mental health back then, he said, but experience has taught him how important it is to do just that. After the 2014 terrorist attack, which left 14 would-be revelers dead, his department quickly set up a “debriefing” meeting for the officers involved.

“I made it a point in that meeting that I was going to talk about the fact that I was scared,” said Schuelke. “Not try to be macho in there and act like nothing bothered me about it.”

Cumulative Stress

In 25 years as a firefighter, Randy Globerman was called upon time and again to cope with other people’s traumas and disasters. He never really took account of how the experiences affected him.

“You spend all your career suppressing that stuff,” he said.

Then came the Thomas Fire, considered the largest in California’s history, which decimated hundreds of homes in Ventura and Santa Barbara counties. As his fellow firefighters were deployed to save what they could of their community, Globerman faced the real prospect of losing his own home.

For 36 hours, armed only with a bucket and water from his Jacuzzi, he fought to keep the flames back. He was frantic. “I was kind of a mess,” said Globerman, 49. “I felt sick, I felt sad. I went through all sorts of crazy emotions.”

Some firefighters, emergency medical providers, law enforcement officers and others say the scale, tragedy and sometimes gruesomeness of their experiences haunt them, leading to profound sadness and depression, job burnout, substance abuse, relationship problems and even suicide. (Heidi de Marco/KHN)

In the end, he was successful — his home survived — and he went back to work, responding just months later to mudslides from the denuded, rain-soaked hills.

But Globerman struggled emotionally, and, as experts say is often the case among first responders, it affected his family life.

“My kids would do something silly that would otherwise make me laugh, but instead I would start crying,” he said.

He experienced several episodes in which he felt as if he was having a heart attack. “It would come out of nowhere,” Globerman said. “I felt like I was losing my mind.”

He thinks now that his own near disaster unleashed “demons” he didn’t even know he had from incidents throughout his career. And he felt he couldn’t ask for help.

“A lot of the support you’d get from a normal incident wasn’t there,” he said. “Other than a few people, everybody worked on the fire for about a month straight.”

He struggled through it on his own. Anxiety medication seemed to help. He said he’s not proud of having used it, but “after five months, I can honestly say that the demons don’t seem to bother me anymore.”

Mullan, the Las Vegas nurse who did not seek counseling, said she is not sure she has “processed” the mass shooting almost a year later.

“Certain things trigger emotions that I didn’t expect,” Mullan said.

At a recent luncheon she attended, victims from the shooting shared their stories.

“It hit me like a ton of bricks,” Mullan said. “And, yes, I did cry.”


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.