The Benioff Children’s Hospital at the University of California, San Francisco is a sleek new building with state-of-the-art facilities — a place where the sickest children go for leading-edge treatments.

Which is why it might be surprising to find Robyn Adcock, who practices acupuncture and acupressure walking the halls.

Though Adcock practices ancient arts of traditional Chinese medicine, she is an integral part of the hospital’s integrative pediatric pain and palliative care — or IP3 — team. It’s sort of an emergency response team for pain that combines traditional pharmaceutical pain care with other techniques to ease the suffering of the sick children who populate the rooms here.

The interdisciplinary team includes anesthesiologists and nurses, as you might expect. There’s also a clinical psychologist, a massage therapist and someone who practices hypnosis — as well as Adcock, who treats patients with both acupuncture and acupressure.

“We see cases in the hospital that are end-of-life or very chronic serious illness, or extreme pain cases — where their primary team maybe wants more support and managing the pain piece,” Adcock says.

On the day I visit, she’s headed to intensive care unit to see an 11-year-old boy named Miller. He is suffering with a severe neurological disorder called deafness dystonia syndrome, an exceedingly rare genetic condition that impairs his hearing and causes his muscles to contract uncontrollably.

The condition hits children at puberty, and it hit Miller hard earlier this year.

“We started to see some mild cognitive changes in the summer and fall,” says Jessica Greenfield, Miller’s mother. “And then, in January, we started to see significant dystonic movements.”

Today, she says, her son is in a painful and life-threatening state known as status dystonicus — which means all of his muscles are contracting at once.

“So, in the last the last 48 hours we’ve seen a significant ramp up in his symptoms,” Greenfield tells Adcock, as they stand over the bed where Miller lies, heavily sedated.

The medications her child is on are barely keeping his symptoms under control, Greenfield says, and he can’t tolerate any more painkillers. She tells Adcock that the acupressure techniques Adcock taught them a few days earlier have been helpful.

“It’s not that it stops it,” Greenfield says, “but it gives us these periods in there of interruption where we have something to offer him in between all of this medication that he’s getting.”

Adcock says she’s going to try some additional pressure points, and she leans over to greet the boy, who is almost unconscious.

“Hi, Miller,” she whispers. “I’m going to feel your pulses, and then we’re going to do some acupressure again today with you.”

Adcock quietly reaches for Miller’s wrists, then his legs and feet. She works silently for several minutes as Jessica and her husband John Greenfield look on, clutching paper coffee cups, their eyes clouded with sadness and exhaustion.

After working with Miller for about 15 minutes, Adcock beckons Jessica to the bedside to go over the pressure points they’ve already used and to show her some new points that she’s marked with tiny radish seeds.

“So if you feel this side of the tibia … your four fingers will help you” Adcock says, gently guiding Greenfield’s hand. “You’ll feel a soft, deeper spot. And you can let your intuition find it as well.

“If you’re open and listening with your hands, you’ll be able to find the point,” she says quietly. “And you’re on it. Perfect.”

Jessica Greenfield says she knows the treatments help Miller, because he often asks her to touch his pressure points between Adcock’s visits.

Studies estimate that 20 percent of children worldwide have chronic pain. That could range from frequent stomachaches to debilitating pain from cancer.

And the majority of those children will grow into adults who also are in chronic pain, says Christine Chambers, the Canada research chair in children’s pain at the Centre for Pediatric Pain Research at Dalhousie University in Nova Scotia.

So, at a time when addiction to opioid painkillers is a crisis, finding alternative ways to manage pain and provide comfort is crucial, she says. Because not all pain can be taken away.

Chambers says research shows most children, even in hospitals, don’t get adequate pain care. And sometimes, doctors just can’t eliminate the pain.

“Every clinician who works with a child in pain hopes that we will be able to take away all the pain,” Chambers says. “That isn’t always possible.”

So this interdisciplinary approach, she says, helps kids manage their pain, ease it and live with it.

Research backs up many of the techniques, Chambers says, including physical therapy, hypnosis and even distraction.

“There’s a super strong evidence base in favor of distraction,” she says.

That’s where art and music therapy come in, because these can take kids’ minds off their pain.

Unfortunately, Chambers says, this type of pain care is rare, especially for children.

“Most children won’t be able to access these,” Chambers says. “There are specialized centers that offer these interdisciplinary treatment programs but there are not nearly enough of them.”

The team in San Francisco is one of only a handful across the U.S. And that’s particularly unfortunate, she says, because most children who suffer chronic pain will bring that into adulthood.

Tackling pain from many sides is crucial because different techniques target different kinds of pain, says Dr. Stephen Wilson, the Chief Medical Officer at UCSF Benioff who founded the IP3 team a decade ago and who has been building on it ever since.

Chemotherapy, for example, can cause many kinds of pain and discomfort in a child with cancer.

“They’re likely to have pain in their mouth and in their abdomen from the effects of the chemotherapy,” he says. “They’re likely to have pain in their hands and feet because the chemotherapy agents temporarily can affect nerves and give them what we call neuropathic pain.”

And then there’s the fear and sadness, which Wilson calls “existential pain.”

“It’s not the kind of pain that responds to pain medication, but it’s very real,” he says. “They’re suffering for sure.”

Wilson says the team still relies on traditional painkillers, including opioids, to help the children. But, he says, acupuncture may be more effective against nausea than a medication. And a massage therapist can ease muscle aches; a psychologist can help with the existential fear; and art or music therapy can distract children from their pain.

Together these interventions can make the experience of illness less awful.

“A lot of times, just walking in the room, you can sense that the child and their family are doing better with a terrible situation,” Wilson says. “The situation is still terrible, so I don’t want to paint a rosy picture that somehow everything is wonderful, but it makes a huge difference.”

Jessica Greenfield says the acupressure does just that for Miller and the whole family.

“There’s only so much medication he can have, and certainly only so much medication we would give him in a home setting,” she says. “So it allows us a means of providing comfort for him — which is really important for us as parents and for him as a patient.”

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The children’s lawyer was incensed. Her two tiny clients — one of them blind — had been in a shelter for three months, separated from their mother.

The family had traveled from Mexico to the United States, reaching Nogales, Arizona, on March 1, 2018. Officials at the border found that the mother, Nadia Pulido, had “credible” reasons for seeking asylum from an ex-partner who, she says, beat her and stalked her after their relationship ended.

But U.S. Customs and Border Protection still sent Pulido into an adult detention center run by U.S. Immigration and Customs Enforcement. She had an hour to say goodbye and try to assure her blind daughter, 6, and sobbing 3-year-old son that she’d see them in a couple of hours.

“A couple of hours turned into months. Painful months,” Pulido recalled in an interview.

To help the children, pro bono attorney Maite Garcia turned to the U.S. Department of Homeland Security’s Office for Civil Rights and Civil Liberties. She filed a complaint with the office on June 7 of last year, explaining that Pulido’s daughter was “completely blind and requires assistance for daily living” and would be better off with her stepfather, a U.S. citizen.

Nearly two weeks went by before the civil rights office replied.

“The issues you raise are very important to us,” CRCL finally said in its emailed response. Then came a disclaimer: “Please be advised that our complaint process does not provide individuals with legal rights or remedies. … Instead, we use complaints like yours to find and address problems in DHS policy and its implementation.”

That was the last Garcia heard from the nearly 100-person office in Washington, D.C.

The tepid response from the department’s civil rights office bolsters objections — not least from former staff — that the DHS watchdog is failing to stop rights abuses as they’re happening inside a detention system that’s expanding rapidly under the Trump administration.

The ineffectual handling of individual complaints adds to criticism that DHS leaders no longer heed recommendations from the agency’s own civil rights experts.

“Put yourself in the shoes of the person who’s sitting in the cell or who’s separated from their parent or who’s wondering where their child is,” former CRCL staff attorney and adviser Ellen Gallagher said.

A recent whistleblower, Gallagher has accused the civil rights office of failing to investigate multiple individual complaints alleging unjustified solitary confinement of detainees in ICE custody. Gallagher is now with DHS’ Office of Inspector General, a separate internal watchdog specializing in issuing reports after lengthy investigations.

“It seems to mislead the public, to invite complaints involving specific information about the individual or the family and the alleged violation, if Civil Rights and Civil Liberties had no intention of specifically investigating or resolving those individual complaints,” Gallagher said.

Acting Homeland Security Secretary Kevin McAleenan has insisted that DHS has “layers of oversight” to correct abuses. “We have good supervisory oversight, and we hold people accountable,” he said during a July 9 interview on CNN in response to questions about filthy conditions in CBP holding facilities.

Gallagher’s impression, however, is that the civil rights office “was actually fairly intimidated by ICE and CBP and did not want to engage in activity that might offend either. That is an odd and even disturbing posture for an oversight authority.”

Internal CRCL log: a flood of complaints

Some CRCL staff members say that individual employees contact CBP or ICE to try to informally resolve civil rights complaints. But they can only advise agencies, they say, because their office isn’t set up to halt abuses as they happen.

Cameron Quinn, chief of the civil rights office and an appointee of President Trump, declined a request for an interview. Another CRCL official responded in writing to questions, asking not to be quoted by name.

“CRCL does not have authority to remedy individual complaints but instead focuses on systemic issues” at DHS, the official wrote. The office does have authority, however, to seek “remedies” for people facing disability discrimination, the official said, declining to elaborate.

“With regard to family separations,” the official said, “CRCL investigated the issue from a policy and process standpoint.” The civil rights office then sent its recommendations to ICE and Customs and Border Protection in a memo. CRCL declined to release the memo, calling it a “deliberative” document.

CRCL, the official added, still has “open investigations” into the separations of children under age 5, the separations of children with disabilities and standards for separating families based on parental criminal history.

The Office for Civil Rights and Civil Liberties was created along with the Department of Homeland Security in 2002. The office’s mission is to advise the powerful federal department and prevent civil rights violations such as the post-Sept. 11 roundups of Muslims without due process. But some insiders say CRCL has always lacked teeth.

Last year, the civil rights office proved especially weak as complaints about due process concerns and family separations began pouring in — nearly 850 in the first half of 2018 alone, logged into a CRCL database. An independent journalist obtained a copy through a Freedom of Information Act request and then shared it with the Center for Public Integrity and NPR.

The complaints referenced more than 380 separated children 10 years old or younger, of which more than 120 children were age 5 or younger.

More than 140 complaints arrived before the Trump administration announced its “zero tolerance” policy on April 6, 2018. More than 160 cases of separation referenced in the log were carried out before that date. The zero-tolerance policy required separating families so that CBP could hold all adults for prosecution, even for a first-time misdemeanor illegal entry.

Former and current staff in the civil rights office say their colleagues were so upset by allegations in the complaints that they openly wept at desks as they reviewed the cases.

By May of last year, senior staff in the office had urged Quinn, in an internal memo, to challenge the separations. “CRCL should express great concern over our exclusion from these critical decisions,” which CRCL has the authority to review, the memo said. “Deliberately harming children to deter parental behavior would require an exceedingly strong justification to pass muster as a reasonable seizure under the Fourth Amendment, among other concerns.”

Lawyer and former CRCL senior adviser Scott Shuchart, who resigned from the office last year, said his and other advisers’ concerns were “blown off” by CBP and other DHS leadership in meetings.

One complaint to CRCL in January 2018 reported that CBP separated a 4-month-old infant from a Mexican father who had prior immigration violations but feared being sent back to Mexico.

Another reported that an 8-year-old said CBP officers “kicked him and/or hit him with a shoe” to wake him. Dozens of other complaints described children upset about their parents’ uncertain whereabouts and abrupt disappearance — including a 14-year-old in CBP custody who said he was separated after a meal break and was then “told by officers that his father would be deported.”

About 95% of all complaints logged came from the federal Office of Refugee Resettlement, a unit within the U.S. Department of Health and Human Services that’s responsible for migrant-children shelters.

Former senior staff in this federal resettlement office say the volume of complaints is unprecedented. Robert Carey, ORR director during the final two years of Barack Obama’s presidency, said he thinks ORR employees were trying to stop separations by filing complaints.

“You probably have a deeply traumatized, possibly hysterical child that you’re trying to care for,” Carey said. “I’m guessing some of those cases would require … the intervention of a therapist, particularly if you’re talking about, in some instances, young children.”

HHS officials declined to make leaders in its Office of Refugee Resettlement available for an interview.

Most other complaints came from nonprofit legal aid groups — including 18 filed by the Phoenix-based Florence Immigrant and Refugee Rights Project, where Maite Garcia works.

The complaint about Pulido’s blind daughter and toddler son appears on page 276 of CRCL’s 366-page document.

Another Florence complaint filed on June 14 of last year appears on page 321. It raises objections to CBP’s separation of a Guatemalan mother from her 17-year-old son — who is unable to hear or speak — without regard for his disability. The boy could have qualified to be “paroled” into the U.S., a conditional form of humanitarian release. But that never happened — and the case shows how a formal complaint can wither in the Department of Homeland Security’s Office for Civil Rights and Civil Liberties.

Deaf boy’s mom taken away

The story of the mother and her deaf son “exhibits the cruelty, the chaos” of how migrants are treated, said Elizabeth Jordan, an attorney with Denver’s Civil Rights Education and Enforcement Center. She represented the mother while the woman was in ICE lockup in Colorado.

On April 25 of last year, the mother and her 17-year-old deaf son approached CBP officers after crossing the Arizona border and asked to apply for asylum.

The boy and his mother now live in Florida, where they are in the process of applying for asylum. In an interview, the mother, who asked that her name not be disclosed, said she’d worked previously in the state, sending money to Guatemala to rent a room for her son and pay his tuition at a school for the deaf there. She eventually returned to Guatemala to care for her son and her own frail mother.

Three months after she got there, her mother died, and her deaf son lost his primary caregiver. He’d long been bullied in Guatemala, and thieves had robbed him at gunpoint. Mother and son both set out for the United States some months later.

“I don’t do this for me. I do it for him,” she said, “because I’m not going to be alive for all of his life.”

After Customs and Border Protection took her and her son into custody near San Luis, Ariz., the mother said, officers ignored her pleas to keep them together rather than place them in cages segregated by age and gender. Her son, she told the officers, needed her to interpret. When she protested further that her son was mute, she said an officer answered, “He won’t need to do much talking where he’s going.”

At some point, while her son was asleep, guards took her out of her cage, the mother said, and transported her to an ICE detention center pending prosecution. She said she was told “you have to pay for what you did” because she’d been turned away at the border the year before. She was sentenced to 30 days in an Arizona jail for reentry and then transferred to an ICE detention center in Colorado, pending deportation.

Meanwhile, U.S. Customs and Border Protection had sent her son on a long bus ride to an Office of Refugee Resettlement shelter in Arizona, where his only means of communication was drawing pictures.

For more than a month, the mother pleaded in vain with detention guards, first in Arizona and then in Colorado, to arrange a video call so she could at least see and sign with her son. Medical records from the boy’s time in the shelter indicate he was distraught: He struck his head against walls and cut himself with a paper clip. In an interview in Florida, interpreted by his mother, he said that to prevent him from getting out of bed one night, he was physically restrained.

“She was profoundly distressed and so worried about him,” lawyer Jordan said of the mother. “This is a person who has devoted her life to keeping him safe and getting the best she can for him. And then, for her to be totally unable to check in on him for weeks …”

A round of emails between the boy’s attorneys and DHS’ civil rights office ultimately went nowhere.

Initially, a CRCL adviser seemed to be working on the Florence project’s June 2018 complaint, arguing that the deaf boy merited humanitarian parole and that for two months the shelter hadn’t “provided him with the appropriate accommodations” for his disability. The adviser wrote that the civil rights office was “reviewing your concerns”; he asked for proof the boy was deaf.

In July 2018, one of the boy’s lawyers emailed CRCL to write that when CBP held the boy in custody, he “was able to understand that the agents were mocking him” because they didn’t believe he was deaf.

The lawyer further argued that CBP, ICE and the Office of Refugee Resettlement, the federal agency in charge of shelters, were all in violation of disability rights because they had failed to arrange a video call between the boy and his mother.

The official from the civil rights office then replied that he was “unable to look into [the boy’s] ongoing concerns” because the teenager had been transferred by CPB, which is within DHS’ jurisdiction, to ORR, which is not.

Instead, he suggested, the civil rights office could investigate the mother’s concerns because she was in ICE custody, which, like CBP and CRCL, falls under DHS. The boy’s attorneys gave the civil rights official contact information for Jordan, the mother’s Colorado lawyer.

By that time, Jordan had already been emailing local ICE officials repeated pleas to set up a video call. The call finally happened — nearly three months after U.S. Customs and Border Protection officers had separated the mother and her son. But it wasn’t because of action by DHS’ civil rights office, Jordan said. It was because DHS was by then under court order to put separated migrant family members in touch with one another by phone and then reunite them.

“In my interactions with individual CRCL officers,” Jordan said, “I don’t get the sense that they’re out to lunch or bad people. I think that they just ultimately can’t get much done. I think it comes from being really hamstrung by the fact that they have to work with ICE and get ICE to concur in their recommendations and actually make changes.”

In the children’s interest

Although Trump ended his zero-tolerance policy in June 2018 after a public outcry, U.S. border agents have continued to separate families due to parents’ criminal records, even for minor offenses, or because of prior deportations.

Immigrant rights groups have long pressed DHS to consider the children’s interests, and they’ve noted that family separation “causes great harm, disrupting emotional and psychological well-being.”

For failed asylum-seeker Nadia Pulido, the groups’ pressure came too late.

Pulido was born in Mexico but is a fluent English-speaker who arrived in California as an undocumented child and was raised by relatives. She could have qualified for a special visa for abandoned children, but no one sought such a visa on her behalf. When she was “literally just young, stupid and hanging around the wrong crowd,” she said, she was convicted of robbery and deported.

Because of that history, U.S. Customs and Border Protection and ICE chose to send her children to a shelter and keep her in detention last year while her asylum case went forward.

ICE could have released her on humanitarian parole. Instead, she was held in detention for eight months, until she lost her asylum bid. She could have appealed, but that would have meant more detention — and more time apart from her young children. In the end, Pulido agreed to be deported to Mexico.

After four months in a shelter, Pulido’s blind daughter and toddler son were finally released to her husband, a U.S. citizen. Attorneys for the children and Pulido believe a federal lawsuit that led to a court order unifying migrant families was likely a factor. And they doubt their complaint to DHS’ civil rights office did anything to hasten the children’s release.

In Mexico, where the kids have now joined her, Pulido said she’s still scared. To support her need for refuge, she presented Mexican police reports about incidents involving her ex-partner; and in her asylum application, she wrote that he assaulted her while she was pregnant and held a gun to her head.

“We were leaving Mexico to seek help in the United States,” she said, “to stay free of danger.”

Susan Ferriss is a reporter with the Center for Public Integrity, a nonprofit investigative newsroom in Washington, D.C. Alison Kodjak reported this story for NPR, and independent journalist Joshua Phillips did so for the Center for Public Integrity. Journalists Madeline Buiano and Pratheek Rebala also contributed to this story.

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