From Medicine and Health

Having 5 Or More Babies Increases Women’s Chance Of Being Diagnosed With Alzheimer’s By 70 Percent

The study also found that women who had experienced one or two incomplete pregnancies were much less likely to develop Alzheimer’s than women who had never been pregnant. In other public health news: study backs up assumptions that children of lesbians have no difference in adulthood than others; CDC warns about another food-related illness; heart failure is on the decline but still more likely to strike women; and more.

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.

From Crib To Court: Trump Administration Summons Immigrant Infants

The Trump administration has summoned at least 70 infants to immigration court for their own deportation proceedings since Oct. 1, according to Justice Department data provided to Kaiser Health News.

These are children who need frequent touching and bonding with a parent and naps every few hours, and some were of breastfeeding age, medical experts say. They’re unable to speak and still learning when it’s day versus night.

“For babies, the basics are really important. It’s the holding, the proper feeding, proper nurturing,” said Shadi Houshyar, who directs early childhood and child welfare initiatives at advocacy group Families USA.

The number of infants under age 1 involved has been rising — up threefold from 24 infants in the fiscal year that ended last Sept. 30, and 46 infants the year before.

The Justice Department data show that a total of 1,500 “unaccompanied” children, from newborns to age 3, have been called in to immigration court since Oct. 1, 2015.

Roughly three-fourths of the children involved are represented by a lawyer and they have to make their case that they should stay in the United States.

Officials who review such deportation cases say most children under 1 cross the border with a parent and their deportation cases proceed together.

But some of the infants were deemed “unaccompanied” only after law enforcement separated them from their parents during the Trump administration’s “zero-tolerance” immigration policy. The children were sent to facilities across the U.S. under the supervision of the Department of Health and Human Services.

“This is to some extent a … crisis of the creation of the government,” said Robert Carey, who previously headed the Office of Refugee Resettlement, which takes custody of unaccompanied minors. “It’s a tragic and ironic turn of events.”

Younger children are also considered unaccompanied if they enter the U.S. with an older family member who is not yet 18. The data do not clarify which children arrived that way or which were separated from their parents.

The Justice Department did not respond to a request for further data about where the children are housed. They could be in a foster care home, at a group home, with a relative or sponsor or reunited with a parent. HHS, which operates the refugee resettlement office, did not provide comment by publication  time.

In previous statements, the government has argued that separation — and its consequences — are unfortunate but unavoidable under the law.

“There is a surefire way to avoid separation from your children. Present yourself legally … or stay back at your home country, and go through the process others do,” HHS Secretary Alex Azar said on a media call earlier this month. “None of us want children separated from their parents. I want no children in our care and custody.”

The number of unaccompanied children called in to court since Oct. 1, 2015, swells to 2,900 if kids up to 5 are included. The total will rise between now and Sept. 30, when the fiscal year ends, noted Susan Long, a statistician at Syracuse University and director of TRAC, a repository of immigration and federal court data. There’s also an ongoing backlog in entering the data.

In June, a district judge in San Diego ordered the government to reunify families within a month, specifically directing them to unite children younger than 5 with parents by July 10.

HHS reunited about half of those children by July 12 — 57 out of 103. Others, the government said, could not be placed with a parent, citing in some cases “serious criminal history” or parents currently being in jail.

In 12 cases, those children’s parents had already been deported. In another, the government had failed to figure out where the child’s parent was located, and in another, the parent had a “communicable disease,” HHS said.

The Department of Homeland Security, which issues the court orders, also did not respond to a request for comment.

In the removal cases, children have no right to an appointed lawyer, but rather to a list of legal aid attorneys that the child’s current caregiver can contact.

And young children rarely know the details of why they fled their home country, especially without a parent present, noted Eileen Blessinger, a Virginia-based immigration lawyer who has been aiding parents.

“Think about it as a parent. You’re not going to tell your child they might be killed, right?” she said. “A lot of the kids don’t know.”

Immigration court, which is an administrative unit of the Department of Justice, is different from typical courts. It handles “respondents” who may be too young to speak, but has no social workers or legal remedies focused on the best interest of a child, said Lenni Benson, a New York Law School professor and founder of the Safe Passage  Project, which provides legal services to migrant youth.

“An immigration judge has no discretion,” Benson said. “There’s no ‘I’m hearing the mom wants the kid, I’m going to decide what’s best,’” she said. Instead, “it’s ‘the government has charged you with being removable from the U.S. Do you have evidence to show you have a right to be here?’”

Benson recounted being in immigration court in 2014 when a judge asked for a crying baby to be removed from the courtroom. She said she paused to inform the judge that the baby was the next respondent on the docket — and asked that the child’s grandmother stand in.

The stakes for the babies, and any migrant fleeing violence, are high, said Paul Wickham Schmidt, a former immigration judge who retired in 2016 after 13 years on the bench in Arlington, Va.

“Final orders of deportation have consequences,” he said. “For something that has a very serious result, this system has been described as death penalty cases in traffic court.”

Ashley Tabaddor, president of the National Association of Immigration Judges and a judge specializing in juvenile cases in Los Angeles, acknowledged that the administration narrowed a directive on how much judges can assist juveniles in court. Still, she said, judges do their best to ensure that young children get a fair hearing.

Justice Department data show that asylum denials are at a nearly 10-year high at 42 percent, and the Associated Press reported that the administration has raised the bar for making a successful case.

At the same time, children can be strapped for resources, Blessinger said.

She described one client whose 7-year-old daughter received legal support from a New York-based charity. Even in that case, she said, the organization acted simply as a “friend of the court” — rather than a full-fledged attorney — requesting delays in proceedings until the child and mother could be reunited. That finally happened Tuesday night, she said.

“It’s the saddest experience. These people are not going to be recovering anytime soon,” she said. “The parents are crying even after they’re reunited.”


KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.