From morning to night, 8-year-old Jannet needs her mother, Zenaida Bautista, to give her care and attention. Bautista constantly works with her — taking her on walks, massaging her legs and prompting her to do exercises with her right hand, which is weaker than her left.
When Jannet was younger, she would only grab her bottle with her left hand, one of the first signs her parents would come to understand as symptoms of cerebral palsy.
“The doctors said she might not walk…from that moment, life changed,” said Bautista, who lives in Montgomery County.
Everyday care and attention from her mother, as well as treatment at the Children’s Hospital of Philadelphia, has helped Jannet develop the ability to walk. Still, she does so with difficulty and struggles with the basics compared with children her age.
Now, a policy shift within the Trump administration has thrown the family into limbo.
A decision by the federal government to stop granting medical deferred action requests — a way immigrants needing medical attention for themselves or their children have been able to forgo deportation — has raised the possibility that Bautista could be removed from the U.S.
Bautista’s deferred action, granted on the basis of her daughter’s severe illness, expired this month. The agency that used to issue this kind of protection, U.S. Immigration and Citizenship Services (USCIS), stopped accepting applications in August without warning.
Bautista’s husband, Jose Cabañas, runs a landscaping business to support the family, which includes three other children, ages 2 to 17. He has a green card and all of their children are U.S. citizens. Bautista, who crossed the U.S. border illegally in 2000, is the only family member without status.
Losing deferred action, said Bautista, “gives me a lot to think about.”
The family sees two options if Bautista is deported. Jannet continues to receive high quality medical care while her father figures out how to balance work with being a single parent. Or Jannet returns with her mother to her small town in Puebla, Mexico, which would halt her treatment and potentially reverse all of her progress.
Getting the same level of care there “is not possible,” said Bautista.
‘Care they needed to live’
Ending medical deferred action was not formally announced. Instead, applicants began receiving letters in August, saying “U.S. Citizenship and Immigration Services field offices no longer consider deferred action requests” except for those from certain members of the military and their families.
USCIS told recipients they had 33 days to leave the country or they would be put in deportation proceedings. The letters also said, going forward, all such matters will be handled by U.S. Immigration and Customs Enforcement, the agency in charge of carrying out deportations.
Recipients of the letters included parents of extremely sick children born in the U.S. and children receiving treatment for cancer, some of whom are currently at St. Christopher’s Hospital for Children in North Philadelphia.
Earlier this month, civil rights groups sued the agency on behalf of 33 people — some, children with life-threatening illnesses who are impacted by the policy change.
“I had many conversations with hysterical parents who were beside themselves that their child was not going to have access to the care they needed to live,” said Immigration attorney Audrey Allen, who represents the families at St. Christopher’s pro bono through referrals from the Legal Clinic for the Disabled.
In requests for deferred action, applicants have to show they cannot receive adequate care in their home countries.
After sending the rejection letters, USCIS reversed course slightly, saying it would consider all applications it had received by August 7, 2019.
That has left other people, whose deferred action runs out after that date, wondering how to proceed.
Advocates are now especially wary of the fact that the Trump administration is calling for these matters to be decided by ICE.
“The Immigration and Customs Enforcement folks are measured by how many people they deport,” said William Stock, the former president of the American Immigration Lawyers Association. Sending sensitive information to that agency changes the stakes of applying — and getting denied — for deferred action, he continued.
Then, there are the practical concerns.
“Is there a form? Does it have to be faxed? Should it be accompanied by evidence? Of what kind should that evidence be?…I don’t think there’s been any formal or informal guidance given.” said Stock.
Government agencies have also struggled to answer those questions.
A request for comment submitted to the Philadelphia ICE field office referred Keystone Crossroads to USCIS. The Philadelphia USCIS field office said it could not comment, due to pending litigation.
At a hearing of the U.S. House of Representatives Oversight and Reform Committee, former ICE director Tom Homan said he wanted to clear up a “misunderstanding” of medical deferred action. It was never an official program, he said, merely a form of discretion given out on a case-by-case basis.
“It is not lawful to have a deferred action ‘program’,” he said.
Homan also defended ICE’s ability to weigh humanitarian cases fairly.
“I have approved many stays of removal for medical reasons myself. ICE doesn’t put their heart on a shelf because they pick up a badge and gun. It’s ridiculous,” he said.
‘To be well’
Even for families who are currently covered by deferred action, the new changes create uncertainty.
Wernel Reyes, 40, and his three-year-old daughter Alaia both received deferred action in July, which will shield them from deportation for two years. Alaia was born with Downs Syndrome, and has two types of blood cancer: Myelodysplastic Syndrome (MDS), Acute Myeloid Leukaemia (AML). Both are potentially life-threatening and require aggressive interventions.
In 2018, they flew to the U.S. from the Dominican Republic on visitors visas, so Alaia could begin treatment at St. Christopher’s for which they are paying out of pocket.
“In Santo Domingo, the pediatrician said that they couldn’t do any more for her,” said Reyes, who worked in real estate in his country.Now, Alaia stays at the hospital in Philadelphia for months at a time without leaving, her father by her side.
Even though they received deferred action right before it ended, Reyes said he now wonders if their situation could change suddenly, too.
“I’m afraid for my daughter,” he said. “If they say you can stay until her treatment is over, then you will return to your country, I would say that’s fine, no problem. I just want my daughter to be healthy, to be well.”