By Claudia Boyd-Barrett
Amid life’s everyday challenges and responsibilities, two worries weigh constantly on Jorge Zaleta’s mind.
The first is the health of his intellectually disabled son, Jorge Zaleta Jr., who at 15 years old needs around-the-clock supervision.
Second, Zaleta worries about his and his wife’s undocumented immigration status, which he fears could get them deported from the United States at any moment — leaving their son, who is an American citizen, to fend for himself.
“You’re always living under that uncertainty, that from one moment to the next, (while you’re) walking in the street or driving, you might get stopped,” said Zaleta, a Spanish speaker who immigrated to the United States 17 years ago and lives in Oakland. “We don’t have stability as a family to be able to give (our son) stability.”
Zaleta and his wife are among hundreds, if not thousands, of undocumented parents in California struggling to take care of U.S.-born children with special needs while at the same time living in fear of deportation. These parents face the same pressures any parent of a special needs child contends with: making sure their child gets the medical care, therapy, educational help and supervision they need, while balancing jobs and household responsibilities. But these families also grapple with the uncertainty of living in the shadows, and are barred from receiving the full range of government assistance that could help them care for their disabled children.
“If your papers are not in order there is always that incredible fear that your child, especially a child with so much need, would be left without you being able to care for them if you get deported,” said Rocio Smith, who helps organize an annual conference for Latino families with special needs children in Hayward. “That’s a huge thing for families, on top of everything else. You have a child who needs all sorts of equipment just to live, and then you’re afraid that some day you will not be able to come home to care for them.”
Barred from benefits
There are no easily available statistics on how many special needs children have undocumented parents. An estimated 13 percent of all kindergarten through 12th grade children in California have at least one undocumented parent, according to the Public Policy Institute of California. Given that just over 21,000 public school children in California were enrolled in special education programs last school year, 13 percent would translate into approximately 2,750 special needs children with an undocumented parent.
Like Jorge Zaleta Jr., many of these special needs children were born in the U.S. and qualify for the full range of benefits and services available to any citizen with a disability. California also extended full healthcare coverage through Medi-Cal to low-income children regardless of immigration status earlier this year, and that coverage includes medical services for children with disabilities.
But for the undocumented parents of these children, life is full of challenges. Often they can’t find stable employment, and the jobs they find don’t pay enough for them to adequately support a disabled child, advocates said.
Valesca Santos, who runs a Bay Area support group for Latino parents with special needs children, said she frequently comes across undocumented families living cramped into one room with barely enough space for their child’s equipment, such as a breathing machine or wheelchair.
Parents who are undocumented also cannot benefit from part of a government program called In-Home Supportive Services, which provides funding for some low-income parents to stay home and care for their special needs child. Undocumented parents, particularly those with severely disabled children, may need to stay home, but the lack of income from not working impoverishes their family, Santos said.
“If they could obtain that money, they could still look after their kids, but that income would allow them to have a better life,” she explained.
Seven-year wait for green card program
A beacon of hope for some undocumented families with special needs children is a little-known aspect of immigration law called “cancellation of removal and adjustment of status for certain nonpermanent residents.” The law allows some undocumented parents to go before a judge and argue that, if they were deported, their U.S. citizen child would face extreme hardship because of a serious disability. If successful in court, these parents can obtain legal residency.
At Congreso Familiar, the conference Smith helps organize for Latino families with special needs, the most popular workshop is about immigration law. The conference attracts about 1,000 family members annually and offers about 50 workshops on numerous aspects of caring for a child with disabilities. But immigration is always the biggest draw, prompting the conference to offer four workshops on the topic this year, Smith said.
San Francisco immigration attorney Nadeem Makada, a presenter at the conference, said he gets numerous calls each week from families desperate to apply for a cancellation of removal, but very few qualify. The applicant must have lived in the United States for at least 10 years, have paid taxes and not had criminal convictions, and have a U.S.-born child with a significant disability.
Only 4,000 green cards are granted a year for these kinds of cases, and there is a seven-year backlog, he said. More than 5,000 people are currently waiting for green cards under the program, he said, although those in process can obtain a temporary work visa.
“I think it’s a fantastic relief,” he said. “I just wish there were more visa numbers”
Makada said he charges families about $10,000, spread over seven years, to work on a cancellation of removal. That’s typical, said Santos, the support group organizer. She said she knows of some parents who have applied for cancellation of removal and been successful in obtaining a visa. But for most families, even if they would qualify, the cost alone makes that option impossible.
“If they don’t have money for food, how are they going to have $7,000 or 10,000 for that?” she said.
A family sacrifices
Zaleta, meanwhile, said he’s taken on more work at the screen-printing business where he works so that his wife can stay home and take care of their son. The couple made that decision a year ago after Jorge Jr. unexpectedly had a seizure while out at a Chuck E Cheese’s, Zaleta said. The couple realized the incident could have been deadly if their son were home alone.
Jorge Jr. has been diagnosed as intellectually disabled, Zaleta said, meaning the boy has trouble learning, communicating and taking care of himself. Although he’s a teenager, he has the intellectual capacity of a 7-year-old, his father said. The boy needs help getting to and from his bus to school, and must be constantly monitored around the house. While seizures aren’t a regular occurrence for him, they can happen when his brain is over-stimulated, doctors told the family.
Zaleta now works 10 to 12 hours a day, six days a week to support his wife and son, and also their non-disabled daughter. As a result, he said he barely sees Jorge Jr.
“We took a hit economically, but we realized that we needed to take care of him,” Zaleta said. “You have to sacrifice.”
This article was published on the California Health Report website on Nov. 7, 2016.