Disabled Man Dies After ICE Detains His Primary Caregiver
Plus: Autistic children in Minneapolis are especially vulnerable during the crackdown; Florida's waitlist for Medicaid services is years long, yet they sit on millions in unspent funds
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From CNN: “A Texas man detained by ICE was his disabled son’s sole caregiver. His son will be laid to rest without him”
Maher [Tarabishi], Wael’s primary caretaker, has been in federal detainment since October, separating him from his son as he battled severe health complications from a serious and rare inherited disorder.
But despite the family’s public pleas for Maher’s temporary release, Immigration and Customs Enforcement officials denied their request, his attorney said.
Now the family is preparing to bury 30-year-old Wael without Maher. The son spent his life [with] Pompe disease, which leads to severe muscle weakness and heart problems.
[…]ICE’s decision came three months after Maher was detained during a routine immigration check-in in Dallas. Since then, his family has held a news conference and publicly pleaded for federal immigration officials to temporarily release him from the Bluebonnet Detention Facility in Anson, Texas.
At first, they hoped Maher could be released to provide the 24-hour specialized care for Wael that only he was trained to do. But in Wael’s last days, they were holding hope Maher could at least say goodbye to his son in person.
[…]Shahd Arnaout, Wael’s sister-in-law, told CNN the family struggled to care for Wael with his father in ICE custody.
Maher was the one who bathed Wael, changed his clothing, and helped administer food and medication through a tube, Arnaout said.
“He was the one who knew, when his fever went up, what to give him right away,” Arnaout told CNN. “We had to ask multiple doctors to come and see what (medicines) to give Wael because Maher was not there to react quickly.”
At a December news conference, a statement from Wael was read aloud in which he described the relationship with his father.
“He’s the one who keeps me alive when I’m at my weakest,” Wael said in the statement, CNN affiliate WFAA reported. “Without him, I am nothing. Without him, I cannot survive.”
[…]He was rushed to the hospital twice: once in November with sepsis and pneumonia, and again in December with a stomach infection caused by a displaced feeding tube, his family said in a statement. He remained in the ICU at Methodist Mansfield Medical Center in a suburb of the Dallas-Ft. Worth metro area for the next month, the family said. He died on January 23.
[…]In the hours before he died, Wael’s wish was to see his father again. On the day he passed away, [Maher’s attorney Ali] Elhorr went to meet with an ICE official to ask if Maher could come to the hospital to see his son, the family said in a statement. That request was denied, they said.
[…]Maher arrived to the United States in 1994 from Kuwait, where he was living at the time, on a tourist visa as he fled violence, Arnaout said. Several family members were already living in the United States, she said. Maher’s native country is Jordan.
[…Tricia] McLaughlin, the DHS spokesperson, said in a statement to CNN Maher had been allowed to remain in the US illegally for nearly 20 years despite being ordered by an immigration judge and the Board of Immigration Appeals to leave.
An immigration court ordered Maher’s removal in 2006, but he was allowed to stay in the US because he was his son’s caretaker and was required to attend annual check-ins with ICE, Elhorr said.
[…]In her statement, McLaughlin referred to Maher as a “self-admitted member” of the Palestine Liberation Organization,[….] Arnaout said the family denies Maher was a part of the Palestine Liberation Organization.
Maher has always followed the proper guidelines to stay in the US and showed up to every required check-in with immigration authorities, Arnaout said. […]
• From The 74 via The 19th: “Children with disabilities particularly vulnerable to Minneapolis ICE crackdown”
[…]Idil Ahmed, who lives near the epicenter of the daily raids and protests, worries about her 6-year-old autistic daughter having a meltdown during an encounter with Immigration and Customs Enforcement agents.
“If they stop us, all hell will break loose with my child,” Ahmed said. “And there is no talking to these people.”
Parents tell The 74 they have no faith, after federal agents ripped a disabled, autistic woman from her car and, according to school officials, used a 5-year-old as bait this week to lure his mother from their home, that immigration officials would be patient with a child who can’t immediately respond to orders.
[…]They and other families with special needs kids have missed school, skipped doctor’s visits and, in many cases, are not getting the occupational, physical and speech therapy services that help their children manage their lives and progress academically.
Ahmed said her daughter missed three consecutive weeks of occupational therapy because her therapist was too fearful to enter their neighborhood.
[…]And while multiple districts are offering remote learning to families afraid to leave their homes, online instruction isn’t a viable option for children who need a team of skilled school staff to access their education.
“It’s not a solution for us,” said Anisa Hagi-Mohamed, founder of an autism advocacy group called Maangaar Voices.
[…]A spokesman for the Department of Homeland Security, which oversees ICE and CBP, said he was working on a response as to whether agents are trained to interact with autistic children and others with disabilities. Minnesota law requires autism training for peace officers but this does not apply to ICE and CBP, Minneapolis advocates say.[…]
• From Fox 13 News: “Unspent millions, forgotten children: Inside Florida’s disability care crisis”
When [Tampa mom] Yasmina [Halim] quit her job to care for Lily full-time and applied for home health services the state provides to families like hers, Florida placed the terminally ill child on a waitlist.
“It’s like my child doesn’t matter,” Yasmina says. “She’s just a number.”
The average wait? Eight and a half years.
Lily isn’t alone. More than 21,000 Floridians with severe developmental disabilities are stuck on the state’s waitlist for home-based care—some for more than a decade.
[…]Over the past four years, APD returned more money to the legislature than it received for reducing the waitlist—roughly $8 million more. Currently, the agency sits on approximately $360 million in unspent state funds. Had APD used that money as intended, it would have triggered more than $520 million in federal matching funds.
[…]Lawmakers required APD to approve or deny crisis applications within 15 days. Families report it still takes months. The legislature mandated an online application to speed things up. However, the online form doesn’t include an option for crisis claims—sending families back to pen and paper.
[…]Lawmakers created a program allowing parents on Medicaid to get trained and paid as caregivers for their disabled children. For families like the Olives, it could provide financial relief—except the program pays just enough to disqualify them from Medicaid.
[…]After three years of waiting, Yasmina decided to institutionalize Lily so she could return to work and pay the bills.
“I just could never imagine that I’d have to put my child in an institution just so I could get a job,” she says. “I could never imagine how I could sleep at night without my child next to me.”
However, because of the provider shortage and the complexity of Lily’s disease, no institution would accept her. The state then granted crisis status and approved home-based care—the less expensive option.[…]
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Good newsletter. I was interviewed by Investigative and Political Reporter Craig Patrick at Fox 13 for his 1st segment of the Home & Community Based Services Medicaid Waiver Waitlist story. My daughter was on the waiting list for 6 years and 8 months before a crisis with my husband's health and my health caused the agency that supervises the Waiver program to process my daughter's application. Then, it was another 4 months before we were matched with competent, professional, respectful nurses who could be trained to my daughter's specific care.