Administration Appears to Reverse Decision to Deport Critically Ill Children After Pressure from Oversight Committee

Following compelling testimony given September 11th at an emergency hearing of the House Committee on Oversight & Reform, including testimony from Isabel Bueso of Concord, CA, the Department of Homeland Security (DHS) has appeared to reverse their prior decision to eliminate deferred action for children with critical medical needs and their families. The Committee issued a press release after receiving a letter from DHS stating: “If today’s statement is accurate, it appears that the Trump Administration is reversing its inhumane and disastrous decision to deport critically ill children and their families who are receiving life-saving medical treatment in the United States…we will be taking additional steps to verify that these children and their families do not need to live in fear and uncertainty.”

Isabel Bueso and her family moved to California from Guatemala 16 years ago at the invitation of UC San Francisco; however, this August, they received a letter from U.S. Citizenship and Immigration Services (USCIS) stating that they must leave the country within 33 days or face deportation. If Isabel is forced to leave the country she would be separated from life-saving treatments received weekly as part of an ongoing clinical trial. This reversal will provide temporary relief to the nightmare for the Bueso family; however, Isabel plans to lobby Congress to find a long-term solution, stating in an interview with the New York Times that “We have to find a permanent solution so that families like mine don’t have to go through this again.”

Watch Isabel Bueso’s Testimony About Medically Deferred Action for Critically Ill Children

Isabel’s testimony begins at 53:00 in the video – and she is consistently asked questions throughout the hearing.

Isabel Bueso from Concord, CA, gives testimony to the U.S. House Oversight & Reform Committee about the importance of maintaining medical deferred action for medically fragile children and adults.

Isabel and her family moved to California from Guatemala 16 years ago at the invitation of UC San Francisco; however, this August, they received a letter from U.S. Citizenship and Immigration Services (USCIS) stating that they must leave the country within 33 days or face deportation. If Isabel is forced to leave the country she would be separated from life-saving treatments received weekly as part of an ongoing clinical trial.

Isabel’s mother, Karla Bueso, is a 2007 graduate of Partners In Policymaking, an advocacy training program for people with disabilities and parents of children with disabilities that was coordinated by The Arc of California.

Developments and Resources for the Public Charge Rule

September 9, 2019 – The Arc and seventeen other national disability advocacy groups filed an amicus brief in support of litigation to stop the U.S. Department of Homeland Security (DHS) from implementing its new “public charge” rule. The advocacy groups – representing tens of thousands of people with disabilities and their families across the country – claim that the new public charge rule will prevent people with disabilities from entering this country or becoming legal residents in violation of federal disability law.

Peter Berns, CEO of The Arc said, “This new policy is devastating to many people with intellectual and developmental disabilities and their families. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status. The rule will increase poverty, hurt public health, and worsen housing instability. It’s the latest callous tactic in restricting access to necessary services and supports. The Arc continues our work to ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally in the U.S., without unnecessary or discriminatory restrictions based on their disability.”

September 11, 2019 – The California Health and Human Services Agency responds to the rule by issuing an up to date public charge guide available here. This guide is a vital resource for those who think this rule may affect them and anyone working with people with disabilities and their families in the state of California.

The Arc of California Stands with Isabel Bueso and Denounces Deportation of Medically Fragile Residents

Isabel Bueso lives in Concord, CA, is 24 years old, a recent graduate with honors of Cal State East Bay, and has an extremely rare and potentially fatal genetic disease called MPS-6. Isabel and her family came to California when she was seven years old at the invitation of UC San Francisco to test a new drug, and continues to receive weekly infusions of the life-saving drug at the hospital. The Bueso family has lived in California for 17 years under visas and Deferred Action based on humanitarian purposes and medical exemptions; however, two weeks ago they received a letter from U.S. Citizenship and Immigration Services (USCIS) stating “Your period of authorized stay has expired. You are not authorized to remain in the United States.”, and allowing 33 days for the family to leave the country voluntarily or forced removal proceedings would begin. The drug Isabel’s life depends on is not available in Guatemala and her doctors have stated that without the drug Isabel’s health would rapidly deteriorate and she would die, likely within months.

I first met Karla Bueso, Isabel’s mother, in 2007 when she participated in Partners In Policymaking, an advocacy training program for individuals with developmental disabilities and parents of children with disabilities. The Arc of California, in coordination with other family-based advocacy organizations, was running the program and I was hired as the director. Karla participated intently in the six month long training and would often share the challenges and successes she experienced. She passed that training on to her daughter Isabel, who has become an inspiring advocate at the state and national level for the rare disease community. In an interview this week Isabel said, “Before you advocate for others. Now I find I have to advocate for my own life. It’s scary.”

The Bueso family has received support from Congressman Mark DeSaulnier and Senator Kamala Harris’ office, who are seeking ways to assist. Unfortunately, the Bueso’s attorney, Martin Lawler, has stated that the federal administration has offered no appeals process. With a lack of options, the Bueso family reached out to media and is also reaching out to you and me. This week their story was shared on the Rachel Maddow show, in the New York Times, and their local news KTVU. They have also created a Change.org petition, and the family is asking that everyone sign it to create noise that can’t be ignored by the federal administration.

People with disabilities and parents of children with disabilities often face hurdle after hurdle with no other option but to overcome. For Isabel, Karla, and the Bueso family, this is a matter of life or death, one that I hope and pray is overcome.

SIGN THE PETITION NOW

UPDATE Monday, September 2: According to the New York Times the Trump administration is now reconsidering “its decision to force immigrants facing life-threatening health crises to return to their home countries.” To read the full article click here. https://www.nytimes.com/2019/09/02/us/trump-immigration-deferred-action.html

UPDATED: The Arc Responds to Cruel DHS Public Charge Rule That Hurts People with Disabilities and Their Families

NEW RESOURCES AVAILABLE: Know Your Rights from Protecting Immigrant Families

The Arc denounces the harmful rule that was finalized by the U.S. Department of Homeland Security (DHS) on Wednesday, August 14. This new rule discriminates against people with intellectual and developmental disabilities (I/DD) and their families, among others. It allows the federal government to deny admission into the U.S. and unfairly restructures immigration in a way that is detrimental to individuals based on their disability and the use of vital programs like Medicaid.

The DHS final rule means the government will consider a significantly expanded list of factors to determine whether a person will be considered a “public charge.” A public charge is a person that the government thinks will (currently or in the future) be dependent on the government for support. The rule will hurt children and adults based on disabilities and chronic conditions. The use of many programs such as most Medicaid services (including regional center services and Media-Cal), the Supplemental Nutrition Assistance Program (SNAP or also referred to as CalFresh), housing assistance, and other important benefits will also be considered in the public charge test. DHS acknowledges that the new rule may have an outsized impact on people with disabilities.

“This new policy is devastating to many people with intellectual and developmental disabilities and their families. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status. The rule will increase poverty, hurt public health, and worsen housing instability. It’s the latest callous tactic in restricting access to necessary services and supports. The Arc continues our work to ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally in the U.S., without unnecessary or discriminatory restrictions based on their disability,” said Peter Berns, CEO, The Arc.

The Arc opposed the rule and submitted comments with the Consortium for Citizens with Disabilities when the rule was proposed in 2018.

What Do We Do Now?

This rule has already had a chilling effect on Californians with disabilities in need of public services. It is critical that families, advocates, regional centers, service providers, county administrators, and more make specific outreach efforts to individuals and families that are disenrolling from services and supports. Knowledge and information is most important right now. Here are a few facts:

The public charge regulation does not apply to lawful permanent residents (green card holders) applying for citizenship, refugees, asylees, Special Immigrant Juveniles (SIJs), certain trafficking victims (T nonimmigrants), victims of qualifying criminal activity (U nonimmigrants), or victims of domestic violence (VAWA self-petitioners), among others.
The rule won’t go into effect until mid-October, and it is only prospective, meaning that any services or supports used before then would not be considered.
The State of California is filing a lawsuit and will seek a preliminary injunction to stall enforcement of the new rule until the courts rule whether or not it is legal. Many other organizations are also filing lawsuits. You can view the press conference with Governor Newsom and Attorney General Xavier Becerra announcing the lawsuit here.
Some public services are not included in the rule, including Children’s Health Insurance Program (CHIP) and pregnant mothers.

There are many organizations contracted with the state to provide free legal assistance to immigrant families that are concerned about the new rule. The California Department of Social Services has a list of organizations throughout the state that will answer questions and provide information, education, and/or outreach services specifically related to public charge. Local disability organizations are encouraged to contact one of these organizations in their region to coordinate outreach activities. https://www.cdss.ca.gov/Benefits-Services/More-Services/Immigration-Services/Immigration-Services-Contractors/Public-Charge-Contact-List

The Arc Responds to Cruel DHS Public Charge Rule That Hurts People with Disabilities and Their Families

The Arc denounces the harmful rule finalized by the U.S. Department of Homeland Security (DHS) on Wednesday, August 14. This new rule discriminates against people with intellectual and developmental disabilities (I/DD) and their families, among others. It allows the federal government to deny admission into the U.S. and unfairly restructures immigration in a way that is detrimental to individuals based on their disability and the use of vital programs like Medicaid.