Invisible Borders: Immigrants living with disabilities

Dr. Westy Egmont

While national attention returns to aggressive enforcement of immigration laws, a quiet drama intensifies across America. 

Immigrants with disabilities number in the millions. Invisible, overlooked and impacted especially by health care legislation, their need demands attention. Reflective of school statistics more than general national statistics because the average age of immigrants is younger, a projected 35.9%, or more than 5.1 million immigrants live with a disability in the U.S.  Fewer than 15% of disabilities are congenital and most emerge during one's lifetime, generally post migration, thus the foreign born are projected to have slightly fewer than 1 in 5 persons (the U.S. proportion) having a disability.

If the Americans with Disabilities Act (ADA) has successfully impacted this broad demographic, foreign-born Americans are still at particular risk. A professor of Spanish recently settled in the U.S. with a preschooler whom they discovered might be on the high end of the Autism spectrum. They sought help. Language, knowledge of the healthcare system, insurance coverage, cultural factors including lack of family backup to support intensified schedules, financial and treatment options impacted their access to care.  If that person were to be Somali or Syrian, pressure to find linguist tools and specialists for diagnosis, education planning and parental support would be increased. If that person settled near an automotive assembly plant in Claycomo, Missouri or Smyrna, Tennessee, the complexity of identifying appropriate services would be multiplied and could force relocation.

Current U.S. policies impact access to adequate health care services and educational resources to many newcomers to the country. A five-year bar limits access to most public assistance. Federal law (Welfare Reform) enacted in 1996 limits non-emergency Medicaid access to just a handful of categories of "qualified" immigrants, such as legal permanent residents ("green card" holders), veterans, refugees, asylees. Even here, LPRs (lawful permanent residents) must generally wait 5 years for eligibility to kick in. All other immigrants, including dozens of categories of immigrants with lawful presence, are excluded, though the ACA has allowed lawfully present immigrants to access private insurance through the state exchanges - which lowered the uninsured rate of non-citizens by 25%.

Even eligibility for naturalization can be negatively affected by a "public charge" classification. The term "public charge," as defined by the U.S. Citizenship and Immigration Services (USCIS), refers to an individual who is likely to become "primarily dependent on the government for subsistence, as demonstrated by either the receipt of public cash assistance for income maintenance or institutionalization for long-term care at government expense." Those disabilities that might limit employability or require special services can result in rejection by USCIS. 

Medicaid is the U.S. safety net and the primary means of payment for long-term medical costs, but millions who are out of status are deemed ineligible for the benefit. In the most recent Senate version of immigration reform, a 15 year ban to access which would impact millions of other foreign born legal residents was included. Under the current Administration, with the ACA replacement underway, less and stricter eligibility is predicted as pre-existing health conditions are grounds for rejection by insurers. Legislation before Congress would similarly limit immigrant access to the state health insurance exchanges to "qualified" noncitizens. This would especially hurt people with temporary protected status (a form of humanitarian relief) and people on professional, guest worker or student visas all of whom had access to the state exchanges.

Self-deportation to find affordable health care is one consequence and  medical repatriation by U.S.  hospitals due to medical costs that cannot be met regularly occurs.   Picture the Haitian heart patient who is uninsured or underinsured, here legally under TPS, and not yet qualified for ACA or its replacement.The American Hospital Association has confidentiality policies but has no policy about those without sufficient insurance such as the heart patient who is airlifted back to Haiti where few services exist. Subsequent deaths are regularly reported. The New England Journal of Medicine article "Undocumented Injustice? Medical Repatriation and the Ends of Health Care" connects the issues of health care, justice and immigration. 

Access to care for foreign born limited English speakers for a disability or multiple disabilities, ranging from the consequences of cancer, to living with MS or facing mobility challenges due to loss of limbs, remains remarkably scarce. This issue includes resources and helpful tools for understanding the array of barriers individuals encounter, and for staff trainings on providing appropriate services to immigrant and refugee persons also presenting with disabilities. Deaf Access Services at JFS of Buffalo is provided as an exceptional model demonstrating the power of combining services with community partners. Networks of healthcare and immigrant service providers across the nation need to address the issue with complementary services, identification of need and shared commitment to culturally appropriate and linguistically accessible services. Advocates need to be sure anticipated immigration legislation protects this doubly vulnerable population. On a policy level, each state has discretion and there are programs such as AABD in Illinois (Aid to the Aged, Blind, or Disabled) that provides a cash grant to certain low-income people with disabilities or who are blind and to people age 65 and over. Its purpose is to provide for the basic income needs of people with disabilities and senior citizens, and those with five years of qualifying status can apply; however such programs are far from universally accessible.

While risks of inadequate care are sufficient subjects for attention by human service and policy making professionals, the issue also touches on the need for culturally-appropriate professional care. Ironically perhaps, the shortfall of diverse workers calls for more immigration, not less. Nationally, approximately 26% of the current direct care workforce is foreign born. In some states, the percentage is much higher: NY (63%), NJ (50%), DC (46%), CA (45%), and FL (42%). Approximately half of these workers are naturalized citizens and others have legal status, but a portion is estimated to be unauthorized. All Americans living in need of care depend on a healthy, robust, diverse immigrant workforce: immigrant MD's make up 27% of all doctors, and foreign born heath care employees constitute 22% of the total workforce!  

Social workers in education and health care, resettlement workers, and all those who have direct contact with newcomer populations need to be cognizant of whole family needs and educate clients  about ADA, IDEA, Disability Exceptions to Naturalization while seeking to engage families in creating plans which address unmet needs.  Explaining self-advocacy and serving as advocates ultimately will save lives and make the integration process for those living with disabilities much more feasible.

Westy Egmont, Director

BCSSW, Immigrant Integration Lab