The Dilemma of Navigating Disability Services in the United States

Imagine English is not your first language and you arrive at the airport with bustling lanes, craters of suitcases, lurid noises of airplanes, the stench of McDonalds and the aroma of fresh coffee. In the meantime, people are rushing to their destination and people who are arriving to the United States for the first time. You see a father in his 40s with sunken and melancholy eyes and with a hint of no sign of a smile. He has no educational background from this new country, no income, and no medical insurance. He arrives with his wife and three children while struggling to make sense as to why he is here and how to handle the responsibilities of taking care of a disabled spouse and three children, two of whom have disabilities. This was the story of my father and family when we immigrated to the United States in 1999 to seek better mental health care for my mother who suffers from schizophrenia, depression, and dementia and how I eventually became a caregiver to my mother and younger brother.

This story seeks to highlight how many immigrant families such as my family, face the challenges of navigating disabilities services in their communities and especially with individuals who have mental illnesses and pervasive developmental disabilities. This story not only features my younger brother who is diagnosed with a pervasive developmental disability but emphasizes how we as a family overcame the challenges of a system that almost failed us. To better understand how we overcame the system and navigating disability services, we need to understand the context of how immigrants are navigating the health care and disability systems in the United States and how immigrants such as my family are overcoming the barriers and advocating for themselves and the communities around them.

Many immigrants and children of immigrants with disabilities face intersectional challenges, including language barriers, cultural differences, discrimination, and socioeconomic disparities. First, immigrants come from various cultural backgrounds and their experiences with disabilities can differ from those of native-born individuals. Recognizing and addressing these intersecting forms of discrimination can help to create a more inclusive and supportive environment for all individuals with disabilities. Immigrants with disabilities often face isolation and higher level of stress due to their dual identities as immigrants and people with disabilities. Furthermore, immigrants with disabilities often face unique barriers, such as unfamiliarity with the healthcare and social service system, limited access to resources, and a lack of cultural competence among service providers. Indeed, the challenges that immigrants with disabilities face can be daunting and an uphill battle for many families including my family.

When my parents and I arrived in United States from Karachi, Pakistan, we had come with memories of adversities, traumas, and unbearable grief of leaving one’s home behind. I had vividly remembered rushing to the airport with not being able to bring my dolls and toys and being sick with some unknown illness and not knowing where I was going. I was grateful for my mother’s family for sponsoring us to come and for saving our lives. Though my parents had studied English due to the British colonial history in Pakistan, understanding how the system worked in the United States was a different story.

For example, my younger brother was placed in the special education program and was diagnosed with a speech and language impairment at that time The school did not understand the realities in the home where my mother, who suffers from schizophrenia as I had mentioned earlier, could not provide the care for my brother’s cognitive, emotional, and social development. My father on the other hand, who never took the time to understand my mother’s disability, also could not find the energy to provide care for my younger brother’s needs. For example, when my younger brother would have his IEP meetings, my parents were not able to always show up and they were not able to understand the medical jargon used in the special education program. My parents most likely needed an interpreter but because my parents understood English but not the system itself, the school decided it was not need and failed to advocate for my family which delayed getting the assistance for my younger brother who need services in his 30s. My family and I were not the only ones experiencing this dilemma. Too many low-income households with not having access to resources and the advocacy skills were left to fend for themselves.

Recognizing and addressing these intersecting forms of barriers can help to create a more caring and supportive environment for all individuals with disabilities. If we as a community provide support and resources for first-generation immigrants with disabilities, it can help raise awareness within the broader society about the diversity of the disability experience. For my family and I education was the key to empowering ourselves because education can lead to increased cultural competence, reduce stigma, and improve social inclusion for all individuals with disabilities  When I got diagnosed with a mental health disability at the age of 17, through therapy and hospitalization programs, I found my voice and sought to utilize the advocacy skills I had learned and apply them to assist not only my family but the communities around me. At the age of 23, I became the primary caregiver to my parents and younger brother.

My work to navigate the disability system included: making calls to numerous organizations, translating from Urdu to English for documents that needed to be completed to receive services, driving to appointments to do intakes and evaluations, while learning about the numerous programs for individuals living with disabilities as well as social welfare programs. I held on to these challenges by not giving into a system that made it difficult to navigate for immigrants with disabilities.

Though our lives were altered by immigrating to the United States, I reflect on how the dilemma of navigating disability services let alone any services can be deterring and complex but with the help from advocacy groups, people sharing their stories via social media, and community organizations, we can motivate ourselves to contest the system and transform to a better equitable society.