This article is the fourth in a series giving voice to the perspectives of individuals with lived experiences as they share their opinions on a particular topic. The authors of this column facilitated two focus groups with their peers to inform this writing. The authors are served by Services for the UnderServed (S:US), a New York City nonprofit that is committed to giving every New Yorker the tools they can use to lead a life of purpose.
Navigating the health care system can be complex and complicated even for insured individuals with little to no barriers. For families who have parents or children who are undocumented, steering through the health care system can be even more difficult. We are all individuals living in two different shelters for homeless people; one, a family shelter in Brooklyn is home to thirty-six families, and the second, a shelter in the Bronx for twenty families who are victims of domestic violence.
According to the New York City Department of Homeless Services’ daily census report, there are over 12,800 families seeking shelter services throughout the five boroughs. In addition to confronting homelessness, we are all facing additional hurdles that impact our ability to access healthcare. These hurdles include economic status, lack of familial supports, language barriers; and vulnerabilities associated with race, ethnicity, or gender. These challenges were a consistent theme that came up while speaking to the difficulties of navigating a health care system that is not made to be available to us.
We discussed three main barriers to healthcare. The first was personal barriers, those that are put in place solely by our status as an immigrant. The second was system-based barriers, which are the obstacles we face that are established by a particular healthcare provider. The last was policy-based barriers, which is the main force against us in receiving regular high-quality medical care.
First, we found that there are many personal limitations when we seek medical care for ourselves. For some of us who prefer to communicate in Spanish and French, the positive news is that non-English usage did not present an issue when communicating with providers. Forms were presented in both English and our preferred language, and there was always a staff member who could communicate with us. Overall, even if a staff member could not speak with us, there was access to a translation service. However, this communication issue has caused some of us to hesitate when asking questions or when seeking additional clarity, specifically if a translation service was provided.
There is clearly a fear of discrimination for some of us when seeking medical services. While these fears largely never came to fruition, the dread of the possibility was enough for some of us to not seek care. At every level of service, from the front desk staff member who takes our information to the doctor or medical professional that provides us care, there were questions of status, and in our current political climate, the fear is greater than it used to be.
The financial limitation of seeking medical care for ourselves and for our children, specifically when uninsured, is very real. With the cost of co-pays and prescriptions high, many of us had to admit to foregoing doctor appointments and/or seeking emergency medical care more than once. One member of our group, Mary*, 32, stated that she used to frequent a health clinic that had a sliding scale payment plan. It was there that she found out she had a significant health issue that required weekly physical therapy. The clinic could provide those services to her, but the $30 a week became too burdensome to continue. Mary was told she needed to see a specialist for this health issue and was able to be provided with an affordable appointment. She was told by the specialist at the clinic that she needed surgery, but the specialist stated that due to the cost, the clinic could not provide her with the necessary procedure. If she wanted to follow through on her medical needs, she would have to do so out of her own pocket at full cost.
Then, there are system-based limitations – barriers put in place by the healthcare providers that burden our access to care. Some of these burdens are financial. Many of us have received large bills after being told that we would not be charged. Others have felt discriminated against based on the nature of our requests. Some felt judged for seeking mental health care or substance abuse services.
Another member of our group, Sylvia*, 38, talked about having gone to a hospital for an undisclosed illness and being told there that she would qualify for Medicaid as long as she filled out the paperwork before seeing the doctor. She agreed to multiple tests and procedures and was given sufficient care, all the while believing that Medicaid would cover the cost. It turns out, she was ineligible for Medicaid, and received a bill for $2,900. Of course, this is a bill she is unable to pay. No one was surprised, as these medical bills have been the main barrier to our seeking additional care. There is a basic distrust in a system that uses our undocumented status against us in this way, and it causes us to hesitate in seeking care, and to make sure to put our children’s needs over our own.
Most of these barriers put in place by individual providers are due to the well-defined framework of national and state policy that prohibits us, as undocumented immigrants, from affordable and adequate care. This is the third barrier, and the one that informs the other two.
Undocumented immigrants are at high risk of being turned away from hospitals and clinics, and often go to multiple providers before receiving treatment. The issue is that things have to get to the point of being an actual emergency in order to meet the standards. John*, 29, a member of our group, is a good example. He went to the hospital for extreme pain in his abdomen and was first asked if he had insurance, then asked if he had a job. When he answered “no” to both questions, he was turned away. A week later John’s appendix ruptured. He returned to the hospital and was now seen because his care could be billed to Emergency Medicaid. Another member of our group, Christine*, 31, had an uninsured child with a high fever who, after being rushed by ambulance to a hospital, was turned away based solely on being uninsured, despite a high fever. Christine took a cab to another hospital that immediately treated her son.
When asked what could be put in place to assist in clearing up these barriers, everyone agreed that consistency across providers is essential. Those without insurance should not have to “shop around” for care. Additionally, many found providers to be uninformed or misinformed about the rights of uninsured clients. Overall, uninsured clients wish the focus was more on the medical care that we need and not the fact that we are undocumented. Things would be very different if it were not for our undocumented status, and that is not a good state of affairs.