“What barriers/challenges have you experienced?” a large white poster on the wall asked. Four posters with the same question adorned the walls of the Bank of America Diversity Center at the Civil Rights Institute in Riverside, CA, where the Center for Healthy Communities (CHC) hosted their monthly community workshop on advocacy.
On one poster Briana Rice wrote about how navigating the healthcare system was difficult for her as a person who has an invisible disability. An invisible disability is recognized as a neurological, mental or physical condition that may not be visible from the outside.
Rice is the creator of the Love and Light Movement (LLM), an Inland Empire-based movement dedicated to fostering positive impacts in local communities through adventures and traveling.
“In 2021 I was in a car accident and I was rear ended by a semi-truck. I’m so grateful that I’m healing, but as I stand today, I still have a traumatic brain injury and a spinal injury,” Rice shared. “With that, I have had a long healing journey, but I’m in a place where I can live a functional life, but with accommodation.”
In addition to leading Love and Light, Rice is a biologist and journalist who uses her platforms to share how luxury travel has contributed to making her life better as someone traveling with a disability.
“I also want to be an advocate and a face for Black people or others with traumatic brain injuries or disabilities, who are afraid to stand up and say, ‘I’m not okay.’ What I find is a lot of people with brain injuries, especially because it’s invisible, they’re kind of embarrassed to share it.”
According to “Listening to Black Californians,” a study funded by the California Health Care Foundation (CHCF), “Nearly nine in 10 women (89%) speak up a great deal or quite a bit, compared to eight in 10 men (81%). Eighty-eight percent of respondents with a disability and 88% with a mental health condition speak up a great deal or quite a bit about their concerns during a visit.”
But speaking up and advocating for oneself is not without difficulties, especially for some Black people. It took Rice five months of urging and pushing doctors to reexamine her before doctors agreed to take steps to image her. Doctors found that she did, in fact, have a brain injury and injury to her spine.
“I’ve had people that thought I was maybe asking for time off [of work] or asking for medications. Give us the due diligence because part of my disability was so bad because I wasn’t believed at first,” Rice said.
Navigating the health care system can be more manageable
As Rice responded to answer the question about barriers, other participants who attended the Center for Healthy Communities’ workshop on how to navigate the healthcare system also shared similar sentiments of not being heard or lack of equitable treatment in some cases.
Leticia Vaca Williams, medical social worker and owner of Urban Health Group Inc., led the workshop on how being prepared can make navigating the healthcare system less challenging.
Using a preventative approach to care, Williams shared the following four ways that will help make navigating the healthcare system more manageable: know the options, make your own information known, advanced planning and finding helpers.
The first step to understanding how to navigate the healthcare system is knowing what options and services are available to patients. There are essentially four main options of care across a patient’s lifespan that range from preventative care (routine check ups), crisis care (a sudden change in health status), care management (ongoing treatment and management) and end-of-life care (hospice care).
Williams explained that knowing your options and what services are available to you in the healthcare system can be beneficial not only to the patient seeking services, but to their family who is supporting them as their emergency contact.
“The landscape of healthcare is all over the place for the most part. A lot of people find themselves in the gaps. This, my friends, in the emergency department, is where a lot of people fall into. So, how many people know someone who went to the emergency department in the past year?” Williams asked participants. Several people raised their hands.
Equipping oneself with the knowledge about which hospitals have emergency departments, what insurance plans are accepted or which city has a trauma center can help reduce feelings of frustration and stress. By creating a plan, patients can make their information and preferences known before it’s too late.
In addition to knowing what options are available in the healthcare system, Williams highlighted that the next step to taking a preventative approach to navigating the healthcare system is making your information known through documentation. She encouraged participants to scan a QR code that led to a quiz called “How Prepared are you for a Medical Emergency?”
The quiz asked questions like “do you have a Medical Emergency Plan?” and “do you have an emergency contact person who knows ALL of your CURRENT (past six months) medical history?”
On average, attendees who participated in the quiz received a score of 40 percent. Some shared that they haven’t shared such recent information with their emergency contacts for a variety of reasons such as maintaining personal privacy.
“There’s still a lot of historical ways that we think about our personal data and know what’s going on. We like to deal with it on our own, but if there’s an emergency…you want to make sure folks have enough information,” Williams explained.
Creating a Medical Emergency Plan is one way to gather your information and create a personalized plan for emergency contacts. The plan allows a person to include information regarding past and recent medical history, personal needs in the event of an emergency, medications and details about medical insurance.
“This is great. As I’m going through this right now, in real time — I just lost my son last summer and I’m still going through all of his stuff — passwords are really important because everybody does everything online. The phone being locked is one thing, and then every account and everything has a password, so if we could include passwords in this,” Phyllis Clark shared. Clark is the founder and CEO of the Healthy Heritage Movement, Inc. (HHM), an organization created to address health disparities within the African American community.
There’s value in planning ahead
Michelle Burroughs, director of the CHC, shared that prior to her mother getting ill, her mother was adamant about preparing an Advanced Health Care Directive. When Burroughs moved her mother to California to live with her and take care of her, her mother updated her documentation for her new provider.
“In the midst of it, I was not the healthcare person — that flew out the window. In my mind, I was going to fix her. I was going to make her healthy, so that was all I was fixated on. I didn’t want to talk about advanced care directives and all that stuff, but she was intentional,” Burroughs explained. “And thank goodness…it was a gift. I didn’t realize it was a gift until that time came when it’s like, ‘What are her wishes? She can’t speak for herself.”
Williams explained that having proper written documentation ready and available is important to ensure that a patient receives the care they want and deserve. It also ensures that doctors and providers are abiding by a patient’s wishes through a legally-binding document.
“When it comes to LGBTQ+ [people], there’s a lot of discrimination that happens, especially with the folks who are partnered and not married, there may be some barriers to having your partner really involved in your care. You want to make sure it’s documented,” Williams said.
Having such documentation decreases the likelihood that a patient’s wishes will be ignored and it can hold healthcare providers accountable to provide the desired care.
“Even with all this planning, you may experience some discrimination from folks who have biases toward certain folks,” Williams addressed.
Results from the Listening to Black Californians’ survey found, “Over eight in 10 Black Californians believe it is extremely or very important to ensure there are financial consequences and other accountability measures when incidents of racism or discrimination occur.”
Eighty percent of respondents also supported that providers and other health care professionals receive implicit bias training.
During the workshop, attendees participated in scenario-based skits between doctors and patients, and pointed out what went well and what went wrong in the skits. One common theme in the skit was patients feeling brushed off by doctors and medical personnel.
“I get what you’re saying, that they have a lot going on, but as a patient and being on the receiving end of that — there is a way to communicate with people,” said Nakita Hooper, an outreach and community resource specialist. Hooper explained that part of working in the medical field and providing services to patients is community service. Combined with existing attitudes or assumptions about patients, the lack of compassion when interacting with patients can lead to someone choosing to not get care.
As attendees like Hooper and Clark shared their perspectives on how to improve on etiquette, first-year medical students from UCR’s School of Medicine shared some insight into the world of medicine and healthcare. As part of UCR’s Program in Medical Education (PRIME) cohort, these medical school students are being trained to specifically address the healthcare needs of the African, Black, and Caribbean (ABC) communities of the Inland Empire.
Arturo Chavez, a first-year medical student enrolled with PRIME, noted the feedback regarding how the medical field needs to change in order to produce more empathetic physicians. Prior to medical school, Chavez was a highschool teacher for 16 years, a position he said led him to developing “soft skills” like communication.
“All of these kinds of things that force you into being a person — that makes you into a better doctor. So medical schools are seeing that it’s no longer just a numbers game,” Chavez said. He said test scores are no longer the deciding factor, but experience now plays a huge role in the process of being admitted into medical school.
“It’s also who you are as a person and what you bring, those are the soft skills, these personal skills that you bring into play.”
PRIME students are trained to work with and serve historically underrepresented communities. Part of the program requires students to engage with community members by engaging in “Community Circles” where students will share more ways in which people can advocate for themselves.
This article is published as part of the Commonwealth Health Equity Reporting Fellowship.