Healthcare in the Latinx Community

By Hannah Blankenship

Healthcare, it’s something that everyone needs in order to live a longer life. I learned this past year that healthcare isn’t always affordable or accessible for those of the Latinx community. I began my travels to discover just how slim the healthcare options are for the Latinx community at a clinic in the Argentine community of Kansas City. My travels came to a halt at the Institute of Human Development where I heard the stories of Bertha Aldape and Gerardo Martinez. Both are parents of children with disabilities and have faced their own challenges in the healthcare community, which they strive to rise above. It was through my connections with the University of Missouri-Kansas City that I was able to interview Ricardo Marte, a Professor of Experimental Psychology, and learn about his personal experiences in health care. I was also able to get in contact with the school’s own Department of Disabilities and discuss what they might offer for someone of the Latinx community on campus. It is through these adventures that I have learned, health is a precious thing. One we should not limit or take advantage of.

To begin, I first want to go over how I developed my interest in access to healthcare. For me, it began sometime in high school when I was faced with the facts that our healthcare system wasn’t as great as it could be. I was born premature, had my gallbladder out at the ripe age of 14, and suffered from chronic sinus and ear infections. Overtime, I watched as my mother (who was on disability for Epilepsy) struggled to afford to keep up with all the doctor’s appointments and health insurance payments. Then, in my senior year of high school I was diagnosed with Generalized Anxiety Disorder (G.A.D.), which would cost more visits to a therapist. However, this would be the beginning of my journey to discover what was it about healthcare that needed to be altered or changed for the better.

According to the Anxiety and Depression Association of American G.A.D can be described as, “Generalized Anxiety Disorder (GAD) is characterized by persistent and excessive worry about a number of different things. People with GAD may anticipate disaster and may be overly concerned about money, health, family, work, or other issues. Individuals with GAD find it difficult to control their worry. They may worry more than seems warranted about actual events or may expect the worst even when there is no apparent reason for concern.” (ADAA) No matter how hard I tried, I couldn’t shake this worry or sense of impending doom from me. I thought that if I worked hard enough I could figure out a way to make things better-whatever they were. So, I pushed myself in school and in life until I had a panic attack. After, I was diagnosed I thought that learning more about myself and what this condition I had was would be able to help me get better. That was until I found out from my therapist that G.A.D is a condition that most likely never goes away completely and can only be controlled. I started college and began pursuing a career in psychology where I learned more about people like me who have conditions that impair their ability to function or get through daily life.

Yet, it wasn’t until I took a Discourse 300 class on dystopian literature that I figured out what was really driving me in my research. We had a project in that class where we had to research something, anything we wanted, and then do a presentation on it. I’d been reading a book for another class called How Emotions Are Made by Lisa Feldman Barrett where she discusses the way the brain creates social constructs. Then the thought hit me, “What if disability is a social construct?” For the next few weeks, I spent time researching how to fight stigma against disability and even conducted a survey measuring the student’s thoughts on people with disabilities. My presentation was a hit. I talked about how everything in our lives reinforces this stigma against disability. Our language, the way our homes are built, the way we treat people with disabilities, and even the laws that have been made to protect them. I felt like I could cry, I was so happy. I had finally realized that it wasn’t our purpose to try to fit in with the world, it was the world’s job to include us. Inclusion isn’t a privilege, it’s a right.

Thus, I decided to embark on another journey that seeks to measure the amount of inclusion in the healthcare system for people of the Latinx community. I began with a little clinic, Silver City Health Center, secluded in the Argentine community of Kansas City. The clinic itself was behind another building kind of tucked away out of sight. It didn’t even look how one would expect a clinic to look, instead it looked more like an office building. During my talk with one of the staff, I was informed that Silver City Health Center provides care for those of the Argentine community who normally can’t afford care. Patients are given a discount for their care based on what kind of care they need and what’s required to complete it.

The history of the Silver City Health Center goes back to July 2006 when they became managed by KU HealthPartners. KU HealthPartners began as the KU School of Nursing Inc.  In 1994, which received a name change in 1999. The organization officially became a nonprofit in October of 1995 and by 2002 were named “Practice of the Year” by the National Organization of Nurse Practitioner Faculties. Currently, Silver City Health Center has partnered with Vibrant Health of the Wyandotte Neighborhood Clinics whose mission is, “To provide access to respectful, empowering, culturally sensitive and appropriate high-quality health care for the community, regardless of socio economic obstacles.” They want to inspire others to provide better access to care and reduce health disparities. The services of Vibrant Health include preventative care, chronic disease management, behavioral health care, and dental. Clinics and companies like the Silver City Health center and Vibrant Health are what are really aiding people in better access to healthcare, but there is still a lot of improvement to be made. (Silver City Health Center.)

Other places that strive to help people of the Latinx community find access to healthcare in the Kansas City area are El Centro and the Institute for Human Development. El Centro was founded by a $10,000 grant from the Archdiocese of Kansas City, KS promoted by Archbishop Ignatius J. Strecker, Father Ramon Gaitan, and many others to help with access to services for the Hispanic population. In regards to Healthcare, El Centro provides a health navigation service that helps navigate those of the Hispanic community through things like finding a clinic in their area, understanding medical bills, filling out applications (Medicaid, Medicare, Disability, SNAP, etc.), and more. Places like El Centro can be really great for helping those new to the community be able to connect with the resources around them. (El Centro)

The Institute for Human Development is a part of the national University Centers for Excellence on Developmental Disabilities (UCEDD) that began in the 1970’s under the UMKC Institute for Community Studies program. Then in 1977, the institute established the Missouri University Center for Excellence whose goal was to respond to needs across the state and be outreach oriented. It wasn’t until the mid-80’s when the name was changed to the Institute for Human Development and from there IHD has strengthen its role in the university. The Institute now works to tackle larger concepts like inclusion of community through diversity, cultural competency, and social capital. Through the Institute students can receive what is called, “Interdisciplinary Training”, which they can receive in the process of getting their graduate degree. The training offered provides the student with a certificate in Disability studies and IHD also offers participation in the ACED (Adult Continuing Education for Persons with Disabilities) where students can get hands on experience working with people with disabilities. (Institute for Human Development)

The first interview I conducted, with a man named Gerardo Martinez, who works at the Institute for Human Development and is currently working to develop a new program geared towards families of the Latinx community. When I first met Mr. Martinez, I remember being really astonished at how warm and welcoming he came off. I would later found out where a lot of this warmth came from as I asked him questions about his work and personal experiences with healthcare. Mr. Martinez is the Director a program called Alianzas, which means “Alliances” in Spanish. The goal of this program is to promote a positive intercultural communication between the programs that are provided by places like UMKC’s Institute for Human Development and the families of people with disabilities. The program is also working to conduct focus groups and interview about 25 Latino families to find out about their needs and the kinds of barriers that they bring their children into the healthcare system or any other kind of services offered.

Next, Mr. Martinez went onto tell me about his own personal experiences. He has six children, two of which he adopted when he married his wife, and one of which was developmental disabled. Martinez revealed to me that his son, Matt, was six years old and born with a sever disability that took away his verbal expression. He told me, “He had something called…He was diagnosed with Lennox-Gastaut Syndrome, which was a multiple seizure disorder? And so that, affected so much his brain development and so his physical development.” (Martinez) Growing up, my mother had Epilepsy, which meant that I knew what seizures were and how scary they could be. However, Matt’s condition as described by Martinez was obviously much worse than my mother’s controlled seizures that were regulated by medicine. I listened as Martinez explained how they used to live in Utah and had access to a lot of good programs and therapies. He went on, “So we came to the Kansas City area and..uh..we kind of…we kind of struggle to find access to healthcare providers and..and people that have the expertise in Lennox Gastaut syndrome. There weren’t many people that know about that particular diagnosis and so it was quite a journey to…to uh. find about ETAS also to find about the Kansas City Regional Center where they will have uh…uh. service provider there or actually. It’s more like a coordinator.” (Martinez) Hearing this, I couldn’t help wondering how frustrating it must have been going from a place where your child was getting the treatment they need and receiving the kind of care that was specific to their condition only to have it ripped away once you moved. Martinez went onto say that the coordinator helped to some degree, but that things were still a struggle for a while and his family did their best to navigate through the healthcare system.

Continuing on, Martinez revealed to me how his son’s disability greatly influenced his own path in life. Before, he worked in administration and never thought that he would end up working in social services. Martinez’s journey began at Mattie Rhodes Center where a program had received a huge grant from the Administration of Developmental Disabilities good for five years that was trying to bring minorities to serve minorities. Coincidentally, Martinez had been reading about it and then decided to go meet someone to get more involved in the agency. A woman from the agency seemed to be really excited about Martinez’s participation, because he was the father of a boy with disabilities, which they had been looking for so that someone could relate to other people they were helping. Martinez applied for the job to encourage and support people of the Latino community to become a part of the program and he got it.

He then decided that he would use working at Mattie Rhodes to find out more about access to better programs and healthcare for Matt. He said elated, “Which it happened. It was really great! We were able to get wheelchairs, speech therapists, uh..we had a nurse coming to my home as well. It was almost like what we were having in Utah.” (Martinez) It was great to hear that through a little bit of hard work and the help of others, Martinez, was able to find the help he needed for his son. At Mattie Rhodes, Martinez worked on the Individuals Education Program researching for parents of children with disabilities about their rights in the school system. He went onto say that under another grant they were able to form a parent’s support group and have the help of a case worker designated to help the families that have a child with special needs. They began with around seven and quickly grew to over 200! The program helped parents find better devices for their children, help them to go on field trips or other activities, and even in emergency situations such as being evicted from their current residency.

Continuing on, I listened as Martinez explained more, “And then we also were providing a lot of education of self-reliance and to. To be a lot more confident as a parent and to be able to go to the school, you on your own, be able to protect your child of anything or just to learn that your child is progressing and this is the different percentages that he or she is growing, his or her understanding of the different subjects they are being taught.” (Martinez) After the grant expired, the only thing left of the program was the parent support group that Martinez and many others had formed together. It was from there that he made his way to the Institute for Human Development, which had been previously partnered with Mattie Rhodes Center. Martinez elaborated by saying that the Institute was looking for a way to connect with Latino families and found the Mattie Rhodes Center and it was through their partnership that research, studies, and data analysis of the impact given to Latino families was able to be conducted. Martinez went onto say that a lot of people at the Institute do presentations where he serves as an interpreter. This was great to hear, because a lot of places do not provide good interpreters that might be able to better explain the way a study or program works in terms the families can understand.

Towards the end of our session, I got hear a little more about Martinez’s motivation for doing the work he does. He revealed to me that his son Matt died at the age of 21, but Martinez stated that Matt prepared them for his death. Plus, Mattie Rhodes and the Institute were very understanding during Martinez’s time of grief and he was surrounded by love from the other families he had helped. I listened on the verge of tears as Martinez explained, “It was beautiful the way that he passed away. He kind of prepared us. And then, we were all together as a family. You know, the rest of the five kids. Then he just…left. And it was of course, pretty sad, but at the same moment we were grateful for..just..learning through him. I think..uh..children or anyone that has uh..kind of.. this. What is called developmental disabilities for me really are nothing but different abilities.” (Martinez) This notion that a disability is just someone elses different way of getting through or perceiving the world is exactly what I discussed in my presentation about disability as a social construct. It was great to hear from someone who had experienced first-hand that sometimes what the world tells you to believe, like someone is worse off than you because they don’t function the same way, isn’t always true. People are people, no matter what kind of normal they have.

Additionally, Martinez shared my perspective that people would disabilities should never be treated as less than anyone else, but he also emphasized the concept of using what is called “people first” language. Instead of saying that someone is autistic, you would say that they have autism. Autism doesn’t define that person, it is just a condition that they have, and does not make them who they are. Martinez says that people who have a disability know what you are saying about them, and we need to be more aware of how people feel and how we treat them. He elaborated on this when describing how his mother treated Matthew when she first met him, “She’d go very like. Self-pity. Like oh my gosh. He..(gasp) he’s sick! Oh. He’s so sick! Like uh mom, he’s not sick. (Laugh) like. He’s (laugh.) And I’m so happy that I went through all the experience because I was the one to teach my mom. Mom, it’s the way that, you know, God brought him to life and he has a mission to fulfill just like you and me and everybody else. Um.. and this is the way he chose to come and the way that he was called to be.” (Martinez) It was really refreshing hearing someone of faith be so accepting of developmental disabilities and teach others to be the same. In the past, I know that people with disabilities were regarded as people who had sinned or were conceived in sin and God was punishing them by making them the way they are. When someone puts a more positive spin on things, that can really change the person with disabilities own perspective about themselves and their role in life.  Martinez even said that Matthew doesn’t realize that his perception of things is different, he only knows the world through his own experiences and he’s happy with it.

Towards the end of our interview, Martinez became very emotional as he described to me how grateful he was to learn from Matthew and experience all he did with him. He told me that he thinks that he was the one with the disability through seeing the world a very wrong way. I noticed throughout his story that getting access to healthcare was all about finding connections and then helping others find the same. Martinez wasn’t given these resources from the very beginning for his son, he had to search for them and hope that someone would have the necessary skills to treat Matthew. I can’t imagine how frustrating that might have been at the beginning when he had to seek out all those resources with no way of knowing how or where to find them. Healthcare is something that should be readily accessible to everyone without having to search tooth and nail to find quality care. (Gerardo Martinez)

My second interview was with a woman named Bertha Aldape who had been introduced to me through Mr. Martinez and also had a child with a developmental disability. She told me of her experiences having a child who has autism and how she strives to empower those parents like her. Bertha started by telling me that she has four children and her oldest was diagnosed with autism when he was three years old. She started noticing the signs when her son was about 2 or 2 ½ when he would start showing behaviors like not liking high pitched noises. It was after that, that Bertha was given a flyer for Mattie Rhodes Center so her son could be assessed for autism. After that, she began attending a parent support group that was being held once a month. Six months later she got a referral to go to Children’s Mercy where her son was given the full evaluation to determine if he had autism or not. I then asked Bertha if Children’s Mercy had explained any of the evaluation process to her. She replied that they didn’t, which I found really odd. I thought that given this kind of testing could change her son’s life in a very drastic way, they would at least explain the process of it and how it is they determine whether or not he has autism.

Furthermore, Children’s Mercy did not even refer her to any places after diagnosing her son with autism so Bertha had to do some internet research of her own to find resources. Bertha let me know that at the beginning she was in shock, but grateful that someone had told her earlier that her boy might have autism. One of the things that really worried Bertha when looking up autism on the internet was that children with autism can develop multiple seizure disorders. She revealed to me that in the beginning she would cry a lot and ask herself, “Why me?” (Aldape) A big support through all of it was her husband who would tell her, “You know, our boys going to be fine. He’s going to be okay.” (Aldape) He also encouraged her to continue going to the parent’s support group and learning from other parents of children with special needs. Mrs. Aldape went on, “My boy’s disability pushed me to just keep learning. I was just hungry to go to conferences, presentations, anything that had to do with my boy’s disability. I always wanted to keep learning and I still want to keep learning.” (Aldape) I then asked her if this gathering of awareness aided in relieving the stress or worry that comes with having a child with a disability. Also, I wanted to know if having the support of others and researched help relieve the worry that a child won’t grow up the same way as others or will go through a lot of hardship. She simply replied that it did while adding, “My boy’s disability has pushed me, invited me, to also look at myself and also think about other parents that are also going through the same challenges that I have gone through with my boy. And so, has helped me to develop. Be more compassionate, more understanding.” (Aldape) Bertha went onto say that she feels she has gained an inner strength that pushes her to be a support to other parents who might be going through the same things as her.

Developing a support system through hardship, like having a kid with special needs, can be a defining factor in the kind of care they get or the outlook they have on life. Mrs. Aldape elaborated more that knowing about a parent support group gave her more peace and she felt much more relaxed. It was good to be understood and know that they know what you’re going through. She says she doesn’t want other parents to be afraid to have other children after having a child with a disability. Initially, she was afraid, but she felt that everything was going to be okay. I thought this was a really important point that Bertha pointed out about how today’s society approaches disability especially in regards to birth. A lot of people feel that everything is fine as long as their child is born happy and healthy, but this isn’t always the case. Even if you have access to the finest healthcare throughout pregnancy, a complication can occur before or after birth that might cause that person to develop a disability. There are many disabilities caused by accidents, drug usage, or are caused by a mental issue that has nothing to do with how healthy you are. That’s why we need to be accepting of people no matter how they may be different or change overtime and our healthcare system should reflect that.

Continuing on, Bertha elaborated on how her other children push Nick to do things that he wouldn’t normally do. She says they have more patience than her as a parent with Nick, it seems. I asked her if this is due to the fact that they have grown up in the same environment. She said yes, and they are able to determine what he needs even though he doesn’t speak very well. His siblings can act as interpreters for her sometimes, because they are better at determining what he wants better. Bertha says that this isn’t something that her and her husband have pushed on the kids, but just something they developed growing up with their brother. Currently, Bertha is a leader for a parent support group of parents with children with disabilities and she feels this is her passion. She’s very grateful that those families can identify with her and receive help from her own experiences.

One thing, I found really interesting about my interview with Mrs. Aldape was that there seemed to be a lack of translators in the healthcare system for Latinx families. It was lucky for me that during our interview Mr. Martinez was able to act as a really great interpreter for Bertha, because she felt much more comfortable being able to speak her first language. She says, “There is a huge barrier. Communication is just not good. There are sometimes where they may have an interpreter at that moment, but then they don’t have materials in Spanish. And I feel that Latino families are missing so much information or they are so behind and just getting behind in what’s happening. Because again, nothing is being..uh..done properly in their language.” This really struck me on a personal level to hear that there weren’t enough materials in a person’s language and she added that pictures don’t really help either. I have a giant fear of hospitals/doctors and it really shook me to imagine what it would be like if I didn’t understand anything that people were saying or even the pictures they showed me. I would probably have a panic attack just from trying to figure out what’s going on, which really makes me feel for those families who don’t have the resources they need. Obviously, it would cost a lot of money to have good interpreters at hospitals and clinics all the time; however, I think it’s important to provide so that a patient knows exactly what they are going to go through and understands procedures that might take place. Lack of understanding is how accidents can happen in the healthcare industry, it’s important people know what’s going on. (Bertha Aldape)

My last interview was with someone from the University of Missouri-Kansas City, Ricardo Marte, who works as an Experimental Psyche professor. Mr. Marte told me about his own personal experiences finding healthcare growing up a part of the Latinx community. It was extremely interesting to find the similarities between Professor Marte and my own experiences with healthcare despite me being a part of the white “privileged” community. He informed me that he didn’t really start having consistent healthcare until he went to college, because his parents just couldn’t afford regular checkups. He grew up in a family of 8 children, including him, which made it difficult for his parents to afford care for everyone. Marte elaborated on this, “And we were on public assistance. So, we grew up on like. Medicaid. some ways I was grateful that we had some health. So, I’m grateful that we got some help, but there were times where I think the size of my family may have been a bit too much for me for my mom to keep track of things.” (Marte) This was one of the things that I noticed while interviewing, Bertha and Gerardo both had large families and that can make things more difficult especially if each child has a specific ailment or condition that must be monitored.

Continuing on, Marte ruminated over the fact that he doesn’t think he went to the dentist until he was a teenager or had his eyes checked for glasses. He thinks that he didn’t have consistent healthcare as far as glasses and regular checkups go until about the age of 12. Growing up in a family of my own who couldn’t afford the best healthcare this made a whole lot of sense. Parents would try to reduce going to the doctors as much as possible, due to the money issue, and instead find their own ways of dealing with things like colds or other minor issues. Marte speaks on this, “Once I got hurt playing baseball. I tweaked uh..shoulder I think at sixteen. I went to the emergency room, but I don’t think I had a follow up after that.” (Marte) According to Marte there were even times when his mother had to pull him out of school to go to meetings with the assistance offices and prove that she actually had eight kids to take care of. Marte can imagine how much of a burden this must have been for his mother to go through that constantly, but it ended up being worth it for the free aid. Although, it seemed counterproductive for Marte to have been pulled out of school at the rate of what seemed like three times in one week just to prove he was alive and worthy of care.

Growing up, Marte has some stuttering issues that have continued into adulthood. He told me about it, “The only time I got it looked into was when I was in fourth grade. I was sent to a specialist by a teacher and even then they made me read off a list of 50 words. I still remember because one of the words was shit and I was like are you serious and I looked at her. She was like, do it, and I was like, okay. So, it stuck in my head all these years, and then they never followed up.” (Marte) It was really surprising to hear that Marte got tested for his speech issue, but that nothing was ever done about it. I’m assuming it’s because speech therapy can be very expensive and the family was already on assistance. However, I think it would have been good if someone at least provided the family with some kind of way to improve his speech. An example would be, maybe teaching the family to read with him or teaching certain exercises to help improve speech.

Additionally, Marte shared his experiences struggling with weight gain as a child and how that impacted his health. He elaborated, “As a youngster, my mom was overprotective, my dad was really busy so I stayed home a lot.” (Marte) Speaking more on this he told me about how the neighborhood they lived in didn’t seem safe enough to his mother, so he didn’t get to play outside like everyone else as a child. This meant that he didn’t get as much exercise as he should have to be able to keep the weight down. As a father now, Marte is doing everything he can to encourage his daughter to keep healthier habits such as walking on the treadmill. Instead of just playing on her tablet on the couch and lounging around, Marte tells her to do it while walking on the treadmill, and that way she gets her exercise in. They also make sure that she’s active through sports and she takes swimming lessons so they can go to the pool during the summer. Instead of reaching for candy, they encourage her to have healthier snacks as well since nutrition is such an important factor in health.

One thing I really enjoyed about interviewing Marte was hearing how he learned that forming healthy habits is the first step to providing good healthcare for yourself. These habits might change overtime like how Marte used to go hiking a lot in college, but now just encourages himself to park further away to get his steps in. It’s all about doing what’s right for your body and the level you are at in life and not pushing yourself to where it becomes bad for your health. Also, it’s important to take preventative care measures like how Marte learned to deal with the frequent sinus infections and asthma attacks and figure out ways to stop that from happening. It was just great to hear from someone who recognizes that health is an ever-changing cycle of your body going through something, recovering, and then trying to get back to a more balanced existence. It’s our job to be able to adjust to that cycle and our healthcare system should really educate and encourage that. (Ricardo Marte)

Recently, I had gone back to my local clinic for yet another sinus infection and as I was waiting for the doctor to see me I noticed a book on the counter. The book was called, C.R.E.A.T.I.O.N Health Discovery: Live Life to the Fullest by Des Cummings Jr., PhD with Monica Reed, MD, and Todd Chobotar. Intrigued I flipped to the back cover where it read, “Learn to Live the 8 essentials for Optimum Health, Choice, Rest, Environment, Activity, Trust, Interpersonal, Outlook, and Nutrition.” Before I left I asked my doctor if I could take the book home, she said yes, and I spent the next week tearing through the chapters intrigued by the holistic approach. I realized that this was probably the first piece of literature about health I read that didn’t seek to give you a magic pill, but instead develop a kind of lifestyle. A lifestyle where people could adopt specific habits to improve their health as simple as being active each day, eating the right food, or just getting enough rest. Simple things that everyone seems to miss out on in our fast-pace society geared towards celebrating the fleeting moments and dreading the future. (Cummings, Reed, and Chobotar)

To conclude, healthcare in the Latinx community could use some improvements in accessibility and interpreters. Clinics that cater to people of the Latinx community need to be better represented in the media so that their easier to find. Quality interpreters should be provided so that everyone understands the kind of care their getting and what the implications of that care are. People need to be educated on those little things that can be done to prevent against conditions that could get worse if not taken care of. Our body is what carries us through life, it should be treated with the respect it deserves by getting exercise, proper nutrition, and free from harsh environments. In our fast-pace society it’s easy to get lost in thinking that your body is just meant to be used up and then disposed of properly. Healthcare is so important for everyone and should be provided to everyone regardless of socioeconomic status, race, sex, or preexisting conditions. Live well and be healthy.

Works Cited

Aldape, Bertha. Interviewed by Hannah Blankenship. Institute for Human Development. April 16, 2018.

Anxiety and Depression Association of America. “Generalized Anxiety Disorder (GAD)” 2012-2013.

Des Cummings, Reed, Chobotar. “C.R.E.A.T.I.O.N Health Discovery: Live Life to the Fullest.” 2018.

El Centro. “About us.” 2018.

Institute for Human Development. “About IHD: History and Goals.” 2018.

Marte, Ricardo. Interviewed by Hannah Blankenship. University of Missouri-Kansas City. Department of Psychology. April 23, 2018.

Martinez, Gerardo. Interviewed by Hannah Blankenship. Institute for Human Development. April 16, 2018.

Silver City Health Center. “About” 2018.