Tag: barriers to accessing service


Jul
2016

Epilepsy

categories: Epilepsy

I am a family member of a brother with epilepsy. I am not from the U. S. I have always wondered why there isn’t any help for people with epilepsy in my Image of a man’s face with lighting on his forehead country. I thought once people were found to be disabled or epileptic, they are seen as different. I thought there is nothing to be done for them.

Once in the U.S, I learned people with epilepsy have places to go. I learned help is given to them correctly. I plan on learning best training ways and ideas. I will apply them in my home country. I want to study what local and state groups offer. I want to find out how better services can be given to people with epilepsy.

I am now an agent who has worked in the disability field for a while. I came to realize there are gaps in the ways disabilities are seen. I decided to do more research to understand the difference in epilepsy aids and healing. I will then present my thoughts and next steps.

For more information and resources: Epilepsy Fact Sheet


Jul
2015

Cultural Understanding in Health Care

categories: Health

Multiracial hands making a circle together around the world glob

What is Culture?

Culture refers to a group of people with shared beliefs, knowledge, ideas, experiences, and maybe language. Culture is not limited to racial and ethnic groups. There can be professional, political, religious, organizational, and social groups. Culture is complex with many layers. It brings together every part of one’s life.

Why is Cultural Understanding Important in Health Care?

Culturally-informed care should be the standard and not the exception in the health-care field. For many minority groups (Asians, African Americans, Hispanics/Latinos), language and cultural differences are difficulties in the health care system. Cultural understanding is important in helping families gain access to quality health care services. It is important then that health care providers deliver care that knows, respects, and welcomes these cultural differences (National Institute of Health, 2014).

How is Cultural Understanding Related to Quality Speech-Language Services?

People from different cultures may speak different languages and dialects. As a speech-language pathologist (SLP), I am interested in working with children who grow up in a bilingual home. Language is more than the words that come out of one’s mouth. It includes facial cues; social aspects; word meaning; hand and body movements; tones and rhythm. These are all highly influenced by one’s culture. For example, Asian children are told that it is rude to make eye-contact with an adult. But Americans think eye contact is a sign of attention and respect (Cheng, 1991). It is important that SLPs understand their client’s background in order to make correct diagnoses, and to provide appropriate treatment.

How Can We Be Culturally and Linguistically Sensitive?

  1. Learn more about the local community that you serve. Cultural understanding does not mean that you need to be a fluent speaker of the language. Research the local community’s religions, beliefs, lifestyles, languages, traditions, etc. This knowledge will help you provide culturally informed care.
  2. Use simple terms. Even if the person appears to speak and understand English well, it is always best to use simple language. Unclear or high-level words are hard to translate and the meaning can get lost. For example, instead of “his scores are low compared to the norm” you can simply and clearly say “his scores are low compared to other kids his age”.
  3. Work with interpreters to translate your websites, pamphlets and flyers. You will have great visual aids to use and refer to when counseling individuals. Most importantly, your patients and clients will now have easy access to these educational resources!

Helpful Resources


May
2015

Mental Illness: “In Our Own Voice”

categories: Mental Illness
Woman raising arms with confidence
Woman raising arms with confidence

Background

Mental or emotional problems are the fourth leading cause of disability in the United States.1 Most people with mental illness can see real improvements with the right treatment. Some mental illnesses are even preventable. Unfortunately, access to services is a big problem. Adding to that, we are often afraid of people with mental illness because of stereotypes shown in the news. A general lack of information, especially when it comes to treatment and recovery, also plays into this fear.

Uncovering Mental Illness

Last spring, I had saw a presentation called “In Our Own Voice” by the National Alliance on Mental Illness (NAMI). Local NAMI chapters run this program in their communities, often at high schools and colleges. Each presentation is led by two people in recovery from a serious mental illness. They aim to reduce the fear and stigma linked to mental illness by sharing their experience.

“In Our Own Voice” is broken up into five segments:

  • Dark days (the hardest part of their struggle with mental illness)
  • Acceptance (how they learned to accept their mental illness as an important step on their path to recovery)
  • Treatment (the specific treatment plans that have worked for them)
  • Coping Strategies (strategies that have helped them achieve and maintain mental wellness)
  • Successes, hopes, and dreams (reflections on success and goals for the future)

Each segment starts with a video clip of several people with mental illness telling their stories. NAMI presenters pause the video in between each segment and share their own stories.

My Experience

“In Our Own Voice” was an eye-opening and uplifting presentation. I noticed that everyone had a unique story, but there were many common themes. For example, most had a hard time accepting their illness. It was also really hard for them to find the right providers, medications or therapies. Finding the right plan often took years of trying doctors and treatments that didn’t work. Some struggled with family relationships and lost those relationships altogether. Many found the unconditional love of a pet to be really valuable. Everyone had successes to share and hope for the future.

I felt that the program empowered the audience with new perspective. We also had the rare opportunity of being able to ask any questions we had about mental illness in a setting where this was encouraged and expected. It was clear that the presentation also empowers the NAMI presenters because they know that they are making a difference by sharing their stories. As awareness spreads, hopefully this will lead to better access to services and more people can live in recovery.

More information about the National Alliance on Mental Illness and the “In Our Own Voice” program.

1 Brault, M. Americans with disabilities: 2005, current population reports, P70-117, Washington, DC: US Census Bureau; 2008.


Jul
2014

Social Capital, Disability, and Healthcare

categories: Health

several hands of different sizes and colorsI’m sitting in my office with my patient, who is a young girl with significant learning disabilities, and her mother. Since the last time I saw them six months ago, she continues to struggle with academic progress and behavioral problems at home. At our last visit, I had provided her mother with a list of recommendations: 1) have the school repeat assessments, 2) obtain in-home therapy supports, and 3) enroll in after-school programming. I ask her mother about each of these recommendations, and feel my shoulders drop as she explains why she was not able to complete them.

I am a pediatrician primarily working with children who have developmental disabilities and their families. For my patient, my recommendations alone were insufficient to improve her well-being. Why is it that some patients are able to access necessary health-related services and others are not? Aside from the more obvious logistical barriers (e.g., insurance, transportation, time), an individual’s social capital influences access and health-related outcomes. Although the definition of social capital varies, there are two key components: 1) relationships and social structures that are based in trust and norms of reciprocity, and 2) self-determination encompassing goal-setting and making decisions to work toward reaching goals. For individuals with disabilities and their families, social capital influences their ability to be fully included within the community, access social supports, and increase their quality of life.

As I delve deeper into this particular visit, I appreciate that the child and her mother depend upon a handful of neighbors to help them out, and they do not have much social connections outside of this immediate network. Their native language is not English and her mother is not confident that she is able to communicate effectively with the school or healthcare systems. Mother and child both feel disempowered to change their long-term outcome, instead trying to overcome everyday obstacles.

As it relates to health outcomes, social capital might influence an individual’s access to health relevant information, the degree of informal support in situations of illness, and the ability to self-advocate for health-promoting services/supports. For this visit, I take a step back and address these points. I discuss how she (the parent) might access information on learning disabilities, as well as information on potential services that target her child’s learning disabilities. We work through the informal system of supports that are present and discuss how it can be strengthened. For example, might it help to go with someone the mother already has a relationship with to the school to request for additional testing. We also discuss how new supports might be made with other groups of individuals. Finally, I help my patient and her mother define their own set of goals and the steps that they would take to attain those goals. I end this visit with no recommendations, only having tried to help this family think through how to build social capital.