A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.
Most states in the U.S. have programs that allow terminally ill patients to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures health care providers, including EMS providers, should take near the end of a patient’s life.
Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.
Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.
Through a series of interviews with five different emergency medical service agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.
“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”
That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.
She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.
But questions remained.
“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.
There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.
Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.
The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual disabilities engage in end-of-life discussions.
Since January 2016, Medicare pays for patients to have advance care planning conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with intellectual disabilities have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.
“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”
How Wearing High Heels During my Commute Helped Me to Be a Better Social Worker
Ableism is the idea that people with disabilities are not typical and are, therefore, inferior. Upon reflection, I have engaged in ableism against people with physical disabilities while on public transportation. Typically, I take public transportation during the peak hours of commuting to work between 7 a.m. and 9 a.m. and leaving work between 4p.m. and 6p.m.
There are signs on the bus indicating that when a person with a disability enters the bus they are to be given seats in the front, and people with wheelchairs or motorized chairs, walkers, canes and women with baby strollers occupy those seats. However when the bus is crowded during those peak times there is somewhat of an ‘all bets are off approach’ to seating and people tend to disregard those signs.
My example of demonstrating ableism involves a woman with a motorized chair who entered the bus one day. When she boarded the bus, everyone sitting in the front had to move towards the back to make space for her to enter and turn her chair towards the front. On this particular day, I’d had a very bad interaction with a client at work. Mentally, I was not in a good state of mind as a result.
I also had on heels which made my feet hurt from standing. Seats on either the left or the right could be used for a person with a disability, however, the woman entered the bus and immediately looked towards the right where I was sitting. I knew this meant that I, along with another woman, should stand up and make room for her. The bus was very crowded and therefore moving towards the back felt like a nearly impossible task in order to make space for the woman in the motorized chair.
Without realizing it at the time, I was perpetuating a system of oppression onto the woman with a disability. Disability studies scholar Tom Shakespeare states that society is a disabling factor in the current social model of disability. He argues that it promotes the social oppression and exclusion of people with impairments – as opposed to a focus on the impairment itself as the problem. Looking back, I recall that I was upset that the woman with the motorized chair had turned to my side of the bus and I had had to get up. This response perpetuates a cycle of oppression because I used her disability as a source of rationalizing why she should be excluded from the bus.
Although I did not say anything verbally to the woman in the motorized chair, my face and body language gave a very descriptive picture of how angry I was that I had to move. The other women that were sitting next to me were verbal with their anger and made comments such as “she should have waited for the next bus, as there’s no space” and “why do we have to move for her?” In the moment I agreed with those women and their outbursts. I was upset, tired, and in pain because of my heels. My only thoughts were selfish thoughts about wanting to get home so that I could get comfortable.
In retrospect, our attitudes were ableist because we ostracized the woman with a disability and trying to exclude her from riding the bus as everyone else was doing. I likened these feelings to feelings of the ‘survival of the fittest’; mentality that was prevalent during Darwin’s lifetime. As a recent PBS documentary discusses, people with disabilities were viewed as ‘undesirable’ and every effort was made to treat them as outsiders in society rather than practice inclusivity.
At that time, people with disabilities were not viewed as fit to be amongst abled-bodied people. As it relates back to the bus, the signs clearly acknowledged the seats were for persons with disabilities or the elderly. However, due to our own selfish reasoning and justification, we did not feel it was enough to warrant giving a seat to the woman in the motorized chair.
It is important for people to recognize their ableist nature so when situations similar to the one discussed arise they can approach it with respect and empathy rather than disdain for the person with a disability.
This essay was written by an anonymous M.S.W. Candidate at Salem State University’s School of Social Work in Salem, Massachusetts. The author may be reached on Twitter at @disabilitysw or via email at [email protected] This author’s blog posts are published at www.disabilitysocialwork.blog.
Moving Beyond “Fixing” People: Social Work Practice with People with Disabilities
Working on a boarding high-school campus, I have the opportunity to be exposed to different students. During my first year, one student, in particular, stood out. J.M. was a breakout basketball star and had dreams of going to the N.B.A.
Unfortunately, in his junior year, he was in a terrible car accident and as a result was paralyzed from the waist down. Everyone on campus was affected by his accident because J.M. was such a bright presence on campus and when he came back, he was a different person. He was less interactive on campus and lost his love for basketball.
The adults who were working with him every day were so fixated on the medical model, they wanted to “fix” him as much as they could so he could be ‘normal’ again. They suggested to his mom to take him to the best doctors who specialize helping people who are paraplegic learn to walk through virtual reality. They were not focused on his direct needs because they did not ask him, and that was detrimental to his recovery.
In using the social-model informed practice, the adults working with J.M. should have discussed with him how he saw his recovery going. By placing the focus on him rather than his disability, J.M.’s confidence in recovering could have been more positive than negative. Indeed, disability studies scholar Tom Shakespeare discusses the importance of focusing on the individual and not the impairment in order to create a confident space.
One of the limits in the social model approach, Shakespeare says, is the idea that individuals with disabilities should disregard their impairments. More specifically, the social model disavows both individual and medical approaches so much that it actually risks the suggestion that impairments are not the problem!
The medical model is helpful when we are utilizing action practices that are suggested by the person with the disability and not the people around them who are looking at it like a problem that needs to be corrected. As social workers, it will only benefit the clients we are working with if we are their advocates and find a balance between the medical model and the social model.
This essay was originally prepared for Dr. Elspeth Slayter’s social work practice with people with disabilities course at Salem State University’s School of Social Work Graduate students were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability.
Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:
“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”
How Disability Culture Can Inform Mentoring Girls with Disabilities
I am a social work intern at the Big Sister Association of Boston. This is a unique organization, as it is the only gender-specific branch of Big Brother Big Sister in the United States. This is also an important fact as research suggests that girls experience mentoring relationships differently than boys do.
Additionally, research suggests that girls have gender-specific needs that can best be addressed by gender-sensitive support. One of the values of the Big Sister Association of Boston is cultural responsiveness, as the agency finds it important to learn about and embrace cultural differences – and this is where Disability culture comes in.
Disability social workers Romel Mackelprang and Richard Salsgiver discuss the emergence of Disability culture and assert that it is not only an identity but a ‘way of life,’ similar to race or ethnicity. I feel that it is critical that when conceptualizing how to be cultural responsive that Big Sister mentors keep Disability in mind as a type of culture. Recognizing Disability culture is important because we work with Little Sisters ages seven through twenty, as well as volunteer Big Sisters over the age of eighteen, and any of these girls and women may have a disability.
In addition to being aware of the language and history of Disability culture in order to show respect, we must also understand that there is a community aspect of Disability culture that can have great social benefits for the people we work with. The goal of our mentoring program is to strategically match girls with mentors who have similar interests and experiences as them. Therefore, making an effort to match girls and mentors with disabilities can have the added benefit of sharing an understanding of a common experience and culture, therefore making the match relationship even more impactful.
In their book, Romel Mackelprang and Richard Salsgiver share the story of Carolyn and Marnie, two women who met and “developed a sisterhood formed from shared circumstances….their self-concepts and meanings they ascribed to their disabilities were similar.” Further, the authors note that Carloyn and Marnie had “few or no role models with disabilities, their disabilities were defined as negative, shameful…were isolated from others like themselves.”
The concepts of sisterhood and community are two more of the Big Sister Association of Boston’s values, and increased confidence is an outcome goal held by the program. As the relationship between women can be so powerful, it is important that Big Sister staff recognize this potential and thoughtfully seek to make matches between women and girls who share experiences as people with disabilities.
Big Sister Association of Boston values gender-specific programming, and it is important that this specificity carries over when thinking even further about what it means to not only be a girl, but to the intersection of being a girl with a disability in our society.
One way that Big Sister staff can work on developing knowledge about Disability culture as it relates to girls could be perusing the Gimp Girl website. As a refresher, the Georgetown Health Policy Institute defines cultural competence as “the ability of providers and organizations to effectively deliver health care services that meet the social, cultural, and linguistic needs of patients.”
The Gimp Girl website can be used as a resource for Big Sister staff to assist them in the task of continuously working on their cultural competence by becoming fully informed about the views and needs of girls with disabilities in particular. As a non-disabled person, I have permission to access articles and presentations on the site and join their online public forums. The website also includes links to many blogs written by and for girls with disabilities, which can raise awareness of the most current issues and interests of this particular community.
Tuning into Gimp Girl can help me practice cultural responsiveness by making me aware of the issues and concerns of interest to this population in order to most effectively meet the needs of girls with disabilities in a respectful and accessible way. Realizing that some people might prefer the term ‘gimp’ to the term ‘disabled’ might be important for Big Sister staff to realize vis-à-vis the debate between whether to use person first or disability first language.
The website will also help staff to practice cultural humility by reminding them that girls with disabilities have distinct and individual needs, as they describe what it means to experience the intersection of gender identity and disability. Reading about girls’ varying experiences will encourage Big Sister staff to consistently check their own biases and assumptions as well as maintain their position as learners when interacting with girls.
In addition to increasing any given Big Sister staff members’ knowledge and awareness about Disability culture, staff will also be able to share this website with Little Sisters if they are not familiar with it. Our agency constantly provides Big Sisters with information, resources, and activities they can use when spending time with their ‘Littles,’ and this website could be a great resource.
Big Sisters could explore the website with their Littles to find blogs that their Littles can relate to, or even help Littles join a Support Meeting in the online chat room. I think this resource is something that can benefit all of our staff and the girls and women we serve – and perhaps this will be true for you as well!
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