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.”
Four Ways Neurodiversity Holds the Key to the Future of Special Education
For ages, special education has been developing on its own, together with the development of ordinary education. It emphasizes disorders and the ways special education students are lacking compared to an average student. Those who have a noticeable dysfunction have even been mocked for their lack of focus or skill to learn something – sometimes by teachers too.
And even though the history of the special education has been filled with inappropriate names and terms, the future is bright. More and more scientists and educators are turning to the better ways of conducting special education – and one of those ways is related to neurodiversity.
This term was first used by journalist Harvey Blume in the early 1990s and means that autism, ADHD, dyslexia, and other special-needs conditions are the part of normal variations in the human population. And here is how neurodiversity changes the entire special education system.
1. In theory.
Special education as it is at the moment regards disability categories as something originated from biology, genetics, and neurology. Neurodiversity, on the other hand, focuses on the advantages these disabilities have to offer – they use this to explain why these genes are still here today and why people are still born with disabilities.
This new concept examines how a person with a disability can be lacking in some aspects but even more advanced than regular people in some. During the past decade, university programs such as London School of Economics’ Dyslexia and Neurodiversity program, or the College of William & Mary’s Neurodiversity Initiative are aimed to support neurodiverse students and create positive acceptance and niches for them.
Annabel Gray, neurodiversity specialist and educator at Origin Writings states, “Regarding a person as completely disabled is fundamentally wrong. Whereas a person with, for example, autism can be lacking in some areas of life, on a job which requires focus and attention to detail, this same person would do outstandingly well.”
2. The focus.
The focus of special education so far has been solely on assessing deficits and how to go about educating students based on these deficits. However, neurodiversity relies more on assessing the strengths, talents, abilities, and interests of disabled students. It is a strength-based approach where an educator would use a series of tests to discover the student’s abilities and teach them how to use them to tackle their everyday and educational challenges.
What is so great about neurodiversity approach is it gives the students all the necessary tools to cope with their day to day life by focusing on what they do best. This way the students are not feeling left out and they know there are some things where they can thrive in.
Workarounds are another way the neurodiversity improves the disabled students’ lives. What it essentially means is the educators are supposed to find ways for students to experience and learn which does not include their disabilities. For example, students with ADHD could be allowed to use special tools like stability balls or standing desks in order to focus on studying.
This could be expanded to create an individual education plan for each student based on what they need and in which environment they thrive the most. Placing those students in the traditional learning environment will help them to feel “lesser human being” or a burden.
Lila Christie, an educator at 1Day2Write and WriteMyX confirms: “Workarounds are some of the best ways of teaching the disabled students. We implement this strategy of putting each student in an environment that will allow them to learn without anything in the way. It not only works but also gives students the satisfaction and comfort.”
4. How to communicate with students.
While most special education programs still teach children about their disabilities, neurodiversity teaches them about the value of variation and being different. It teaches them how their brain works and how the environment affects it, how to use their skills to the maximum etc. This kind of mindset can help them realize the growth mindset can improve their performance.
To get the brain to its full potential it is important to get the students exercising in various ways, each suited to their own abilities – writing exercises are excellent ways to improve brain power and it can be easily accessible to students through tools such as Dragon NaturallySpeaking, Windows Speech Recognition, etc.
Neurodiversity is a great new approach to special education. It gives students opportunities and new ways of understanding themselves. This is a fresh take on educating those with disabilities – in fact, it relies more on their abilities and strengths. It can give students confidence and tools to be successful and do more later in their lives.
How Reflecting on My Choice to do Prenatal Tests Made Me a Better Social Worker
My professor asked me to reflect on the ways in which I have engaged in ableism as a social work student. While I could not think of a professional instance, I was able to reflect back on my personal life about a time that I did engage in ableism. Recently, I gave birth to my son, my first child, back in January of this year.
Toward the beginning of my pregnancy, I believe around week 12, the obstetrician sat me down and started to discuss optional screenings that they could do that would determine whether the baby had any disabilities, such as Down Syndrome. As soon as she started explaining all the different tests, I knew I was going to choose to have at least one done. In the end, I chose one of the least invasive but more accurate tests.
Whenever someone asked why I was getting the test (as I wasn’t high risk, and am on the younger side), I would tell them I just wanted to be able to be prepared. I told them that I wanted to be able to prepare my house or to get necessary equipment or other things that might be needed by my child.
However, leading up to the test I began to have dreams about getting ‘bad news’ from the doctor. I also had dreams in which my doctor told me that there was ‘something wrong’ with my baby. I started to realize that it wasn’t my house that I would have to prepare, it would have to be myself!
Slowly, I came to the understanding that if I got the news that my child had a disability, I would need some time to process and accept that news. I think that I struggled with the belief that my child would have a ‘lesser life’ if they were born with a disability. In addition, I think that a part of my process would have been going through the grieving process as I would have been grieving the ‘perfect child’ that I imagine many pregnant women imagine when they first find out they are pregnant.
In my readings for my course on social work practice with people with disabilities, I learned how genetic testing connects to the medical model of disability. As my textbook discussed, the testing and the possible results were only presented to me by my medical team through a medical model lens, versus a social model of disability lens.
My medical team informed me of the genetic reasoning behind any of the possible disabilities that could be discovered but did not include any information regarding what my child’s life would be like if the test was positive. It would have been beneficial to hear about the lives of people living with some of the disabilities.
This could have possibly calmed my nerves as well as avoided my ableist thinking. My hope is that for patients who do have a positive test, their medical team can learn to sit down with them and go into further detail about what a child’s life will and can look like. I think this could help a parent-to-be process that news in a not-so-negative way. I believe that a discussion like this could help patients understand that the only options are not abortion or a child with a ‘lesser life.’
As a social work professional, it is important to always reflect on and examine our own ableism. In our society, we have been witness to countless ableist thoughts and beliefs throughout our lives. These beliefs become the standard way of thinking and affect our interactions with people with disabilities.
Therefore, it is essential for a social worker to reflect on their own ableist thoughts and practices in order to be able to change their way of thinking – and practicing! Once the social worker is able to do this work, their practice with people with disabilities has the potential to be so much more valuable.
On Stacking Books in the Library, and Undoing My Own Ableism
My first job right out of high school was working in a public library. I was one of three library pages who would put books away in order to maintain the bookshelves. A majority of the library staff watched me grow up in that building, and I was given my first opportunity at an internship the year before. I was very bonded to the staff and to the building itself. Working there reminded me a great deal of my childhood.
“Violet” was one of the book pages I worked alongside. For as long as I can remember, she had always worked at the library, it was almost as if she came with the building. Violet retired the year the building was given a grant to be rebuilt, which I always found to be appropriate timing. As a child, I could always count on Violet to be in the fiction section of the library.
Walking in, I knew I would find her pursing her lips and mumbling to herself while she put the cart of books away. Typically, she would stop me, and let me know I looked just like my mother and would then ask after her, right before complimenting me for the season I reminded her of, Autumn. By the time I began to work at the library, Violet was an elderly woman. She would come into the library every morning at 8:45 a.m. with fifteen minutes to spare, so she could sit on the ratty old orange couch in the staff lounge for ten minutes and then spend the last five minutes greeting staff as they came in before getting to her book cart.
Violet was meticulous at keeping time and budgeted herself to shelving two carts for the three hours she would work every day. Some days she was overly ambitious and was able to complete two and a half carts, but that was rare. Once she finished her shift she would grab her things from the staff lounge and go home. Later I learned Violet had a schedule she followed daily, consisting of breakfast at the Tea Cup Café, a walk to work, completion of her shift and then a return to the Tea Cup Café before going home. She lived alone and had a visiting nurse who would come to her home twice a day, once in the morning and once in the afternoon.
Once I had gotten really efficient at keeping my shelves well maintained, I would go down and help Violet with her books. At this point, I was shelving three to four carts an hour. Many times, I would put Violet’s books in alphabetical order for her on the cart so all she had to do was shelve while I walked around after her and fixed her shelves to make them look as “fronted and faced” as mine.
After several weeks of doing this, I was taken aside by my supervisor and asked that I not help Violet because Violet was capable of doing her own work and she took the time she did because she had schizophrenia. I was not aware of this, and always felt I was doing what was “right” because Violet was elderly and honestly, seemed to me to present as not very aware of her surroundings. It wasn’t until I was told of Violet having a diagnosis of schizophrenia that I realized why she presented the way she did.
I learned later on that she had been institutionalized for many years as a young woman until her brother and sister were old enough to discharge her from the facility she was in. Violet came from a time where health practitioners believed it was best to lock away persons with disabilities and forget them. This process is consistent with the manifestation of oppression through what is referred to by disability advocates as ‘containment.’ Society would rather hide Violet away than have her become a productive member of society or teach her skills because her life was less valuable than that of a person without a disability.
Violet and I never discussed her past or her diagnoses for the four years she and I worked together. After learning of Violet’s diagnosis, I realized I had been practicing ableism by doing her work for her and immediately stopped. I was not allowing Violet to do the work she was capable of because I assumed she couldn’t do it. Following this incident, I learned to ask before assisting her because I wanted to ensure I was respecting her ability to work at her own pace and do what she had been doing for thirty plus years.
The irony of it all is my brother has schizophrenia and it wasn’t until I met Violet. that I realized the importance and effectiveness of a routine but also, knowing Violate gave me hope that my brother might someday find himself in a similar position where he could function independently from my parent’s care.
The last year I worked at the library, Violet could no longer live independently due to needing around the clock assistance and eventually moved to a nursing home where she passed away some years ago. Every so often I visit the library and think of the woman who taught me about resiliency but also gave me a perspective that I keep with me always.
Let People Who are Non-Verbal Communicate in their Own Way: A Social Work Challenge
While working at a disability group home agency, I came to know“ Jane,” a person with Rett Syndrome. Jane was non-verbal and was unable to walk independently. She used a specialized walker to move around. In addition, she developed her own sign language in order to communicate. During the day, Jane would attend a day program which gave all nonverbal clients computers that had the “Picture Exchange Communication System (PECS)” system on it.
Jane was required to use it at the day program and was also encouraged to continue using it at the group home. Yet, when Jane would take home the computer, she would leave it in her bedroom. Jane did this because she didn’t like it and was comfortable with her own form of communication. The day program became insistent on Jane using the computer at home, so the director insisted Jane use the form of communication provided to her. Jane refused to use the computer and threw it across the room because she was so upset about being asked to do so. The day program still required Jane to use the computer while at the day program, however, once she was in her home she didn’t use it and the staff did not force her to do so.
As a social worker, I would first ask whether Jane wanted to use the PECS system. When disability studies scholar Tom Shakespeare was discussing the social model of disability which infers society is disabling versus the person who is disabled. He argued the idea of this practice is to make society adapt to people with disabilities which would include allowing for people’s own communication choice to be honored or it could include providing accommodations like the PECS system for non-verbal clients. One of the barriers of the social model of disability is trying to make accommodations for people with disabilities without choice.
The PECS system might work well for one client who is non-verbal, but it did not suit Jane and she did not want to use it. Shakespeare described limitations with the social model-informed practice as assuming there could be a “utopia” for people with disabilities as there would be no barriers. People with disabilities do not all function or adapt the same way so it is unrealistic to be able to accommodate everyone and it is insulting to force accommodations on people with disabilities if they do not want to utilize that specific accommodation.
If Jane was given the option to use or not use the PECS system, it would be realizing the social model-informed practice because society is making the change and not expecting her to change. By forcing the PECS system on Jane, it is reverting back to the medical model practice because the program is making Jane adjust instead of learning Jane’s sign language.
Jane also used a specialized walker. I would engage in medical model-informed practice (where the focus is on the impairment that leads to disability) by acknowledging it was Jane’s body part that was impaired, and therefore disabled her. This is another limitation of the social model-informed practice.
As social model-informed practice is so focused on society being the barrier that it does not always acknowledge that a person’s body can also be the barrier. The medical model-informed practice is what helped Jane receive the specialized walker because Jane’s body was the barrier and she wanted to walk as independently as she could. The social model-informed practice can also be used by ensuring there are ramps for Jane so she can have easy accessibility.
From the macro level of social work, I believe we are on the right track with the social-model informed practice. However, this model is not complex enough to include everyone. Intersectionality does not seem to be taken into consideration with this model, which is a complicating and limiting factor.
A strong model needs to be developed to acknowledge the complexities of people and their disabilities. A person’s environment, gender, race and other social identities need to be considered when developing models which was not the case since the group of activists who rallied for this model were white heterosexual men.
The first step to be taken by every social worker should be to ask the person with the disability “what can be done to support you?” or “what do you believe needs to be changed so you do not continue to feel oppressed or feel like your voice is not being heard?”
Language Is Power: Two Things You Need to Know for Practice with Disabled People
Did you know that over one fifth of the United States population has an impairment that leads to a disability? Given this, social workers are bound to engage in practice with disabled people across many service sectors – a reality which leads to the need for disability competence – and that includes competence around language choices.
Whether you are working in child welfare, employee assistance programs, criminal justice or end-of-life care, you will need some guidance on how to approach your work with disabled people in a respectful manner. Here are two helpful things you need to know to be a better social worker in partnership with disabled people.
First, it is always ideal to look to your professional association for guidance. In the case of practice with the disability community, the National Association of Social Workers not only has a disability policy statement, but they also have made a major change to their Code of Ethics (CoE).
The CoE is the guidepost in our profession, and in setting out standards for practice, it names a series of diversity factors, including, for example, race, ethnicity and national origin. Until the most recent revision of the CoE however, disability was the only diversity factor that was not framed in a positive light.
To rectify this, the current version of the CoE replaces the term “disability” with “ability” in order to present a more strength-based framework that can counteract dominant society norms that belie the capacities of disabled people. Specifically, the CoE states that social workers should “obtain education and seek to understand the nature of social diversity and oppression” with respect to people with varying abilities.
While this may be a turn off to people that embrace identity-first language (i.e. disabled people vs. people with disabilities), as a disabled person, I believe that this simple change is helpful, and does not fall into the camp of widely-rejected, outdated and offensive terms such as “differently abled,” “handicapped,” or “special needs” that are often used by well-intentioned people. Check out, for example, Lydia X. Z. Brown’s glossary of ableist phrases.
Second, it is also always a best practice to learn more about the language preferences from our clients’ cultural communities. Lately, not a day goes by on my Twitter feed when I don’t see commentary from disabled people about their preferences for either person-first language or identity-first language.
Check out the #identityfirst hashtag, for example. For many years, social workers were encouraged to use person-first language as a way of showing respect, as opposed to labeling someone as “a schizophrenic,” or “autistic,” for example, both of which were felt to have negative connotations at the time.
Proponents of identity-first language have reclaimed such terms by embracing their disability identity first. For example, a well-known disability rights leader prefers to be called Autistic, and another advocate prefers to be referred to as mad (signifying mental illness).
For social workers new to practice with disabled people, an ideal approach could involve using approaches interchangeably until it is clear what type of language is preferred by the client in question. Remember, language is a key component to client engagement, and, therefore, language is power.
Regardless of whether you are identifying populations with varying abilities, or honoring your clients’ wishes for person-first or identity-first language, the most important thing is to see people for who they are, not for the stereotypes or assumptions that often precede them.
Scottish Journal For Residential Care: Final Call for Views and Experiences of Disability
The Scottish Journal of Residential Child Care (SJRCC) is inviting submissions for a special themed issue on disability to be published in December 2018.
We are seeking ideas for papers now on any aspect of disability and residential child care – or indeed any aspect of care, or leaving care. We’d like to hear from academics, from people involved in caregiving, and from young people reflecting on their own experience of care and disability.
Although published here in Scotland, the Journal has an international outlook. And this makes sense because concerns about the welfare of children in care is a global one, and international comparison provides us all with an opportunity to develop research, policy, and practice.
We’re always looking for contributors from across the globe to share their wide and varied experience – from practitioners, managers, researchers, and policy folk, to young people with experience of the care system.
Papers from countries other than Scotland are particularly welcome.
If you would like to be considered, please email our Guest Editors by Wednesday 31 January: email@example.com. You will need to provide:
- a paragraph with your ideas
- five keywords
- your brief biograph (maximum 70 words).
Brief for contributors
- Academic papers of up to 6000 words in length
- Practice accounts of up to 2000 words in length
- Using everyday life activities with individuals with disabilities
- ‘Breakthrough’ moments when someone showed surprising potential
- Reflections on situations which helped a fuller understanding of someone’s needs
- Creating positive environments
- Changing approaches – working therapeutically.
Open call: submit your ideas and work to the journal
We welcome and publish a real variety of articles and papers on all topics related to residential child care.
- Peer-reviewed academic papers
- Short reflections or commentaries on research, policy or practice
- Methodological papers from doctoral studies
- Accounts of relevant conferences
- Book reviews
For more details, download our submission pack.
The Scottish Journal of Residential Child Care is a peer-reviewed, open access e-journal which aims to provide a rich forum for debate and dissemination about the topical issues in residential child care research, policy and practice.
The topics covered are wide-ranging and relate to all aspects of residential childcare, including the interface between residential care and other contexts, such as health, education and other care settings, as well as topics relating to children’s wellbeing in public care.
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