Parents or individuals with disabilities who visit the doctor’s office seeking medical support are usually there because (just like the non-disabled) they have tried OTC drugs or home remedies in vain. Children with disabilities that impact communication or communicate in a different way than the physician require additional time and or support. Plan for it and make the rest of your team aware as well. Rushing will not help and perhaps make the situation much worse. As in the non-disabled population- there is a sense of urgency because of the concern for the person’s safety and health. Dynamics of interaction between caregiver, individual and physician need to take into consideration that this visit might very well be the beginning of a new grieving cycle or continuation of a concern for the future. My behavior as a parent of this child should be perceived as a concerned parent-one who has to interpret the “difficult to interpret” behaviors of the individual. Trust my judgment. I am coming to you because my other options are either not there or have been tried. I am not neurotic, overly protective…But then again I am not neurotic and overly protective…Persons who have cognitive disabilities might not present immediately as such. Where as physical disabilities are visible. Be aware that additional means of communication supports are necessary (visual and physical ways in addition to talking). Imagine being a child with chronic pain and not being able to tell anyone or even know what the word pain means. That individual will need other words, pictures, and means to help give that information. Behaviors that have been interpreted as ‘non-compliant’ might very well be a reaction to pain that has never been diagnosed. A physician who connects with their patients seems to be one that can have a sense of empathy with a patient. Establishing a rapport with person who communicates differently is not impossible but different.
My first experience with a pediatrician who was someone that was outside of the circle of physicians that were involved in his initial diagnosis – was a pediatrician at the clinic. He was a resident and determined to work with my son as if he was a typical child. He ended up having to use force on my child. It was awful, he hurt my child, was abrupt, clinical and we were out of there in less than 10 minutes. It was all very efficient. I hated it- my son hated it – the exam took precedence over the patient. The product became more important than the process. The patient interaction was lost in abandon for practice.
Initially, I shared that my son had autism, he looked at me and said “ok” and proceeded with the exam. The more insistent he became the more aggressive my son became.
It ended up in a wrestling match but the doctor won because he was bigger, and could talk and had the help of a medical assistant and a nurse. – What a jerk.
My son has the right to dignified treatment and just because he cannot communicate is no reason he is expected to be at the mercy of unknowledgeable practitioners. There is a certain level of uncertainty, fear, arrogance, and hesitation in the medical field that some folks try to mask. I would rather be given the respect for my son and have someone be clumsy, slow and awkward in order to provide respect.
I learned that I did not have to take that type of treatment and I could report someone for that kind of treatment. I learned that I could do this and I did. I also learned that being an advocate puts you in a strange relationship with professionals when you do this. I have learned it is far better to be on the proactive side rather the reactive side.
Recent visits with Dr. Parrott, Glaser and Mason have shown me that these people want to understand my child who can’t communicate. They take the time, extra time, get to know his interests and needs to allow him to be comfortable. Jay actually sits on these folk’s laps and acknowledges them in other environments outside of the health care facility. I am not asking that the physicians sacrifice best or comprehensive assessments in lieu of giving my son free reign. I am simply asking to find some sort of balance in the middle.
Approaches that a physician has to working with persons with disabilities are influenced by their pre-service/ medical school experiences and/or by the experiences they have in their lives. Medicine attempts to “fix” someone and the reality of someone with a disability is that sometimes the physician is not able to fix the person.
I learned that people are “where they are” at by virtue of their values and beliefs, but individual experiences that either reinforce or negate those beliefs can influence change.
Physicians are people too.
In the past 7 years I have found there to be a significant increase in the diagnosis of individuals with autism. I have even heard it called “the diagnosis du jour”
The medical community has heightened awareness of the diagnosis. I am not sure if the increased awareness is due to true understanding of the complexities of the disorder, the outcry from parents or all the questions that surround the etiology of ASD. Regardless there is increased awareness of the diagnosis with accompanying increased disagreement regarding causes, effective treatment and interventions.
It seems that it is a disability that brings great conflict between parents, physicians and educators because of all the unknowns.
I think this has influenced how I am treated as a parent when I accompany my child to a doctor’s appointment. There are lots of alternative treatments being investigated by both families and the medical community (everything from a special diet, to a special approach to teaching language, to a unique communication system and others). There is even some differing opinion in regards to the way that a diagnosis is obtained. There is no unified approach and still lots of questions.
How have physicians been obstacles in this type of environment in regards to a person with a disability?
The whole issue of family centered care and family with a special needs member requires all the same values. It is in the implementation of the process where it becomes necessary to “think outside of the box”. This is difficult when there are protocols and procedures mandated by a specific system. It most likely challenges all consumers because of the impact when the two systems impact. I can see how the state of the system causes great frustration. Doctors want to help people, do no harm, cure and keep people well. This is a very humanistic system of people helping people-juxtaposed to a system that places a dollar value on people’s ability to pay, level of care required and values placed on different subgroups of society (elderly, poor, disabled). The whole equation becomes very convoluted.
Physicians have been helpful in understanding the process and helping us to access resources. Physicians can help by valuing my son. Also physicians can help by teaching families how to navigate the system.
A Physician can be an obstacle or a support to a person with a disability based on the basic values that they place on this person’s life and member of society.
I see the type of preventative medical health care my son receives as adequate but I do feel that if he were to have significant health concerns along with the autism that the system we have experienced would not be able to meet his needs.
How are you, the caregiver, perceived in the team by the medical staff when you accompany your child to the doctor’s office? Are your comments listened to? Respected? Taken into consideration when planning care?
This is an interesting question in that I am guessing I am treated differently as a middle class, white, educated, female, health care consumer and compared to a parent who is poor and who has not had the opportunities I have had.
I think I am treated differently because of this and the level of care my son receives is also impacted by this.
When we were foster parents to our other child through the SNAP (special needs adoption program) and our son had a medical card we were served in another clinic within the same facility. This clinic had a different “feel” to it – – I do feel I was respected when I accompanied my child to the doctor’s office but I think that was because of the way I present myself.
See What Happened
Secure on table
The doctor has a solution to making Mr. Johnson secure (i.e., placing the PCA on the other side of the table), but he also checks with Mr. Johnson to make sure that this solution is OK.
Note how the doctor explains the procedures he will use and the fact that Mr. Johnson may experience some pain in the examination.
Note: It would have been prudent during this portion of the exam to elevate Bryan’s head with an additional pillow to help prevent coughing and/or chocking, and simply increase his comfort.
In a true partnership all parties work together for a common outcome. As part of the partnership, the healthcare provider should listen to both the caregiver (parent) and the child. A parent will know the child the best; they will be a source of information regarding the child. In many cases the parent will know important medical testing that should be done based upon research that is ongoing in the area of the particular disability. They should not be afraid to ask questions. However, the healthcare provider must also accept the responsibility of doing research into disability specific issues. For example, individuals with Down syndrome must have their thyroid function checked regularly; there is a strong correlation with Down syndrome and thyroid disease. Vision and hearing should also be checked periodically.
The healthcare professional must also be able to make recommendations concerning the individual’s placement within the community. In Julia’s case this would be for the least restrictive environment in the educational setting. The healthcare provider should also be able to serve as an advocate to ensure the individual has access to additional healthcare as indicated. This includes therapies, medications, assessments, etc.
See What Happened
Assessment & Planning
The clinician includes both Julia and her mom in reviewing Julia’s progress on the growth chart. This interaction helps to initiate nutritional counseling, which is often indicated for children with Down syndrome.
NOTE: This movie models one correct approach to this situation. There are many correct ways to interact with patients. Use what you have seen to improve provider-patient communication.
WHAT IS A PCA? WHAT DO THEY DO?
Many persons with severe disabilities and the elderly employ Personal Care Attendants/Assistants* (PCAs) to assist them with activities of daily living. The PCA’s job is to help a person with a disability in a variety of tasks which that person is either unable to perform on his or her own, or is only able to perform with great deal of effort.
Persons with disabilities frequently use PCAs for dressing, grooming and hygiene, mobility and transfers, toileting and health maintenance, use of communication devices and assistance with interpreting verbal and non verbal interactions, as well as light housekeeping and miscellaneous tasks such as writing and running errands.
It is important to remember that the role of the PCA is to assist the person with the disability in the way that person sees fit. The PCA’s role, however, should not be to make decisions for, or speak for the person in their care. Healthcare providers should direct their questions to individual requesting service. The only time that the PCA should speak for the person is when the interpretation is required, such as in sign language use, or when severe cognitive impairment precludes meaningful communication. Personal care assistants also may help others speak with the person by instructing them in the use of assistive communication devices.
*The title of the Personal Care Attendant is being replaced within the discipline by personal assistant as this more positively and accurately reflects the functional support provided by such individuals.
See Personal Care Attendants/Personal Assistants resource document for additional information and references.
In The Exam Room
A WORD FROM KEVIN
Hello, I am Kevin Burberry. I played “Bryan”. The interactive video in which you have just participated actually depicts two problematic areas faced by a person with a severe disability at a doctor’s office, namely the ability to be understood with clarity and the physical aspects of the examining room.
Every person has the need to be understood in a clear and concise manner, and nowhere is this need more present than in a doctor’s office. If the patient is not allowed a productive way of expressing themselves, then they cannot be properly treated. Therefore, if patient who is nonverbal comes into examining room, it is incumbent upon the doctor to put them at ease and let them formulate their responses. Such accommodating should include obtaining a brief lesson on how the person communicates, talking directly to the patient, and allowing them enough time to answer the necessary questions. If the physician performs these three tasks, not only will they be more effective in treating the patient, but they will honor the patient as a person. And this honor is what people will disabilities desire the most from society.
In conclusion, I hope that this video has helped demonstrate how to be better treat a patient who has a disability similar to mine. By easing the problematic areas of communication and the physical aspects of the examining room the patient will be more comfortable, and the visit will ultimately be easier on everybody involved.
External transition is described as the temporary or permanent relocation of a child from one child care setting to another. External transitions may be voluntary, such as when a parent chooses to move a child to a different program because of a change of residence. These transitions may be involuntary when a child is removed from a child care setting as a result of suspension, expulsion, or the child being removed from a program because of intervention from an agency.
This 3-part course series will:
- Review research showing how moving from one child care setting to another child care setting has an impact on children, families, and child care providers.
- Review research showing how staying in the same child care setting with the same caregivers can help children develop socially, emotionally, and physically.
- Review research that supports making changes in the classroom and teacher actions to prevent behavioral problems.
- Suggest ways to work through behavior problems when they happen.
- Share ideas on how to create prevention and intervention plans in the classroom and throughout the entire center to lower the number of times a child moves due to behavioral problems.
- Review ways to support children who must move so that there are less negative impacts on children, families, and the child care provider.
External Transitions References
Make a Decision
In The Exam Room
Under the picture, the text should read: The clinician repeated the question to Julia but was still unable to understand her response. He then proceeded correctly, by requesting that Julia’s mom help interpret.
Self-Determination & Self Advocacy
Self-determination is the ability to choose your own goals, determine how you will reach those goals, and monitor and evaluate your progress towards them. Adolescents with higher levels of determination have been shown to have more positive, post-school life outcomes (Wehmeyer & Palmer, 2003).
There are several aspects about Julia’s interview that have been structured to increase and support her level of self determination. First, notice how the clinician always includes Julia in the questions that he asks. Secondly, notice how Julia’s independence in daily routines and self-help skills is being fostered by her mother. Thirdly, notice how Julia’s preferences are honored throughout the interview.
The ultimate goal in Julia’s health care is for her to take an active role in asking questions about her own health, and in managing that care to the greatest extent possible as she approaches adulthood. While she is still a very “young” adolescent, the groundwork is being laid for her to take a more active role in her own health care through the way the clinician approaches Julia’s involvement in this interview.See resources link for references and additional information on this topic.