Parents’ Thoughts

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.

Questions to Parents

Examination Table Security

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.

 

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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.

Make a Decision

Assessment and Planning

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.

Personal Care Assistant

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

The physician is a bit concerned about communication with this patient. He realizes how important it is to be able to communicate with and understand the patient.

 

REVIEW RESOURCES

Bryan’s Message

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.

Thank you.

ECE 101: External Transition – Suspension & Expulsion – Impacts on Children and Families

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.

Corlia Logsdon

Course Author

Corlia Logsdon is a veteran education professional. She has been a champion of individuals with disabilities in educational settings, as both a school psychologist and a special education director. Corlia has had experience as a state and school district level administrator working with federal and state regulatory monitoring, compliance, and investigations, technical assistance, and professional development in K-12 and postsecondary settings. She is currently completing her doctorate in Education Leadership with a concentration in Counselor Education and Supervision through Eastern Kentucky University. She holds Education Specialist and Master of Science degrees in Educational and Counseling Psychology, majoring in School Psychology from the University of Kentucky as well as a Bachelor of Arts in English & Communications also from the University of Kentucky.

Self-Determination

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.