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A developmental disability is a chronic disability of a person that:
(Source: The ARC website, retrieved February 2003. http://www.thearc.org/.)
We estimate that the prevalence of developmental disability in the United States is approximately 1.5%, or 4.5 million persons.
As evidenced by the statistics above, developmental disabilities affect a large segment of our population. In addition, many more lives are touched by the incidence of developmental disabilities than may be reflected by the numbers reported. Family dynamics are often permanently altered when a child is born with a developmental disability. As these children grow into adults, their family connections grow, as do their contacts with society at large. Healthcare providers need to develop the knowledge and skills required to provide competent services to this often neglected segment of our communities.
Individuals born with developmental disabilities frequently encounter a lifetime of challenges. These challenges often include struggles for accessibility of services centered around education, habilitation, workplace accommodations, and healthcare. Developmental disabilities may impose various alterations in function; thus each individual will require a unique approach to care. A person with a developmental disability may experience difficulty with mobility, communication, coordination, growth (meeting milestones), cognition, learning, or seizure activity to varying degrees. The type and extent of support required depends on the particular person with the disability and the manner in which that person interacts with his or her environment. Healthcare professionals should certainly make efforts to accommodate and thus respect such individuals in the clinic setting.
For further reading on developmental disabilities, and healthcare issues for persons with developmental disabilities, see: “Serving Persons Who Have Developmental Disabilities in the Healthcare Setting: Resources for Medical Student Training in Developmental Disability.” Matheny Institute for Research in Developmental Disabilities. Available online at www.disabilityhealth.org
The Preservice Health Training Project was developed out of a need to train healthcare workers to be responsive to the needs of persons with developmental disabilities. In designing the project, a team consisting of physicians, experts in disabilities, parents, individuals with disabilities, and technical experts identified a series of core objectives, which based on both the medical education literature and personal experience, seemed to be those things that physicians most needed to know about such patients. We have also considered the critical communication objectives for medical school students as outlined in such documents as the report on Communication in Medicine (1999) by the Association of American Medical Colleges. Our project has been designed around two main goals:
Several items are included with the modules. First is a section of supplemental material. This includes general background material on developmental disabilities (e.g., types of developmental disabilities, person-first language, etc.). The supplemental material also includes specific information for each of the two virtual patient cases (an adult with cerebral palsy, a child with autism) in which you will have the option of participating. Multiple choice questions are included for the supplemental material as an optional review exercise for students.
The video section (virtual patient interview) represents the core of the module. Each virtual patient interview includes a series of video clips; at the end of each video clip, the student is asked to respond to a “decision point” about how best to proceed with the interview. Interspersed with the videotaped interactions of patient and physician are additional information points. At the conclusion of the video sections are remarks by the virtual patient actors (themselves individuals with developmental disabilities and family members) about their personal experiences with physicians.
The modules include a diagnostic tool, which we refer to as the Disability Situations Inventory (DSI). The purpose of the DSI is to gauge the degree to which the physician feels comfortable in performing routine examination procedures for patients with a variety of developmental disabilities. The DSI will be given as both a pre-test and a post-test in order to gauge the effectiveness of our modules in familiarizing medical students with persons with disabilities.
The modules also contain an Instructor’s Manual with several suggestions for further activities. Among these activities are two additional case studies with discussion questions. Two contemporary issues are also included to generate further classroom discussion. A series of possible paper topics are suggested, as well as the framework for a sub-specialty interview.
Association of American Medical Colleges. 1999. Report III: Contemporary Issues in Medicine: Communication in Medicine. Medical School Objectives Project.
Olivia is a 10 month-old infant born at twenty six weeks gestational age. The patient is played by a child who was born prematurely, and the mother is played by her real mom.
This case involves a well-child visit for a preterm infant.
Observe how best to facilitate effective clinical interactions in this situation.
In the chart we see that Olivia remained on a ventilator for four weeks and now continues to have bronchopulmonary dysplasia. She has had frequent episodes of wheezing and airway congestion, and one episode of pneumonia at age 5 months.
Her breathing concerns her mother because she has noisy respirations. Bronchoscopic examination has revealed that she has some narrowing of her epiglottis. The good news is that this will improve as she grows bigger, and no other abnormalities were found in the large airways.
She does have stage II retinopathy of prematurity (ROP) and is under the care of a pediatric ophthalmologist. Also, she had a grade III intraventricular hemorrhage (IVH) which resolved before hospital discharge. Remember, IVH has a high correlation with motor delays/deficits and the higher the grade the more likely the problem. She experienced symptoms of NEC (necrotizing enterocolitis) during her stay in the NICU, but those also resolved without invasive medical intervention.
Today, although she is really ten months old, you should conduct the history of her growth, development, and expected behaviors as if she were her corrected age. If she has progressed beyond that age, you should adapt your teaching and anticipatory guidance to the level of development and behaviors she is demonstrating.
Children experience transition every day. Most transitions are positive, and routine. For example, going from home to school or changes within a school day. However, too many transitions, or the wrong kind of transitions can be harmful to a child.
Count the number of (1) routine transitions and (2) unusual transitions Tyrell experiences during the day in the example below.
Tyrell is dropped off at his preschool by his mom in the morning on her way to work. Tyrell is one of the first children dropped off, so his mom usually leaves him in the Butterfly Room. His teacher Ms. Lantern is running late, so he is moved to the Ladybug Room, where he eats breakfast. Ms. Lantern gets him from the Ladybug Room and he joins the rest of his class in the Frog Room, which is a normal part of his day. Once in the Frog classroom, his class has two hours of activities before they go outside to play. Lunch is served inside the Frog Room, then it’s naptime. In the afternoon, his grandmother picks him up and takes him to her house for a few hours until his mom picks him up to take him home.
Tyrell makes 8 routine transitions during his day:
1. Mom dropping off at school
2. Moving from the Ladybug to the Frog Room
3. Moving from the Frog Room to outside
4. Moving from outside into the Frog Room
5. Moving from lunch to naptime
6. Nap Time
7. His grandmother picking him up
8. His mom picking him up from his grandmother’s house
Tyrell made one unusual transition today:
Moving from the Butterfly to the Ladybug Room
For the purpose of this course, external transition in child care means moving from one child care setting to another.
Marilynn is a three year old who was born drug addicted. Her parents are both in jail, and her Aunt Bridget has custody of her. Due to the physical, social, and neurological effects of being born addicted, Marilynn acts out when she does not get her way, often hitting and biting her classmates. Last year, she was asked to leave two child care settings.
The center that asked Marilynn to leave loses the slot, and the income.
Marilynn loses her friends and teachers she formed relationships with.
During the time she is not in care, Marilynn is not learning. In her new child care setting, she has to learn new routines, which is hard for her.
Bridget has had to take time off work to find another child care setting for Marilynn. In addition, there was an increase in the cost of care at the new child care setting.
Sometimes, it is in the child’s best interest to move to a new child care setting.
More often, the change to a new child care setting could be prevented.
We recommend families and decision-makers at the child care setting work together to prevent moves to new child care settings.
This course shares ideas on how to prevent unnecessary moves.
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[ms_accordion_item title=”What suggestions would you offer clinicians working with Julia?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]The healthcare professional should work with us as a partnership to provide Julia with the best healthcare possible. This means that Julia should be treated with respect and sensitivity. Comments such as “she is such a great kid, but we wish she didn’t have Down syndrome” should not be made. The healthcare provider should not look at me with pity in their eyes because Julia has a disability. Instead we need to be rejoicing in the fact that she is doing as well as she is. As a member of the team, the healthcare provider must focus on her strengths.
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. [/ms_accordion_item]
[ms_accordion_item title=”What should a clinician know about Julia’s communication skills?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Because of Julia’s expressive language delays, it takes concentration and extra time to understand her. We have been working on different strategies to help her communicate, strategies that include an organizer for her to type in what she is trying to say. It is important to remember that although her expressive language is delayed her receptive language is not. She can understand what you are saying and will act appropriately. This will require extra time with her in the exam room, so the healthcare provider will need to spend longer than the allowable time with her. Ten minutes into the exam the office assistant should not stick their head in the door and tell the doctor to move on. To prevent this from happening individuals with special needs should be scheduled accordingly to allow the necessary time for a thorough exam.
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[ms_accordion_item title=”What do you see as the role of a healthcare professional in self-determination?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Another critical responsibility for the healthcare professional is to foster self -determination in the individual with the disability. There are many ways this can be done. Greet the individual by name. Include the individual in the discussions that concern their health, including the importance of exercise and good nutrition. As the individual ages sexual health will also be an important area for discussion. Julia has many things she does independently, like dressing herself. She cannot tie shoes, so we have found shoes that either slip on or use Velcro for closing. This is an important step. Julia also picks her breakfast and lunch menus. She knows that she must take a vitamin and we are working with her on getting it out of the bottle. We have started working on preparation of food. The healthcare professional can also advocate in this arena for the individual. [/ms_accordion_item]
[ms_accordion_item title=”What is the role of the healthcare professional in receiving appropriate services?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]The healthcare professional should work with us as a partnership to provide Julia with the best healthcare possible. This means that Julia should be treated with respect and sensitivity. Comments such as “she is such a great kid, but we wish she didn’t have Down syndrome” should not be made. The healthcare provider should not look at me with pity in their eyes because Julia has a disability. Instead we need to be rejoicing in the fact that she is doing as well as she is. As a member of the team, the healthcare provider must focus on her strengths.
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. [/ms_accordion_item]
[ms_accordion_item title=”Is there anything else you would say to a healthcare professional?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Last, the healthcare provider should not be afraid to admit that they don’t know the answers, but are willing to find out. When Julia was young we took copies of the growth chart for individuals with Down syndrome into her pediatrician. They were very appreciative, but did not use it unless I reminded them. We had an insurance issue and had to change physicians. When we showed up for her checkup he had printed out the growth charts and had them at the front of her chart. He also had the Healthcare Guidelines for Children with Down syndrome that he had printed off the web site. This indicated that he had the interest in Julia and wanted to provide good care. I asked some questions about puberty that he did not know, and he admitted that he did not know, but he knew where he could go to find information. This meant so much to us.
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