Understanding and Screening for Developmental Disabilities
Equity, Diversity, and Inclusion (EDI), Special Populations
- People with developmental disabilities (DD) have been shown to utilize the ED at higher rates than the general population.
- The high rate of repeat visits for patients with DD within 30 days could suggest inadequate treatment on the initial visit.
- A developmental disability can affect major life activities, such as personal care, language skills, learning abilities, and the capacity to live independently as an adult.
- The term is often used synonymously with intellectual disability but there are some significant although subtle differences among those affected. For example, some patients with Autism Spectrum Disorder or Fetal Alcohol Spectrum Disorder have a developmental disability but not an intellectual disability.
- Knowing your patient has a developmental disability will allow you to tailor your communication and treatment strategies and also to determine appropriate follow-up.
Screening for Developmental Disability
- The following clues may indicate that your patient has a developmental disability:
- Slow response time
- Difficulty with forms
- Repeat visits for same issue
- Difficulty with basic math, telling time
- Chronic social or legal difficulties
- Concrete/literal thinking
- Frequently missed follow-up
- Gaps in daytime activity
- If you suspect your patient has DD, examples of questions you can use are:
- Education level: How old were you when you left school? Were you ever in a separate class? Did you find school hard?
- Day time activity: How do you spend your days? (look for volunteering, day programs, lack of work, boredom). If working, do you receive help in your job?
- Level of Support: Do you live with anyone else (look for roommates, workers, boarding/group home). Do you have any support workers? How do you get around or how did you get here?
- Functional tests: Ask the patient to tell the time or check their literacy by asking them to read a sign. After you have explained something to them, ask them to explain it back.
Resources and Strategies
- Key strategies for patients with developmental disabilities:
- Provide clear simple instructions and verify the patient’s understanding.
- Seek input from collateral sources wherever possible.
- Consider and screen for health issues that are common for patients with DD.
- Appropriate follow-up, if required, usually needs to involve support workers or family. You can also consider recommending some of the specialized resources listed below.
- Available Resources:
- Developmental Disabilities Mental Health Services: Provides non-crisis mental health specialized assessment and consultation. Means of access varies by health authority. Some require referral and others do not.
- Health Services for Community Living: Exact resources vary by health authority and may include nursing services, rehabilitation, care planning, dental hygiene, nutrition services, swallowing assessments, and family support. Physician referral is not required but consider having on hand the phone number for your local centre where patients and families can get more information.
- Many of these supports can be arranged by a support person through Community Living BC, the provincial organization tasked with providing living supports and other supports for people with developmental disabilities. Many of your patients with DD will already be connected with CLBC, but if they are not, contact information for local offices can be found here: Community Living BC
- Sensory hypersensitivity is common. Try to find a quiet room (i.e. isolation room, psych interview room), dim fluorescent lights, and turn off non-essential monitors
- Some patients may come with their own individual care plan or crisis plan, or with a communication tool such as a health passport.
- Sit at the level of the patient rather than standing over them.
- Address the patient directly whenever possible, even if they are non-verbal.
- Go slow, adjust volume of your voice. Some patients with DD may respond poorly to loud voices, others may be hard of hearing and need you to speak up.
- People with DD are frequently the victims of all forms of abuse. Remember to practice trauma informed care.
- If the patient agrees, try to accommodate caregivers to be present during interviews and exams. They are useful for providing collateral information and as a source of comfort.
- Encourage the use of comforters such as toys or music during exams and procedures.
- Consider developing a kit of soothing/distracting objects (sunglasses, earphones, squishy balls, weighted blanket) that can be kept in your ED.
- Be mindful of body language. Non-verbal patients can be especially sensitive to this.
- Explain exams and procedures using the show-tell-do approach, i.e. show the stethoscope, and explain what you are going to do with it before proceeding.
- Give ongoing encouragement for even small steps successfully completed.
- Provide clear verbal discharge instructions and give written instructions for patients to take home, either for themselves or to share with any caregivers who are not present.
Approach to Concerning Behavior
- When looking for the cause of challenging behaviours, remember to HELP.
- First consider Health related causes such as pain.
- Next consider Environmental triggers (the ED is an unfamiliar and often overstimulating environment that can contribute to these behaviours),
- Then ask about Living circumstances (i.e. recent move or change in support staff).
- Consider Psychiatric causes only after other causes have been eliminated.
- Stereotypy, repetitive movements or vocalizations colloquially known as stimming, are common among people on the autism spectrum. Traditionally, family and clinicians have interpreted these as inappropriate and have engaged in various methods to attempt to reduce them, however they are increasingly being seen as a self-regulatory mechanism that does not require treatment and allowing your patient to engage in stimming may help them to stay calm in the ED.
Quality Of Evidence?
We are highly confident that the true effect lies close to that of the estimate of the effect. There is a wide range of studies included in the analyses with no major limitations, there is little variation between studies, and the summary estimate has a narrow confidence interval.
We consider that the true effect is likely to be close to the estimate of the effect, but there is a possibility that it is substantially different. There are only a few studies and some have limitations but not major flaws, there are some variations between studies, or the confidence interval of the summary estimate is wide.
When the true effect may be substantially different from the estimate of the effect. The studies have major flaws, there is important variations between studies, of the confidence interval of the summary estimate is very wide.
- Little research has been done on screening for developmental disabilities in the emergency department.
- Research on treatment and communication strategies for patients with developmental disabilities has largely been done in settings other than the ED.
- Research has rarely incorporated feedback from or discussion with patients with developmental disabilities.
OTHER RELEVANT INFORMATION
Lunsky, Y., Lee, J., Perry, A., & Lake Johanna. (2016). Improving Emergency Care for Adults with Developmental Disabilities: A Toolkit for Providers.
Durbin, A., Balogh, R., Lin, E., Wilton, A. S., & Lunsky, Y. (2018). Emergency Department Use: Common Presenting Issues and Continuity of Care for Individuals With and Without Intellectual and Developmental Disabilities. Journal of Autism and Developmental Disorders, 48(10), 3542–3550.
Durbin, A., Balogh, R., Lin, E., Wilton, A. S., Selick, A., Dobranowski, K. M., & Lunsky, Y. (2019). Repeat Emergency Department Visits for Individuals With Intellectual and Developmental Disabilities and Psychiatric Disorders. American Journal on Intellectual and Developmental Disabilities, 124(3), 206–219.
Hughes, K., Bellis, M. A., Bates, G., Eckley, L., Bellis, M. A., Hughes, K., … Offi, A. (2012). Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. Lancet, 379, 1621–1650.
Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). “People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792.
Lin, E., Balogh, R. S., Durbin, A., Holder, L., Gupta, N., Volpe, T., … Lunsky, Y. (2019). Adressing Gaps in the Health Care Services Used by Adults with Developmental Disabilities in Ontario Summary.
Liu, G., Pearl, A. M., Kong, L., Douglas, L. L., & Murray, M. J. (2017). A Profile on Emergency Department Utilization in Adolescents and Young Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 47, 347–358.
Lunsky, Y., Lin, E., Balogh, R., Klein-Geltink, J., Wilton, A. S., & Kurdyak, P. (2012). Emergency Department Visits and Use of Outpatient Physician Services by Adults with Developmental Disability and Psychiatric Disorder. The Canadian Journal of Psychiatry, 57(10), 601–607.
Sullivan, W. F., Diepstra, H., Heng, J., Ally, S., Bradley, E., Casson, I., … Witherbee, S. (2018). Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Canadian Family Physician, 64(4).
The purpose of this document is to provide health care professionals with key facts and recommendations for the diagnosis and treatment of patients in the emergency department. This summary was produced by the BC Emergency Medicine Network and uses the best available knowledge at the time of publication. However, healthcare professionals should continue to use their own judgment and take into consideration context, resources and other relevant factors. The BC Emergency Medicine Network is not liable for any damages, claims, liabilities, costs or obligations arising from the use of this document including loss or damages arising from any claims made by a third party. The BC Emergency Medicine Network also assumes no responsibility or liability for changes made to this document without its consent.
Last Updated May 21, 2020
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