I am Unique – Making the Impossible – Possible...Healthcare for everyone!
- chatyrbok4
- Mar 18, 2021
- 5 min read
Updated: Mar 23, 2021
Photo retrieved March 18, 2021 from https://unsplash.com/@nathananderson?utm_source=wix-media-manager&utm_medium=referral
When you have a neurotypical child, parents feel their child will participate in class, make friends and get good grades. They will get invited to birthday parties and playdates and participate in sports or recreational activities. A child that has an Intellectual or developmental disability (IDD) these things are not often the case. Learning takes longer and social relationships are often few and far between. Developmental milestones are key points in a child’s life that give a general idea of how they will develop as they get older. Every child is unique and develop at their own pace but at certain points they should be able to perform certain tasks such as waving good-bye, sitting up, holding their head up etc. The CDC (2020) defines developmental disabilities as " a group of conditions due to an impairment in physical, learning, language, or behavior areas” which will affect their activities of daily living throughout their lifetime. Additionally, intellectual disability is defined as limits to one’s ability to learn and perform at a certain level their activities of daily living (CDC, 2020). According to Statistics Canada (2019) "the conventional view of disability is a limitation that remains more or less permanent and unchanged over time". As time has shown many individuals with a disability do not follow a certain pattern.There are approximately 6.2 million adults in Canada with a disability with 3.8 million (61%) having a disability that changes over time, while 2.4 million (39%) have limitations or a disability that remains consistent throughout their lifetime (Statistics Canada, 2019).
Individuals that have an Intellectual and Developmental Disability (IDD) are a particularly vulnerable population in which both children and adults are predisposed to a myriad of health conditions and comorbidities that vary in complexity, requiring care and interventions that are specifically adapted to their needs (Sullivan et al., 2018).
Claiborne , L., 20212 Let's Talk about Intellectual Disabilities retrieved March 21, 2021 from https://www.youtube.com/watch?v=0XXqr_ZSsMg
Individuals with IDD have poorer health and shorter life expectancy compared to those that do not have IDD (Friedman, 2019). They are often unable to monitor and report changes in their health conditions, thus lending to the increased need for education around guidelines for healthcare providers within their scope of practice (Grier et al., 2018). This same population typically is also faced with greater barriers to accessing appropriate healthcare and services (Stringer et al., 2019). If Individuals with IDD are unable to report on their own health concerns it showcases the need to have physicians that are willing and able to treat this highly vulnerable group.
The scarcity of primary care physicians and/or their inability to treat individuals with IDD due to either a lack of knowledge or experience, further increases the need to educate incoming physician’s on how to care for individuals with IDD.
Individuals with IDD make up approximately 1-3% of the general population, therefore the average primary care health practice of approximately 1500 patients can expect to have 15-45 patients with IDD in their practice (Curriculum Working Group, 2014). “In Canada, deinstitutionalization, “community living,” and discharge from the care of pediatric developmental specialists and multidisciplinary clinics have led adults with IDD and their families to seek care from family physicians” (Casson et al., 2019). This further confirms the need for physicians that are educated and have the knowledge to care for this unique population of Individuals with IDD.
Canada is a signatory to the United Nations Convention on the Rights of Persons with Disabilities which is committed to providing resources that enable them to be included in the community (Casson et al., 2018). Health care professionals have acknowledged their discomfort in engaging with individuals with IDD. Many clinicians, including most family physicians, feel inadequately prepared to provide competent care to persons with IDD (Wilkinson, 2012). Physicians lacking experience in working with individuals with IDD may have anxiety regarding a perceived lack of competence in providing adequate healthcare (Wilkinson et al., 2012). This further lends to the compromised health of individuals with IDD. Additionally, lack of knowledge, time and consideration creates inequity achieving optimal health outcomes for individuals living with IDD.
Precisely because this population is so vulnerable, and because patients with IDD tend to have multiple chronic comorbidities, clinical learning opportunities for physicians is key in providing optimal care for individuals with IDD. Everyone is unique and has unique needs. Individuals with IDD may not be able to explain or verbalize their needs, so having caregivers and physicians that can help identify and diagnose early conditions could greatly improve health outcomes. The need for physicians that specialize in caring for individuals with IDD is critical to supporting the best possible health scenarios. A need for more intense curriculum development to include education for medicine, dentistry, pharmacists, nursing and rehabilitation sciences is key in moving forward in the future for addressing the gap in healthcare for supporting individuals with IDD.
References
Casson, I., Abells, D., Boyd, K., Bradley, E., Gemmill, M., Grier, E., Griffiths, J., Hennen, B., Loh, A., Lunsky, Y., Sue, K., (2019) Teaching family medicine residents about care of adults with intellectual and developmental disabilities. Canadian Family Physician Vol. 65. Retrieved March 18, 2021 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6501710/pdf/0650s35.pdf
Casson I, Broda T, Durbin J, Gonzales A, Green L, Grier E, Lunsky Y, Selick A, Sue K. Health checks for adults with intellectual and developmental disabilities in a family practice. Can Fam Physician. 2018 Apr;64(Suppl 2): S44-S50. PMID: 29650744; PMCID: PMC5906774. https://pubmed.ncbi.nlm.nih.gov/29650744/
Center of Disease Control and Prevention (2020). Facts about Intellectual Disability Retrieved March 18, 2021 from https://www.cdc.gov/ncbddd/childdevelopment/facts-about-intellectual-disability.html
Center of Disease Control and Prevention (2020) Facts about Developmental Disabilities Retrieved March 18, 2021 from https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
Curriculum Working Group, Developmental Disabilities Primary Care Initiative. Family Medicine Curriculum Resource: Adults with Developmental Disabilities (2014). Toronto (ON): Surrey Place Centre; 8.87p. Available from: www.surreyplace.on.ca/Documents/Family_Medicine_Curriculum_Resource_print_version_February_2014.pdf
Friedman, C., Rizzolo, M. C., & Spassiani, N. A. (2019). Self‐management of health by people with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 32(3), 600–609. https://doi.org/10.1111/jar.12554
Grier, E., Abells, D., Casson, I., Gemmill, M., Ladouceur, J., Lepp, A., Niel, U., Sacks, S., & Sue, K. (2018). Managing complexity in care of patients with intellectual and developmental disabilities: Natural fit for the family physician as an expert generalist. Canadian family physician Medecin de famille canadien, 64(Suppl 2), S15–S22.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906780/
Statistics Canada (2019) Study: The dynamics of disability: Progressive, recurrent or fluctuating limitations Retrieved March 21, 2021 from https://www150.statcan.gc.ca/n1/daily-quotidien/191203/dq191203a-eng.htm
Stringer K, Ryan B, Terry A, Pike A. Primary Care of Adults with Severe and Profound Intellectual and Developmental Disabilities. Canadian Family Physician 2019 Apr; 65(Suppl 1): S59-S65 PMID 31023783; PMCID PMC6501711.
Sullivan, W.F.;Diepstra, H.;Heng, J.; Ally, S.;Bradley, E.; Casson, I.; Hennen, B.; Kelly, M.; Korossy, M.; McNeil, K.; Abells, D.; Amaria, K.; Boyd, K.; Gemmill, M.;Grier, E.; Kennie-Kaulbach, N.; Ketchell, M.; Ladouceur, J.;Lepp, A.;Lunsky, Y.; McMillan, S.; Niel, U.; Sacks, S.; Shea, S.; Stringer, K.; Sue, K.; Witherbee, S.; (2018) Primary care of adults with intellectual and developmental disabilities 2018 Canadian consensus guidelines https://www.cfp.ca/contnd factorsent/cfp/64/4/254.full.pdf
Wilkinson, J., Dreyfus, D., Cerret, M,. Boukhour, B., (2012) “Sometimes I Feel Overwhelmed”: Educational Needs of Family Physicians Caring for People with Intellectual Disability; Intellect Dev Disabil. 2012 June ; 50(3): 243–250.
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