In my first few weeks at Sristi Village, I was uncertain how to interact with the young adults with intellectual and developmental disabilities (IDDs) who lived around me. I was nervous that I may overwhelm those with autism or attention-deficit/hyperactivity disorder (ADHD) when introducing myself on the first day. [1] While guiding a group to lunch, I was worried I might hold the rigid shoulder of a student with cerebral palsy too tightly, unintentionally hurting him. And after the staff explained that many students do not know how to regulate what they eat [2], I was also nervous that I may over-serve dinner to one of the adults with down syndrome, causing him to have a sleepless night filled with nausea.
Soon, I learned that my apprehension when communicating with or caring for people with IDDs is not uncommon. Here, I summarize some of the key challenges people with IDDs face when seeking medical care. Then, I offer ways to promote greater health justice for this population, drawing on lessons from both India and the United States.
What are Intellectual and Developmental Disabilities?
Intellectual and developmental disabilities affect 1-3% of the global population, and are twice as common in low and middle-income compared to high income countries. [3] They are characterized by difficulty meeting childhood developmental milestones associated with cognition, communication, and, sometimes, motor activities. These challenges usually persist into adulthood and can hinder educational attainment, employment rates, and independent living.
Some intellectual and developmental disabilities have well-recognized underlying genetic causes (i.e., Fragile X syndrome, down syndrome) while others can develop after a brain disease (i.e., measles, meningitis, tumors), brain injury, or even exposure to certain environmental toxins. Prenatal health and preterm birth are also implicated in the etiology of IDDs. Ultimately, the cause of many IDDs is multifactorial, and still unknown.
Depending on the severity, the disabilities are classified as mild, moderate, severe, or profound; 85% fall into the mild category and 10% into the moderate. [3] With early intervention, special education, a supportive home, and other social services, the majority of people with intellectual disabilities—especially those with mild to moderate disabilities—can live in mainstream society. Although people with IDDs have the ability and desire to form meaningful, freely-given relationships and contribute to communal good, they experience significant social isolation and stigma. [4]
As an aspiring physician, I became especially curious how the social stigmas surrounding IDDs permeate into our healthcare systems, and how we can better serve this population.
Childhood Screening and Early Intervention
Doctors play a key role in the public health infrastructure required to first identify intellectual disabilities. For example, in India, the 2013 Rashtriya Bal Swasthya Karyakram government scheme aimed to screen children younger than 18 for cognitive, learning, language, and behavioral benchmarks. Doctors were on teams along with community health workers and other medical professionals (physiotherapist, speech therapist, psychologist, etc) who conducted these screenings. [5] Among the 122 million (12.2 crore) children screened, 600,000 (6 lakh) children with a developmental disorder were identified. The findings demonstrated how easily IDs can go unreported and underdiagnosed and helped propel movements for similar screenings nationwide.
In the United States, the American Academy of Pediatrics recommends developmental and behavioral screenings for all children at 9, 18, and 30 month visits, with an additional call for autism spectrum disorder screening at 24 months. [6] Doctors, nurses, and other medical professionals can conduct these at hospitals, schools, and other community-based locations. And rather than documenting deficits or delays, advocates are pushing for tools that simply document differing abilities. [7]
Early intervention supports both nervous, new parents and the child at a time their brain is most adaptable; prior research has documented that it improves school readiness, increases the likelihood of employment, and reduces the need for continued special education/services. Doctors can advocate for more early screening, intervention, and education about intellectual disabilities. The focus of these efforts is to reduce the burdens associated with unidentified and unmanaged disability.
Providing Medical Care
Like everyone else, people with intellectual disabilities need annual wellness visits and dental checkups. They need pap smears, mammograms, and other sexual and reproductive healthcare. They may require longitudinal care for common chronic diseases like diabetes, hypertension, and asthma. Chances are every doctor will see patients with intellectual and developmental disabilities in their career.
Yet, physicians are likely to underestimate the quality of life of people with disabilities [8] or only speak to their neurotypical caregivers or family members. [9] These initial reactions can limit their ability to be patient-centered, and infantilize even adult patients. In fact, only a minority of physicians state that they feel comfortable caring for people with disabilities [8] and they cite inadequate education on the topic. [10] Disability advocates have called for medical education reforms to provide required, longitudinal exposure to patients with intellectual disabilities across doctors of all specialties. [11] Increased exposure would equip physicians to understand different sensory and communication requirements for patients with diverse, and sometimes invisible, disabilities. While accessibility may immediately conjure images of ramps, it actually extends to the lighting, noise levels, and set-up of an exam room or hospital hallway.
This is part 1 of a 2 part series on health justice for people with IDDs. Stay tuned for the second installment!
Citations:
[1] Goldin, Rachel L., et al. “A Comparison of Tantrum Behavior Profiles in Children with ASD, ADHD and Comorbid ASD and ADHD.” Research in Developmental Disabilities, vol. 34, no. 9, Sept. 2013, pp. 2669–75. PubMed, https://doi.org/10.1016/j.ridd.2013.04.022.
[2] Roccatello, Giulia, et al. “Eating and Lifestyle Habits in Youth With Down Syndrome Attending a Care Program: An Exploratory Lesson for Future Improvements.” Frontiers in Nutrition, vol. 8, Sept. 2021, p. 641112. PubMed Central, https://doi.org/10.3389/fnut.2021.641112.
[3] Maulik, Pallab K., et al. “Prevalence of Intellectual Disability: A Meta-Analysis of Population-Based Studies.” Research in Developmental Disabilities, vol. 32, no. 2, Mar. 2011, pp. 419–36. ScienceDirect, https://doi.org/10.1016/j.ridd.2010.12.018.
[4] Wilson, Nathan J., et al. “From Social Exclusion to Supported Inclusion: Adults with Intellectual Disability Discuss Their Lived Experiences of a Structured Social Group.” Journal of Applied Research in Intellectual Disabilities, vol. 30, no. 5, Sept. 2017, pp. 847–58. DOI.org (Crossref), https://doi.org/10.1111/jar.12275.
[5] Singh, Arun K., et al. “Moving from Survival to Healthy Survival through Child Health Screening and Early Intervention Services Under Rashtriya Bal Swasthya Karyakram (RBSK).” The Indian Journal of Pediatrics, vol. 82, no. 11, Nov. 2015, pp. 1012–18. DOI.org (Crossref), https://doi.org/10.1007/s12098-015-1823-2.
[6] CDC. “Facts About Developmental Disabilities | CDC.” Centers for Disease Control and Prevention, 27 Apr. 2022, https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html.
[7] “Latika Roy Foundation – Dehradun, India.” Latika Roy Memorial Foundation | Disability India, 21 July 2015, https://latikaroy.org/.
[8] Iezzoni, Lisa I., et al. “Physicians’ Perceptions Of People With Disability And Their Health Care: Study Reports the Results of a Survey of Physicians’ Perceptions of People with Disability.” Health Affairs, vol. 40, no. 2, Feb. 2021, pp. 297–306. DOI.org (Crossref), https://doi.org/10.1377/hlthaff.2020.01452.
[9] Contreras, Gus, et al. “How Some Doctors Discriminate against Patients with Disabilities.” NPR, 1 Nov. 2022. NPR, https://www.npr.org/2022/11/01/1133375224/how-some-doctors-discriminate-against-patients-with-disabilities.
[10] Phillips, A., et al. “General Practitioners’ Educational Needs in Intellectual Disability Health.” Journal of Intellectual Disability Research: JIDR, vol. 48, no. Pt 2, Feb. 2004, pp. 142–49. PubMed, https://doi.org/10.1111/j.1365-2788.2004.00503.x.
[11] Santra, Romila. “U.S. Medical Schools Aren’t Teaching Future Doctors about 7.4 Million of Their Patients.” STAT, 11 Dec. 2023, https://www.statnews.com/2023/12/11/medical-schools-idd-education-intellectual-developmental-disabilities-patients/.
