This piece is part 2 of a 2 part series on health justice for people with IDDs. You can read the first installment here.
Outside of their routine medical care, people with intellectual and developmental disabilities are at increased risk for multiple associated conditions (known as medical comorbidities). This does not mean that disability always causes additional disease. It simply highlights how people with IDDs are one of many vulnerable demographic groups, similar to how women, children, elderly patients, or members of different ethnic groups can have increased risk of different health conditions.
Past research on the most common medical comorbidities patients is restricted to studies from the United States, Europe, and Australia. Based on this limited research, epilepsy, skin infection, and mental disorders are significantly more prevalent among people with IDDs than those without [1]. Multiple medical conditions are more likely to co-exist, occur at a much earlier age, and present with a different profile for adults with IDDs compared with the general population [2]. Doctors must be better trained to recognize and treat these co-occurring medical and mental conditions. Additional research conducted in and led by researchers from low and middle income countries is also necessary to ensure this care is delivered effectively across diverse global contexts.
Disability is Not a Disease
Still, doctors should be careful not to “treat” disability. Some advocates and parents of children with disabilities have cited being frustrated that doctors are trained to view intellectual and developmental disorders as solely medical deficits that must be “fixed” or even “cured,” especially since they are often people concerned with intelligence and conventional success. [3] The debate around prenatal testing for disabilities (which are mostly restricted to being offered in developed countries) is widely contested. Some argue that it is a form of “contemporary eugenics” if a woman chooses to terminate her pregnancy because of risk of disability, while others believe it is simply limited but clinically useful education for expecting parents to prepare with in case their child does have a disability. [3, 4]
Much of the disagreement arises because of the different ways people understand disabilities. For example, the social model of disability—developed by disability rights activists—focuses on a lack of fit between an individual’s abilities and the environment in which they live. [5] According to this model, society should be responsible for removing attitudinal, informational, and physical barriers rather than the individual needing any treatment or changes to fit into mainstream society. In other words, IDDs are (at least in part) social constructs. In turn, it also becomes important to use person-first language like “person with disability” in place of “disabled.”
However, others believe this view doesn’t acknowledge the daily difficulties people with IDDs will face until society changes. They argue that people should be able to choose whether they want to be called “autistic” or “a person with autism.” They advocate for everyone to have the right to seek solutions to reduce the difficulties associated with disabilities. Families may visit doctors or other medical professionals with the explicit goal of having a person with disability learn to speak or walk; reducing behavioral difficulties; or otherwise improving their ability to fit into mainstream society.
In either case, doctors must be clear that the goal is not to eliminate disability, but to enhance existing abilities and meet any needs expressed by the patient. Doctors must be careful not to approach patients with pity, shame, or low expectations. In fact, asking person with disability or their family for help is important if the doctor is uncertain about any of their capabilities. Whenever possible, physicians should first communicate directly with the person with disability, and set realistic goals together.
Supporting Access to Social Services
I believe a good doctor can also strike the balance between the medical and social model of disability if they are familiar with important disability services that exist outside the clinical setting.
For example, physicians should learn about the legislation and policy that protects people with disabilities. In India, The Persons with Disabilities Act 1995 and the Rights of Persons with Disabilities Act 2016 guarantee all basic rights to people with disabilities. [6, 7] A medical board is required to issue a disability certificate for someone to receive benefits from these acts, including public travel concessions; admission to government schools; or consideration for government jobs that are reserved for people with disabilities. Pediatricians or others with a focus on early development might be preferred candidates to serve on these medical boards, but general practitioners may take on the role in underserved areas, and, even otherwise, refer their patients to such a board.
Likewise, in the United States, the 1990 Americans with Disabilities Act prohibits discrimination on the basis of disability. [8] Federal resources like Social Security Disability Insurance (monthly payments in lieu of employment), Medicaid (health insurance), or additional state-specific resources for intellectual and developmental disabilities almost always require either a medical diagnosis, medical records, or the support of a medical doctor [9, 10]. Doctors must do their part to make it easier for patients with disabilities to learn about their rights outside the clinic, and to access beneficial social services.
Conclusion
Ultimately, compounding medical and social concerns among people with IDDs require urgent and holistic intervention to achieve health justice. Doctors must make it a priority to recognize, care for, and respect people with intellectual and developmental disabilities to work towards health equity.
Citations:
[1] Straetmans, Jos MJAA, et al. “Health Problems of People with Intellectual Disabilities: The Impact for General Practice.” The British Journal of General Practice, vol. 57, no. 534, Jan. 2007, pp. 64–66. PubMed Central, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2032703/.
[2] Cooper, Sally-Ann, et al. “Multiple Physical and Mental Health Comorbidity in Adults with Intellectual Disabilities: Population-Based Cross-Sectional Analysis.” BMC Family Practice, vol. 16, Aug. 2015, p. 110. PubMed Central, https://doi.org/10.1186/s12875-015-0329-3.
[3] Zhang, Sarah. “The Last Children of Down Syndrome.” The Atlantic, 18 Nov. 2020. The Atlantic, https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/.
[4] Thomas, Gareth M., and Barbara Katz Rothman. “Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening.” AMA Journal of Ethics, vol. 18, no. 4, Apr. 2016, pp. 406–15. journalofethics.ama-assn.org, https://doi.org/10.1001/journalofethics.2016.18.4.stas1-1604.
[5] “Conceptualizing Disability: Three Models of Disability.” https://www.Apa.Org, https://www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/disability-models.
[6] The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. 1995. Available from: https://thenationaltrust.gov.in/upload/uploadfiles/files/Persons%20with%20Disability%20Act%201995.pdf.
[7] The Rights of Persons with Disability Act. 2016. Available from: http://www.disabilityaffairs.gov.in/upload/uploadfiles/files/RPWD%20ACT%202016.pdf .
[8] “The Americans with Disabilities Act.” ADA.Gov, https://www.ada.gov/.
[9] Disability | The Social Security Administration. https://www.ssa.gov/disability.
[10] DID Best Practice Guidelines | Texas Health and Human Services. https://www.hhs.texas.gov/providers/long-term-care-providers/local-idd-authority-lidda/did-best-practice-guidelines. Accessed 7 Apr. 2024.
