Health Promotion for People with Intellectual and Developmental Disabilities

I Leslie Rubin MD
Joshua Berezin MD, MS contributed to the research and background for this chapter

Every person with intellectual and developmental disabilities (IDD) should have access to health care that is compassionate, coordinated, competent, and comprehensive, supporting their fullest health, autonomy, and quality of life throughout the lifespan.

The World Health Organization (WHO) originally defined health as a state of physical, emotional, and social wellbeing, and subsequently added the concept of health promotion as a process of enabling people to increase control over their own health and quality of life.1-3 For people with IDD and mental health conditions, health promotion is a critical element in the treatment and management of mental health symptoms.4

Fundamental Components in Primary Health Promotion

Nutrition

Adequate nutrition5,6 with a well-balanced diet, meals at regular, predictable intervals and assurance of adequate hydration, particularly in the hot summer months, is critical to physical health and mental wellbeing. It is important to consider the method of eating for everyone, because, while some may be able to feed themselves independently, others may require different levels of assistance or may require dietary modifications. Those who cannot eat and swallow safely and effectively may require alternative feeding strategies, for example by a gastrostomy tube.

Physical Activity

Physical activity is critical to health and wellbeing7 and should be factored into the daily routine for every person. While some people with IDD may be independently mobile and should have routine walks or other physical activities as desired, for those with limited mobility, physical activity should be tailored to their abilities and preferences. For some, structured physical activity in the form of physical therapy, adaptive physical education, or other activities like aquatic therapy may be necessary.

Sleep Hygiene

Good quality sleep is not only essential for good physical health, but also critically important to mental health and wellbeing. A regular sleep routine in a comfortable bed, in a quiet environment, can make a difference between a good mood or a bad mood in the morning and throughout the day which can significantly affect behavior patterns and social interactions.8,9

Predictability and Routine

Predictability and routines that include times for meals, physical and social activities, and all forms of preferred community participation are essential to reduce anxiety and promote mental health through emotional and social stability, and personal growth. Routines are also essential for bowel movements and the prevention of constipation.

Relationships and Belonging

Natural (unpaid) supportive relationships with family, friends, and others should be encouraged through both one-on-one interactions and in group settings to promote inclusion within broader community networks.

Sensory Integration Activities

Many people with IDD have sensory processing difficulties, particularly those with autism, and require more intensive or more frequent physical activities or participation in expressive activities such as music or art. Some prefer to be outdoors and may enjoy and benefit from actively gardening.10

In keeping with the understanding of health as a dynamic interaction between the individual and the environment, primary health promotion also requires a holistic, integrative approach that also nurtures physical, emotional, and social wellbeing (Figure 1).
 

Figure 1: Social Determinants of Health 

alt text needed -JD

Clinical Care

People with IDD and mental health needs represent a heterogeneous group of people with a wide range of abilities and associated medical and adaptive characteristics, each within a cultural context. It therefore behooves the clinician to get to know and understand as much as possible about the person, their social background, language preference and communication abilities, preferences, and anxieties, as well as the past and present medical history. This population also has a greater likelihood of chronic medical conditions,12,13 may consult with several medical specialty providers and may be on multiple medications. A comprehensive review of all medical records is essential in the evaluation process and critically important in formulating a diagnosis and prescribing treatments for both chronic and acute conditions.

Elements Required to Obtain a Useful and Valuable Clinical History

  • It is critical to provide as comfortable a setting as possible, in a quiet location with minimal distractions. It is important to speak softly, move slowly, and provide a reasonable amount of time for the person with IDD to adapt to the environment and the people in it. Furthermore, when conducting a physical examination, it is important to say what you are going to do before you do it, to give the person time to prepare, comply, and cooperate.
  • Be aware of the person’s communication style and mannerisms that help in gathering important historical information, and in conducting the physical examination to provide additional information for the diagnostic assessment.
  • Examine and explore the person’s patterns relating to daily health and routine. This includes eating habits, sleeping habits, bowel and bladder routines, exercise routines, work routines, social routines, as well as habits such as smoking or drinking alcohol or other emotional outlets.
  • Inquire about any changes that may have taken place in any of the daily routines, as well as changes in the person’s weight and vital signs. It is also strongly advisable to obtain a history of living circumstances, past and present, with attention to any changes that may have taken place in the recent past.
  • Review past medical history which includes all past physical health related episodes, previous diagnoses, notes from specialty health care providers, previous emergency room visits, hospitalizations or surgeries, history of allergies, past medications, medication responses and reactions, current medications (including the duration of the regimen, with exploration of possible drug interactions), and past history of behavioral responses to medical, social, and environmental experiences.

Application of these principles in clinical approach will help to create a comprehensive multidimensional picture of the patient and the complex interplay between physiological, psychological, social, emotional, and environmental factors. It also helps guide an assessment of the current clinical challenge to determine whether further evaluations or referrals are necessary, and assure a more accurate diagnosis, more appropriate treatment and therapeutic recommendations, and more favorable outcomes.

Other Assessment and Treatment Considerations

For any provider of mental health services for people with IDD, be it a primary care provider or specialty provider, it is important to be aware of the physical health conditions that may manifest as mental health or behavior disorders. There are many conditions that are not obvious on physical examination that should be considered, most commonly, gastrointestinal disorders of GERD and constipation. The following should be considered:

  • It is critically important to take as good a history as possible from the patient, as well as from family members, and other care providers because the more perspectives that are considered, the easier it is to make a diagnosis.
  • Assistance with the clinical interview by someone who knows how to elicit accurate responses from the patient is highly desirable.
  • Ask informants to describe as accurately as possible what they saw and heard, rather than offering opinions, hypotheses, or even diagnoses.
  • It is also helpful to inquire about a timeline that begins from baseline wellness to changes in presentation (medication changes, altered eating, drinking, sleeping, weight, etc.) to understand potential contributing factors might be helpful in clinical assessment.
  • A review of medical and psychiatric histories as well as environmental and social history is essential.
  • Be aware of the medical conditions that may be present with behavior changes or challenges, most notably, constipation.
  • Conduct a broader based physical examination than would be usual for patients, looking specifically for common causes of irritability and aggression.
  • Obtain laboratory tests and X-rays where appropriate and consult with specialty providers, as
    necessary.
  • Be aware that other practitioners may also have minimal historical information that can result in
    misdiagnosis. 
  • There are common side effects of medications, particularly psychotropic medications that can explain some of the presenting symptoms or findings.
  • People with IDD have atypical nervous system functions, responses, and reactions that may result in unusual presentations of physical or psychological conditions, as well as other organic system anomalies that place them at elevated risk for a variety of health problems and potential adverse drug events.

Conclusion

People with IDD experience higher rates of health problems than the general population— often with unique presentations, chronicity, and complex interactions between physical and mental health. These problems may go unrecognized, misdiagnosed, or undertreated, due to communication challenges, diagnostic overshadowing, and systemic barriers. It is therefore incumbent upon health care providers and prescribers to employ an integrated health approach and consider all factors that may impact the effectiveness of a mental health diagnosis and treatment formulation for a person with IDD. The treatment plan should incorporate appropriate health promotion strategies to be optimally effective.

References

  1. Intellectual and Developmental Disabilities. 2016;54(1):63–76.
  2. World Health Organization. Health Promotion. https://www.who.int/health-topics/healthpromotion. Published June 20, 2025. Accessed June 20, 2025.
  3. Marks B, Sisirak J. Health promotion and people with intellectual disabilities. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:13–26.
  4. Marks B, Sisirak J, Heller T. Health promotion and people with intellectual disability. In: Taggart L, Truesdale M, eds. Physical Health of Adults with Intellectual and Developmental Disabilities. Springer; 2019:359–379. doi:10.1007/978-3-319-90083-4_18.
  5. Chaplin E, McCarthy J. Mental health. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:171–188.
  6. Dean S, Marshall J, Whelan E, Watson J, Zorbas C, Cameron AJ. A systematic review of health promotion programs to improve nutrition for people with intellectual disability. Curr Nutr Rep. 2021;10(4):255–266.
  7. Sisirak J, Marks B. Framing food choices to improve health. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:70–84.
  8. Slevin E, Northway R. Obesity. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:75–94.
  9. Esbensen AJ, Schwichtenberg AJ. Sleep in neurodevelopmental disorders. Int Rev Res Dev Disabil. 2016; 51:153–191. doi:10.1016/bs.irrdd.2016.07.005
  10. Werkman MF, Landsman JA, Fokkens AS, et al. The impact of the presence of intellectual disabilities on sensory processing and behavioral outcomes among individuals with autism spectrum disorders: a systematic review. Rev J Autism Dev Disord. 2023; 10:422–440.
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  13. Anderson LL, Humphries K, McDermott S, Marks B, Sisirak J, Larson S. The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellect Dev Disabil. 2013;51(5):385–398. 

    Additional Resources

  • Intellectual and Developmental Disabilities. 2016;54(1):63–76.
  • World Health Organization. Health Promotion. https://www.who.int/health-topics/healthpromotion.
    Published June 20, 2025. Accessed June 20, 2025.
  • Marks B, Sisirak J. Health promotion and people with intellectual disabilities. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:13–26
  • Marks B, Sisirak J, Heller T. Health promotion and people with intellectual disability. In: Taggart L, Truesdale M, eds. Physical Health of Adults with Intellectual and Developmental Disabilities. Springer; 2019:359–379. doi:10.1007/978-3-319-90083-4_18.
  • Chaplin E, McCarthy J. Mental health. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:171–188.
  • Dean S, Marshall J, Whelan E, Watson J, Zorbas C, Cameron AJ. A systematic review of health promotion programs to improve nutrition for people with intellectual disability. Curr Nutr Rep. 2021;10(4):255–266.
  • Sisirak J, Marks B. Framing food choices to improve health. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:70–84.
  • Slevin E, Northway R. Obesity. In: Taggart L, Cousins W, eds. Health Promotion for People with Intellectual and Developmental Disabilities. Open University Press; 2014:75–94.
  • National Association of Councils on Developmental Disabilities (NACDD). DD Act and Other Major Federal Legislation. https://nacdd.org/major-federal-legislation/. Accessed October 10, 2025.
  • Roll AE. Health promotion for people with intellectual disabilities: a concept analysis. Scand J Caring Sci. 2018;32(1):422–429. doi:10.1111/scs.12448
  • Rosenbaum PL, Palisano RJ, Bartlett DJ, Galuppi BE, Russell DJ. Development of the Gross Motor Function Classification System for cerebral palsy. Dev Med Child Neurol. 2008;50(4):249–253. doi:10.1111/j.1469-8749.2008. 02045.x
  • Rubin IL, Merrick J, Greydanus DE, Patel DR. Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan. Springer; 2016.
  • Taggart L, Cousins W. Health Promotion for People with Intellectual and Developmental Disabilities. McGraw-Hill Education; 2014.