The Importance of Integrated Care for Individuals With Intellectual and Developmental Disabilities

Seth M. Keller, MD

People with intellectual and developmental disabilities (IDDs) commonly have complex healthcare challenges. An IDD is a condition that is a result of an abnormality beginning during a person's neurodevelopment, often occurring in utero but also possibly occurring up to age 18. Any injury or maldevelopment of the nervous system can often result in lifelong health complications in this population, including those involving intellect, language, motor skills, vision, hearing, swallowing, behavior, autism, seizures, digestion, and many other areas. IDDs may be the result of genetic anomalies, infections, trauma, nutritional irregularities, or exposure to toxins. The associated health complications can vary widely in their severity and often will last throughout the person's lifetime.

Without proper management and support these wide-ranging difficulties can and often do cause tremendous personal, social, and financial strains on individuals and their families. One's quality of life and daily activities can be maximized if a person-centric system can be developed and structured to help these individuals and their caregivers. Various forms of support are often needed to help care for these individuals to varying degrees throughout their lives. Families, of course, are often deeply involved in the day-to-day care. Community-based supports are often needed to help enable the individual to achieve a higher level of functioning and maintain various abilities. It is typical for assistance to come from occupational, physical, cognitive, behavioral, and speech therapeutics. Socialization is also extremely helpful in enabling the person and their family to create a community and societal base for inclusion, value, and hope for a happy and healthy future. In many communities across the country organizations such as Special Olympics and various family advocacy groups flourish in this type of role.

Healthcare Supports

Healthcare supports are also an extremely important part of the individual's care. The need for special medical care may be recognized even as early as when the individual is born. Respiratory and/or motor dysfunction may be evident immediately upon birth. Infant mortality is a concern because of healthcare issues and disabilities, and these concerns typically continue as the child grows up. Although there is a regrettable history of marginalization and segregation of this population group within society, in more recent years social advocacy and policy have made great strides forward. Neonatal and pediatric systems of care have blossomed over the past few decades thanks to advances in research, education, and training. University and academic centers of excellence in the care of individuals with IDDs are spread throughout the United States as well many places around the world.

Attention has focused mainly on maternal fetal health, as this was considered to be the initial key time period in which much of the early interventions were needed. Life expectancy only several decades ago was relatively short for many people with IDDs, and thoughts and concerns for those who age and become adults was less of a focus. However, because of years of aggressive care, people with IDDs are now living into adulthood more frequently, but unfortunately their healthcare needs are often not being met. Healthcare providers who focus on adults with IDDs generally do not receive the education or training or have the experience necessary to care for the IDD population. This shortfall often results in poor patient care outcomes and dissatisfaction with how care is being provided. Health disparities and poor access to quality services are pervasive in the United States and across the world.

Integrated Care

Aside from gaining the much-needed knowledge on how to care for and support those with IDDs, healthcare providers also need to appreciate that integrated care is another essential element in being able to provide best practices and help ensure that optimal outcomes of care are achieved.

Individuals with IDDs often have multiple health complications, and their care is usually provided by a number of different healthcare providers, including a primary care provider, various healthcare specialists who focus on their particular areas of concern, an oral health provider, and a behavioral specialist(s), if needed. Multiple medications typically are also being provided by these assorted practitioners. Commonly, a therapeutic provided by one healthcare provider may potentially have an impact on a therapeutic being prescribed by another healthcare provider. Examples may include medications that could possibly cause various behavioral disturbances, and these changes may mistakenly be thought of as being related to a primary psychological condition and not due to a side effect. Medications and various health complications may cause oral health anomalies such as dry mouth, gum disease, tooth erosion, and more. The oral healthcare provider would be the one to observe and identify these abnormalities and could convey this information to the other medical healthcare providers so that they could enact a change in their treatment approaches. Being able to discern whether a patient is experiencing side effects can be challenging, especially if he or she has baseline intellectual and language dysfunction.

Communicating and appreciating how the person with an IDD is feeling and reacting to any various therapeutics requires openness and understanding among all of those involved in the care and support of the individual. This communication is not only among the healthcare practitioners but also the caregivers and any therapists who may be directly involved. The American Academy of Developmental Medicine and Dentistry appreciates that integrated care is essential to providing care to those with IDDs. The name of the organization itself includes both medical and dental aspects, and the organization's guiding principles include the concepts of integrated care, person-centered and family-centered approaches, and a deep appreciation for the importance of values and inclusion in a community.

Continuing to provide education and training to healthcare practitioners is a key to improving health outcomes for individuals with IDDs. Additionally, focusing on the importance of integrated care will ultimately lead to a reduction in health disparities and improve access to quality healthcare services.

About the Author

Seth M. Keller, MD
Private Practice, Board-Certified Neurologist, Lumberton, New Jersey; Past President, American Academy of Developmental Medicine and Dentistry; Co-President, National Task Group on Intellectual Disabilities and Dementia Practices; Fellow, Past Chair Adult IDD Section, American Academy of Neurology