Experiences of Disabilities in Adults

Adults living with intellectual disabilities experience challenges while trying to assimilate into society and try to adjust to family in the changing cultural scenario. The experiences of adults are also diverse because of the family situation and their response to the kind of care provided to them at the hand of their caregivers. Even if patients are living in their homes and not in a healthcare institution, there are several needs for appropriate care that need to be monitored. 

Depending on the intellectual or developmental disabilities, the requirement for services varies. Other factors that influence the need for support depend on the age of the patients and the caregivers, as well as their social and cultural background. In addition, the education and awareness of the caregivers can also significantly impact the level of care they can provide to their loved ones, which would, in turn, influence the overall experience of adults with disabilities. 

Services used by and needs of adults with functional limitations 

With patients suffering from intellectual and developmental disabilities, there are several functional limitations. One major challenge is adjusting to the increasing loss of autonomy as the severity of the disease increases or as the patient reaches the later stages of their life. The Disablement Process Model outlines the impact of intellectual and developmental disabilities that lead to physical impairments, eventually leading to severe functional limitations, especially when doing daily chores and making everyday decisions. 

Functional limitations impact the social activities along with the personal and professional life of the adult. Because of a lack of autonomy, the dependence on caregivers increases drastically. Services used by the individuals in such a case would be highly dependent on healthcare professionals as well as the members of the community for successful social integration. 

Caregivers would be the source of providing significant support in terms of mental and physical health, especially with an increase in the deterioration of their condition. Older adults also experience a greater need for assimilation into society through support groups or other cultural activities that encourage leisure and socialization. Finally, older adults also require services and support in terms of self-care.

Health insurance coverage and health care experiences of persons with disabilities in the NHIS-D

A significant aspect of living with a condition that leads to functional limitations is whether the treatment and subsequent costs are covered by health insurance. Whether the individual has functional limitations due to intellectual or developmental disabilities or other reasons, health insurance coverage significantly impacts how the patient and their families will cope with a long-term condition. 

Additionally, the adjustment would be particularly difficult in case of a lack of coverage for a state which constantly requires different support and services. Certain variables like gender and age can be considered to understand the extent of impact individuals based on their socio-cultural constraints. From 1994 to 1995, the National Health Interview Survey Disability Supplement (NHIS-D) collected data corresponding to the experience of people with IDDs with health insurance coverage. It was a door-to-door survey to have a better understanding of the backgrounds of different individuals. NHIS-D considered the following factors while collecting data: 

  • Functional limitations
  • Demographics (social, cultural, etc.)
  • Services used and required

Individuals considered the factors mentioned above in the United States from both noninstitutionalized and civilian populations.

Research in developmental disabilities services in the United States

The Center for Disease Control, or CDC, undertakes research on developmental disabilities services in the United States. The primary way to know how much a particular disease or disability has affected the national population is the numbers in the consensus that need monitoring. 

Tracking is a significant aspect of determining how many people (from their respective backgrounds, age groups, and genders) are affected by a particular IDD. Tracking is essential to see if the numbers are consistent, increasing, or decreasing. In addition, it can help in planning adequate support systems and outreach programs in different communities per their need. 

The Autism and Developmental Disabilities (ADDM) Network and CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) aim to find the root cause of such IDD and prevent the rise in the number of citizens affected by it. After tracking, the CDC controls the research process to implement strategies for disease control effectively. In addition, national surveys like National Health Interview Survey (NHIS) help collect essential data to help track and make targeted policies for individuals. 

Health promotion for adults with intellectual and developmental disabilities

Health promotion is a crucial healthcare procedure that helps in providing individuals with the right type of services. However, for persons with intellectual developmental disabilities, the concept of health promotion needs to expand. The policies for health promotion for people with IDD on a federal level need to be monitored and modified based on their requirements and functional limitations. Health promotion for individuals living with intellectual and developmental disabilities focuses on the following:

  • Awareness and education about health services
  • Maintaining and cultivating habits that support a healthy lifestyle
  • Including supporters from family and community
  • Making policies that are centered around the individual rather than the system

If these four aspects are taken into consideration, there is a great chance of increased autonomy. It will also increase the social integration of people with IDDs even as their age progresses or if they have functional limitations. An important objective remains improving the overall quality of life. Through the effective implementation of better health promotion policies, many health disparities can be removed.

Recognizing mental health issues among persons with intellectual and developmental disabilities

As an adult with IDD tries to find autonomy and their personal and professional life, they must adjust to emerging challenges arising from changing labor markets and cultural scenarios. When individuals with ODD or who are susceptible to mental illnesses try to integrate into different social situations, many opportunities are restricted because of their functional limitations. 

Due to an IDD, individuals run a high risk of contracting certain mental illnesses, leading them farther away from general opportunities like employment or housing. Equipping healthcare professionals with adequate literature to increase awareness can help reduce the limitations that patients might end up feeling due to a lack of treatment for additional issues. In addition, medical professionals can provide a more holistic healing approach if they are made aware of the risks that are associated with living with an IDD. 

Intellectual Disability, Aging, and Health

Later stages of life for people living with intellectual and developmental disabilities can pose new challenges for both eth individuals and their primary caregivers. Aging not only factors the increasing functional limitations of both the individual and primary caregiver but also the changing demands of society and the ever-changing cultural scenario. For an individual, adjusting to increasing age can be especially difficult if their existing condition makes them susceptible to other mental illnesses. 

For instance, people with Down Syndrome are more likely to develop Alzheimer’s as they reach old age. Another aspect is their susceptibility to depression. It can cause an increased burden on their families as the individual struggles to keep up with their previous autonomy. A developmental approach to care and welcoming the individual's input in their care can reduce feelings of neglect or helplessness. It is especially appreciated by patients who are involved in end-of-life care.

Addressing all the factors that lead to increased vulnerability of individuals living with IDDs can create a better scenario for coping with changing medical and functional needs. Life expectancy for adults with IDDs has increased with medical advancements. However, it still remains significantly lower than that of people without IDDs. But, considering the mental and sociological impact on their health, the quality of life of such persons can also be positively impacted.