Caring for diverse patient populations presents a lot of new and unique challenges for patients, providers, and family members. This week, I’m going to focus on one patient population in particular: Individuals with intellectual and developmental disabilities (IDD).
Throughout college, I have volunteered with and have been a peer mentor for the Best Buddies chapter at Union College. Best Buddies is a non-profit organization that strives to support individuals with IDD by providing them with one-on-one friendships, employment opportunities, development of leadership and communication skills, and self-advocacy skills. Being a part of Best Buddies has been a very rewarding experience, and has also shown me some of the challenges that individuals with IDD face everyday.
One of the challenges that individuals with IDD face is communication. Often times, they can have difficulty communicating effectively with others, which can prevent them from being able to express their thoughts and feelings to family members, friends, or even healthcare providers.
Integration into society and employment are also two major challenges (1). Many individuals do not have a post-secondary education and aren’t able to access resources that would allow them to obtain internships or other experiences. Additionally, the stigma that exists surrounding intellectual and developmental disabilities can lead to social isolation and negative perceptions of hiring individuals with IDD.
These challenges and more combine to leave individuals with IDD with increased mental health problems, little to no income, and lower levels of independence (1).
Role of Caregivers & Healthcare for Individuals with IDD
Many individuals with IDD live with their families and rely on them for financial and emotional support, as well as advocacy. However, there is not always enough support for families that are caring for individuals with IDD. Many families are expected to provide lifelong care, but this is not feasible in some situations and extra support is needed (2). In Albany, St. Margaret’s Center provides 24-hour care and support for children with disabilities. This includes pediatric care, group activities, and helping families navigate insurance and other services. This is a very helpful option for families of younger children with disabilities, and it would be great to see similar resources for adults with IDD that face some of the same challenges.
In healthcare settings, the challenges faced by individuals with IDD can lead to poorer health outcomes, even with advocacy by caregivers. Individuals with IDD face higher rates of co-morbidities and chronic conditions, as well as challenges in understanding their own healthcare issues and the services that are available to them. A lot of providers don’t receive enough training and don’t have experience in communicating with and caring for individuals with IDD (3).
Some additional resources for individuals with IDD, such as this Early Intervention Program in New York, are listed here.
While there are a lot of improvements to be made in supporting individuals with IDD and their caregivers, we can start by understanding the unique challenges this population faces and how these challenges create barriers to integration and care.