As children with IDD (down syndrome, cerebral palsy and other developmental disabilities) age into adulthood, they face unique challenges navigating the healthcare system in the US. It’s a growing concern and the healthcare system is now taking notes to answer the question of “how to provide care for our aging IDD population”.
Adults aging with IDD continue experiencing earlier age-related health issues, limited access to quality health care, and fewer financial resources. Access to timely Healthcare can be limited for people with IDD due to a variety of factors. As people with IDD age, healthcare professionals and family members face the challenge of extending their support as age-related issues come to the forefront.
Although in the US, there are measures to support IDD children, now with age-related factors, it’s important to learn how to care for adults with IDD as they age.
Statistics of the aging IDD population:
| The percentage of children aged 3–17 years diagnosed with a developmental disability increased–from 16.2% in 2009–2011 to 17.8% in 2015–2017.Specifically, diagnoses increased for attention-deficit/hyperactivity disorder (ADHD) (8.5% to 9.5%), autism spectrum disorder (ASD) (1.1% to 2.5%), and intellectual disabilities (ID) (0.9% to 1.2%). – Source |
| 7.38 million people in the US had IDD in 2017.1.48 million (20%) people with IDD were known to or served by state IDD agencies 1.28 million (17%) people with IDD received long-term support or services through state IDD agencies. – Source |
| Adults with IDD, especially those living in residential care settings, were more likely to die from COVID-19 than the general population. Among adults diagnosed with COVID-19 in 2020, those with IDD were 2.6 times more likely to die than those without IDD, based on data from 11 U.S. states and the District of Columbia. COVID-19 death rates were consistently higher for people with IDD living in congregate residential settings (such as group homes) and receiving 24/7 nursing services. Like other adults, people with IDD were more likely to die from COVID-19 if they were older or had underlying conditions such as heart disease, cancer, or chronic kidney disease. – Source |
| Percentage of adults with functional disability types: 13.7 percent of people with a disability have a mobility disability with serious difficulty walking or climbing stairs.10.8 percent of people with a disability have a cognition disability with serious difficulty concentrating, remembering or making decisions. 6.8 percent of people with a disability have an independent living disability with difficulty doing errands alone. 5.9 percent of people with a disability are deaf or have serious difficulty hearing 4.6 percent of people with a disability have a vision disability with blindness or serious difficulty seeing even when wearing glasses. 3.6 percent of people with a disability have a self-care disability with difficulty dressing or bathing. – Source |
Challenges & Solutions:
“With longer life expectancies, this population is growing fast. … Medical schools have never kept pace with this change.” – Matt Holder, MD, MBA Past President, American Academy of Developmental Medicine and Dentistry
Life expectancy in adults with IDD has grown rapidly in the past few decades by continuing to trail the general population by 20 years. Those with mild to severe IDD are able to live well into their late 60s. While those without IDD live into their 80s and beyond.
Thanks to the Individuals with Disabilities Education Act, until the age of 21, people with IDD are eligible to receive free appropriate public education tailored to their needs. This enables them to fully participate in the community while living the life they desire. After the age of 21 is when it gets tricky. There’s a need for community and family-backed care as they get prepared for the onset of aging-related health changes in adults with IDD.
Some of the key challenges & solutions to note:
- Accessing health care:
People with IDD often find it challenging to access primary care and receive regular health checkups. Inaccessibility to health clinics, communication gap with the care providers, and forgetting to schedule appointments and keeping reminders for the same are some of the challenges. Adults with IDD also experience anxiety when they arrive for their appointments, indifference from the staff members, and overall poor quality of care. This instills low confidence and the habit of missing appointments makes them prone to age-related chronic issues early on. Regular health checkups tailored for people with IDD, staff education and training, and a public policy for preventive care for aging adults with IDD are the solutions.
- Getting the word out:
People with IDD develop more chronic issues compared to those without IDD. This happens due to underlying biological issues and the associated developmental disabilities. When these issues come to the forefront, it becomes difficult for the healthcare providers, family members, and the care recipients themselves to deal with the situation on hand. Hence it’s critical to get the information out there and build more awareness around this topic. This can be achieved through health screenings, regular follow-ups on the same, targeted health education programs, and communities promoting these programs locally. Similarly, medical schools need to have hands-on clinical training that prepares them to provide quality care to IDD care recipients. Even though medical schools are yet to catch up on providing care for all types of patients, some are already there. For example, “Baylor College of Medicine in Houston offers a month-long Life with IDD elective that places students in clinical settings, including pediatric hospitals, an adult clinic, and day programs for people with IDDs. They also visit patients’ homes.” – Source. Currently, for the most part, there’s a gap in education and medical students have had no exposure to people with IDD. However, with few universities taking steps in the right direction, we’re hoping the gap in education will be closed soon.
- Changing attitudes:
aging with IDD can be complex, for example, adults with Down syndrome experience accelerated aging along with a risk of developing Alzheimer’s disease. Apart from keeping reminders on regular health checkups for the care recipients, family physicians can promote autonomy and address certain vulnerabilities. They can take the extra step of understanding and assisting people with IDD to make decisions on their own while providing as much support as possible. Since it’s a scary world out there for people with IDD, FPs can provide much-needed comfort and play a pivotal role in their lives.
- Creating livable conditions:
Creating livable conditions for people with IDD is another way to bring a level of homeliness to their lives. Modifying their homes by adapting assistive technologies can enable them to live and function as they desire. These actions along with support from family members can have a positive effect on their psychological health. With this step, a quarter of the battle can be considered won.
Conclusion:
Aging people with IDD (Intellectual and Developmental Disabilities) deserve to live the same quality of life as those aging without IDD. And rightfully so. People aging with IDD wish to maintain their mental and physical health while functioning independently without any help. They also desire to build friendships, contribute to society and be an active member of the community.
We hope there are more articles published on this topic and we hope people have more conversations about this. It may not help us solve the issue immediately, but rather help us move in the right direction.