While the majority of healthcare providers encourage disabled adults to assume their own health responsibilities after childhood, there is a lack of preparation for the transition of care from childhood to adulthood. In the case of disabilities that are developed or diagnosed later on in adolescence, this is even more difficult due to the sudden nature as discussed in the conversation with Pomona College student Aleja Hetzler-McCain. This is due to a variety of factors including the following:
The transition from pediatric to adult healthcare can be daunting, even more so for those who identify with developmental disabilities.
- Only 40% of youth with special healthcare needs receive health care transition services, Less than a quarter of youth with ASD do (1).
- It is even more important for individuals with developmental disabilities (e.g. Williams syndrome, Down syndrome, ASD, fetal alcohol syndrome, etc.) to consistently visit their healthcare provider as they have a greater chance of developing gastrointestinal issues, eczema, allergies, chronic conditions, etc. compared to the general population (2).
Differences in Culture and Style of Pediatric and Adult Care
- There are usually many more pediatric, specialized support clinics (e.g., autism clinic or spina bifida clinic) compared to the number of adult, specialized clinics
- It is increasingly difficult for neurodiverse adults to receive the targeted care they need
- Developmental pediatricians are trained to work with children specifically with developmental disabilities
- There is no such specific training/job in the realm of adult care
- There are few trained primary care physicians to accommodate specific disabilities, so developmental pediatricians may also end up taking on a lot of adult patients
- Medical homes, which tend to assist with a child’s holistic health needs, are more common in pediatric centers, whereas there are much fewer in adult care
- Medical homes were first developed in pediatrics to provide comprehensive, family oriented care for children with special needs
- There is a lag and lack of funding in creating similar systems for disabled and neurodiverse adults
- Greater expectation of autonomy for adult patients
- Pediatric care focuses on family-centered decision making and significant parental involvement in care-related decisions
- Providers make recommendations and referrals but expect the adult patient themselves to follow through, requiring high levels of autonomy and independence that disabled individuals may not have
The Role family/Parents play in the transition of care
Parents or guardians are the primary decision makers for children; however, unless petitioned for, parents do not have parental right to make decisions for adults. For many disabled individuals, their parents or family are vital in assisting and providing through various means even after the healthcare transition, such as supported decision making. However, we can’t solely rely on parents to continue assisting their children well into adulthood as that reliance creates large burdens for them like caregiver burnout or financial loss. Rather, we need to create systems in which disabled individuals have multiple support networks working with them to maximize their potential and independence, such as those that exist in medical homes (holistic health networks).
Ableist ideology tends to be more flexible throughout childhood as children are expected (to a certain extent) to misbehave or throw tantrums. Yet, when adulthood is reached, there is a heightened stigma regarding the absence of traits deemed acceptable under the medical model of disability. When parents were asked what the important factors of a successful transition to adulthood, they didn't focus on striving for complete normality or independence; rather, they discussed reaching their child's full potential such as discovering their interests, having jobs skill training, or developing relationships with peers (4).
Why are adults expected to grow up overnight and are deemed “invaluable” if they don’t? Disability can be attributed to historic abuse, burnout, trauma, poor diet, or a combination of various factors throughout life. Oppression only leads to further isolation - maybe we need to consider that adult systems can be overwhelmed, requiring holding and support as well.
Why are adults expected to grow up overnight and are deemed “invaluable” if they don’t? Disability can be attributed to historic abuse, burnout, trauma, poor diet, or a combination of various factors throughout life. Oppression only leads to further isolation - maybe we need to consider that adult systems can be overwhelmed, requiring holding and support as well.
Preparing for the Transition of Care
According to Dr. Eric Levey, transition of care requires direct age-appropriate instruction to the patient (3). Age relevant information (ex: sex education) and future responsibilities/independence can be given at different stages of adolescence when they are old enough to understand.
Researchers and advocates have created resources to help providers understand and prepare individuals for the transition of care, such as:
According to Dr. Eric Levey, transition of care requires direct age-appropriate instruction to the patient (3). Age relevant information (ex: sex education) and future responsibilities/independence can be given at different stages of adolescence when they are old enough to understand.
Researchers and advocates have created resources to help providers understand and prepare individuals for the transition of care, such as:
- Got Transition, a nationally-funded resource center on care transition, recommends beginning this conversation on developing care transitioning policy at the age of 12-14 for all individuals. Throughout this longitudinal healthcare transition process, physicians need to work with social workers and other support roles to help navigate other systems such as occupational or educational as individuals grow into adulthood.
- The Vanderbilt Kennedy Center has developed toolkits to help equip primary care practices with the necessary skills and information regarding the care for adults with intellectual and developmental disabilities. (iddtoolkit.vkcsites.org/)
- The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has also developed an online toolkit to help providers with autism spectrum care and create customized accommodation profiles for autistic adults. (https://autismandhealth.org/)
Sources
(1) Cheak-Zamora, N. C., Farmer, J. E., Mayfield, W. A., Clark, M. J., Marvin, A. R., Law, J. K., & Law, P. A. (2014). Health care transition services for youth with autism spectrum disorders. Rehabilitation Psychology, 59(3), 340–348. https://doi.org/10.1037/a0036725
(2) CDC. (2019, September 26). Facts About Developmental Disabilities | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
(3) https://www.healio.com/news/pediatrics/20150612/j847_2806_1_news_print_1
(2) CDC. (2019, September 26). Facts About Developmental Disabilities | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
(3) https://www.healio.com/news/pediatrics/20150612/j847_2806_1_news_print_1