New website offers resources for those with disabilities
Joe might be alone in enjoying visits to the doctor, but a visit to the primary care office is always a fun outing for him and his mom. As Joe has gotten older, his doctor has started to communicate directly with him and relied less on his mom to do all the talking.
This has all been to prepare Joe, who has Down syndrome, for the day when he’s old enough to come to the doctor’s office alone, while his mom waits in the car.
Navigating the healthcare system is no easy feat for someone with a chronic health condition. Keeping track of appointments, having paperwork for insurance and program enrollment and managing provider visits can be overwhelming for anyone. Now, add to that, difficulties expressing how you feel and what your primary health concerns are.
For older teens with intellectual and developmental disabilities (I/DD), things like a My Health Pocket Guide are another tool they can use to talk with their doctors or fill out paperwork. Additional resources like fact sheets about the differences between pediatric and adult care help ease anxieties surrounding upcoming changes.
While caregivers work tirelessly to prepare young people with I/DD for this transition to adulthood, there’s another resource available to help. Movingtoadulthealthcare.org was recently launched by the Center for Transition to Health Care for Youth with Disabilities, a national resource center funded by the Administration for Community Living (ACL) Administration on Disabilities (AoD). This website is designed to support youth and their families as individuals with I/DD age into adulthood.
The person-centered and culturally competent tools and resources on the site are free for download and were developed with and for youth. Additional contributors to the website include Family Voices, Got Transition, SPAN Parent Advocacy Network and University of Missouri Kansas City.
At FEI, we applaud these efforts to make information about care and services more accessible to those that need them. We support initiatives that contribute to helping individuals have greater autonomy over their care so they can receive the services they need to thrive.
