By Margaret Walsh, M.A., BCBA
One key to living a long and healthy life is to visit your doctor and dentist regularly. This is true for everyone, including adults living with intellectual disabilities (ID). If you are a family member or caregiver assisting someone with ID who needs dental or medical care, you can be most effective by helping him (or her): 1) find the right provider, 2) prepare for the visit, and 3) communicate concerns clearly.
Adults with ID need care that is individualized and easily accessible. Helping these men and women access the services they require can be difficult because of their complex medical needs. Some healthcare professionals may lack appropriate training to sensitively provide the kinds of services that people with ID desperately need. In the absence of a skilled and sensitive provider, routine healthcare appointments can provoke anxiety and create situations that these adults will avoid because they are physically and emotionally draining. Caregivers can help by taking an active role in assisting the individual to select the best doctor or dentist for his specific needs.
Another way caregivers can help is by working with the individual to carefully plan the appointment. What can he do ahead of time to feel more emotionally prepared for the visit? What will he do if he has to wait to see the doctor? If he has difficulty waiting, try to get the first appointment of the day. Those appointments can be hard to get, however, and eventually there will come a time when there will be unexpected waiting. It is important to have several preferred items with you (such as an iPad) that the person can use to occupy his time while he waits. These items can make a long wait more bearable and can provide some respite from the anxiety of the pending examination or procedure. Having him choose these items and get them ready for the appointment can also be a positive way to help him prepare.
Finally, you can assist an individual with ID during a medical or dental appointment by helping him communicate with the provider. A medical professional has a very short period of time during an examination to discuss health concerns and build rapport with patients. For a person with ID, this time period may seem even shorter and confusing. The medical provider may not understand what he is trying to convey or does not understand how to appropriately interact with him. It is important to allow the person who is being examined to have as much control as possible. Caregivers can help the individual communicate his needs to the doctor or dentist if he is reluctant to advocate for himself or has communication deficits that make this impossible. Be prepared to ask the provider to communicate any health concerns or information to the individual in a way that he understands. Most medical providers build strong relationships with adults with ID by having honest conversations about the care they are providing and by listening to feedback on how to best meet the person’s needs.
Appropriate, accessible, and effective medical care for adults with ID is a key indicator for positive quality of life outcomes for this population. When adults with ID and their caregivers take the time to prepare for medical appointments and feel comfortable and empowered to communicate their healthcare needs to medical providers, the care they receive is more likely to be individualized, informed, and effective.
Margaret Walsh, M.A., BCBA, is the Clinical Director for the May Center for Adults Services in Western Massachusetts. She can be contacted in West Springfield, Mass., at 413-734-0300 (ext. 262) or at mwalsh@mayinstitute.org
About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit www.mayinstitute.org.
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