What if you are not prepared to make the right call? What if you do not know the names of the medications you take or your medical history? What if you depend on someone else to make nearly all of your medical decisions? Adults with developmental disabilities are often confronted with this reality. Self-determination, choice, and advocacy are major themes in the services and supports provided to adults with developmental disabilities. Individuals are provided training and assistance making decisions on which programs to attend, where to live, how to vote, and many other life decisions. Unfortunately, there is not as much focus on health and wellness and taking control of health care decisions. Most individuals living with a developmental disability rely on family members, guardians, or paid professional staff for support in making major life decisions.
As a vocational and transitional employment service provider for adults living with developmental disabilities, Easter Seals TriState is in a unique position to help individuals learn how to be more involved in their health care decisions. The individuals we serve spend more time with us than they do with most other people in their lives. Easter Seals TriState’s Addressing Health Disparities project, made possible by a generous grant from Bethesda Inc., aims to use this time to assist individuals with overcoming barriers to becoming more engaged in their health care. The materials provided by the MakeTheRightCall campaign gives us wonderful resources to provide education to people whose unique needs are often overlooked in the medical community. For example, in addition to carrying identification, adults with disabilities should also have their doctor’s name and phone number listed and their caregiver should ask about physician after-hours procedures to be prepared in advance in case they need to contact the doctor.
Adults with developmental disabilities also face numerous challenges when seeking to obtain health care. These challenges include attitudinal, physical, and communication barriers in addition to having low health literacy skills and a fear of examinations. Obviously, these challenges make it difficult to establish a relationship with a primary care physician. If you know or take care of an adult with a developmental disability, check out the “MaketheRightCall” campaign, including videos like this one to educate everyone on the importance of getting quality care in the appropriate location:
I also encourage you to contact Easter Seals at www.eastersealstristate.org to learn more about local programs and resources to support individuals with disabilities in our community.
Jonathon Sherwood, M.Ed.
Easter Seals TriState