My name is Carolyn DeJean Christiansen. I was the guardian for my brother, Johnny, who was a person with a profound intellectual disability. Johnny had been placed in a state operated facility in Illinois when he was a young child. Years later the State transferred him to a nursing home. Johnny was nonverbal, and he suffered years of mistreatment causing him to become blind and no longer able to walk at all. We finally managed to get him served, with dignity, in the community. As he aged, his health declined. I struggled trying to get Johnny good care in medical institutions like hospitals and nursing homes because medical personnel could not understand his unique needs. Because they did not understand his method of communication they didn’t know that he had wishes, fears and suffered pain.
I was a former Chair of the State of Illinois Consumer Advisory Council. I was actively involved in Johnny’s life and services. Because I was well experienced supporting loved ones in hospitals and nursing homes, I realized that medical personnel wanted to give Johnny the best care but their lack of information and experience hampered them. Also, I didn’t know what I should expect from service providers, nor what they should expect from me, as Johnny’s guardian.
I began formulating an idea of what I thought was lacking in the effective communication among individual/guardian, hospital, and community residential service provider. With my new found information (or lack of it) I approached people who were experienced serving people with intellectual disabilities in the community. We realized that there was a need a consistent communication/information tool for medical personnel. We reached out to others, including people with intellectual disabilities, advocacy organizations, medical institutions and medical schools of learning, insurance managed care, and State of Illinois guardianship offices. With input from all of these diverse groups we created a Health Resume to help communicate an individual’s unique information to medical personnel. This will help them give the best treatment in an emergency and during hospital stay.
This blog is to communicate the steps we are taking to promote Better Communication, Better Healthcare and to give others the opportunity to share their stories about medical services for people with intellectual disabilities, whether positive or challenging.
I will be sharing the small steps we are making to improve services for people with intellectual disabilities. Remember, the only way to make lasting change is with thousands and millions of little steps. Please post your stories. If you want to be notified of changes in the blog or the Health Resume, let me know using the contact page.