Healthcare services for adults with autism are few and far between. As a professional in the field of adult autism services and parent/guardian of a young adult with autism, my son Michael, I have known and experienced full well the inadequacies of this article from OHSU listed below. In the past year, Michael has been hospitalized twice (two weeks each time), first for a bleeding ulcer and a perforated ulcer six weeks later. Both hospitalizations were precipitated by a GI doctor appointment that resulted in “strong advocacy” on my part; knowledge of my son’s health history, knowing that many individuals with autism experience GI issues and taking my role as his guardian very seriously.
During Michael’s last post-op appointment, I asked the GI doctor what was the cause and what could we do to prevent this from happening again since H-Pylori was ruled out and the use of NSAIDs. The doctor (albeit a pleasant man), looked at me with empathy and said, “sometimes bad things happen to good people!” After a long, awkward pause, I said, “that’s not an answer!”
Fast-forward a couple of weeks; I called Michael’s GI Clinic for a referral to OHSU Digestive Health Clinic in Portland, OR. My conversation started at 9:00 a.m. with the scheduler who insisted on speaking to Michael. I indicated to the scheduler that Michael was functionally non-verbal and that I was his guardian. I also indicated to her that with each phone call to this clinic, I have had to fax the Court Guardianship documentation to their office with the assurance that this document and information would become part of his clinic profile….it still hasn’t happened. After a repeat fax to the clinic, I was referred to the nurse at Michael’s PCP office. I explained the need for the referral and was then asked by the nurse to speak with Michael. (Self-talk……take a deep breath….), Michael is functionally non-verbal and I am his legal guardian. The nurse then said, “I will need verification.” The second fax was sent!
Thinking, “whew, let’s get down to business” the PCP nurse thought it would be a better idea to get the referral from Michael’s GI Specialist……you guest it, a third fax! The nurse indicated that the referral might take a week to 10 days to finalize because of their internal process. In the meantime the office would be happy to see Michael…with every essence of my being, I declined the offer…5:15 p.m.
How can we make access to services less complicated…let’s start with the patient’s profile. Many scheduling software has an area for comments, please find a way to make that accessible to your “frontend-staff” by coding, color-coding, whatever would satisfy HIPPA standards.
Secondly, review the clinic’s mission statement, Michael’s clinic states,
“We will respond to the health needs of our patients in a caring and timely manner. Through education we will help them share responsibility for their own wellness. We will respect patient confidentiality in all matters.”
I certainly appreciate the clinic’s confidentiality statement, but am perplexed by the rest of the statement that says,
“As members of the community we are committed to public service and to sharing our medical expertise. We will maintain a prominent role working with community leaders to provide care for individuals with financial and other special needs.”
Stay tuned; I will keep you updated with the next steps and barriers that we encounter in hopes to address our community’s understanding of what “other special needs” are to access healthcare. We haven’t even broached the subject of medical provider competency of Autism and GI issues!!