New Enthusiasm for All Things Accessible

It has been some time since I have been blogging. There are some events that remind me that there are very important issues and I hope to share information in this blog and elsewhere. The current issues occupying time, energy, thoughts involve accessible equipment and reasonable accommodations. In particular, issues surrounding hearing impairments and chronic spinal cord injury are at the top of the list. At the moment, we have been attending to issues surrounding healthcare for people with chronic spinal cord injury. I have been surprised to discover that ADA is not as effective in inspiring accessible equipment and reasonable accommodation. In particular, healthcare continues to pose a confusing network of disjointed issues and ineffectual solutions that fail to form a gestalt or appropriate situation for many with chronic spinal cord injury. I don't believe individual patients are being singled out. I consider the likelihood that if one person has an experience involving no accessible equipment on multiple occasions at the same provider, that it is the policy of that provider not to accommodate. I also believe there are some people who can be educated to accommodate but that it should not be the person with the disabling condition who should be required to beg the healthcare provider to comply. To me that is not justice. My dear cousin Jerry Smith has been experiencing an unbelievable sequence of healthcare encounters since suffering a T-6 complete spinal cord injury. My eyes have been opened. I never would have imagined such things could take place in 21st Century, let alone in the United States. During a recent intense encounter at a hospital, Jerry was denied a wheelchair, an accessible bathroom, a bedside commode, vomit receptacle, and was threatened to be carried out of the hospital instead of being provided with care. It's so difficult to imagine. I personally spoke with the Case Manager at the hospital who insisted they knew Jerry very well and knew his needs and they would be provided for. I exhaled. I believed the Case Manager. Now when I realize what happened and when I review the medical records from that 28 day encounter in the hospital, I am shocked that I did not realize -- that I did not rescue my dear cousin from that situation. I believed the Case Manager. What was I thinking? Jerry and I had attempted to communicate with the Case Manager, Nurses, Physicians, managers, and even the Chief Experience Officer at that hospital. Yet still, even the basic care was denied. We spoke with management about other health related care, because I thought the Case Manager was taking care of all Jerry's needs for accessibility. Who would ever imagine a Hospital in the United States that knows the patient for 6 years of frequent encounters, knows him to be paraplegic wheelchair bound and requiring accessible toilet and who was resident in the Hospital for 28 days -- yet they never provided a wheelchair -- not even his own wheelchair -- nor a toilet or bedside commode for that entire time. And to make matters worse, when the Case Manager who knows Jerry very well, planned his transfer to another facility and specifically checked the box indicating he did not need the accessible toilet for his bowel program. I was embarrassed to talk with people about this issue that is so essential to people with disabling spinal cord injury. I thought I had covered this issue with the Case Manager and that was all there was to it. I am remorseful more than I can say. I hope people out in blog land will hear me when I say that there may be many more people out there who have needs that are not being heard. And that there are many needs that are embarrassing to speak or write about. In addition to not planning for Jerry's bowel program, the referral form filled out by the Case Manager declared that Jerry did not have C Diff. I didn't know what the implications were when I first read the form. I will be writing and posting a lot about this. It is an epidemic in the healthcare setting. We must pay attention to this issue for everyone who uses healthcare services. Also, the Case Manager failed to indicate Jerry was using a wheelchair -- she neither checked the box indicating he needed a wheelchair, nor checked the box that his wheelchair was being sent to the new facility. Now that I have seen these records, many more issues Jerry has suffered from many other healthcare encounters make much more sense. The Hospital in question refuses to provide records, test reports, etc. until 30 days following discharge. By then, the records are of no practical use in provision of healthcare or intervention when issues come up. Who would imagine I would see the Case Manager did not express Jerry's needs on her documents. I'm not accustomed to grilling people about how they do their job. But now I realize that is exactly what must be done to protect persons who are living with disabling conditions such as paraplegia. The consequences of poor care are too great. I will be writing about this and filing complaints for as long as it takes. I will be asking for everyone and anyone's help. I will make it a habit when I see something that has gone wrong -- of telling people who are not doing right by persons with disabling conditions -- that they should avail themselves of a different job, because it appears they have no particular skill at doing the one they are currently in. I will no longer believe people when they say they 'know' something without fact checking and double checking and checking again. I will do my best not to do be shy about speaking about the needs of people with disabling conditions. So be prepared.