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.

Southcoast Hospitals Physicians Believe, 'Autonomic Dysreflexia Does Not Exist -- and if it does, then it is only experienced by persons with Acute spinal cord injury...' They might want to do some fact checking.

Autonomic Dysreflexia in Spinal Cord Injury Author: Ryan O Stephenson, DO; Chief Editor: Robert H Meier, III, MD more... Updated: Jun 25, 2015 Overview Pathophysiology Causes of Autonomic Dysreflexia Prognosis Patient education Consultations Prevention Epidemiology History and Physical Examination Physical Therapy Occupational Therapy Recreational and Speech Therapies Treatment of Autonomic Dysreflexia Prevention of Autonomic Dysreflexia Show All Multimedia Library References Overview Autonomic dysreflexia is a potentially dangerous clinical syndrome that develops in individuals with spinal cord injury, resulting in acute, uncontrolled hypertension. All caregivers, practitioners, and therapists who interact with individuals with spinal cord injuries must be aware of this syndrome, recognize the symptoms, and understand the causes and treatment algorithm.[1] Briefly, autonomic dysreflexia develops in individuals with a neurologic level of spinal cord injury at or above the sixth thoracic vertebral level (T6). Autonomic dysreflexia causes an imbalanced reflex sympathetic discharge, leading to potentially life-threatening hypertension. It is considered a medical emergency and must be recognized immediately. If left untreated, autonomic dysreflexia can cause seizures, retinal hemorrhage, pulmonary edema, renal insufficiency, myocardial infarction, cerebral hemorrhage, and death. Complications associated with autonomic dysreflexia result directly from sustained, severe peripheral hypertension. (See the image below.) (A) A strong sensory input (not necessarily noxiou (A) A strong sensory input (not necessarily noxious) is carried into the spinal cord via intact peripheral nerves. The most common origins are bladder and bowel. (B) This strong sensory input travels up the spinal cord and evokes a massive reflex sympathetic surge from the thoracolumbar sympathetic nerves, causing widespread vasoconstriction, most significantly in the subdiaphragmatic (or splanchnic) vasculature. Thus, peripheral arterial hypertension occurs. (C) The brain detects this hypertensive crisis through intact baroreceptors in the neck delivered to the brain through cranial nerves IX and X. (D) The brain attempts two maneuvers to halt the progression of this hypertensive crisis. First, the brain attempts to shut down the sympathetic surge by sending descending inhibitory impulses. These impulses are unable to travel to most sympathetic outflow levels because of the spinal cord injury at T6 or above. Inhibitory impulses are blocked in the injured spinal cord. In the second maneuver, the brain attempts to bring down peripheral blood pressure by slowing the heart rate through an intact vagus (parasympathetic) nerve; however, this compensatory bradycardia is inadequate and hypertension continues. In summary, the sympathetics prevail below the level of neurologic injury, and the parasympathetic nerves prevail above the level of injury. Once the inciting stimulus is removed, reflex hypertension resolves.

Appropriate Specialized Healthcare Improves Quality of Life in Chronic Spinal Cord Injury

Mortality and Longevity after a Spinal Cord Injury: Systematic Review and Meta-Analysis Jonviea D. Chamberlain a, b Sonja Meier a Luzius Mader a, b Per M. von Groote a, b Martin W.G. Brinkhof a, b a Swiss Paraplegic Research, Nottwil , and b Department of Health Sciences and Health Policy, University of Lucerne, Lucerne , Switzerland Mortality and Longevity after a Spinal Cord Injury: Systematic Review and Meta-Analysis Jonviea D. Chamberlain a, b Sonja Meier a Luzius Mader a, b Per M. von Groote a, b Martin W.G. Brinkhof a, b a Swiss Paraplegic Research, Nottwil , and b Department of Health Sciences and Health Policy, University of Lucerne, Lucerne , Switzerland Abstract Background/Aims: Mortality and longevity studies of spinal cord injury (SCI) are essential for informing healthcare systems and policies. This review evaluates the current evidence among people with SCIs worldwide in relation to the WHO region and country income level; demographic and lesion characteristics; and in comparison with the general population. Methods: A systematic review of relevant databases for original studies. Pooled estimates were derived using random effects meta-analysis, restricted to traumatic SCI. Results: Seventy-four studies were included. In-hospital mortality varied, with pooled estimates of 24.1% (95% confidence interval (CI) 14.1-38.0), 7.6% (95% CI 6.3-9.0), 7.0% (95% CI 1.5-27.4), and 2.1% (95% CI 0.9-5.0) in the WHO regions of Africa, the Americas, Europe and Western Pacific. The combined estimate for low- and middle-income countries was nearly three times higher than for high-income countries. Pooled estimates of first-year survival were 86.5% (95% CI 75.3-93.1), 95.6% (95% CI 81.0-99.1), and 94.0% (95% CI 93.3-94.6) in the Americas, Europe and Western Pacific. Pooled estimates of standardized mortality ratios in tetraplegics were 2.53 (2.00-3.21) and 2.07 (1.47-2.92) in paraplegics. Conclusion: This study found substantial variation in mortality and longevity within the SCI population, compared to the general population, and between WHO regions and country income level. Improved standardization and quality of reporting is needed to improve inferences regarding the extent to which mortality outcomes following an SCI are related to healthcare systems, services and policies. © 2015 S. Karger AG, Basel

Study about Morbidity and Mortality in Chronic Spinal Cord Injury

Mortality in patients with traumatic spinal cord injury: Descriptive analysis of 62 deceased subjects Roland Thietje 1 , M.H. Pouw 3 , A.P. Schulz 2 , B. Kienast 1 , Sven Hirschfeld 1 1 Centre for Spinal Injuries, BG Trauma Hospital Hamburg, Germany, 2 Dept. of Biomechanics and Orthopaedic Research, University Hospital Lübeck, Germany, 3 Spine Unit, Department of Orthopedic Surgery, Radboud University Nijmegen Medical Centre, NL Study design: Retrospective study. Objective: To investigate the causes of death in patients who were ≤ 50 years at the time of traumatic spinal cord injury (tSCI). Setting: Convenience sample of a tertiary rehabilitation center. Methods: All deceased patients with tSCI who survived a minimum of 10 years post-injury, were included. In addition, causes of death were compared between subjects surviving < 10 years and ≥ 10 years. Neurological assessments were performed according to the American Spinal Injury Association scale. Data on causes of death were analyzed using the ICD-10 classifications. Differences were calculated using the Mann – Whitney and chi-square tests. Results: A total of 100 patients, with 38 and 62 surviving < 10 and ≥ 10 years, respectively, were included. No significant differences in causes of death were identified between these two groups. In patients surviving ≥ 10 years, paraplegia was associated with a higher life expectancy compared with tetraplegia, 34 and 25 years ( p = 0.008), respectively, and the leading causes of death were septicemia ( n = 14), ischemic heart disease ( n = 10), neoplasms ( n = 9), cerebrovascular diseases ( n = 5), and other forms of heart diseases ( n = 5). Septicemia, influenza / pneumonia, and suicide were the leading causes of death in tetraplegics, whereas ischemic heart disease, neoplasms, and septicemia were the leading causes of death in paraplegia. Conclusion: Our monocentric study showed that in 62 deceased patients with SCI, the leading causes of death were septicemia, cardiovascular diseases, neoplasms, and cerebrovascular diseases. In addition, no significant differences were identified between causes of death among patients surviving < 10 years and ≥ 10 years post-injury. Keywords: Spinal cord injuries

24 Hour Hotline Disabled Persons Protection Commission to Report Abuse or Neglect

I guess they don't mean 24 Hours In A Row! Because you can't reach them by telephone. Seriously. I'm quite discouraged by the experiences and interactions with the Commonwealth of Massachusetts. It's disappointing. I contacted a Foundation that provides assistance to people with disabling conditions and asked about resources to help my cousin with issues. The Foundation Resource Representative explained to me that what I was describing was that my cousin was 'severely mistreated' and I should call and report it. I searched on the words, 'severely mistreated' and 'disabled' and 'Massachusetts' and found the Disabled Persons Protection Commission DPPC with a 24 Hour Hotline to Report Abuse or Neglect. There are descriptions of abuse and neglect, how to recognize, abuse and neglect, who is mandated to report, etc. After reading a lot of stuff on the web site, I tried to contact the 24 Hour Hotline to Report Abuse or Neglect. Nobody answered. Seriously. I called back. Again, nobody answered. There's no option on the web site to report online. No online chat. The regular office number suggests calling 911 in an emergency. You have to wonder about all the calls people get at 911 if everybody refers people to call 911 because they just don't answer the phone in some other office that's supposed to be doing something that appears to be important. At least it appears to be important to the people who are disabled and who are being abused or neglected.

Who Would Ever Believe a Skilled Nursing Facility Would Bill the Patient Co-Pay for Days He Was In Another Hospital and Rehab?

Oddly, we can see here an Invoice from Golden Living Oak Hill including dates when the patient was actually in Beth Israel Deaconess Jordan Hospital beginning 6 July 2015, then Reliant (Spaulding Rehabilitation) beginning 15 July 2015. I actually spoke with the billing people on the phone and they insist there's nothing wrong with the bill. They said the patient had used up all his days for the benefit period and he has to pay. Really? For days when he was elsewhere? How does that work?

Settlement Agreement between the United States of America and the Beth Israel Deaconess Medical Center

Settlement Agreement between the United States of America and the Beth Israel Deaconess Medical Center