There's health care - and then there's health care for people with disabilities. At Stavros Center for Independent Living, we have long been aware of poor access at hospitals and clinics. Most people can visit their doctor's office and just do what they are told to do -- 'hop up on the table,' 'just lie still,' or 'step over here' -- and are able to get a full exam or a check-up. But it's not that easy for some of us.
Individuals with disabilities often experience discrimination while attempting to take care of their health. For both outpatient and inpatient procedures, they are told that they need to bring a family member or an aide to help them communicate, dress and undress or transfer because the equipment is not accessible or 'we don't have anyone who can help you.'
Accessible medical equipment (download the powerpoint)-- exam tables, hospital beds, dentist chairs, mammography equipment, MRI machines, scales -- is readily available, but all too often, missing from local medical facilities. People who use wheelchairs often have no idea what they weigh (and neither do their doctors) because they cannot stand on a scale! Sometimes it's a matter of communication access; rarely is a sign language interpreter available. People who are Deaf can end up leaving an emergency room with little understanding of what happened to them, what was done at the ER, and what they need to do for aftercare.
As a result of access problems, individuals with disabilities frequently forgo needed medical tests and procedures. Imagine trying to get an x-ray, a dental exam, or a mammogram when you can't get yourself onto the exam table or chair. Even if a hospital staff member IS available to help you move, it's likely they are not properly trained, so the patient risks injury.
Once someone is in the hospital, things can be even worse. We've heard of patients who need help to get out of bed in order to use the bathroom being told to 'just go ahead and void in the bed' because there wasn't enough time or staff to assist. Another example: for most people with quadriplegia, daily bowel maintenance routines are essential, and their lack can be life threatening. Yet in November 2007, one Western Massachusetts hospital told a patient with quadriplegia that they have a policy against one part of his bowel regimen, as they felt it was 'too invasive.'
And now for some really good news: the Disability Law Center (DLC) has begun has begun a project to address systemic barriers for people with disabilities in Western Massachusetts hospitals. They are interested in hearing from people with all disabilities about their experiences. Any interviews would be done in strict confidence, and no information will be used without explicit permission from the individual interviewed. Our goal is to get local medical practitioners to take access seriously. If you have a story to tell, please call or email Stefanie Krantz and Nancy Svirida at their Northampton office: (413) 584-6337 (voice), (800) 222-5619, (413) 582-6919 TTY. How can we meet the access needs of people of all abilities, so we really can have 'health care for all' in Massachusetts?
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