tag:blogger.com,1999:blog-1556371561007953336.post484986854750584983..comments2024-03-16T16:44:18.220-07:00Comments on Bad Cripple: Rationing Health Care: A Policy Approachwilliam Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-1556371561007953336.post-28004363033024285142012-05-14T08:31:28.492-07:002012-05-14T08:31:28.492-07:00William,
In reference to Cathrine's comment, I...William,<br />In reference to Cathrine's comment, I would say that the reasons most PWD "cannot support themselves" are many and far reaching. <br />In addition, those of us who access SSI and Medicaid supports are at this time effectively cut off from the means to do much in the way of saving to pay for supports privately, due to Draconian restrictions placed upon how much we can legally save. <br />NessieNessie Silerhttps://www.blogger.com/profile/09490002851377536015noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-79168237619441786942012-04-08T08:50:38.349-07:002012-04-08T08:50:38.349-07:00Matthew, I would suggest any person with a disabil...Matthew, I would suggest any person with a disability is at risk when accessing health care. I know that is exactly how I feel. Many I know express serious reservations about hospitalization. All I know consider the health care system to be hostile to people with a disability. I do not know enough about the British or Canadian health car systems. Hence, I really appreciate your comments. I do know I admire the UK based disability rights movement. I think it is more active than US based groups. I may be wrong about this as this is a gut feeling. Wheelchairs are crazy expensive. A good manual wheelchair is about $5,000 and does not last long when used rigorously. The power wheelchair cost as much as a new car. Was very interested in your comment about seating. Seating clinics in the US have long waiting lists and insurance is loath to pay for anything beyond the most basic cushion. Frustrating in the extreme. I know of only one company that does high end customized seating in the USA. It is where the leading paraolympic athletes go.william Peacehttps://www.blogger.com/profile/00223601480542461802noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-82020324461802100102012-04-08T02:27:53.442-07:002012-04-08T02:27:53.442-07:00To be honest I don't know if discrimination ag...To be honest I don't know if discrimination against patients with SCI ever happens, but it's certainly not a matter of policy. Most of the disabled people I know have chronic illnesses such as ME and Ehlers-Danlos Syndrome, a connective-tissue disorder which affects people to varying degrees, sometimes being extremely painful and very disabling (requiring wheelchairs, ventilation and tube feeding). They report a lot of dismissive and abusive treatment and a struggle to get their condition accepted and appropriate treatment offered. Often their condition (particularly ME, and EDS pre-diagnosis) is dismissed as psychological. An articulate adult with SCI or something like muscular dystrophy - uncontroversial and easily testable physical disabilities - is at much less risk. It also depends on the attitudes of individual consultants and the culture in a particular hospital.<br /><br />As for what types of wheelchairs are provided, again, it depends on the person's disability and where they live. There is a voucher scheme in which the NHS will pay part of the cost if the disabled person wants to buy a more expensive wheelchair than the NHS can provide, but in that case, the owner is responsible for any maintenance. The NHS is unlikely to pay for a top-flight wheelchair, particularly a power-chair, but they will provide things like appropriate seating. Also, you have to be unable to walk, so if someone can just about walk but it will cause them extreme pain and fatigue (as with one lady I know with MS), they are on their own.Matthew Smithhttps://www.blogger.com/profile/16675719484819810707noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-49264831268997155372012-04-08T02:27:06.697-07:002012-04-08T02:27:06.697-07:00This comment has been removed by the author.Matthew Smithhttps://www.blogger.com/profile/16675719484819810707noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-8178611541421377232012-04-05T06:22:16.125-07:002012-04-05T06:22:16.125-07:00Catherine, I agree health care is already being ra...Catherine, I agree health care is already being rationed. In the USA this is left up to the individual. I have rationed my health care for a long time as do many others with and without a disability. As for your comments r.e. "subsidizing", I would remark most people do not care about families with a disabled member. Indeed, most people do not care about the lives of people with a disability. They are seen as costly burdens. I find it ironic that people will howl in protest if a parent is paid (subsidized) to care for their child. The alternative, paying a stranger of greatly varying quality, costs a small fortune. <br />Matthew, Always delighted when you comment on a UK based issue. A native viewpoint is greatly appreciated. I should know more about QALY. It is a polarizing issue in the Sates--think Palin's simplistic reference to death panels. I do not doubt your observations about QALY being related to expensive cancer treatments and such. However, I find it highly unlikely that a man or woman with a SCI is treated equally as a man or woman without such an injury. It does not happen in the USA nor in Britain. QALY filters into the culture of health care. As for wheelchairs, I have no doubt they are provided for people that need them. But what sort of quality are we talking about? I can buy a wheelchair for $200 or $35,000 for an motorized chair. The range and needs range wildly. I doubt most get the wheelchair that really suits their needs.william Peacehttps://www.blogger.com/profile/00223601480542461802noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-2041991131891931362012-04-05T01:41:57.334-07:002012-04-05T01:41:57.334-07:00In the UK, QALYs are used by NICE (the National In...In the UK, QALYs are used by NICE (the National Institute for Health and Clinical Excellence) to ration the use of expensive drugs according to what is most cost-effective in terms of prolonging life and the quality of life that will be afforded, not to discriminate against already physically disabled patients (this would cause outrage, particularly if it were policy - there is a risk of neglect for some disabled patients, but these are mainly those with intellectual disabilities, mental health problems or certain chronic diseases).<br /><br />Generally, drug rationing becomes controversial when they refuse to license a new and expensive cancer drug which is not a cure, but will prolong the life of a terminally ill patient by a few months, and this will use money which could be used to save lives, or improve them on a long-term basis (this was the source of the "NHS death panel" nonsense spouted by Sarah Palin a few years ago). The NHS actually provides wheelchairs and funding for patients to buy their own, something it might not be able to do if it did away with QALYS and bowed to media pressure to provide every cancer drug ever invented.Matthew Smithhttps://www.blogger.com/profile/16675719484819810707noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-34830877847405404062012-04-04T08:53:18.795-07:002012-04-04T08:53:18.795-07:00It comes right down to the fact that people do not...It comes right down to the fact that people do not like to subsidize other people in ways and to the extent they are not directly and currently being subsidized themselves. The problem with disability is not the disability itself but that too many of the disabled cannot support themselves. People do not want to support them. I run into this all of the time. If a loving family member want to pay and take the time to care for a disabled loved one, that's up to that member. Others do not want to pay or have part in it by being inconvenienced in the least. We are a very selfish species that way.<br /><br />Health care is already being rationed but not in a systematic way. It's a matter of how wise you are in terms of getting the most appropriate care and how connected you are to someone who is savvy in this that determines what you get. Those who are savvy do not want a level playing field because it would make it more difficult for them to get the care they are getting for self and loved ones. Those who are not, just don't want to pay for others. They feel they are "taxed" enough. That is really the way it works right now.Catherinehttps://www.blogger.com/profile/11149885637140617891noreply@blogger.com