tag:blogger.com,1999:blog-3881579789503566925.post43785803910124587..comments2023-10-09T05:51:49.873-04:00Comments on Forced to Sit Still and Shut Up -- A Journey Through ALS, Disability and Mindful Living: New Medicine -- Better for Edema?Fern Ellen Cohenhttp://www.blogger.com/profile/15615775005603320729noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-3881579789503566925.post-27110105228972823122010-02-01T10:52:04.362-05:002010-02-01T10:52:04.362-05:00I am already in the Concepts program, but I didn&#...I am already in the Concepts program, but I didn't know about this new Nurse Practice Act. This is a good thing, because I understand that trache care is not as difficult as it sounds and I know a lot of patients on trache/vent who have taught their young kids how to do trache care and suctioning and they are able to live at home without expensive nursing care. Thank you for this information. I plan to read more about it and even do a blog post about it.Fern Ellen Cohenhttps://www.blogger.com/profile/15615775005603320729noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-51864183552236972362010-02-01T00:36:24.191-05:002010-02-01T00:36:24.191-05:00You should check out a consumer-directed personal ...You should check out a consumer-directed personal assistant program like Concepts of Independence in New York City; the city modified the Nurse Practice Act to allow higher level skilled care (that would normally have to be done by a nurse) to be provided by home health aides working for that program as long as it was at your discretion & you take the responsibility. Lots of New Yorkers have avoided a nursing home that way; it can be a hassle, but it's worth it to live free.Disabled NYChttp://www.disablednyc.com/noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-16321722490434964922010-01-24T00:06:14.596-05:002010-01-24T00:06:14.596-05:00Non-invasive ventilation is probably best but not ...Non-invasive ventilation is probably best but not everyone can use it. Go with what your body needs and you can still get home care; yes, it will likely mean you'll have to fight for it, but what else is new? One way it can be done with a consumer-directed personal attendant program like Concepts of Independence. Let me know if you'd like more information.Disabled NYChttp://www.disablednyc.com/noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-39603627287666157012010-01-23T23:21:07.606-05:002010-01-23T23:21:07.606-05:00I get that fiure from a couple of members of my su...I get that fiure from a couple of members of my support group, one of whom says it costs her $140,000 because she has to pay for nursing care and home health care on her own and figure 24/7 for 365 days a year...my aides get $12 an hour thru the agency, and privately, I would have to pay them more. Most of us don't have families to take care of us and in NY State, medicaid does not pay nursing care to come home on a trache....most patients in this state have to live in nursing homes on traches......why? do you spend less? do share with us, but please include 24/7 care paid out-of-pocket, because that is what most of us are facing.Fern Ellen Cohenhttps://www.blogger.com/profile/15615775005603320729noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-45383664482373594892010-01-23T20:29:46.294-05:002010-01-23T20:29:46.294-05:00Fern I am not sure where you get the $100,000 amou...Fern I am not sure where you get the $100,000 amount but it is just not accurate. <br /><br />JeffRagingbearhttps://www.blogger.com/profile/06958227538484439840noreply@blogger.com