{"id":410,"date":"2004-03-15T19:38:55","date_gmt":"2004-03-15T19:38:55","guid":{"rendered":"http:\/\/the19thfloor.net\/?p=410"},"modified":"2004-03-15T19:38:55","modified_gmt":"2004-03-15T19:38:55","slug":"worlds_apart","status":"publish","type":"post","link":"https:\/\/the19thfloor.net\/?p=410","title":{"rendered":"Worlds Apart"},"content":{"rendered":"

I think I’ve written before about Nick Dupree<\/a> and his efforts to change Alabama’s Medicaid home care regulations, which, until very recently, denied home care services to anyone over age 21. This message from Nick was sitting in my inbox when I got to work this morning:
\nAnother tragedy has struck in Mobile due to Alabama Medicaid’s 21 cut-off policy. And it’s pretty close to home.
\nMy family has known Chris Wiggins since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne’s Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group. Around 1999 I think, Chris turned 21, and of course lost his care. Alabama provides nursing care through EPSDT, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new, inappropriate, insanely over-medicalized AT waiver, or people with MR allowed on the MR\/DD waiver.) Chris’ parents were trying to do his care 24\/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. As you know I’ve been warning about the dangers of providing no support to people after age 21 for years.
\nMarch 4, Chris’ ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. Tuesday night, March 9, Chris died.
\nHe was 26.<\/strong>
\nThere’s not much I can add to this. I’ve always joked with my nurses that I’d die a “stupid” death. Something like my ventilator getting accidentally turned off and no one noticing. It’s hard to joke about that now. This was a stupid death in every sense of the word. It’s a stupid, meaningless, preventable death where nobody and everybody is to blame.
\nWhen it comes to issues like home care and community integration, Minnesota and Alabama aren’t just on separate planets. They’re fucking galaxies apart.<\/p>\n","protected":false},"excerpt":{"rendered":"

I think I’ve written before about Nick Dupree and his efforts to change Alabama’s Medicaid home care regulations, which, until very recently, denied home care services to anyone over age 21. This message from Nick was sitting in my inbox when I got to work this morning: Another tragedy has struck in Mobile due to […]<\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"sfsi_plus_gutenberg_text_before_share":"","sfsi_plus_gutenberg_show_text_before_share":"","sfsi_plus_gutenberg_icon_type":"","sfsi_plus_gutenberg_icon_alignemt":"","sfsi_plus_gutenburg_max_per_row":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-410","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-1-id","post-seq-1","post-parity-odd","meta-position-corners","fix"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p9Iwau-6C","jetpack_sharing_enabled":true,"jetpack_likes_enabled":true,"_links":{"self":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts\/410","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=410"}],"version-history":[{"count":0,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts\/410\/revisions"}],"wp:attachment":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=410"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=410"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=410"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}