{"id":26,"date":"2014-04-08T10:53:00","date_gmt":"2014-04-08T10:53:00","guid":{"rendered":""},"modified":"2016-04-20T22:58:04","modified_gmt":"2016-04-20T22:58:04","slug":"its-your-choice-or-is-it","status":"publish","type":"post","link":"https:\/\/dhr.tiltedchair.co\/?p=26","title":{"rendered":"It&#8217;s your choice!  (Or is it?)"},"content":{"rendered":"<p>&#8220;Hey, Buddy!&nbsp; I&#8217;ll take you to get some ice cream.&nbsp; We&#8217;ll go anywhere you want as long as it&#8217;s Baskin-Robbins, and you can have any kind of ice cream you want as long as it&#8217;s vanilla!<\/p>\n<p><em>&#8220;It&#8217;s<\/em> <em>absolutely <u>your<\/u> choice!&#8221;<\/em><br \/><em><\/em><br \/>This is the message of your federal government, as articulated by Mark Olson, head of LTO Ventures and the single father of an 18-year old daughter with severe autism.&nbsp; <\/p>\n<p>Some choice, no?&nbsp; <\/p>\n<p>I&#8217;m getting <em>deja vu <\/em>all over again.&nbsp; Here at the Ranch we&#8217;ve been through this before, you see.&nbsp; Here&#8217;s our story.<\/p>\n<p>In 2007 Down Home Ranch was up and running on a modest scale.&nbsp; We had three homes open at the Ranch, each with three residents apiece, all having decided after attending <em>Ranch Camp<\/em> that this is where they wanted to live.<\/p>\n<p>There we were, we band of brothers and sisters, we happy few.&nbsp; Then the apple appeared in Eden, and of it we did eat.<\/p>\n<p>It appeared in the form of what is known as an HCS waiver, funding &#8220;provided&#8221; by the federal government for &#8220;services&#8221; for &#8220;consumers&#8221; with what we now refer to as intellectual disabilities.&nbsp; A new resident had this funding, which the family had waited for for a decade or so, and they didn&#8217;t want to lose it.<\/p>\n<p>In order not to lose it, they had to use it.&nbsp; To figure out how to use it we convened a meeting of the young man&#8217;s case manager and program director, employees of the agency administering the waiver.<\/p>\n<p>In our two-hour conversation I half expected the March Hare to wander in at any moment.&nbsp; Following is my mental reconstruction, what today we call the &#8220;take-away.&#8221;<\/p>\n<p>Program Director:&nbsp;&nbsp;&nbsp; The HCS was designed to offer maximum choice to the consumer.&nbsp; that&#8217;s why families want it and it&#8217;s so valuable.<\/p>\n<p>Down Home Ranch:&nbsp;&nbsp; That&#8217;s fabulous.&nbsp; Choice over what?<\/p>\n<p>Program Director:&nbsp;&nbsp; Housing, jobs, friends&#8230;every aspect of life!<\/p>\n<p>Down Home Ranch:&nbsp;&nbsp; Great!&nbsp; So how does &#8220;Sam&#8221; use his HCS?<\/p>\n<p>Program Director:&nbsp; He will have a paid companion come and pick him up and take him on community outings.<\/p>\n<p>Sam:&nbsp;&nbsp; Can Adam [best friend and housemate] go with me?<\/p>\n<p>Program Director:&nbsp; No.<\/p>\n<p>DHR:&nbsp; Why not?<\/p>\n<p>PD:&nbsp;&nbsp; Only a non-disabled friend can accompany Sam on a community outing.&nbsp; You see, the whole point is to eliminate segregation of people with disabilities.<\/p>\n<p>DHR:&nbsp; But he wants his best friend to go.<\/p>\n<p>PD:&nbsp;&nbsp; I&#8217;m sorry.&nbsp; That&#8217;s not possible.<\/p>\n<p>Sam:&nbsp;&nbsp; I don&#8217;t want to go.<\/p>\n<p>But, Sam had to go anyway, in order not to&nbsp;lose his services, which he didn&#8217;t want to use.&nbsp; (Perhaps they went to Baskin-Robbins&#8230;)<\/p>\n<p>If the tale had ended there, it might have been better for all concerned.&nbsp; But, it didn&#8217;t.&nbsp; We&nbsp;tasted of&nbsp;the Kool-Aid and it was sweet.&nbsp; We became more involved with HCS for a very important reason.<\/p>\n<p>Back up time.&nbsp; We&#8217;d always envisioned the Ranch as a place for those who wanted to live there, regardless of ability to pay.&nbsp; That lasted about six months into the residential program when we realized just how expensive direct care is.&nbsp; The Board imposed a fee to parents on a sliding scale.&nbsp; It helped.&nbsp; <\/p>\n<p>We were aware, however, of the financial strain it imposed on our families, as moms who had been retired for several years elected to return to employment.&nbsp; The long-term picture looked a little wobbly, financially speaking.<\/p>\n<p>Other Ranchers&#8217; names began to come up on the HCS waiting list.&nbsp; It was determined that if we became official providers they could receive funds for supervised living and other services, so Jerry and I attended meetings offered by the Department of Aging and Disability Services (affectionately, or not, known as &#8220;DADS&#8221;).&nbsp; <\/p>\n<p>The day Katrina hit New Orleans Jerry and I went for the final sign-up and exam, administered to make sure we knew what we were doing.&nbsp; He had decided that since I would administer the program I should take the exam.&nbsp; Somehow I managed to pass it and we were in business.<\/p>\n<p>One after another of our Ranchers got their waivers and soon over half were supported by the program.&nbsp; All seemed well for two years.&nbsp; <\/p>\n<p>Then one day during a routine inspection by DADS of our houses and programs, I escorted one of the surveyors through our new, spotless Barnabas House, where each Rancher had his own large private bedroom.&nbsp; The surveyor had been there for two days, and as we exited the house turned to me and said, &#8220;You know, I&#8217;ve heard about this place and I was very dubious about it, but now I get what you&#8217;re doing.&nbsp; I really get it, and it&#8217;s beautiful.&#8221;<\/p>\n<p>Later that evening, after finalizing the exit interview with our case manager, the surveyor stopped by and said: &#8220;Mrs. Horton, I just wanted to let you know about three rules about to be implemented that might affect your ability to offer HCS services here at the Ranch.&#8221;<\/p>\n<p>And so began an adventure.<\/p>\n<p>(To be continued)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>&#8220;Hey, Buddy!&nbsp; I&#8217;ll take you to get some ice cream.&nbsp; We&#8217;ll go anywhere you want as long as it&#8217;s Baskin-Robbins, and you can have any kind of ice cream you want as long as it&#8217;s vanilla! &#8220;It&#8217;s absolutely your choice!&#8221;This is the message of your federal government, as articulated by Mark Olson, head of LTO&hellip;<\/p>\n","protected":false},"author":7,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2,5,13,8,23],"tags":[],"class_list":["post-26","post","type-post","status-publish","format-standard","hentry","category-autism","category-coalition-for-community-choice","category-down-home-ranch","category-down-syndrome","category-housing-for-people-with-intellectual-disabilities"],"_links":{"self":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/26","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=26"}],"version-history":[{"count":0,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/26\/revisions"}],"wp:attachment":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}