Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Senator Frist is certainly one person who needs to know our issues, directly and publicly but he isn't the only one. When I saw how much of Elie's capped waiver money went to administration instead of to his services, I was furious. Even sitting on the county committee that arranged the fiscal intermediary, I was unable to do much. My argument is that families should be able to pick the third party who pays the bills, using consumer sensibilities:IE: I wanted to hire a CPA to handle the funding since I was not allowed to pay bills directly - I might steal the money after all or misuse it. But the fiscal intermediary whose sole job for my son was to write approx. 2 checks a month, pay taxes and ss on our employees, workman's comp, etc. charged us $175/month for this service. This is when 3 CP'a that I talked to would handle the amount of money and the payroll with all it entailed, for half or less. In addition, a CPA working for me would be sending me itemized accounting each month. The fiscal intermediary never sent out itemized accounts - only a total of what was spent each month. I do belay this issue . Oregon has nothing. PA does have something but it is still bogged down in creating layers between the money and the person. I continue to argue that if the needs are identified, the money needs to follow the person wherever they are with the least amount of financial skullduggery possible. Sara - Choose to make lemonade, not complain about the lemons. > >Reply-To: >To: < > >Subject: Re: Medicaid Waiver editorial >Date: Sat, 12 Aug 2006 11:24:02 -0700 > > > > >HI Joan, > >I do not know, specifically, what criteria will be adopted as eligibility >standards in the (unlikely) event that the Center for Medicaid Services >accepts the waiver. > >As you know, I was on the Board of Directors of Providence Child Center for >many years. In spite of that I actually don't know precisely what criteria >are applied to get the child into the center. I do know that one trait is >lack of mobility ... everyone there is in a chair and has very involved >medical issues ... as opposed to behavior or life skill issues. > >The only interest group served by providing services in Emergency Rooms and >Nursing " Homes " >are the owners and employees of the institutions. Everyone is in agreement >that children belong at home with their families. Much of the research that >has gone into MiCASSA shows that in home support is actually less costly >than the current method. Additionally, research from AARP and others shows >that virtually everyone prefers home care to institutions. Why then don't >we have it, everywhere? > >At the risk of exposing myself, again, as a radical I return to my thesis, >which I have propounded for years to the scorn and ridicule of the >institutional community, that our children are, primarily, simply the raw >material to fuel the disability business. Our wishes are nearly always >suborned to those of management and administration. > >Your comment about Oregon is surely true. Recently a friend lost her radio >program on family issues because she has no respite care for her 17 year >old son. I visited with her recently and she produced notes from a respite >care meeting she and I did 14 years ago which dealt with precisely the same >issue that caused her to lose her job. There has been not an iota of >progress made during those years in spite of the state's assurance that >they are trying to get a waiver, dozens of respite care conferences and a >storm of advocacy. > >Of course, the fact that the Majority Leader of the US Senate got his >family fortune from private ownership of hospitals and nursing homes, is >not helpful. > >My personal view is that even if the waiver is allowed the rules will be so >restrictive and internally inconsistent that those of us who actually need >services will be the last to get them. Meanwhile, look for a vast array of >new administrators, consultatants and functionaries to be hired to >interpret the rules in a way that is the most restrictive. > >Eleanor now is in adult " services " and has a comically named " personal >agent " to help her develop and implement a plan. Hours have been spent on >this and whatever the request she makes the answer is always " no. " We have >reverted to " Brokerage Jeopardy. " When an issue comes up we send them the >answer, always NO, and ask them to supply the question. That at least >eliminates the feeling of being duped. > >MTB > >From: Joan Medlen >To: >Sent: Saturday, August 12, 2006 10:12 AM >Subject: Re: Medicaid Waiver editorial > > >HI , > >It has been interesting to watch these articles. It >brings back memories of Andy's birth, when we could >barely make ends meet, he needed some tests...I had >$800 for maternity leave, $800 of extra medical bills >we didn't expect, and $800 in taxes to pay. And I had >only saved $800 total. There was no help to be found >anywhere - our bank woudln't even loan us money. > >And then the issue of the impact of having a " severely >challenged " child at home on one's work. There's no >way I can be traditionally employed - I'd be fired for >absenteeism or getting too many phone calls. > >My question after reading the recent editorials is >whether or not Andy would be considered in this group? >Would he be considered " disabled enough " to qualitfy? >Certainly there are those who would want to put him in >some sort of care to pay for his behavioral >needs...but they are not direct nursing/medical needs. > >What have you heard? > >For those of you who live in states wtih medicaid >waivers that do not consider parental income - count >your lucky stars. There is little here in Oregon to >help families along financially. I " m convinced many >are in foster care or child group homes or nursing >homes because parents couldn't hire in the help they >need to take care of their chilcren. > >Take care, >Joan > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 During Eleanor's 18 years of " targeted case management " the county DD Program Office collected slightly over $80,000 from Medicaid and state general fund dollars. For that we had a consultant attend one IFSP. That was it. If the $80,000 had been sent to us over those 18 years it would not have changed the world. But it would have bought a lot of lessons, adapted equipment, etc. As it is the money simply went to pay the salary and administrative costs of the " service office. " In other words, a total waste. What Sara says is true. Politicians believe that all of these appropriated dollars actually go to assist people with disabilities. More often that not they simply go to support vast layers of administration and bureaucracy. If any trickles down to individuals, so be it. But it is not the priority. MTB Re: Medicaid Waiver editorial > > >HI , > >It has been interesting to watch these articles. It >brings back memories of Andy's birth, when we could >barely make ends meet, he needed some tests...I had >$800 for maternity leave, $800 of extra medical bills >we didn't expect, and $800 in taxes to pay. And I had >only saved $800 total. There was no help to be found >anywhere - our bank woudln't even loan us money. > >And then the issue of the impact of having a " severely >challenged " child at home on one's work. There's no >way I can be traditionally employed - I'd be fired for >absenteeism or getting too many phone calls. > >My question after reading the recent editorials is >whether or not Andy would be considered in this group? >Would he be considered " disabled enough " to qualitfy? >Certainly there are those who would want to put him in >some sort of care to pay for his behavioral >needs...but they are not direct nursing/medical needs. > >What have you heard? > >For those of you who live in states wtih medicaid >waivers that do not consider parental income - count >your lucky stars. There is little here in Oregon to >help families along financially. I " m convinced many >are in foster care or child group homes or nursing >homes because parents couldn't hire in the help they >need to take care of their chilcren. > >Take care, >Joan > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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