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We've tried applying for a number of long term care insurance plans and each one informed us at the start -- If you have Parkinson's -- don't bother to apply. I think Medicaid regulations vary from state to state right now, with some federal guidelines. Long term care should be included as a part of any health care reform programs that are being considered. Does anyone know if this has been a part of the debate? What a tragedy that Joyce and Chuck were forced to divorce in order for Joyce to get the care that she needs. Only in America? How is long term care provided in other countries? linda ---------- Original Message ---------- From: Kathleen Cochran <[log in to unmask]> To: [log in to unmask] Subject: Re: for those old timers that remember Date: Sat, 6 Jun 2009 08:55:36 -0400 Thank you so much, Chuck, for this detailed, personal account of what you and Joyce went through. i admire your resolution, toughness, and persistence, Planning for a future of increasing disability is one of the most daunting aspects of PD. I wonder if anyone has found good resources on this topic. Kathleen 2009/6/6 <[log in to unmask]> > > This is Chuck using Joyce's membership to sign on. > > > > After nearly 28 years with PD, Joyce is still with us in (almost) fine > condition. > > > After personally funding her live-in companion(s) since 1996 it was > impossible to continue > and I had to seek alternative ideas. > > Some of you might remember my sadness to have to make the decision to > divorce Joyce in order to make > a Medicaid application for assistance. Finally I had no choice and we > were divorced in 2007. > > What followed was the most difficult financial audit in my lifetime. > having a private business I was subjected to state and federal > examinations > including state sales tax audits. I passed all without exemption!!! > > Nothing can compare to a medicaid audit. I hired the top medicaid lawyer > in South Carolina, called many times to testify in front of state > appellate and federal level counts including the US Supreme court for > medicaid > cases. She knows her stuff. > > The current look back is five years but she found a provision to narrow it > to three....big deal...!! > > Folks, if anyone is considering applying to Medicaid be ready to provide > in duplicate and triplicate every single transaction from whatever source > which can be shown which could be thought of as a way to reduce the > beneficiaries assets. For me it was a five month process and a dossier > of nearly > 4 inches of papers. EVERYTHING financial over $1000 was requested in more > than one direction. What made it soooo difficult was that the three years > prior included years that we were married and co mingled investment and > bank accounts. Ouch. > > Items such as helping our son's wedding, our other son's car down payment > and many more normal family actions that were NOT accepted because in > effect it was considered a gift. believe me this sucked. > > If any lives in South Carolina there is another program under which the > patient can apply and which is for the most part not publicly advertised. > I > will supply the info if you ask me. The criteria is similar but has some > leeway that straight medicaid does not have. > > After 4 months she was accepted for 1/2 of the benefits...medical and > medicine...leaving the actual living expenses in a nursing home (assisted > living > is not covered) up in the air. The bills kept coming but since we > didn't know if we were accepted how far back they would cover. so i > never > paid anything except her personal care items. > > I contacted the state ombudslady who after hearing and reading my letter > asking for her support agreed to act on my behalf...the lawyer was against > a > brick wall... > > It worked and with a lot of tears from the lawyer, ambudslady and ME last > week I received notice that she qualified for the missing link and I was > totally free of ALL expenses. > > Joyce is now living in a nursing home in Columbia, South Carolina, using a > power wheelchair to get around and which opened a new world for her. Her > PD symptoms continue as was for years and years...no use of her legs > complicated by the loss of the use of her right hand due to an car > accident. > She is the life of the party, knows everyone, just received an honor for > redesigning and reorganizing the library, credited with starting a maj > jong > game club..and known as somebody who will always bring a smile to anyone > near. > > Nobody every accepts PD or a nursing home but she has made peace with > herself...i think... > > We remain closest friends and I am thankful to my current wife who totally > supports my efforts and actions for Joyce. Although they havent met, > Joyce continually sends her thanks to us both. > > If anyone is interested in writing to her, and although she cant write > back, she will dictate to me and Ill answer all mail. I will give her > address to anyone interested who requests it to Joyce's private email > at [log in to unmask] (mailto:[log in to unmask]) > > > I had to share this experience for those who find themselves facing > financial disaster due to the care giving expenses which will keep > mounting. > The thought of divorce was the hardest but something that MUST be done, > > good luck to all.. > > Chuck CG Joyce first dx 1981 now 65 years old. > > > > > > > **************Stay connected and tighten your budget with a great mobile > device for under $50. Take a Peek! > ( > http://pr.atwola.com/promoclk/100122638x1221845911x1201401556/aol?redir=http://www.getpeek.com/aol > ) > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn