Just read the info on homecare costs, so I will really try to keep this in perspective and keep from a full rant. We have been lucky enough for medicaid to pay for inhome care while I work. Many of you may remember that I had my DH in assisted living this summer for a few months, but brought him home. Not due to lack of care, really, but realizing that he does not need "assisted" living, he needs full guidance living.
so...I just learned today that on his annual renewal of homecare services, his hours will be cut in half. The state will not pay for what they deem as babysitting. His "babysitting" is ensuring he does not choke to death, get lost and stuck in a futon in our small 1500SQ house, burn the house down, remember to eat, open the door or leave in the nude, you know the drill. Not just dementia, but other health issues as well. Unable to get up from a fall, from the futon, etc. I have Dr's notice that he needs 24 hour supervision.
Again....so....I have to work fulltime to keep a roof over our heads. Our case manager today told me that the State would rather have him homeless than pay for aides in the home. NO, They DO NOT want him in a nursing home, either.
Catch 22
I asked if I could be brought up on criminal charges if I left him alone while I worked. Possibly, if State felt it was negligent. Poor aides, asking them to cut their hours and hope he is alive when they open the door? That is sick.
Ok..I have the ability to appeal and negotiate. If I can negotiate to something reasonable, I can afford to pay out of pocket for difference to hold down my fulltime job. Again..I will have to use funds I was going to use to jump start a 401K for myself this January.
I swear...I am going to be a homeless bag lady in Albuquerque when this is over. I better get into Heaven or I will be PISSED!
Patty, sorry to hear this 'he..' you are going through. You should not have to. I remember years ago when they were pushing home care vs institutional because it was cheaper and better for the patient. It is a Catch 22 and it stinks. Unfortunately if the national heathcare does not get repealed in full or part, I am afraid things like this will become the norm. My sister is on medicare and Kaiser and never had to pay a co-pay. Because of the healthcare bill she now has a co-pay and she only gets $600 a month social security after medicare and insurance is taken out. So go figure!
Charlotte if her income is that low, she can qualify for extra help and her medicare premium will be covered as well as most of all her medication co-pays.
Is there any way to appeal this decision? Usually with any state or federal agency, there is a standard appeals process. In our state, evidently there is pressure to terminate all kinds of benefits, using any means possible. I have had to file an appeal when DH's benefits were cut. (Actually, I went so far as to go online and read the state manual to find out what the requirements are. It's pretty hard for them to dispute their own manual. I did win the appeal.)
Your experience is the worst nightmare of many caregivers. We want to provide good care, but one person can't be everywhere and do everything. And with the general public, including people who are cutting benefits, not understanding this disease (I can't believe they even said the word "babysitting"!), it probably will only get worse.
My heart is with you on this. Please keep us posted.