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 Maintenance PT/Jimmo v. Sebelius 
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Joined: Fri Mar 08, 2013 10:17 pm
Posts: 24
Location: NH
Post Maintenance PT/Jimmo v. Sebelius
I haven't introduced myself here before, but have been following the forum for almost a year. My Mom is 81, basically in a wheel chair now, and often in, as I call it, the "dream world". She lives at home with a 24/7 aide, and I visit as often as I can (I live about an hour away). Less than a year ago, she could walk somewhat with a walker and was going to outpatient PT, where she was making actual progress. The "dream world" hit hard in February, and I got a call from the therapy place (my Mom's aide would often take her) that her distractedness was making her unsuitable for outpatient pt. (Many of the scenarios in the dream world are unhappy, unpleasant ones, but that's another topic.)

In the fall, I finally got her referred for home health pt. By now her movement was much worse. After just a few sessions, they are ending the service. Although her insurance (medicare advantage) claims that "maintenance therapy isn't covered", I know this is not the case and can argue it. The part that is tough is whether skilled care is required vs. whether care needs can be addressed "safely and effectively through the use of nonskilled personnel." The PT says the skilled function is a teaching function only, and now that a set of exercises have been taught to the aide and myself, her job is done.

I'm wondering what people think of this, what they think constitutes skilled therapy, and whether pursuing this is worth my energy.


Thu Dec 05, 2013 2:37 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Maintenance PT/Jimmo v. Sebelius
When my dad was still somewhat mobile (using walker but preferred being in a wheelchair) he was receiving PT. He got to the point where he could not remember to do exercises on his own, and eventually didn't want to do them with the PT. He went through several PTs who felt they couldn't work with him any longer. He'd gone through all of his insurance appts. for PT for the year and the ALF wanted us to pay out of pocket for PT.

My sister and I talked, and since he was getting worse physically and mentally, we saw absolutely no sense in continuing with PT. He preferred being in his wheelchair, was combative about it when his aides tried to get him to walk with a walker, so we just said "enough". What good was PT at that point for him? It was just a waste, so we discontinued it.

Not knowing much about your LO, it's hard to say, but I'm guessing she may be about in the same situation as my dad. You need to do what you feel is best. As far as what is or isn't covered by Medicare, I think that can vary from one state to another but I'm not sure. With Medicaid I know it varies, but hope someone who has more knowledge than I can help you with questions about Medicare and PT coverage.

You might ask yourself what your expectations are, and discuss them with the PTs as to whether or not your goals for your mom and PT is reasonable, especially if they are skilled at working with people with LBD. LBD has its own set of rules, if you know what I mean. Good luck, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Dec 05, 2013 5:07 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: Maintenance PT/Jimmo v. Sebelius
Oh, My Dear Sue, bless you for caring for your mother. I encountered the same problem in caring for my husband, Mr Bobby. We did not have Medicare Advantage, we had only regular Medicare. As others have said, it varies from state to state, but I can tell you the way I pursued the matter. Yes, they taught me to do the exercises but with the million other caregiving chores, home exercise often was put at the tail end of the duties as well as Mr Bobby thinking he should have the professionals doing it. He would lift the little weights to try to get his muscle to show. [How vain he was about that] I loved him for trying and having me feel of his muscle. When our number of days ran out for the PT to come to the house we would wait for a week or two and then I would ask my Dr or the visiting [medicare] nurse to start another series. It was usually agreed to. My Dr would prescribe Physical Therapy and Occupational Therapy but we would hold the OT until the days PT had run out. I hope I was not doing anything against the rules, it worked for Mr Bobby.

I realize that the rules have changed quite a bit and may change more before the new rules of the latest Health Care Plans are completely in place but I read my new 2014 booklet on MEDICARE and YOU and those rules seem to be still in place. Dorthea

BTW, since we are so near the end of the year, maybe these few days are not worth trying to claim since the cap does exist. Begin with a fresh slate in 2014, that could give you a better chance to establish your negotiating plan.

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Thu Dec 05, 2013 6:59 pm

Joined: Fri Mar 08, 2013 10:17 pm
Posts: 24
Location: NH
Post Re: Maintenance PT/Jimmo v. Sebelius
Thanks, both of you, for your inputs. I'm leaning toward waiting till after the first of the year to take this up again. We'll be going to see the movement disorder specialist in a couple weeks, and I am also trying to get my Mom in to the memory disorder clinic at Mass General, so I am hoping that perhaps I can get a doctor to spell out a skilled therapy plan that is appropriate for lewys or refer to an agency that has more expertise. Also hoping to address the delusionary aspect. Maybe with seroquel. Our current geriatric psychiatrist has been against it as long as she has some insight that the hallucinations/delusions are not real. And she does have a little insight, sometimes, not as often these days as before.

It is tough in terms of how willing my mom is to participate in therapy. When she is lucid, she wants to. But she's got arthritis and real bad osteoporosis and macular degeneration that is progressing as well, and stretching can be painful. Her aide says, "Elaine (my mom) is not lazy ... she exercises when she can," meaning when she is mentally there. But when she is in the dream world, she thinks she can just leap up and walk (I think she strolls all around the neighborhood in the dream world). Then when she is more lucid, she wonders why she can't get up, since she remembers walking earlier.

The other aspect is what Dorothea said, there are a million other things to do...

I hate this disease.


Fri Dec 06, 2013 6:39 pm
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