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Augustmoon

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Loved one DX
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Delaware
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Hockessin
Hi all,
I've posted a few of my concerns about my Dad, and I thank you all for reading and responding.
This new issue is quite awful. My dad was diagnosed with ALS in August 2014. He seemed to have "a light case" at that time, but has since developed quite a bit of difficulty breathing. He declined a feeding tube in March, and, a few weeks ago- declined a tracheotomy as well. When his primary care doc learned that he declined the tracheotomy, she suggested he begin hospice care. He agreed- and signed on with hospice on May 6 2015. He is taking morphine for air hunger- but is in no pain.
Once hospice came on board- my parents, who are 79 years old, felt comfortable with the services offered- especially because they are in a remote location- and for whatever reason, hospice offers better care, closer to their home- than does the closest ALS center.
But here is the awful part. Back in March 2015, my Dad began the laborious process of getting a motorized chair from the ALS center in Miami. It took a lot of phone calls, and emails to get things rolling. It seemed like the ALS Miami center was just not user friendly. But finally, the motorized chair seemed to be in range. Just when it seemed that he was finally on track to receive his own custom chair- he got a letter denying him the chair because he opted for hospice 2 weeks ago- even though the paperwork and measurements for the custom motorized chair were done over 2 months ago. Apparently ALS patients are not allowed to have motorized chairs once they are on hospice. This is so awful- my Dad needs the chair to sit comfortably, to rest comfortably with his BiPap, and to move around his house, and to go out in the world. Thankfully, he has use of a loaner chair, which unfortunately does not fit his size, from the local ALS loaner closet. Now he understands that he may have to begin paying out of pocket monthly for that. And all the time spent negotiating the custom chair, and driving 200 miles for measurements of a custom chair have been in vain. My parents just had a $4,000 wheelchair ramp and modifications done to their home. They secured a $40,000 wheelchair van to use.
Even though, as a rule, hospice doesn't go for wheelchairs- isn't the motor chair for ALS different? This chair provides so many more comforts than simple transportation. My dad needs the chair to sit in and eat, and to rest, and to move by himself. Wow- he was so close to getting a custom chair. Now it seems lost. Does anyone have any knowledge of this particular issue?
 
Hospice replaces medicare. Whatever he needs is supposed to come from hospice who get a certain amount monthly to care for each patient. So the general advice ( too late in this situation) is get all your dme first. You do have the option of going off hospice but that would mean starting all over again probably and does not sound like something you want. What does hospice have to say? I don't think there is any way they could buy the power chair for him given the way the finances work but talk to them. They might be able to get a manual chair that reclines. Not optimal I know but better than nothing? Really sorry
 
Maybe you can get a loaner chair from the loan closet. I know ours has a few (no good for you) and I had one until my chair came in. Look to both ALSA and MDA clinics. They are there to help, one would think. Sorry for the trials you are going through.
Doug
 
> hospice doesn't go for wheelchairs- isn't the motor chair for ALS different?

If you're asking if als patients get a different type or differently equipped Pwc, no, it's a standard PWC.
 
It's not that he can't have a chair while in hospice. It's that insurance won't buy equipment like that while someone is on hospice. Unfortunately, when the claim is adjudicated is when the hospice would come up. Some people "leave" (disenroll) in hospice, get equipment, then come back in. There is no reason he can't do that, too, unless I am missing something. He's still at home. It's just skipping some visits. Your mom can give morphine, or a home health nurse from that side of the agency. If the nursing director doesn't get it, talk to the social worker or business manager of the hospice and make arrangements accordingly. Take a deep breath, then make some calls. This has happened before.
 
I'd like to know how long it will actually take for the power chair to arrive- and then consider terminating hospice for that length of time. It will be up to my parents- obviously- they are of sound mind, I just want to help them however I may. I'm concerned though, that making really big decisions- like accepting hospice, should be made after all factors are considered. I wonder why the hospice staff didn't ask about the power chair that was recently ordered through Medicare. I would think that they would have suggested my dad wait for hospice until the chair arrived. My mom is a retired nurse- she can give morphine, and I believe my dad's primary care doc would write the prescription. It is daunting that my folks are 1300 miles away. Phone communication is great- but eye contact and human touch is better. I wonder if hospice rushed my dad to accept their services. Is Hospice first for profit?

The actual presence of the loaner chair is a good thing. Even if it is a little too big- it serves the purpose of providing mobility. So that is a good thing. Another good thing is the loan of the handicap van. It is good to count your blessings whenever possible.
 
I think the hospice services vary. Some are really great and they are for profit. Others stink. The hospice representative that initially came out to see us was very honest and upfront. She told us what hospice would pay for and what they would not pay for. She told us that some people will revoke their hospice services to get expensive medicines and equipment and then go back on hospice. However, the hospice service does have the right to not enroll you after you have revoked the services a few times. I don't think that happens often, though.
 
Moon, the chair won't arrive until the insurance claim is processed. The DME is not going to place an order until the submission is approved by insurance, meaning the DME knows it is going to get paid for the chair. The claim will not be approved while he's on hospice. You can't wait until the chair arrives to change his status.
 
another option is looking for a used chair to purchase. many are for sale for a reasonable price and hardly used. look on the used equipment thread here or on ebay . You might be able to get one for under $5000. most sellers just want to get rid of it, and they will tell you the size of it and the size of the former owner. It may not be custom to his needs, but there are so many that could be a good fit!
 
That is true. We sold Larry's for almost nothing as a backup chair to a person with muscular dystrophy, since there was no interest here. But to have a better, newer chair for less money seems like a better deal, since your dad may have years with it. Moreover, newer chairs are less likely to need repair, and all repairs would be his responsibility with a used chair, whereas Medicare pays for whatever the new chair needs (apart from deductibles/copays).

As to your question, Moon, why hospice didn't mention all this, maybe some would have it as part of a pre-entry checklist, but probably most don't consider that their responsibility.

Anyway, in answer to your other question, assuming your dad is getting a Permobil or Quantum, once the claim is adjudicated and the order placed, he should have the chair in a month or two. You might find out who the DME is (or perhaps the Center there handles that directly) and become friendly with your dad's account manager there, preparing to be the squeaky wheel if/as needed.
 
Wait time for a power chair is nearly all in the paperwork. The provider can't actually order the chair from the manufacturer until they have Medicare/insurance/self pay approval. I am not certain how long chair assembly takes with a Quantum brand, but Permobil will have it at your door in a week.
Hospice is not a single organization. Their are many that have facilities or home care staffing offices as part of a large or small chain. Others are a local inpatient or outpatient hospice. Only some are non-profit. Chains tend to have the same rules for coverage from one facility to the next, but even these can vary since the chain may be in several different states, populations, economic areas. Even among non-profits the rules for coverage and every other aspect of care vary. Comparison shopping is important whenever their is more than one hospice in your area. Similar, yes, but not the same.
 
The loaner chair my dad has did not come from the ALS closet- it was on loan from the Mobility wheelchair company that my dad was getting his custom chair from. This complicates things. Wow- they were so close to having his new chair. I suggested to my mom that my dad consider dropping hospice until the new chair arrives. My mom thinks this would be fraud. Medicare fraud is huge in Florida. I don't really think this would be fraud- I truly believe that the hospice should have made certain that there was nothing outstanding from Medicare that would be lost once my dad accepted hospice.

I will search for another chair from the Miami ALS loaner closet, and check craigslist for used chairs. I had 2 power wheelchairs from my father in law- who passed from Parkinson's disease last July. One was a very high end unused Golden Alante- I sold it for $100- I had no idea it was so valuable. It sold so fast! I sold his other power chair for $300- thinking that I undersold the first chair. I grossly undersold them both- but I'm hopeful they went to someone in need.

On Tuesday my parents have a meeting with the hospice social worker. I'm hoping everything will work out. Perhaps hospice will have funding to rent the chair for my dad- or they will advise him his best avenue.

Thanks for your responses! Igelby- is really like it if my mom could contact you. She feels isolated in her situation. What is the best way for her to do that? She is not incredibly computer savvy- I don't know how she would negotiate this forum without my oversight.
 
it is not fraud to leave hospice service and then come back. he is on palliative care--it is not the very very end for him. In fact, hospice will kick you off if you do not progress fast enough
 
A wheelchair suitable for the advancing disability of ALS costs about $2,7000. If you need a wheelchair you probably have Medicare in place. The 20% copay is then about $5,400 and a Medicare supplement will usually pay 80% of that. So paying more than what your copay(s) will be for a used chair is not good. Luckily there are lots of used chairs available for less because people recognize they may end up paying more for used than new. The advantage of a used chair is that it is available immediately with no paperwork. The downside is that it may not fit well and never be comfortable for that reason, may not be adaptable for equipment you may need in the future, and Medicare won't pay for adaptations or repairs.
 
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