Hospice Care on a Vent

[Narrowminded]

Hospice Care on a Vent or Home Health, not Pvt Duty

Hi All,

Tossing this out there to see if anyone, in any state was able to find Hospice Care if your PALS was vented.

Or Home Health, not Pvt Duty. I currently can’t even get Home Health in for wellness checks.

If you were able to get that help, would you mind letting me know what state you are in?

I’m seriously considering moving, if that would help me get help. I have not idea if Brian could tolerate a move, but I’m at wits end.

Thanks so much.

 

[Nikki J]

I can’t remember his user name but did not that lawyer in California have hospice? I am virtually certain his wife was vented and I know they had home care. I think it was through his insurance.

 

[patrick123]

Hospice, as a rule, does not cover pals on a vent. Being on a vent. You are considered no longer terminal.
Patrick

 

[Narrowminded]

Patrick - That is definitely the way in PA, but I believe I remember some in other states getting help, so just wanted to double check. You never know.

 

[Narrowminded]

Ok, I’m going to add to this question

I am also unable to get general Home Health on a vent here now. Anyone able to at least get that in their state?

Thanks

 

[affected]

Nikki that was Dave K - the lawyer? Sadly he hasn't logged in since September last year as he was not well received here. I don't know if Sue can be helped to get an email out to him because he might be a huge resource for her?

 

[Nikki J]

Thank you I forgot his user name. We would never share an email of ANY of you without express permission. However he provided one here https://www.alsforums.com/forum/general-discussion-about-als-mnd/37362-new-foundation-help-pals.html which may or may not be current.

I would suggest wading through some of his posts as well

 

[affected]

Oh well done

I thought you as mod could have emailed him on Sue's behalf or something - there's ways to do things without just giving out an email, I didn't mean you would do that I found his name because we used to chat privately and I still had some in my PM folders

 

[Narrowminded]

Nikki thank you for that link. I will see about sending an email, although the way state laws differ, I wonder how much help he would be as it sounds like they were focused on states other than PA.

I know the PA regs around Hospice and Home Health, and I know the limits for waivers etc.

Thank you

 

[KateEmerson]

Hi Sue,

I am not an expert on the subject, only can relay what we did get or things we were told.

Job came home trached/vented and we had VNA services for the entire 4 years. The services available were: nursing, PT,OT, speech, social worker, aides. On average we had nurses in 1-3X week, PT 1-2, OT 1-2, aide 2 . The only help in terms of his care was the aide for an hour 2X week for a bath and dressing, some wound care from nursing periodically, and some ROM from the PT for a limited amount of time. Of course it was usually helpful, depending on the nurse, to have a nurse checking on him especially when there was a problem or he was " off". They also were able to supply us Medicare approved supplies. Job had the original Medicare with the BC/BS supplement.

We too were told by the 2 or 3 largest hospices that they would not accept anyone on a vent. But were told by the main one in the area that he could be in their " palliative care" group . Didn't pursue it, long story, so I don't know how much help they would have provided.

I was told, if on Medicaid we would have gotten over 100 hours of help a week!

Hoping you can find some solution!!! Kate

 

[Narrowminded]

Kate - I’ve been told the same about Medicare, but i can’t find an agency that agrees with that information. I think there is a lot of confusion about how the Medicare laws are written, and maybe purposefully so. Around here, because of the vent, I cannot get a nursing assistant, they are not allowed near him, period. I would gladly take an aide to help with his bath. I had OT, PT for 6 weeks, but they could not get auth, to continue. And I’ve spoken with like 5 or so different Hospice/Palliative Care groups and the answer is always the same.

The issue seems to be that the state changed some regs regard to visiting nurses (home health) that states they have to be vent cert and become the primary caregiver when in the home. Even though they are only here for less than an hour, maybe 1-2x a month. Before the change I was lucky to get it 1x a month. This is not a healthcare friendly state.

Hugs

 

[KarenNWendyn]

The Team Gleason House in New Orleans looks like they take vented PALS. Probably super-spendy though. I think Kim T looked into it. I realize that’s a far cry from having care in your own home that is covered by insurance.

I find it interesting reading posts from Inventor in Finland, how the ventilator care is all covered by his country’s national health insurance policy.

 

[wishmobbing]

Same in Germany. Being vented means you will get 24/7 care for free plus all the supplies. With a chronic illness you only need to pay 1% of your income in copay.
This will cost the health insurance around € 25.000,- a month. It's a rich system and it caters to pretty much all income brackets.

 

[KimT]

Gleason House does take PALS who are vented. Their rooms are set up specifically for ALS with ceiling lifts and eye gaze technology. The cost is $15,000 a month (as of 2016) and if you're an out-of-state resident, you need to pay out of pocket for 12 months to establish residency. I do believe PALS will get exceptional care there and perhaps there is financial assistance.

I looked into our local Vitas Hospice, which is heavily promoted by our local ALSA chapter, and they don't take patients vented OR with feeding tubes. I plan on bringing this up at the next meeting because they invited me to help train their CNAs and nurses on various aspects of taking care of PALS. They wanted me to put together a program and find various people familiar with ALS care to train them on Trilogy, eye gaze, Hoyer lifts, etc. They really want to help us but if they disallow feeding tubes, I don't think they'll serve as many PALS and they think.

One more failure of our health care system. This disease is horrible enough but it's compounded by extreme financial worries in many PALS. Finances should not drive end-of-life decisions.

 

[KarenNWendyn]

I’m curious if the Canadian health care system provides home care, hospice and other financial support for vented patients and their families.

I’ve always favored a single payer health care system in that it appears easier for people to get most care services without fear of bankruptcy.