Insurance woes

[Sueaqq]

Hello,all, I am a non related caregiver for a patient who has completely lost use of all extremities, but retains voice and enough ability to swallow. I am emotionally having difficulty dealing with her family and medical care, although I say nothing while working of course. I am simply sad and frustrated and asking for some support and advice. The medical side is easier to explain; she gets no home care save a weekly visit from a social worker and a biweekly visit from a nurse practitioner. She only has bc/bs and disability and both have come to the home to explain she does not qualify for home care. She pays for me to come in out of her disability check. I feel terrible that she must use her whole check just to have me 1/4 of the time she needs someone. The other 3/4 of time she must rely on her partner, who works full time and is sleep deprived, and mentally pushed to the edge. I feel very sorry for him. Is there any way to help them obtain 24/7 home help? He needs to sleep, and she is depriving herself of water, diaper changes, food, medication and position changes because she is afraid of waking him up, making him angry and asking too much of him. This has been going on a year, I have been with them 2 years.

 

[KarenNWendyn]

My suggestion would be to talk to the social worker about your concerns. Hopefully the social worker can explore caregiving options that might be available to them with their insurance. Also, the social worker might be able to do some counseling intervention to help improve communication between the PALS and her partner to help with the PALS ‘ reluctance to disturb her partner and to help with his stress as well.

 

[Jrzygrl]

Have you spoken to anyone at your local ALS Association? Ours has a grant program to help provide homecare and also respite care.

 

[Narrowminded]

Unfortunately for some, it does happen that way. I agree w/jrsygrl as our assoc also has a grant program. I use it because we don’t qualify for care for my husband either. I would definitely ask the social worker to make sure they’ve explored all avenues such as waivers. If that’s been done, then like us, they are stuck.

It’s very sad, but that is the current state of our healthcare

Hugs,

Sue

 

[Sueaqq]

thank you, I wasn't sure if it was my place, or allowed by HIPAA to talk to the social worker, but I will ask. This is a palliative care team sent through bc/bs, so hopefully they would know the insurance rules. I have been thinking that they should be able to see the problem themselves, but if the PALS is not telling them everything, then they wouldn't know what goes on after they leave. I feel a little sneaky, though, giving away their family secrets, and I'm feeling a bit unethical about doing that. Thoughts?

 

[Sueaqq]

Have you spoken to anyone at your local ALS Association? Yes, I have met the ALS chapter program leader here, she is very nice. They lent my patient a motorized wheelchair and a shower chair, and recently gave her a 300.00 grant which she is using for a biweekly pain management massage. I massage her the rest of the time, though I am not a professional masseuse. Though I am appreciative of the grant, it is tiny and only covered 5 visits. My opinion is that pain management should be something health insurance covers under palliative care, isn't the point to keep the patient out of pain? Wouldn't a nursing home offer that as a treatment?

 

[Sueaqq]

Unfortunately for some, it does happen that way. Thank you for replying, I am very confused about the health insurance rules. The ALS foundation has been as helpful as they can be, but it is minimal. They can lend used equipment as needed, but financial help is minimal. I have had enough personal experience with nursing homes and rehabilitation centers to know they are very expensive and that home care comes with less cost....I would think health insurance companies would want to support a lower cost alternative if the family is willing to keep the patient at home. When I look online at bc/bs, its page says that some patients qualify for up to 35 hours a week, yet the woman that visited us said she does not know where I found that information, and that it was inaccurate. I thought my patient fell very clearly into the bc/bs care plan. The representative was not helpful at all and just said it wasn't so, end of discussion.

 

[Narrowminded]

Now every state is different with healthcare, here they do not cover private duty nursing here where I am, and that is what you need. Medicare also does not cover private duty. You mentioned palliative care, if that is coming from hospice then that changes the insurance aspect as far as I know. And yes they should be working on pain management. Trust me, I’ve been down this road, I care for my husband mostly on my own save the little from the ALSA and he’s vented as well.

You could just ask the social worker if waivers have been looked into for her to have more care available to her. Just tell her that your concerned that it’s just her husband. You don’t have to give details, just mention you know the extent of the work on your days there and think him having some extra help available would be helpful. Mention the good job he is doing, so they don’t think there is an Issue.

Hugs,

Sue

 

[lgelb]

If she is eligible for hospice, there is no set care plan, so she and her partner could interview in-network agencies to see which one would be of most help.

 

[KarenNWendyn]

I don’t think sharing your concerns with the social worker constitutes a HIPPA violation, especially since you are part of the care team. I agree with Sue’s advice.

 

[Sueaqq]

I don’t think sharing your concerns...thank you for your response, I will approach the social worker this week with my concerns and see where that takes us.

 

[Sueaqq]

If she is eligible for hospice, there is no set care plan, so she and her partner could interview in-network agencies to see which one would be of most help.

Hello, thank you for replying. She is eligible for hospice but has chosen palliative care, and as we all deal with ALS here, I hope that we all know the difference and also why one would choose to do that. If not, I could explain further. They do not have the funds to pay for more in home help, I am the most they can afford. Palliative bc/bs has said they will not pay.

 

[Sueaqq]

Now every state is different with healthcare, here they do not cover private duty nursing here where I am, and that is what you need. Thank you for your reply. To address your several comments: 1) she does not actually need a nurse at this time, just a caregiver, which is quite a bit less expensive , which is why I am amazed they won't pay for this, but will easily pay for a nursing home. 2) I will ask about a waiver this week, I had not come across that term in reading the bc/bs website or the Medicare site. 3) I absolutely praise the partner for all he has been doing...we ALL know he is knocking himself out trying to do everything. We support each other every day and he is a pleasure to work with. 4) part of the insurance problem MAY be that he is a partner and not legally married to her. I have often wondered if this is so, but I cannot ask due to privacy infringement. Nor can I ask in front of family because the children and grandchildren do not know, and the partner does not know she told me. I respect and support her privacy and her decisions.

 

[Narrowminded]

Sue, whether is is a nurse or an aide/caregiver it still falls under the same “private duty nursing” area and Medicare still doesn’t cover.

The waivers are state items and also not under the insurance umbrella. However, at least here, they are income dependent. You have to appt for them and they will come and asses your need and decide on hours. Actually, for a waiver, not being married could be a huge benefit. It all depends on how the state looks at it. The social worker should be aware of any your state may have

Hugs,

Sue