Convoluted health care–related question

zucca

A friend has a domestic employee who has Obamacare and desperately needs a lung replacement. Apparently, the best hospital for this locally is Columbia, which does not take her insurance. Due to (or exacerbated by) recovering from another unrelated surgery, she is currently unable to work. In order for her to collect disability, her employer has to stop paying her, but the financial gap could cause a hardship for her. I'm not sure what I'm looking for, exactly, but we are pretty distraught. She also does not have a PCP who is actively taking charge of her health care. So, I'm wondering whether there exists someone who can guide both of them on what needs to be done financially, insurance-wise, and health-wise, or whether I'm looking for two (or more) people. It's been recommended that she change her insurance so she can go to Columbia, but I don't know how long that would take, and we're concerned about her health now. My friend would like to do what she can to help, but the patient's means are limited. If anyone can recommend someone who can help, that would be amazing.


Steve

If she stops working/getting paid, will she qualify for Medicaid?  If so, does Columbia take that?


joan_crystal

A few thoughts:

Does your friend's insurance plan offer a contact (number generally on the back of the insurance card) who can help her locate a PCP who is a member of their plan who can help manage her care or better yet a case management service that can help her through the entire process?  If so, that would be the best place to start.

Which hospitals accept her insurance?  Would she be able to get the quality of care she needs at one of them?  Columbia may not be the only viable option.

If her employer is willing to continue paying her, at least for now, while she is out sick, why wouldn't she take advantage of that option.  While on sick leave, she can explore the options she would have in applying for/obtaining disability insurance.  SSI, for example, can be a very long drawn out process and not a given for acceptance into the system.  Better to do her research while still receiving a paycheck.

Even if she is able to change her health insurance coverage at this time, her operation might not be covered due to it arising from a pre-existing condition.


zucca
Steve said:
If she stops working/getting paid, will she qualify for Medicaid?  If so, does Columbia take that?

 Yes on the Medicaid, I believe, but we've been told that can take a while, and we're in a bit of a panic about her health.


zucca
joan_crystal said:
A few thoughts:
Does your friend's insurance plan offer a contact (number generally on the back of the insurance card) who can help her locate a PCP who is a member of their plan who can help manage her care or better yet a case management service that can help her through the entire process?  If so, that would be the best place to start.
Which hospitals accept her insurance?  Would she be able to get the quality of care she needs at one of them?  Columbia may not be the only viable option.

If her employer is willing to continue paying her, at least for now, while she is out sick, why wouldn't she take advantage of that option.  While on sick leave, she can explore the options she would have in applying for/obtaining disability insurance.  SSI, for example, can be a very long drawn out process and not a given for acceptance into the system.  Better to do her research while still receiving a paycheck.
Even if she is able to change her health insurance coverage at this time, her operation might not be covered due to it arising from a pre-existing condition.

I do worry about the pre-existing condition issue. She has been going to a different hospital, but it is a complicated surgery. Because she is relatively young for someone needing it, she has been low on their list for a replacement. But I feel like her condition is acute at this point, and there are other issues, including things like her needing to get a visa for a relative to come care for her for several months post-op. (Having someone lined up is a pre-op requirement.) As Steve notes, there are drawbacks to her being continued to be paid. Honestly, trying to sort this out is making me feel so dumb.


joan_crystal

Please check the criteria for qualifying for Medicaid against this person's financial circumstances before urging her to stop receiving a paycheck so she can receive public assistance.  Look back period can extend for years and assets will also be a factor.  

In the present political climate, getting a visa for a relative so that relative can provide home health care may not be easy either.  It would be a good idea to have a fall back plan in place just in case such a visa is denied.  

None of this would be easy for anyone, especially someone with a personal connection to the person in need of care.  You are asking the right questions and you will come up with the answers you need.


kthnry

I would start by requesting an appointment with a social worker at Columbia. 

Does she live in NJ or NY? There are no NJ-based ACA plans that provide out-of-state coverage (except for short-term emergency treatment). If she is an NJ resident and it's really preferable to be treated at Columbia, her first step might be to move to NY and get a new policy there. (Yes, that's ridiculous, but welcome to the American health care system.)

If she switches to a different ACA plan, there will be no exclusion for a pre-existing condition. Eliminating that was the whole point of the ACA. Don't even look at non-ACA plans.

If her condition is that extreme or unusual, there might clinical trials or research studies where she would be treated for free. Some of them even cover travel and lodging if you're not local. If you know the exact diagnosis, you might look around on clinicaltrials.gov. You might see if Columbia has any studies she would be eligible for, since they evidently specialize in her condition. 


joanne

Sometimes the support agencies' resources pages and people have info that can help you. I'm thinking of the groups to support family carers and recipients of donated organs (for example), and those on very long waiting lists. I can't even think how to start that search now  however I'm sure you can; here, I'd have no problem giving you 6 contact numbers. 

I've previously found talking with someone in a similar support role has sparked new thoughts on planning and scheduling.

I'm sure this sort of situation is more common than people realise. There will be fact sheets, and resource guides somewhere. 

Not phrasing it well, wishing your friend the best outcome possible.


jmitw

(i'm assuming she is paid on the books and pays taxes)


can't change insurance without qualifying event.  I assume this person is in NJ.  NJ has mandatory temp disability insurance...pretty easy to qualify, unlike SSDI.  it runs for 6 months.


not everyone can go to the best hospital...is there another good one?  I assume they have been in contact with the sharing network.

i doubt NJ medicaid covers NY hospitals.


will she be eligible for medicaid with NJ temp disability?  may still be over the yearly income limit (I think about 15K) to get medicaid


for SSDI (likely not SSI unless the SSDI benefit is very low below 771), the person has to be unable to work for a year...at any job.  SSA will likely say she can do sedentary work for now or assume with a lung transplant will be able to return to work within a year.  SSDI doesn't kick in until the 6 months and medicare doesn't kick in for another 2 years.


pre existing conditions are supposed to be covered...always were when previously insured and just switched as far as i remember.


if a person is eligible for medicaid, it will be back dated to the date of application....but in the mean time can be a problem dealing with doctors and hospitals.


the transplant list is not just by hospital..it goes into the system that tracks need among all hospitals (unos).

https://www.njsharingnetwork.org/

i would think they would be the best resource...docs really should have referred to them already


zucca

So much great information here. Thank you! 

We will definitely contact a social worker at Columbia (and maybe at her current hospital) asap.

She lives in New York, so that is helpful. I started looking at clinicalstudies.gov. Not sure what she qualifies for, but it does look like the bulk of the studies are at Columbia. 

Part of why I'd like to see her make the switch to another hospital is that she is not being prioritized at the one she's been going to. To their credit, they did say that they would be able to help her sister with the visa process, but I understand that that is par for the course.

I am really heartsick about this. The prognosis without a lung replacement is grim.


dave

Medical tourism is always a less expensive alternative.   Thailand has a good system and good doctors.  If I weren't already getting free health care in Hong Kong, I'd go here:

https://www.bangkokhospital.com/en


jmitw

i don't think she would be a higher priority at another hospital.  there are strict guidelines to establish placement on the list.  all hospitals enter patient info into the UNOS system...the system matches donations with recipients based on who is most in need anywhere within the donation area, not just that one hospital.

it is possible to just transplant half a lung from a living donor if a compatible person is willing...relatives are more likely to be a match...although right now I am only seeing articles about 2 lobes from 2 donors.  With a directed living donation, doesn't matter where on the list the patient is.

In NY, if there is no short term/temp disability insurance, a person may get SSI for the first 5-6 months of a disability and that may automatically come with medicaid...BUT, at best it takes about 4 months to be found eligible.  while medicaid would be retroactive, it won't get you into Columbia for a transplant until it takes effect...and then once SSDI kicks in during month 6 of disability, medicaid stops (assuming the SSDi is more than 791 (i think) and the person is not eligible for SSI any more......and its doubtful a SSI/SSDI claim would be approved on the  initial application....SSA will wait it out until they are sure the person will be unable to do any job for at least a year


Steve

If she's in NYC, she should make an appointment with someone at NYC HRA to find out about the availability of benefits.


zucca

Okay, great. Thanks!


shoshannah

First, a clarification of terms.  We ALL have Obamacare.  ACA is a law that applies to (almost) all insurance plans, no matter how we obtain them.  I think you mean she bought her insurance plan from the New York State exchange.  Which county does she live in, and which plan does she have? I find it hard to believe that Columbia does not take one of the exchange plans offered in Manhattan.  If it doesn't, she needs to see who takes her plan and go there. 

Second, who told her she needs a lung transplant (assume that's what you mean by "replacement") ?That doctor has to help her navigate this.  If that doctor cannot, then she needs a new pulmonologist.  Find one on her plan.

Third, what's her diagnosis? She should get in touch with the relevant patient association for her disease, e.g., American Lung Association, COPD Foundation, Cystic Fibrosis Foundation, etc. These organizations have patient advocates.

Fourth, the transplant list for any organ is centralized nationwide.  There are guidelines.  Individual hospitals don't keep their own lists.


zucca

Sorry, I am just now seeing this last post. Yes, apologies for my ignorance, part of which is ignorance and part just sloppiness. I meant lung transplant. 

She has been diagnosed with interstitial lung disease. 

She has been told that Columbia won’t take her insurance, but I will confirm that, given what you’ve posted. I believe she lives in Queens, but I can find out which plan she has. 

This is not my field or area of expertise, so I am learning as I go. I realize that organ transplant lists are centralized, but somehow individual doctors or hospitals must advocate for patients, right? I guess that I don’t feel like her pulmonologist is helping her navigate this well enough at this point. 


shoshannah

OK, so it seems she has a pulmonologist.  Has her pulmonologist put her on the transplant list?  The patient has to meet certain criteria to be eligible for the list.  Usually when an individual has a disease that could require a transplant, the patient is carefully monitored for changes in status until the criteria are met.  She needs to ask her doctor, 1) Am I on the UNOS transplant list? 2) If so, how close am I to the top of the list?  3) If not, what the criteria are for getting on the list and how do I get evaluated for placement on the list? 4) What is the closest hospital that performs lung transplants and takes my insurance?

If she doesn't feel she's getting good care from her current pulmonologist, she should get a new one.

Also, call the American Lung Association Lung Help Line and see what kind of resources they can offer.

https://www.lung.org/support-and-community/lung-helpline-and-tobacco-quitline/



zucca

@shoshannah, is this your field? Do you know if there are people you can hire to help you navigate this? She has tried twice to walk in at the Social Security office and both times the office has closed before she got a chance to talk to someone. She can't get an appointment until August 5. Does anyone know whether that means she can't start collecting unemployment before then? I'm going to try the American Lung Association help line now. Thanks!


jmitw

unemployment and social security are 2 different things....


you can't collect unemployment if you are not able to work.

she needs to fill out the disability application online.  As far as I know the whole SSDI application can be filled out online, and the SSI screening application can be filled out (SSI would cover the 1st 5 months if she were financially eligible, SSDi starts in month 6...if her SSDI is low (below about 791, maybe a little more) she will get a combo SSDI/SSI to bring it up to 791 plus the small state supplement).


at  best it takes about 4 months to get approved for SSDI/SSI....and most people are denied the 1st time and have to appeal.  if she is able to do light part time work, as long as she is earning under 1220/month she can apply for SS.


to be approved for SSDI/SSI the person has to be unable to do ANY work and earn at least 1220/month.  if she is older than 50-55, she wouldn't be expected to retrain for a new type of work, but would be expected to take light duty jobs in related fields if she could.  that level of disability needs to be expected to last at least a year.  My best guess is SS will say if she gets a transplant within the next couple of months, she will be back to work within a year...so they won't approve until they are sure it will take at least a year....it looks like standard recovery is 3 months after surgery (although it can vary)

have you called the sharing network?  they specifically deal with


i do know someone that fraudulently collected unemployment while applying for disability....she still got approved for SSDI..i don't know the details....but a person could be forced to pay back the unemployment....

and for unemployment, you need to be fired/laid off.....the person I know was fired because her mental illness made her a threat in the work place...


the doctors should be following strict guidelines about placement on the list....although i wouldn't be surprised if a doc insists on acting stupid.....if the guidelines are being followed a different doc won't make a difference.....


this looks like NY sharing network

https://www.liveonny.org/


shoshannah
zucca said:
@shoshannah, is this your field? Do you know if there are people you can hire to help you navigate this? She has tried twice to walk in at the Social Security office and both times the office has closed before she got a chance to talk to someone. She can't get an appointment until August 5. Does anyone know whether that means she can't start collecting unemployment before then? I'm going to try the American Lung Association help line now. Thanks!

No, it's not my field exactly.  I write about health care, so maybe I know more than the average person.  I've also lived in this country my entire life, so I know how the system works and know the right questions to ask. 

I think your friend is making it more complicated than it is.  Or maybe she's just overwhelmed and doesn't have social support.  You're raising a separate problem now, her disability application. That's a separate task from getting the right medical care.  

Maybe she can call UNOS and get suggestions about getting connected with a social worker if she doesn't have a friend or family member who can do research for her.  Or maybe she or you can make a list of all the domains of tasks that need to get done (medical, disability, transportation, etc.) and have one person be in charge of the resources and details for each domain.  


zucca

I really appreciate all the help. Ugh. I didn't mean unemployment; I meant disability.

I think that the patient is pretty debilitated now, but it doesn't help that she isn't great at  communicating exactly what the doctors are telling her.

Interesting about 3 months, because one of the prereqs she was given for qualifying for the transplant was that she had to have six months of care lined up.

Anyway, I realize now that she needs to fill the SSDI form out online, which is good to know, since she couldn't get an appointment in the office until early August.


jmitw

if she has no or limited income the 1st 5 months, and less than 2000 in resources (money in the bank, a 2nd home, a 2nd car), she would get SSI for the 1st 5 months....its about 800/month in NY and should come with medicaid, problem is by the time she is approved, it will likely be at least the 6th month of disability and if she only gets SSDI, then she doesn't automatically qualify for medicaid..although she might based on her SSDI amount, but would have to apply separately...


a lot of SSDI/SSI is just filling out the paper work the way SSA wants it.  If she can fill it out perfectly (and her doctors know what they are doing), there is chance she will get approved on the initial application, but it has to PROVE that she will not be able to work for at least a year.  if  they make the case for 6 months post surgery, my guess is SSA will say if she gets the transplant in the next few months, she can return to work in under a year and therefore is not qualified....

do you know how long she has been out of work already? if its been a couple of months, by the time SSA gets to her application, it may be 4-6 months in...which would put her close to the inability to work for a year mark...(assuming she doesn't get the transplant quick)


i just did a quick search on recovery time and a couple of sources said 3 months.


is she fluent in English?  if not, is someone translating for her.  Even people decent in English may have trouble understanding medical stuff when English is not their primary language.


if she is eligible for SSI for the 1st 5 months, that needs to be completed with a rep, i don't remember if that can be done by phone, but an appointment is needed....but filling out the 1st part/SSDI app online protects the application start date.




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