Topic: How Many Stage 4 Girls are getting SS disability..

May 26, 2016 10:20AM Longtermsurvivor wrote:

Hi Jobur,

I'm in super geek mode this morning and found some resources for you:

earlier post from bco - https://community.breastcancer.org/forum/8/topics/827475?page=3#idx_61

Feb 21, 2015 01:42PM SyrMom wrote:

Don't forget those pt on Part D Medicare - pharmaceuticals aren't allowed to extend co pay cards to those pt at all because Medicare is run by government. A benefit workers have earned and continue to pay to have, yet it's useless for at home chemo meds! (Tier 5)

x

The Pfizer website

http://pfizerrxpathways.com/sites/default/files/attachment/GroupBApplication_Jan2015_0.pdf

x

Needy Meds - another option that seems to include at least some Medicare recipients?

http://www.needymeds.org/drug_list.taf?_function=name&name=Ibrance&gname=palbociclib

x

A story about the topic:

How Big Pharma Uses Charity Programs to Cover for Drug Price Hikes

A billion-dollar system in which charitable giving is profitable.

Benjamin Elgin Robert Langreth

Bloomberg Businessweek Reprints

May 19, 2016

http://www.bloomberg.com/news/articles/2016-05-19/the-real-reason-big-pharma-wants-to-help-pay-for-your-prescription

Please let us know what you find out, we can help each other by sharing invaluable, life-saving information.

warm healing wishes, Stephanie

May 28, 2016 09:20AM Longtermsurvivor wrote:

Hi Jobur,

So grateful those links are useful to you.

Navigating the benefits maze is nearly impossible, but we can help each other to see and anticipate those blind corners and open runs.

Hoping your way forward is easeful and clear!

warm wishes, Stephanie

PS - I'm doing quite well for someone on hospice who's slowly failing. It's not like I thought it would be - no big drama or emotional extremes - still learning lots from being alive and dying too. So grateful! Love and light, Stephanie

Jun 2, 2016 05:52PM Longtermsurvivor wrote:

Hi Gramen,

Maybe I'm a little too suspicious, but I wonder if your health insurance company is directing you toward SSDI, so you'll become eligible for Medicare 29 months after your SSDI disability date.

Most health insurance companies drop from primary insurers to secondary insurers when their client becomes Medicare eligible (the client is forced to accept it).

Have you reviewed your policy to see what their policy is?

warm healing wishes, Stephanie

PS, lots more information here:

https://community.breastcancer.org/forum/8/topics/...

Jun 2, 2016 08:44PM pwilmarth wrote:

Oh there's no doubt that United Healthcare is fishing for potential clients. I've seen their marketing people do this with other programs offered by United Healthcare. Here's the real game they are playing:

You become disabled, then become eligible for Medicare in two years. Once you are eligible for Medicare, you will be offered the opportunity to enroll in a Medicare Replacement plan, and United Healthcare is a big provider of Medicare Replacement plans.

I have my own opinions about the replacement plans that United offers, but it won't be as good as a straight Medicare plan with a secondary insurance provider (such as Medicaid).

Jun 2, 2016 10:06PM pwilmarth wrote:

Artist, don't worry about your spouse. Medicaid offers spousal protection and any assets that you have as a couple are protected (i.e. savings, home, car). The idea is not to leave your spouse financially destitute.

Jun 7, 2016 02:24AM - edited Jun 7, 2016 02:47AM by cb123

Hi All,

I'm finally breaking down and going to apply for SSDI tomorrow. My 5 month waiting period since onset is over. I'm not stage IV so I expect this will take several months and I'm just checking this post for any last minute thoughts I might have missed.

I'm encouraged by the monthly allowance of $720. My benefit is not very much and $720 will help. I won't be working really, just selling things on Etsy.

I would like to clear something up that I keep seeing here. SSI is not a "low income" thing although total household income is used in determining the benefit amount. SSI is for people who are disabled and who have not earned enough "work credits" during their lifetime to qualify for SSDI. My daughter was disabled in her early 20s. She had only gone to college and worked at the mall. She had not earned the minimum work credits to qualify for SSDI. Many women who are homemakers and didn't work outside of the home, fall into the SSI category. They make you apply for both at the same time here at my local SS office, just in case you don't qualify for one and may qualify for the other. Here are some links:

SSI vs SSDI

Social Security Credits

Also, I would like to encourage all of you to keep an eye on your Social Security Statement. You can go to the website and pull it up. It will give you detailed personal information as to How much will I get if...?

Social Security Statement

Lastly, and this really sucks, my SSDI is greater than my early retirement benefit @ 62. I'll be 59 this year. When my retirement date comes along, will I earn the lesser retirement amount instead of the higher disability amount? Are they going to force the early retirement benefit? If I can (technically) retire at 65 it's almost the same as the disability. I'll get the answer from SS tomorrow. This is pretty much the only question I have left for them.

I'm not looking forward to this but I can't do my old job and I'm having a hard time finding something new that I can do with my good right arm being so tender and in pain. (It's a missing lymph nodes thing.)

The thing that's going to qualify me medically via cancer, because I'm not stage IV, is that I had 20 positive axillary nodes. 10 is the cutoff. (see below or click this link: 13.10 is Breast Cancer ). My PCP is filling out the forms to also qualify me via Depression.

Thank you all so much for sharing your experiences and knowledge. It's been a great help.

cb

13.10 Breast (except sarcoma—13.04) (See 13.00K4.)

A. Locally advanced cancer (inflammatory carcinoma, cancer of any size with direct extension to the chest wall or skin, or cancer of any size with metastases to the ipsilateral internal mammary nodes).

B. Carcinoma with metastases to the supraclavicular or infraclavicular nodes, to 10 or more axillary nodes, or with distant metastases.

OR

C. Recurrent carcinoma, except local recurrence that remits with anticancer therapy.

OR

D. Small-cell (oat cell) carcinoma.

OR

E. With secondary lymphedema that is caused by anticancer therapy and treated by surgery to salvage or restore the functioning of an upper extremity. (See 13.00K4b.) Consider under a disability until at least 12 months from the date of the surgery that treated the secondary lymphedema. Thereafter, evaluate any residual impairment(s) under the criteria for the affected body system.

Jun 7, 2016 10:02AM Longtermsurvivor wrote:

Also, SSI earned income restrictions seem to be lower than SSDI income restrictions, though it's hard to puzzle out from the Social Security Administration website. And with SSI there is a $2000 asset limit for individuals and $3000 for couples. There is no asset limit with SSDI.

https://www.ssa.gov/planners/disability/dqualify.h...

This might add to the confusion:

http://www.cbpp.org/research/introduction-to-the-s...

Oh yes, if you don't have a condition on the compassionate allowances list, you're likely to have to apply with multiple conditions that actually prevent your ability to work. Your disability must be expected to last for at least a year.

http://www.disabilitysecrets.com/dnewsblog/2008/09...

https://www.ssa.gov/compassionateallowances/

It's really worth looking into before you commit yourself to any course of action. And don't just trust us as your advisors, but please consult with a disability attorney. I believe the initial consults are free. If the attorney thinks you have a good case and can win, they may represent you and take a portion of your award amount.

http://www.disabilitysecrets.com/question16.html

Or you might choose to gather your records and your doctor's recommendations and go ahead and file on your own.

Please take the time to plan ahead for your own welfare...and that of your heirs.

healing regards, Stephanie

Jun 9, 2016 05:45AM - edited Jun 9, 2016 06:42AM by pwilmarth

cb123 - I was 60 and 1/2 when I was diagnosed but didn't apply for disability until I was one month shy of 61. And I'm dealing with the same issue that you are thinking about.

SSDI will convert to normal Social Security benefits at age 66 with no change in benefits. That's very important. You're benefit payment will remain unchanged and you will qualify for Medicare years before your 65th birthday. Under normal Social Security, I would receive about $75/month more at age 66 if I held out that long. But I receive $500/month more at age 61 under SSDI than I would receive at age 62 under normal Social Security retirement benefits.

Potentially there is the chance that you might have a review before your 66th birthday, but as a practical matter, it's unlikely that you will be disqualified from your SSDI benefit. There's an acceptance that once you reach the age of 60, it's unlikely you will return to work full-time and your disability is permanent. The following is a brief review of the standards the Social Security uses to determine when you are due for a review.

Disability Review

This should reassure you that you won't even be considered for a review for at least three years - it will probably be closer to seven years, and at age 59, you will then be 66. Which means your benefits automatically convert.

As for me, I still have peripheral neuropathy which limits my ability to stand for prolonged periods of time, and I notice it quite a bit when I use a keyboard, mouse or pen. My balance has never recovered. I have some lymphedema as a result of radiation therapy. So I don't think there would be any difficulty in passing a review. But it may be years before such a review will be required and I will be close enough to 66 that it won't matter. I will be 62 next month.

Social Security has something called the "exhausted worker" benefit, and for most of us over the age of 60, that word applies. I also wouldn't fret too much about it because there are vocational rehab programs and trial at work programs that can be put to your benefit if a question arises.

Lawmakers recognize that there's a difference between being 60 and disabled and being 35 and disabled. I'm not terribly worried about it.

Jun 9, 2016 09:11AM Longtermsurvivor wrote:

HI PWilmarth,

Thanks for your reply...actually I meant to consult with an attorney to find out about the likelihood of being approved...not to hire them to get approval. Us MBCers are in the Compassionate Allowance group - so there's no reason we should need an attorney consult unless we have a particularly complicated situation.

If the situation is more complicated - being an earlier stage of cancer and having multiple conditions leading to disability, the claims are more difficult to "prove" to Social Security. Applicants really need to focus on their disability and inability to work at substantial gainful activity - https://www.ssa.gov/oact/cola/sga.html

Actually, after I wrote what I did (and I'm happy to rescind it all), I remembered a great resource that helped me with my SSDI application in 1996 when I was in my late 30s - the local independent living center.* At that time there was no Compassionate Allowance list, the burden of proof was on the applicant and the first time applicant denial rate ran over 50%. Almost everyone had to appeal and often waited many months or years for approval. The center rep talked me through a plan to get my medical records and my doctors on board, then to walk the application and supporting documents to SS myself. In my application I focused not only on my disability, but my inability to work at any job. Because I was young, but terminally ill, I really didn't want to be forced into the rehab track.

Each of us walks a unique path in life, including life with MBC. We can reflect back on where we've been, but then each person must find their own path in changing conditions. I wish everyone well in finding their own way through this complex system!

I am so very thankful the Compassionate Allowance list was created. It has eased the suffering of many.

Healing regards, Stephanie

* USA nationwide directory of centers for independent living http://www.ilru.org/projects/cil-net/cil-center-an...

Jun 9, 2016 10:36AM Longtermsurvivor wrote:

Hi Pwilmarth,

Yes, yes, yes.

Thank you. I appreciate your willingness to sort through this together.

That link is very helpful. :)

The only thing that I've heard/read that's different is that it's possible to backdate the disability date from the SS application date.

Oh, and if you're getting COBRA health insurance through an employer, be sure to request the disability extension to 29 months within 60 days of applying for COBRA.

Q8: How is COBRA affected if I am disabled? https://www.cms.gov/CCIIO/Programs-and-Initiatives...

warm wishes, Stephanie

Jun 9, 2016 01:50PM Longtermsurvivor wrote:

Yes, I'm delighted with the ACA changes that removed the Medicaid asset limit, which used to be $2000 for individuals, $3000 for families.

When I became disabled, I had no access to Medicaid, because I had retirement savings. So, there were months of paying for COBRA, extended COBRA, a state mandated medical insurance plan, then Medicare monthly premiums, copays and deductibles.

Fortunately (tongue-in-cheek), cancer care is costly and I blew through my savings in about five years. Oh, because I was under 50, there were no Medicare supplemental plans available.

I'm pleased that others needn't lose their savings in their efforts to live.

PWilmarth, does Medicaid continue after Medicare kicks in? Medicare primary with Medicaid secondary covers costly cancer care (alliteration attack, sorry).

Also, what do you know about states that opted out of the ACA Medicaid expansion?

http://kff.org/health-reform/state-indicator/state...

warm wishes, Stephanie

Jun 9, 2016 06:35PM pwilmarth wrote:

You always have to check with your state's healthcare financing policy department regarding the impact of opting out.

As far as Medicare and Medicaid, the answer is yes, you can have both. If you review the CMS website, you will find much information on the issue of "Dual Coverage" which means Medicare and Medicaid. They operate a bit differently but the expectation is that a healthcare provider bills in a specific order. It's

Private Insurance, Workmen's Comp, or Auto Insurance provider

Medicare

Medicaid.

If you have standard Medicare, then your healthcare provider would bill Medicare and then bill Medicaid for anything not covered by Medicare. For example, your deductible. Standard Medicare covers 80% of most inpatient stays after the first 20 days. If you don't have a secondary, then you are responsible for the 20%, But, if you have Medicaid, then you have a secondary.

Medicare and Medicaid work a bit differently in terms of how much they pay for treatments. If you're a healthcare provider, Medicare is going to be financially more beneficial in terms of how much you can bill. But that's an issue for the provider and not one that a patient needs to think about.

You are so correct about cancer treatment being so expensive - it is. Which is why the premiums for COBRA benefits are so high. And why many employers no longer offer healthcare coverage for dependents as part of their employee benefit package.

What I hear from you is that you tried to do the "right" thing financially by building a nest egg for retirement and then cancer burst onto the scene and changed your plans. It's hard for someone under the age of 50 to understand that there will be something - a disease or an accident - that will alter the course of your future. It might not happen until you are in your late 60s, it might start to happen in your 50s. Or it might happen much younger than 50. And then you have to adjust your thinking to the realities of the world. That dream of a peaceful, financially secure retirement is gone.

What I've learned in the past year is that it is incredibly freeing spiritually to not have to think about money or where my next paycheck is coming from. Or working so hard to strive to build a nest egg for a future that I may never see. I can turn my thinking towards altruism and engage in the types of things that enhance my humanity.

We only care so much about money because our culture tells us to. But the things that make life meaningful are not found in money.

Jun 9, 2016 07:29PM - edited Jun 9, 2016 07:30PM by pwilmarth

One last thing on this topic.

This past Sunday, they did a show on debt recovery on Last Week With John Oliver. It was very funny, but speaks to the reality of money in the healthcare system. A woman was in the hospital's ICU for breathing problems. She accumulated $86,000 in medical bills during this stay. The person from the hospital's billing department had to regretfully inform her that her insurance provider would not cover the cost of her care and she would be responsible for the bill.

Which led to a story about how debt recovery works for people who can't pay their. bills.

What John Oliver did was start a debt recovery business. They bought old debt that the debt collectors were unable to collect. All of it was financial debt related to unpaid medical bills. It amounted to $15 million dollars worth of old unrecoverable debt. It cost the show's producers pennies to purchase this debt.

The idea behind debt recovery businesses is that they will harass the person until they pay some of the money back. Even if by law, the person is no longer responsible for the debt (statute of limitations has expired).

What John Oliver proposed for his company was to practice Debt Forgiveness. And so on Sunday, over $15 million dollars of debt forgiveness was applied to all of these old medical bills.

Ultimately, all of us need to stop thinking about who is going to pay the bill. There's a system out there. But if you're the person who needs the aid of a physician or nurse, then don't delay care because of the costs.

Jun 10, 2016 02:37AM artistatheart wrote:

Thank you pwilmarth, stephanie and cb for the wealth of info here. I have decided it is at least time to apply. I cannot imagine spending the rest of my life, whatever that is, sitting behind a desk working for an entity that uses us up and spits us out at will. I have so many more important things I can be doing. I have a lot of fear about "letting go" of working and all the benefits that come with it. But also feel excited about the change. Your information is helping me feel more courageous.

Jun 14, 2016 01:28AM artistatheart wrote:

You are absolutely right Stephanie! The only reason I have stayed this long is that I am well paid and carry the medical benefits for myself, Dh and two DD's. So dropping all of that is kind of rough to contemplate. But we are planning to downsize our home in order to manage better and will have to come up with plans for the medical. I get very excited thinking about finally having time for all of the things I have not had time for previously and am just trying to be very strategic on how I go about easing out of the working world. I am SOOOOO over worrying about my work identity and all of the crappy politics that goes with it. I also have an identity as an artist, mother, wife, bicyclist ect that I need to explore more fully. Thanks so much for the encouragement! You are amazing...