Singlemom, the process to apply for disability is pretty simple and can be done online. If you've made up your mind that that's the direction you want to go in, why not fill out the information rather than wonder if it will be approved or not. On the form, it will ask you how the illness is affecting your daily life, so be detailed and please do not minimize the side effects.

Does anyone know, if you decide to apply for disability and get approved, can you put collecting on that on hold until you are really ready? I know it takes 5 months to get approved so i would want to start the app in time to not have to wait for benefits. But also don't want to quit before I am really ready. I would like to quit while I can still do things that are important to me and just finally have some time to think! Divine, I see your point entirely.

You decide when to apply, but you have to stop working for the application to be approved.

For example, I could stop working tomorrow. My date of disability would be 12/24/15.

But I could wait several weeks to apply, since disability benefits don't start until after you are disabled for five months.

Here is a large US study on the topic:

Financial Hardship Associated With Cancer in the United States: Findings From a Population-Based Sample of Adult Cancer Survivors

Results Material financial hardship was more common in cancer survivors age 18 to 64 years than in those ≥ 65 years of age (28.4% v 13.8%; P < .001), as was psychological financial hardship (31.9% v 14.7%, P < .001). In adjusted analyses, cancer survivors age 18 to 64 years who were younger, female, nonwhite, and treated more recently and who had changed employment because of cancer were significantly more likely to report any material financial hardship. Cancer survivors who were uninsured, had lower family income, and were treated more recently were more likely to report psychological financial hardship. Among cancer survivors ≥ 65 years of age, those who were younger were more likely to report any financial hardship.

free full text article:

http://jco.ascopubs.org/content/early/2015/12/07/JCO.2015.62.0468.full

Artistatheart,,

Do you have short and long term disability at work ? You can collect from that and still apply for ssdi. Also, if you take disability at work, they don't dismiss you until a year. Which means your insurance premium would be currently what you are paying. The other option is to see if your husband can cover you under his plan. I would be hesitant to count on Medicaid too. I have a daughter that is disabled, they are very strict on who gets it. You can not have more than 2000.00. Best of l

Those are interesting articles and worth reading. Everyone who is contemplating taking disability should read them. My concern is that these articles are quite intimidating for the average person and create needless anxiety.

As a practical matter, it's not difficult to navigate the system. Everything is automated and you receive letters informing you of your rights every step along the way.

I can tell you from experience with the healthcare system on the financial side of things that most people who don't have insurance don't understand how the system works. Because we are a long-term care provider, we deal with the Medicaid process all the time. Some people will be fortunate enough to have some assets before they need Medicaid and will have to do what we call "spend downs". How much this is depends on the state you live in. But you can get this information from you state's Healthcare Policy and Financing department. The main point I want to make is that eventually everyone can qualify for Medicaid, regardless of your financial situation. If this weren't the case, we would have many people over the age of 65 who have no insurance coverage at all. This would also be the case for people over the age of 50 who develop health problems. And yet, I've worked with many people between the ages of 50 to 65 who are disabled due to health problems (not necessarily cancer) who are fully eligible through Medicaid and have all of their financial needs met. They aren't wealthy, but they are not homeless or lacking basic necessities like food and clothing.

Most people who are not working will meet the poverty level requirement. Unless you have amassed a large sum of money, you won't be able to afford COBRA benefits or be able to afford your own coverage. Because of the nature of cancer treatment, most healthcare plans in The Marketplace simply don't provide enough coverage and you will still have large copays - especially for standard things like PET scans and MUGA scans. I was quoted a copay of $250 for each of these scans with the highest coverage plan they had. With financial assistance, I would still have to pay $500.month for insurance coverage (and I was only paying $350/month through my employer).

It's always good if you have a spouse who has an employer sponsored plan and you can receive coverage under their plan. However, some employers of smaller companies are finding that providing health insurance coverage for dependents is too expensive and are dropping that benefit. So your spouse may not be able to get benefits for you.

The other thing I would bear in mind that, if you are married, some assets may be excluded because of spousal protection. For example, owning a house. Your spouse must still have a place to live.

One mistake that people make is that they think they can give away assets to family members before they apply for Medicaid. If you are thinking about doing this, DON'T. It will disqualify you for Medicaid for five years.

My employer sponsored plan was through Kaiser Permanente and when my coverage ended, I received notice from both my employer and KP. This qualifies as a "triggering event". Kaiser Permanente is a large enough organization that they have licensed advisors to speak to about my options. When I told her about my personal situation and explained to her that their Marketplace plan was inadequate to meet my needs, she transferred me to the appropriate organization that handles Medicaid for my state. Everything happened on the phone.

One thing I would recommend is to talk to someone at your cancer center about applying for Medicaid. They usually have social workers and these professionals are used to helping people navigate the system.

As far as finding providers, you will receive a list of providers available to you in your area. But if you are being treated at a large cancer center, they most likely accept Medicaid and the transition from one type of insurance coverage to another will be pretty smooth. Their billing department will do all of the grunt work. Because of computers, they can access information about your eligibility through the Medicaid portal. And frankly, most hospitals take Medicare and Medicaid. If you live in an area with a large university hospital, you should be able to find a provider - and you will get the best healthcare available, because teaching hospitals provide the best care from the leading researchers in the country.

My own experience with the healthcare system is that Medicare and Medicaid provide the best coverage available. What most lay people don't understand is that the Federal government regulates anyone who accepts Medicare and Medicaid through the Center for Medicare/Medicaid. Nearly every question you have about Medicare or Medicaid eligibility can be answered by researching their website.

Hello everyone and best wishes for a beautiful 2016! I've been doing some lurking every so often but not posting until now. I'm so happy for this thread, LynnFish and all the great info! Very timely for me as I am struggling with not enjoying work anymore and always feeling exhausted. Faslodex is doing the trick for me- no evidence of active disease on scan in September, Now I wonder constantly about what's best for me: work on reconnecting to what is good about my work, taking an early retirement, (just celebrated my 59th BD) going on disability first even though I don't feel disabled other than tiredness and cognition being "different" I know I freaked out my spouse and our financial advisor out when I said my job "is killing me." I wasn't even aware of what I had said.

There's so much to sort out- Can I afford to retire? Can I afford not to? How long will savings last? What about health coverage?

It feels almost more overwhelming than the cancer so thanks again for all the info. I'll be rereading this thread!

Peace to all of you ladies!

Lisa

I heard somewhere that when decisions are difficult it's because you don't have all the info you need.

Caryn, thank you for your input. It's a wonderful feeling to be "known" in this online community. Ed Services or Special Education are two areas I'm interested in but not in my current district. A big part of my disaffection with my job is the district in which I work. I've never felt that we are a good match and it's just getting less so. I also think of teaching again but would love to do it part time and the district has eliminated tandem assignments.

Sorry everyone for for the "shop talk" Probably should have pm'd

Lisa

Hi Wilma,

There appears to be much regional variation in whether and when and how SSI and SSDI (two different programs) approvals and renewals happen.

Yes, MBC is on the list of Compassionate Allowances that nearly guarantee quick approval for SSI/SSDI:

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

But re. working and earning money, I've heard everything from recipients being unable to earn any money at all to a very small earnings cap to a limit of $1090 to the Ticket to Work program for getting back to work. Some have had their benefits revoked for working, some even for being NED and presumably able to work.

Basically, it's a big mess to sort out for each of us - I think because the programs serve such a variety of recipients from permanently disabled young people (think Down's folks) to newly disabled skilled workers to terminal patients...everyone but those over the age of 65 who are on regular Social Security.

https://www.ssa.gov/planners/disability/dqualify5.html#&a0=0

The two programs (SSI/SSDI) are for those who can't be gainfully employed, but different SS offices interpret the qualification guidelines differently.

Add into the mix that for SSDI you must have a certain amount of earnings and SS deductions within a certain time. Qualifying can be difficult for those who've worked at home, are self-employed and worked for self-funded employers (schools are notorious for having their own in-house systems that can leave their workers stranded without access to SSI/SSDI or Medicare).

Then there's the $2000 property limit for SSI (at least recipients get income Medicaid right away) or the 5 month wait period for SSD income after your disability date and the additional 24 month wait period for Medicare.

There's a lot to sort out before you even apply.

It's worth taking all the time before hand though to speak with real experts.

If you can't wait, here's a helpful book:

http://www.nolo.com/products/nolos-guide-to-social-security-disability-qss.html

I'm just a patient who's heard and read some hopeful, helpful stories and some confusing, unhappy ones too.

good wishes in navigating your personal way through this, Stephanie

kahula,

Typically your short term will be done before SSDI kicks in, 5 month waiting period. When approved for SSDI, you will get the amount that they determine and your son would receive half the amount of your check. Depending on how your long term policy is written is rather they reduce the amount they owe you by what you are getting from SSDI. Most company policy are written that way to reduce how much they have to pay. Best wishes to all.

Longtermsurvivor,

Thanks for the resources! I will look into them. You're right, everything is so varied that it's hard to get the specific answers. Thank you (and everyone here) for sharing your knowledge and resources. I want to continue working as long as I can, but want to know if there is a way to get the clock started for date of disability for medicare in the future. For example, take a short leave of absence, and then return to work. Not sure if that is doable. But that's why I'm researching now! Thanks!

American Cancer Society News Release:

Financial Burden of Cancer Survivorship Varies by Age, Cancer Site

Study calls for targeted efforts to address excess costs faced by those with a history of cancer

December 26, 2016—Survivors of cancer pay thousands of dollars in excess medical expenditures every year, with the excess financial burden varying by age and cancer site, according to a new American Cancer Society study. The study, appearing early online in the Journal of the National Cancer Institute, says targeted efforts will be important to reduce the economic burden of cancer.

As a group, cancer survivors (estimated to number 14.5 million in the United States in 2014) face greater economic burden, including medical expenditures and productivity losses. But relatively little is known about whether that burden varies by cancer site compared to similar individuals without a cancer history.

Researchers led by Zhiyuan "Jason" Zheng, PhD, senior health services researcher in the Surveillance and Health Services Research program at the American Cancer Society, used 2008 to 2012 Medical Expenditure Panel Survey data to measure excess economic burden attributable to the three most prevalent cancers. They calculated excess annual medical expenditures and productivity losses (employment disability, missed work days, and days stayed in bed) for colorectal (n = 540), female breast (n = 1568), and prostate (n = 1170) cancer survivors, and for those without a cancer history (n = 109,423). They stratified the data by cancer site and age (nonelderly: 18–64 years vs elderly: ≥65 years), and controlled for age, sex, race/ethnicity, marital status, education, number of comorbidities, and geographic region.

They found cancer survivors experienced annual excess medical expenditures compared with individuals without a cancer history. For the nonelderly population, annual excess expenditures were $8657 for colorectal cancer; $5119 for breast cancer; and $3586 for prostate cancer. For the elderly population, annual excess expenditures were: colorectal: $4913; breast: $2288; prostate: $3524.

Nonelderly colorectal and breast cancer survivors were more likely to have employment disability as well as productivity loss at work (7.2 days) and at home (4.5 days). In contrast, elderly survivors of all three cancer sites had comparable productivity losses as those without a cancer history.

"This study helps us quantify the excess economic burden associated with the three major cancer sites," said Dr. Zheng. "Understanding this burden is an important step to shape health care policies to target areas where cancer survivors are most vulnerable."

Article: Annual Medical Expenditure and Productivity Loss Among Colorectal, Female Breast, and Prostate Cancer Survivors in the United States JNCI J Natl Cancer Inst (2016) 108 (5): djv382 doi: 10.1093/jnci/djv382