Thursday, December 19, 2013

"Gratitude". 15 months of unemployment, Cancer, Cobra and the ACA unknown, VA healthcare, and other thoughts from the frontlines of adversity.

"Gratitude" revisited (this is my June 5th post that has been updated to reflect the additional experiences since then).

15 months of unemployment, Cancer, Cobra and the ACA unknown, VA healthcare, and other thoughts from the frontlines of adversity.

Misc thoughts from the front lines of adversity (this will be another long post... so that hopefully, people in similar circumstances can learn from our approach to dealing with adversity). The word that gives us much meaning to describe this entire time period? "Gratitude" (we have learned the meaning of the word in many ways and live it daily):

I've been unemployed for over 15 months now (my first time unemployed for longer than a month in 31 years) and it is still very strange feeling since I am used to working over 50/60 hours a week plus weekends. A very humbling situation to be in to be sure (when one find's oneself going to a food pantry after donating to one for many years and never thinking that one would not be needing such services). God has provided for us in so many ways, we are still humbled by it all (and if it wasn't for God, we would have been homeless a while ago.... and I am convinced Penny would no longer be with us). Also, please understand.... when we say "adversity", we do have perspective (as many in the world have it much rougher trying to find drinkable water or find food or shelter)..... we know how lucky we are to live where we do and have what we have.

To give people an idea of what some people deal with while unemployed (and having 3 disabled adults living in the same home), I am sharing our efforts to give others a possible path to seek help and the hope that such adversity will not end up in despair if one uses all available resources. This essentially exposes our basic financial situation to outside scrutiny, but one must put numbers to what one is talking about to give people an idea as to how much one's finances are affected by unemployment, disability, and medical adversity.

Our friends, neighbors, and outsiders still see us as we were before Penny's cancer treatment and my unemployment / medical issues. They don't see a new car in the driveway anymore, but they still see us doing what we were doing before all of this happened. We still go to church, go get groceries, etc. But we are sometimes gone for days at a time when Penny gets surgery (and they see different people coming to our house to check on Travis). Otherwise, our home is still heated... it still has electricity and water, and the garbage is picked up. I mow the lawn with the riding lawn mower when I can and try to move the snow out of the sidewalk when it snows (despite my right shoulder and balance issues). So outside appearances can be deceiving.

We are on the brink, and that is the reality (there is no other way to put it), and our reality is about to change if I don't find a job in less than 2 weeks.... as Congress has not extended Unemployment (and it runs out on 12/28).

We are still working with many agencies (some of who's help still interferes with other's help).

1. We pursued getting help from Illinois Hardest Hit in October of 2012 (from the Federal Tarp program) as soon as I applied for unemployment. We were successful in getting approved in late December so almost 80% of our mortgage is being taken care of by this program (essentially, a 10 yr. "forgivable loan" which based on our home's value... unfortunately, one we will never be able to repay as it is doubtful our house will ever be worth $250k within 10 years... hence the forgivable part as repayment reduces from 100% to 0% from Year 5 to Year 10). Our problem of being upside down by over $120,000.00 (our principle cannot be reduced as ours is a VA loan) remains as we are paying double on a monthly basis what the house is actually worth.... while multiple properties around us are foreclosing and reselling for $75k to $120k, further reducing the worth of our home. A Credit Counseling service in Woodstock is managing the IHH program and after their going over our finances, agreed we had already done everything we could to reduce our spend. Regarding owning our home, it is a hole we cannot escape unless we were to file bankruptcy. If this program wasn't available, we'd already be in bankruptcy and would have already lost the house (which after discussing with many parties, is not an option to us on a moral / religious basis). I have been unsuccessful (during this process) in finding a job that has a minimal revenue/benefit level to maintain payments for our home once off this program once off unemployment (if our principle was reduced like it is being done for Freddie Mac/Fannie Mae customers...... I could afford to work for less reflecting the present housing and job market). In this case, VA benefits work against us regarding any mortgage relief that many who overspent for their homes presently receive. Given I am in Information Technology infrastructure front line support, those jobs are greatly reduced  and much is now outsourced... or we are being replaced by immigrants who work for less.
2. We have worked on reducing our monthly spend ever since Penny came back from the hospital February 2012 (so we have done the following over the past 22 months):
  • we cancelled AT&T wireless in February 2013, sold our iphones for a profit, and used the proceeds to get HTC Evo Android phones at no cost using Virgin Mobile/Sprint prepay (we are on the $45 a month plan) and are saving over $100 a month as a result.
    • 2 weeks ago, we then switched to Samsung Galaxy3 phones for $179 each (we are on the $18.99 plan). We sold 1 of the HTC's on ebay for $140 and the other 2 are presently for sale on ebay as well for $140 (meaning that the first month's savings pays for the phone. After that, Penny - Travis - and I will have a $57 monthly combined cell bill (we will be saving over $150 per month and still be on the latest  LTE cell technology). To put it another way, Obama flip feature phones (safelink) cost more monthly than what we presently use. Having these smartphones keep us in contact with each other and with others using voice/text/email (and are our primary phones).
  • we cancelled Comcast Cable in October of 2012
    • we use Netflix @ $7.95 a month and I connected an over the air antenna for our TV viewing back then. Our savings is over $80 a month from Comcast Digital.
    • we use NetTalk voip ($29.95 yearly) for our home phone. Savings: $23 a month. So our monthly home phone bill is slightly over $2 a month... and it works just as good as a AT&T basic phone solution that costs over $35 a month.
    • we use AT&T basic dsl @ $15 a month for broadband at home (which NetTalk and Netflix uses, we just don't use the HD option on Netflix... just the standard version)
    • We purchased a FreedomPop 4G broadband card October of 2012 ($50.00) which is reimbursable after a year so the device will essentially be free. The monthly fee is "free" for up to 500 mb of data (this used to cost me $65 a month with Sprint). Amazingly, it uses the same wi-max clearwire network as Sprint and is more than adequate when I am on the road (for email and remote access purposes). Savings: $65 a month/
  • we switched our car insurance provider and switched to USAA (and use a higher deductible) for $130 a month  premium (saving $85 a month).
  • we switched our home insurance provider to USAA also (and saved $1,200.00 a year).
  • We switched our electric/gas provider to Ambit Energy (saving up to 40% on our energy bills).
  • We got multiple LED bulbs on clearance at Menards ($3 each) last December and installed them in our high use light outlets (especially in the china/curio cabinets which usually don't have LED options, I used socket adapters to put LED's for their use). Our electricity use is down by 1/3 now (we have CFL bulbs everywhere else in the house in every outlet including the garage and spotlights).
  • When we shop, we go to thrift stores (Goodwill and Private thrift stores) regarding clothes and basic essentials (and minimally at that... for example, my wife purchased on a $1.23 per clothing item sale, 6 complete outfits for less than $20 with some clothes still with new tags on them).
  • I do all of the maintenance to the house and the cars (and when I need parts, I use a 40% off web coupon at Advance Auto to get parts inexpensively).
  • Penny makes laundry detergent and dishwasher detergent from scratch now (using common household materials that are pennies on the dollar).
  • It has been emphasized to Penny and I by friends, family, and governmental agencies that we should make use of the local Food Pantry in managing our costs if we are eligible (and to stifle our ego), which we have finally done.
  • We had major storms blow through the town 3 times this year. Our siding and roof took a hit and USAA replaced the siding and roof at a cost of over $25,000.00. Our cost was $1,000.00, but in the end..... our house is better insulated, the roof no longer leaks, and our utilities should reduce as a result.

3. We had to make a choice October of 2012 in order to "afford" Cobra for Penny while she is getting care for her cancer treatment (so my son got Private Medical Insurance on his own at minimal cost, and I opted out of Cobra so we could afford the expensive Cobra premium to ensure Penny was taken care of). So I was without medical insurance for the first time in my life (the first time in 50 years) from October of 2012 until August of 2013. We applied for "Medicaid" through the Illinois DHS office for everyone in the family, but we make too much money in our household and failed their "means test" (my unemployment benefits, my disabled wife's small disability payment, and my disabled son's part time earnings.... which we as his parents don't touch due to his disability situation). I was denied Medicaid due to "income". Penny was denied for medical reasons (they claim she is not disabled..... despite she has permanent limitations in her left arm due to a gunshot wound 12 years ago, knees that need replacement, herniated disc's in her lower back, and she is being treated for Bladder Cancer (having multiple tumors removed over the past 18 months). Travis was denied as he was also not considered disabled, this despite being given complete records of his last mental/physical functionality testing done at an accredited facility. It would seem, that we aren't "destitute enough" or medically disabled enough.

  • However, I was finally approved for "Illinois Vetcare" (which is essentially Medicaid) in August of 2013.  =)
  • I was then approved for "VA healthcare" via the Veterans Administration in September of 2013 (on a hardship basis).  =)

4. Our being a proactive Type A couple, we put aside our egos again and at the recommendation of friends... we started a fundraiser via in October to see if we could find help paying for some of the medical costs (and thankfully, we received $2,300.00 over a month time period which got us through November). We also unexpectantly received some needed help via our wonderful church family (Fox Valley Church) which got us through December.
  • We then sold our 22 yr old Class A RV in January (our worst case scenario solution if we underwent foreclosure was this old RV, and when we were approved for ILL Hardest Hit, it became expendable). This helped us for the next 3 months regarding our bills (monthly and medical).
  • We then started another fundraiser via in the middle of March, 2013 when Penny had another Cystoscopy and 3 more tumors were found (it was evident that the BCG treatment didn't work and that we'd be fighting this long term). With the expert assistance of the former CEO of the company I previously worked for, we raised $10,000.00 by March 31 (in 2 weeks) which was to help  handle all of the costs we were facing as I was still unemployed and we are facing many future costs with the treatment plan becoming more complicated .. and his foundation amazingly matched those funds separately. These gifts came from 83 supporters, an amazing group of people we will be forever grateful to.
  • In October of 2013, we held a fundraiser by auctioning off a Corvette that I had traded up to (I traded the 2003 Chrysler Sebring for a 2006 Chevy Uplander which then was traded for a 1984 Chevy Corvette). We raised $1,900.00, and then the winners incredibly gave the car back to us to sell in order to raise more money. We then sold it on ebay less than a week later for $4,000.00. This is what we are surviving on now.
5. We tried offloading our 2011 Mitsubishi that we had purchased before Penny became ill with Cancer (we owe $33k and it is worth $22k) in order to reduce our monthly spend. We were  not successful (and nobody we know would take over the payments on this while newer Mitsubishi's can be had for less). Note to self... NEVER buy a new vehicle on credit ever again. We were paying $644 a month and we turned in the vehicle after being behind by 2 months of payments in August of 2013. After it was auctioned, we have been told by Mitsubishi Credit that we owe them almost $13,000 (& we have been offered to settle for half of that, unfortunately... we have no means to meet them halfway). The depreciation of the Outlander is incredible considering it was only 2 1/2 years old.

6. We are finding negotiating the minefield that are governmental plus private benefits is not an easy endeavor (it is almost a full time job keeping track of everything) plus one is walking a fine line making sure one benefit doesn't nullify another one more important. This is especially true when the State Government AND Federal Government are dealing with funding issues... and the Politicians in Washington are playing politics with a program called sequester (
which is trying to reduce spending in Washington). I am dealing with:
  • Illinois DES (unemployment) ~ Approved and on Tier 4 of the Federal funded portion (ends on 12/28/2013). Congress has not extended the extended benefits for 2014.
    • IDES has a Vet coordinator who works with me regarding working on finding a job
    • I have to apply at least to 4 jobs a week.
  • Illinois DHS (food program and medical program)
    • Steinar ~ denied based on income
    • Penny ~ denied based on medical
    • Travis ~ denied based on medical
  • Illinois Hardest Hit (Tarp) ~ Approved ($35k approved over a 18 mo. time period - ends on June, 2014)
  • Illinois Veterans Services
    • Vetcare
      • Denied 3 times due to their claim of non receipt of documentation (but finally approved after I located their email address' and send pdf's to their email address PLUS overnighting the same information to their street address).
      • "Approved" in August of 2013.
    • VRAP services
      • "Approved", but I found out I can't use it because if I do, my unemployment will end (an example of the one benefit cancelling out another - the law of governmental unintended consequences).
      • I will have 4 months left as of January 2014 (I am looking at what my options are since Unemployment is ending 12/28/2013 and I will have no income after that).
  • Lake~McHenry County "Veterans Family Services"
    • TLS Veterans-Homeless Veterans Reintegration Program
      • Approved - Food services
      • Credit Counseling ~ Approved - Review of our budget which was agreed upon as being pro-active
  • Social Security
    • My wife's disability case ~ denied at ALJ level (Administrative Law Judge indicated no evidence of disability). We have it being reviewed by the Social Security Administration under "Res Judicata" rules (I have fought for over a year for them to do so by providing detailed medical records, etc. that they didn't have in 2008 when they made their ALJ decision). Allsup and Associates is FINALLY getting involved (through Penny's Long Term Disability insurance carrier (The Standard).
    • My son's disability case ~ denied as he makes too much money part time at Walmart (over $600 a month)
    • My disability case - denied. Allsup and Associates has taken on my case as well and will be filing the appeal with Social Security.
  • Standard Insurance
    • My wife's disability insurance ~ approved despite Social Security's denial 3 times (and continues until Age 65.
  • Veterans Administration
    • Veterans Healthcare
      • denied based on previous year's salary until September of 2013.
      • Approved September of 2013 based on "hardship". My medical care has been ongoing since then.
    • VA Medical Disability Rating ~ mired in a claims backlog of up to 2 years
  • COBRA ~ My wife's medical care ~ approved (Blue Cross / Blue Shield of North Carolina). Ends April of 2014.
    • Sherman Hospital (2/2012-04/2013)
      • General Physician
      • Urologist
      • Pathology
    • Cancer Centers of America (5/2013-present)
      • Oncologist
      • Urologist
      • Pulmonary
      • Nutritionist
      • Pathology
      • Pastoral
Our difficulties in working with various agencies have been:

1. The Illinois Veterans Department:

  • I went to the Woodstock, IL. VSO and he took my information, a copy of important paperwork such as my DD214 and was supposed to submit my Application for vetcare. 2 weeks after I met with him, he called me by phone back into his office. I came by and was asked why I was there. I told him I was called by him the day before... so he tried looking up my file and could not find it. he told me that my file was missing / displaced and he would have to get back to me. Despite phone calls and emails, he never responded to me again. When I went to see him, his office was always closed (and the website didn't give any consistent info as to when he would be onsite and the National Guard Armory). After multiple emails, I was referred to the Elgin VSO in May of 2013. He is now spearheading all of my Veterans efforts from the State of Illinois side. I am six months into my 2 year wait for a review of my Disability Rating claim he helped me submit (the backlog is two years...... incredible).
  • Illinois Vetcare - they apparently have 2 employees covering all Illinois Veteran Requests. Even though I supplied all documents needed with the application that was sent to the State of Illinois (Vetcare) Springfield, IL. Office, they requested on 4/18 (which wasn't mailed until 4/22 as per the postmark) that I respond to them by sending them a copy of my DD214 and Penny's last monthly disability statement and it had to be in their office by 4/30... to a PO Box where one cannot send documents overnight to or get a signature from. I faxed it to them to the fax number provided before 4/30 and the Elgin VSO forwarded the scanned pdf application off to the Vetcare office by email via his direct report. I received a letter 3 weeks later telling me my application was denied as I had not gotten the documents needed to them by 4/30. I then tried multiple times to call their office in Springfield and left a voice mail. 2 days ago, I managed to get ahold of a live body and she indicated that I needed to resend the application (even though the letter I received stated I could ask for a hearing which is what I was trying to do. Getting her full name, I guessed her email account at the State of Illinois and sent the necessary PDF's. She left me a voice mail June 5th saying I still needed to supply them with a new application form to accept the documents (that were sent according to her not via an acceptable method of delivery). I faxed everything and confirmed receipt with her. I was then approved in late July / Early August of 2013. 
2. Veterans Administration:
  • After being denied Healthcare Benefits in October due to how much I earned in the previous year, I re-applied in January of 2013 (a hardship request). I was finally approved in August of 2013 (via that hardship request).
  • A claim has been filed for Vet Disability regarding a disability rating based on my deteriorating medical condition (with many of their causes starting during my service covering almost 7 years in the Marine Corps).
3. Illinois DHS:
Regarding medicaid for my wife and my stepson (who are both disabled and have been stated as such by doctors and private companies), they have been consistently denied Medicaid. This should be changing when my unemployment ends on 12/28/2013 (and when Obamacare kicks in on 01/01/2014).

4. SSA (Social Security Administration):
Regarding both my wife's and stepson's Disability application process:

  • Penny's Social Security Disability case depends on their reviewing her case from 2008 (via "Res Judicata"). They have finished receiving all of the additional medical information and are about to send the file to DHS Springfield, IL. office who will take up to 180 days for a decision to either re-open her case or keep it closed (preventing her from receiving benefits she paid into for her entire adult life). Allsup and Associates has FINALLY took on the case and is providing a "representative" to handle Penny's case with Social Security.
  • Travis' Disability case is still pending (for 3 months now), he saw an IME (Independent Medical Examiner) hired by Social Security 2 days ago. Given they usually are picked for their consistent reports which are generalizations and are given greater weight than one's own doctors (despite the medical evidence provided), we expect his case to be denied this first go-around as 90% of all first applications submitted to SSA are usually denied.
  • My Disability case was denied on 11/20/2013 ( after I was sent to the same IME on 11/14 that Travis was sent to 2 days ago). Allsup and Associates has also taken on my case and is providing a "representative" to handle my case with Social Security
5. The ACA / Obamacare website (
  • .This has been a truly painful experience. It took almost 2 months to get both authenticated AND to get the application processed through the website (this blog shows many posts since 10/01/2013 showing the many hours spent trying to use the website). We have been told we are eligible for Medicaid (but have received no communication from Illinois DHS that we are in fact being processed and are eligible).
  • I went to Illinois DHS today with print outs of the completed ACA application, the Illinois "A.B.E." website application for Medicaid, and an email I received from Illinois DHS which acknowledged they were having issues with many applications sent through the ACA website. They found our original request from back in July of 2013 (which is still awaiting a decision), so they are giving us a temporary Medicaid card (by mail, they are unable to print it in their office) that we can give to the Cancer treatment Center by 01/01/2014.
Our successes?:

1. Unemployment:
Given this is a benefit that is in IDES' best interest to process, it went through within 2 weeks upon application. I have received benefits that will be ending on 12/28/2013.

2. Illinois Hardest Hit:
We were surprised that this was processed with an approval and within 60 days of application (we suspect the fact a private agency was handling the paperwork/process is why this actually got done so quickly and having a positive outcome).

3. Cobra / Sherman Hospital and Cancer Centers of America:
Private companies ~ as long as they are paid.... we've had no problems with service.

4. VRAP program:
This is a good/bad success as I am unable to use the benefit. I was approved in march of 2013, but then I found out that if I started going to any training covered by VRAP, that my unemployment would end (thus putting us in a bad spot financially). Ouch. So even though the Unemployment ends on 12/28, that only gives me 4 months of VRAP benefits and I am still trying to work with my State of Illinois Vet VSO to work through my options.


In the interim, I am applying for jobs where I can (plus hunting for jobs that are few and far between). I am going to IDES workshops, going to Marine for Life employer luncheons, etc. I have yet to land an interview with any company (I suspect my age, weight issue, lack of college education, and lack of up to date certifications maybe playing a role in that result).

It literally is a full time job just being unemployed......... but this too shall pass and things will be better as God has provided for us in so many ways that we cannot even count (we are truly blessed)... as I am able to be with my wife in her time of need while undergoing this extensive cancer treatment.

~ Steinar 12/19/2013