Wednesday, May 24, 2017

What the Government Safety Net Really Means

After the roll-out of the President's budget plan this week, I wanted to explain how the government "safety-net" programs have helped my family in the past years. Although we all know someone who receives help from these programs, we don't often discuss it. I think it's time that changed. People need to fully understand these programs, how they help, and what the proposed cuts will mean. 

Our family has received help from Medicare, Medicaid, the National School Lunch Program, and Social Security Disability. It's probably easiest to break this down by program, but first, a little summary of our story. 

My late husband and I did all the things that upstanding, tax-paying Americans are supposed to do (reminder that he wasn't a citizen, but he had hoped to become one)... we graduated college, worked our way into good paying, professional jobs, and made our payments on time. By the time we were 32, we were home-owners and parents of two. We had a life insurance plan, and a bit of retirement savings through work, but we did not have much put away for emergencies. I would guess that makes us pretty typical too, most families with young children are just getting by, not sitting on a big nest egg. 

That same year (2011), my husband was diagnosed with Amyotrophic Lateral Sclerosis (ALS), which comes with a expected life span of 2-5 years. He had to leave his job in 2012, and I had to leave mine in 2013. He died in 2015. I have remained a stay-at-home mom since his death, and our girls have just finished kindergarten and third grade. I hope to return to full-time work in the next months. 

In short, we were not prepared for the impact of a terminal illness (not that anyone is) and we have only made it through the past years because of government safety net programs. 

The day after Tony stopped work, we applied for Medicare. He was eligible because ALS made him unable to work. There is a waiting period for disability applications, and thankfully his short-term disability insurance from work covered him through that six month period. Medicare paid 80% of Tony's healthcare costs for the rest of his life. When he began Hospice care in February 2014, Medicare paid for that as well. We had visits from Hospice aides and nurses 4 times a week, and they made it possible for him to remain at home. 
In summary: there is NO WAY we could have paid for Tony's medical care without Medicare, even if I had remained at work. He had hospital visits, surgeries, clinic appointments, and lots of very expensive drugs.
Thankfully, the President's proposed budget does not cut Medicare. 

Tony's insurance was covered by Medicare, but the girls and I were not. With no income from work, I applied for Medicaid for the three of us. I did not qualify, but the girls did under a program called the Children's Health Insurance Program, which covers kids in low income homes. That program still covers them today, and means I do not have to pay for their coverage and our co-pays are low. I had to purchase insurance individually, and that was before the Affordable Care Act (ACA or Obamacare) was passed. I had a prescription for Xanax at the time because I had trouble sleeping. I was a mother of two young children with a terminally ill husband, I had a lot of stress. That was a pre-existing condition though, and my insurance was therefore more expensive. After passage of the ACA, my insurance payments were lower, but they were still between $250-$300 a month. This is another part of our lives that will be impacted by the President's agenda, but that change remains to be seen. 
In summary: healthcare for my two daughters (now 5 and 9) has been covered by a government safety net for the past 5 years. The President's budget includes cuts of $616 billion over the next decade to these programs. 

National School Lunch Program
While Tony was alive, our oldest qualified for a reduced price school lunch. In our area, most children qualify for this benefit, although I never expected my kids would. Although our income now is only through Social Security Disability, they no longer qualify. 
In summary: this helped us by lowering food costs for her during school.
The President's budge proposes a 21% cut to the budget of the Department of Agriculture, which funds this program. His budget director also said "There's no demonstrable evidence they're actually helping results, helping kids do better at school." I guess it depends on what study you look at, but I think it's incredibly hard to argue against helping kids who don't get enough to eat at home. 

Social Security Disability
Again, the day after Tony stopped work, we applied for this program. There is a waiting period of up to several years for most disability claims, but ALS put Tony on a fast track of 5-6 months. He began receiving payments in 2013, and our girls received them as well as minors of a disabled parent. Tony had some long term disability insurance through work, but Social Security (SSI) was our main source of income when I stopped work. Thankfully, we had a lot of financial help from friends, because it wouldn't have been enough. The girls will continue to receive those payments until they turn 18, and after Tony died, I began to receive survivor's benefits as well. Since I left work to care for them, I am eligible for this payment until Louise turns 16. If I make more than $15,000 a year from another source, I become ineligible. This year, SSI pays us each $1045 a month. This extra time off of work has been invaluable. It has helped me to manage my grief and help my children through theirs, and that has been priceless. 
In summary: if we had not had this safety net, we would have had to sell our house and I would have had to remain at work. It would not have been possible for me to make enough to cover our expenses, and Tony would not have been able to remain at home. We would probably have ended up in subsidized government housing, and on food stamps, with Tony dying in a nursing home. We would have probably gone bankrupt, and possibly bankrupted our families as well.
The President's budget proposal plans $70 billion of cuts to Social Security Disability programs, although I am not sure if the cuts would effect the survivor benefits we receive. Regardless, I hope to return to work soon and therefore become ineligible for my benefit. 

I could easily describe the events of the last few years with the word "catastrophic." We did all the things we were supposed to, but if we had not had help from these government safety-net programs, it is hard to even imagine how much more catastrophic it would have been. I am beyond grateful that when we were hit with terminal illness, our government took care of us. I would never want another family to lose the support we had. While no program is perfect, and there are people who abuse every program, the vast majority are just people who have no other options. These programs help people through the darkest parts of their lives. Before deciding whether to support the President's budget proposal, reach out to the people you know who benefit from these programs so you understand what the cost will be.

Side note: I have wanted to write about ALS Awareness Month, but I could never find my topic. Last night I concluded that I am still just too mad. I'd like to go beat the shit out of ALS, but I'd also like to curl up in bed and never emerge. I hope I can do more in the future, and maybe next year I'll be able to speak out more. Until then, this more than enough to get my fingers typing away. 

Friday, May 5, 2017

First Pitch

I got a call yesterday that I could never have imagined... Coach Hadra invited me to throw out the first pitch at tonight's VMI baseball game. The Southern Conference is supporting Pete Frates' Strike Out ALS in all their games this weekend; I even got a mention in the press release.

May is ALS Awareness month, and I have been trying to figure out what to say. It deserves more than one post, so tonight it'll be the dichotomy that ALS brought into my life.

I know this is a theme through so many of my posts and Tony's. ALS gave me some of the worst moments in my life, and also some of the best. I continue to drone on about it because it has been the most unexpected part. And it's also where the greatest lesson lies.

The best moments in life often come out of nowhere. (Of course, so do the worst moments.) As I said, I never imagined in a million years I'd ever get to throw the first pitch at a baseball game. I jumped at the opportunity. It was beautiful evening at the stadium, and Coach Hadra and the team gave the girls and me a wonderful welcome. We hadn't met before, but he spent one year at VMI with Tony and we had a good chat during warm-ups. He even coached me through a few practice pitches.

Take us out to the ballgame
A little while later, I was headed out to the mound (technically the area right in front of the mound) and the girls were in the dugout cheering me on. I said a little thank you to Tony on the way, because I certainly wouldn't have been there without him. And then...

I'm pretty chuffed with myself. 

We stayed through the first three innings, saw three VMI home runs, and left with the Keydets comfortably in the lead. We drove home telling stories and cranking tunes with the wind in our hair. It was a golden evening. 

There is a much more famous widow telling people these days to "lean in to the suck." She's right. The "suck" sucks... but it can also lead you to moments bathed in pure joy. Embrace them both because it's all you've got. 

A huge thanks to Coach Hadra, Corey Bachman, the VMI Baseball players (I relished those high fives), and my small cheering section. It's a night I'll never forget!

Sunday, January 29, 2017


A wise man wrote that legacy is "planting seeds in a garden you never get to see."

Last night I spoke briefly at the VMI Men's Soccer senior banquet. In preparation for that, I thought back on what I had said at the last banquet, in October 2015. (Someone reminded me that this was actually the third banquet in a row I have spoken... how did that happen?) In 2015, I thanked the families for all their support and told them I would be working on some form of legacy for Tony at VMI. So, I was quite chuffed when I realized that task was complete. Not only is there a scholarship in Tony's name, but the new VMI coach (who never met Tony) named his coach's award after Tony. He promised that award would be there as long as he is, and hopefully beyond.

When I say that task is complete, I don't mean I am finished. But I took a moment to feel proud of myself and think about what I have accomplished. My annoying-ness is starting to pay off, and since it's one of my most prominent traits, I'll have to see what else I can accomplish with it!

Thursday, January 19, 2017

Widow-lescence: Phase two

It was Sept 2015 when I first wrote about "widow-lescence," the process of coming back into the world after losing Tony. That was six months after he died.

A year and a half later, it's time for an update.

The first phase was piecing together the remaining parts of my life. I lost my best friend, and my biggest and most time consuming (by which I mean 24 hr) job, caring for him. That adjustment took awhile. Now, I feel much more settled in myself. I am taking better care of myself , I have a part-time job, and I even have fun new boots. Of course, that comes and goes, but I have a feeling that will last for the rest of my life, so I might as well get used to it.

So I'm ready for phase two, and I still see parallels with adolescence. I've figured out who I am (more or less), now I'm more ready for my life to begin (again). I remember this from before... where am I going to go to college? What will I major in? What kind of job will I have? Where will I live? When will I meet "the one"?

Thankfully, I don't have to go through all of that again! But it doesn't seem like teaching is in my immediate future... so what new job can I spin my (considerable, but ill defined) skills into? Should I break out of the small town I've lived in my whole life to find a fresh start? (How easy is it to move to Scotland?) As for "the (second) one"... this is driven by extreme loneliness, for sure. I'm ready for him to show up at my door, but not to try to find him through the morass of dating. Plus I have a ton of baggage, and he'd have super big shoes to fill. But I think it's only natural... I had incredible love in my life, why wouldn't I hope I could find and feel that again?

At this point, it's all just the daydreams of a 38 year old widow-lescent who uses parentheses too much.

Thursday, January 5, 2017

Extended Family

They say you don't get to pick your family. I suppose that's literally true, but it has not been my experience.

We are lucky enough to have a big extended family... the kind of family we have picked, or more accurately... who have picked us. They are some incredible people and I am so grateful for them.

We took a little trip in the week between Christmas and New Year's to visit a few families we know through VMI soccer. We had a great time, and everyone was incredibly welcoming. These aren't people we see or talk to that often, but that didn't seem to matter at all. At every stop of the trip, we couldn't wait to get there, and then were reluctant to leave.

More than once recently, I have had a period of feeling alone and lonely. Just as I have been sliding into that feeling, my extended family has magically appeared... so randomly that it hardly seems possible. I was at a gas station two hours away and feeling dreadful, and then three of my favorite people showed up. It was odd, but the timing was incredibly fortunate. The universe reached out to prop me up.

Before ALS entered our lives, Tony and I were mainly home bodies. We didn't go out much because we were happiest in the little world we had made together. But as Maria von Trapp said, "when God closes a door, somewhere he opens a window." Our little world got a lot smaller when Tony left, but our extended family had grown so much.

My point is here somewhere...

When we got home from our trip last week, I was feeling very down. One of those unexplained mood swings that I just couldn't figure out. Two days later, I got an email from one of the families we had just visited. They wrote, "You make Coach Tony so proud of how you are raising such beautiful, loving and well adjusted young ladies!" Again, the timing was impeccable and the words meant the world. 

To our extended family: thank you so much for picking us, thanks for always being so welcoming, and thanks for propping me up when I need it most. 

To our flesh and blood family: I hope you know that the only way I could explain how important you are is with a large amount of alcohol, and an equally large amount of tissues. 

I love you all. Thank you.