I am sending this letter to our congressional representative and senators today.
Dear Representative Stark, Senator Boxer and Senator Feinstein,
In December, 2010, our daughter Scarlett Grace was diagnosed with an aggressive malignant congenital brain tumor. The tumor was the size of my fist and had grown in place of her left hemisphere; half her brain was cancer. We were given very little hope of her survival, and were sent home for her first Christmas waiting for hospice. The next week, a second surgical opinion gave us hope and we began the long journey through more than 24 hours of surgery, battling seizures, hydrocephalus, infections, further surgery, frequent MRIs and weekly blood draws. Scarlett is currently in her 9th month of chemotherapy, with at least 4 months ahead. She will need reconstructive surgery. She has a feeding tube to give nutrition despite daily nausea. She attends at least five appointments each week, including physical and occupational therapy. She wears hearing aids to cope with chemotherapy-caused hearing loss. Last month, Scarlett turned one year old. She has yet to roll over, crawl, or say any words, but she is growing and thriving every day. She has piercing blue eyes, eight teeth, and a beautiful smile that lights up any room.
Since her birth, my husband and I have struggled to create a financially stable situation for our family. We both graduated from UC Davis with Bachelor’s degrees and hefty student loans. He has struggled to find work for nearly two years and currently works at a coffee shop, where we maintain some health insurance benefits. I have a teaching credential and Master’s Degree in Education, and have been determined to teach despite being laid off twice in 3 years. After months of disability after her birth, I relinquished my job to continue to take Scarlett to appointments and therapy. As employment shifted, so did insurance, and we were forced to apply for Medi-Cal to cover her ever-growing costs. This has been a relief for medical expenses, but does not cover the costs associated with feeding her, driving to and from all appointments (well over 100 miles per week), clothing, and diapers. While we understand and accept that these are our responsibility, we are simply unable to afford it all on my husband’s small salary. While we both continue to look for work that will allow us to also care for our daughter, we have been forced to seek additional financial support.
We are now receiving WIC and have applied for Food Stamps, but have been repeatedly denied for having too high an income. We have deferred all student loans, for which we receive no consideration when applying for social services. We have also applied for Supplemental Security Income (SSI) for Scarlett.
When I originally applied for SSI in June, our total accumulated assets were just over the cut-off of $5000. In July, she was denied again, this time with less than $100 over the cut-off (which includes our car and savings). It took more than 4 months to hear that she was denied, when I made repeated phone calls to both the national and local Social Security office lines, and was finally told we had been denied months ago. When I broke down in tears on the phone in frustration, the worker told me that had to make sure our assets were below the limit on the first of the month. She said any other day didn’t matter, just make sure we have less in the bank on the first.
So finally, on November 1, I applied yet again for SSI for Scarlett. Our balance is well below the required level. However, I am now being told that there is a 6-8 month wait for SSI to be processed, at which time we may still be denied.
We are honest, hard-working, tax-paying citizens. We have college educations and have worked steadily since we were teenagers. Having our child diagnosed with brain cancer was traumatizing, but we are finding that the aftermath of her diagnosis and ongoing treatment is even more difficult. On top of the daily worry that her cancer will return, we are worried about how we will pay our most basic bills. We will soon be forced to move out of our home and begin living with family. We have repeatedly tried to get access to the basic public services for which we, our families and friends have paid into for our entire adult working lives, and yet we are consistently hassled, insulted, and argued with by workers at these services. I am enraged at the roadblocks that have been thrust upon us, and even more so at the thought of how difficult this would be if we were NOT educated, English-speaking and supported by family.
Childhood cancer affects more than 12,000 US children each year. 12,000 families suffer through the heart-breaking lifestyle changes that inevitably accompany this diagnosis. The treatments required have life-long effects that do not end with chemo. No family should be forced to wait more than 6 months for help. No family should have to repeatedly be asked the invasive and insensitive questions that I have been asked. Having a child with cancer is not easy, nor is it something I have any control over. I can, however, control how I show my daughter that I fought for her best interests, and how I maintained my integrity while doing so.
I implore you to help us and families like us to efficiently secure the services to which we are entitled, and on which we depend for basic survival. I have included your claim assistance form in case there is anything you might be able to do to help us with Scarlett’s case.
Thank you for the work you do and for your time,
*sigh* I typed out a whole rant on your behalf just now and decided I'd be preaching to the choir. So instead I will once again just offer some virtual hugs and blessings.
You guys are amazing, and if anything should ever happen in my family I can only hope that I'd meet it head on like you have.
Well said Brandi! Scarlett has such a great mama! Give her a hug from me!
I hope you can get the help you need one day! I'm pretty sure since we've been denied for our daughter with autism that unless you have 10 kids out of wedlock and do drugs you won't get help. Being responsible bites you in the ass.
SSI for children is a JOKE. It's utterly ridiculous. While I am SO grateful that we were approved initially, it has been a battle ever since. I provide them our pay stubs on a regular basis (sometimes the same days we get them) after 7 SEVEN months of them not entering our paystubs and multiple phone calls, an email finally got my point across. I again had to make copies of all of our paystubs and take them in. They owed her over $2000. Money that would have come in handy all summer when we were broke.
She also lost her medicaid because of it right before her spinal surgery.
It's such a hassle and I think they do it on purpose!
You might have better luck getting assistance if you take your story to the press... I'd start emailing and writing to every local and national news agency you can think of. If you want help, just ask us. We'll all start writing to whomever you ask us to.
@April - I may resort to that, but we're trying to go through the "appropriate" channels. Each of our COngress and Senate Reps have a Social Security help page that asks we send in their personal info release form so that they (and their staff) can look into our case. If I don't hear back from them in a reasonable amount of time...well, they'll make a better press target than the SSI office. Plus, I'd love to see my issues taken seriously by those in a place to change it, so that the next parent in this situation will not have to suffer through it the way we have.
i second that if you want us to start contacting folks, we will! i know that the services you're seeking are federal (thus your contact with federal electeds), but i wonder if any local electeds could help you cut through any red tape or place additional pressure on these agencies?
Good for you! I am so glad you are standing up for your family! This is something i feel strongly about. Scarlett should get the help she needs. I really hope this works and if not yes go to the press! The public will just love how a child with cancer is being denied for services when she so clearing needs them!
WOw. I applaud you guys.
It is rediculous how hard working Americans suffer and cannot get support while dead beats who abuse durgs and alcohol have no problem getting help from the state.
I got a small raise and it bumped me out of the state childcare brackett which forced me to switch daycares. I work my ass off to spport my family but it doesn't matter.
That is a well written, extremely well thought out letter!
Love this (not what you have been going through- but the letter and the actions you are taking). MY brother has a chronic severe mental illness and is disabled for life- our family went through significant struggles similar to yours to secure him SSI and Medi-cal benefits. I hope one day this changes....
I'm gonna send this link to Ellen, maybe she can help
Great letter! Good job. I hope it yields some results.
Chista, oct. 2010 mom
Well put! You have such a way w/words...that's the teacher in you. :) GOOD LUCK! As always, we are praying in Iowa...
I cannot imagine the frustration that your family feels. You seem very strong, to the point, while "yes" still keeping your integrity. You continue to fight for that baby, God will be on your side. I will keep you in my prayers. Please remember, God will do all things.
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