...SIGH... Big sigh there. My caretaker just called and gave us her two weeks notice. To say I'm frustrated is a massive understatement. The last couple of days have been so rough with her. We really appreciate all she's done for us the last 10 months, but she was unwilling to accept the idea that we don't want to pay her for the days she doesn't work. Are we being unreasonable? I think not. AAAAHHHHHHHHHHHHHHHH!!!
Anyway--right before she called I was getting ready to post this anyway.
Aaron and I have been talking and praying about our future concerning children, grad school for Aaron, how are we going to keep paying for caretakers out of our own funds. We estimate that we will be out of money in about a year from our fund. We've applied for the available state funding (Medi-Cal) that would pay for home health services. We were denied because we're married and Aaron's salary exceeds the amount you're allowed. I have appealed this and am on a waiting list (for the last 10 MONTHS) for a special waiver program that will waive Aaron's million dollar (I'm kidding) salary. Starting in January we are finally eligible for Medicare; but I found out today that I'm basically NOT DISABLED ENOUGH for them to cover home health care. So I guess it could be worse--at least Medicare thinks it should be. The good thing with Medicare is that they will cover physical and occupational therapy. This is great news. I haven't had PT/OT since I left Craig 2 years ago b/c our insurance benefit ran out. I've considered getting a job, but if I did that most of the "benefits"-or what I like to call "perks to being paralyzed"- would be eliminated. For example, my school loans do not have to be paid back since I'm permanently physically disabled. But if I start working, it compromises that benefit.
So Aaron and I have decided we have 3 options: 1. Become really poor so we get better benefits. 2. Become really rich so we wouldn't need to be dependent on the government. 3. Become famous so we could live off the royalties of published books or motivational speeches.
Please pardon my sarcasm...it's just been a really frustrating few days.
There is a 4th option that we've decided is the most feasible. Fundraising. I have no idea how to go about doing that. I've done lots of fundraising for youth groups, but this isn't exactly like a car-wash or bake sale type of a thing.
So my question for all of you is: Does anyone have any suggestions how to go about doing this? Does anyone know of any legal loopholes in the healthcare system?
We are feeling kind of desperate. We want a family. Aaron has to go to grad school to make it into the next income level. He's maxed out on the bachelor's degree pay scale already. These things won't happen unless we figure this out.
I don't know who still checks our website here, but this has been our largest web of communication in the last couple of years.
We love you all and are so grateful for each of you.
One more thing...Please be in prayer for us. We absolutely trust God to supply and provide for us. He has so far.
Thanks for reading my rambling thoughts...We welcome and NEED your thoughts and comments. If they are personal you may email us at weloveyoukari@msn.com.
Blessings to all of you-
Kari
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8 comments:
Hey Kari and Aaron, Wow you guys you know i am going to check into fundraising ideas and see what i acn figure out= kari you know i love you and aaron both so any help you guys need seriously let me know I would love to help out ok? Love you,Julie
I, personally, don't think option #3 was all that far-fetched. I'm a fan of your blog enteries, but you've got a story here, sister. I'll buy your book.
Ugh, no fun to have your help quit - especially this time of year. I have no idea what the right thing is here, but I know that (just like you said) God will provide. However, I think the fundraising is a good idea. Is there still a way to donate set up at weloveyoukari.org ? I wonder if there is something you could sell - like those bracelets ? I don't know, but I'm going to ponder and pray.
Love you so much!!!
heather
I'm with ttime-
I'd buy a book or two written by either one of you! I say GO FOR IT!
And I'll also percolate fundraising in my brain and let you know if I come up with anything.
As always, you two are in our thoughts and prayers.
Love you tons and tons,
KT
So...you have PayPal, right? I mean, so that there's something your friends can do to help right now if they wish to. Unless you're not comfortable with person-to-person donation. You're both extraordinary people and bless, I'm guessing, more lives around you than the average human couple. I believe in my heart that you will be cared for, one way or another.
Love to you both.
If you wrote a book I would definitely buy it!
Kari,
The auction we had for Bryan House last year was a great fund raiser, but also a lot of work. (We were able to raise about $16,000) An auction, or something like that, might a helpful short-term solution. Even something that you could make an annual event, but long term I wonder if it will be feasible to keep raising the kind of funds you will need every year for the rest of your lives? That could be a full time job in itself. I wonder if what we need is to start some kind of advocacy campaign (along with some short-term fund raising). What if we got a team of people to focus on telling your story to every congress person, media outlet, person of influence, etc that we can across the country? What if we got people to commit to writing an email to Oprah every week for however long it takes to get the story told on the show? What if we tried to work specifically with law makers to get reform? Get everyone you know to call their representatives and senators - both state and federal. It might sound crazy, but if we could focus some energy in that direction -- if we could work to get changes made to the Medicaid system itself based on your story, then that could make a difference for a lot of people and save you from having to become professional fund raisers forever. Maybe it's too idealistic, but maybe you could actually get a bigger group of people to help if the focus was systemic change rather than just personal fund raising. You could start your own non-profit and if the non-profit's goal was to help many people in a similar situation, then you'd immediately have a bigger audience. I don't know -- I don't mean to throw out something more overwhelming than you already have, but it's just something to think about. Let us know how we can help.-- Desiree
Desiree has a good idea... and the whole caregiver issue is problematic at times.
the system is broken. Yes. Aaron mgiht recall some issues I have had with my brother's care....
Not sure what to do. Except I'll pray. Please pray for me, too.
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