It's such a waste of energy and time and honestly, it's sin. It's failure to trust God to take care of things.
He's proven Himself again this week. And while I'm rejoicing in His provision, I'm so convicted of all the moaning and groaning and worrying and lack of trusting I've been doing. A friend told me recently that she keeps a "blessings journal" so that when she's discouraged, she can go back and read what God has done in the past and remind herself to trust. I write here in part to do that, but it doesn't help if I don't go back and read it myself!
Anyway, you're probably wondering what's happened. I'm still wrapping my head around it, but I'll try to articulate what a blessing we were given on Friday.
We've been on a waiting list for a waiver since Elli was 3 years old. We actually got onto two lists at the same time, and were given one about four years ago.
"What's a waiver?" you ask.
In our state, and many others across the U.S., states receive money from the federal SCHIP program (state children's health insurance program). Some of the money goes to provide medical care for uninsured children (CHIP). This is an income-based program. Other money goes to help families in the middle, who earn too much to qualify for need-based help but who face massive medical costs over and above what their insurance will pay. Some insurance plans still leave families with insurmountable co-insurance, and others stop paying after you reach a certain dollar amount (e.g. $1 million). Still others don't cover certain kinds of treatment or equipment. None of them pay for the modifications needed to accommodate a person in a wheelchair.
So states created waivers, which look at the child's needs, not the family's income or insurance coverage. With the cost of healthcare sky-rocketing, and with medicine advancing to the point that many more children are surviving catastrophic illnesses, birth defects, and injuries, the need for waivers has increased dramatically. Right now, if you get on the waiting list, they tell you to expect at least a 10 year wait.
But because we're fighting a war in Iraq and running a massive deficit, many in Congress are reluctant to increase the money allotted for the SCHIP program (you may remember hearing about the SCHIP reauthorization bill last fall and early this year). So the states don't have the money to create any new waivers. A child has to die for a child on the waiting list to get a waiver.
We got a call on Friday that Elli had finally reached the top of the list and was being awarded what they call here the I.O. waiver. It was sad to realize that someone had lost their child recently. I have been praying for them even as we've moved forward to get this finalized.
We did all the paperwork on Monday. We found out today that Elli's complex medical needs qualify her for a massive amount of financial assistance. In fact, our case worker said she had never seen anyone qualify for this high a number.
Aside from the financial relief this will bring us, and the countless ways it will enable us to help Elli by adapting our home and vehicles to fit her needs, this is a huge validation of the load we've been carrying. The money they allotted her is what they estimate it will take to care for her each year when we're too old or sick to care for her ourselves. It confirms what I've been feeling the last few years as her care has gotten steadily more and more complex.
We are praising God because we can finally have a helper dedicated to Elli 30 hours per week or more if needed. We can finally afford the ramps we need to get her and her wheelchair in and out of our home. We will be able to purchase a van with all the features she and a new powerchair will need for the next several years.
And one thing that really excites me -- this help will allow us to "pay it forward" and pass along some of the blessings and assistance we've received to others in need. And being able to give to someone else is an even greater blessing than receiving. We know first-hand how tough it is and what an encouragement it is to receive much-needed help.
Thank you God!
