Growing a Tree

"Someone's sitting in the shade today because someone planted a tree a long time ago."

Archive for the month “May, 2012”

Call to Action: Save the Waiver

A call to action for Illinois citizens:

The Illinois legislature recently passed SB 2840, a Medicaid bill that will result in drastic, life-changing consequences for families using the state’s Medically Fragile Technology Dependent waiver.

I truly wish that was an exaggeration, spin to make you sit up and take notice – but it’s not. If the bill continues in its current form, as many as 488 children will take permanent residence in skilled nursing facilities, hospitals or institutions.

The bill would require families on the waiver to pay 5% of their income as a “cost share” for the program, and completely cuts families making more than $95,450 from the program. As a point of reference for you, the average yearly cost for one child on the waiver is $188,210. Families simply cannot afford that kind of care, even if they make “a lot” of money. (even $95,000 a year won’t put a dent in $188,210)

What about private insurance? First, it’s important to know that the vast majority of private insurance companies do not cover the cost of in-home care. Second, the waiver is a payer of last resort. That means it picks up the tab where other insurance leaves off – so even if these families are privately insured, they are still facing an average of $188,210 a year in addition to any private insurance payments/premiums to keep their children from living the rest of their lives in a hospital or a skilled nursing facility.

This is the kind of measure that seems reasonable on paper (and certainly panders to the “I have to pay for MY care, so you should, too” mentality) but in reality, it simply is not. Families whose children qualify for this waiver have been scrimping, saving, and sacrificing since their children were diagnosed. Parents, in many cases, cannot even go to bed at night if there is no night nurse to assist, much less leave the home in order¬† to contribute financially. This is an incredibly difficult waiver to qualify for, and the families who use it are truly in need of the help it provides. These are children who are literally technology dependent – they have trachs, feeding tubes, and other medical supports. Even if they are also privately insured, there are many expenses not covered by private insurance or Medicaid – costing these families $10,000-30,000 a year just in out of pocket expenses.

Many studies comparing the cost of in-home care to institutional care have proven, time and again, that in-home care is vastly cheaper. It’s not even close – we’re talking tens of thousands of dollars per person per month cheaper to live at home rather than an institution. Yet, institutional care comes at zero additional cost to the family, while those fighting to keep their children at home – where they belong, where it is cheaper for the state – will pay 5% of their income, a price most families on the waiver simply cannot afford.

I am the first to admit that budgets need to be balanced, and states need to be fiscally responsible. This is absolutely not the way to do it.

So, if you’re an Illinois resident, what can you do?

Contact your legislators – and contact them now. The clock is ticking and there is very little time left for the legislature to pass a rider to change this section of the Medicaid bill.

Here is a link to where you can find contact information for your legislators.

What can you do? Call and email. Let them know this is not only costing the state more money but tearing families apart.

State your case, and here’s the ask: a rider bill for the MFTD Waiver portion of SB 2840. There is still time to help these families, but you need to act today.

Make your voice heard!

For more information, please check out the Save the MFTD Waiver website.

Home Visit

Today I had a wonderful experience in political advocacy, and I’m hoping what happened will show how easy it truly is to have an impact.

I invited our state senator to our home to chat about state programs our daughter uses. During the next legislative session, our state will be taking up a new budget and I wanted him to have a “real life” experience with a family who has a child with a disability when he goes to negotiate and vote.

We arranged a time for him to come to our home and it happened to be near the time of one of our Birth to 3 (early intervention) therapies. I let our occupational therapist know ahead of time, and she consented to running an OT session with the senator there.

My senator sat with me in my living room and we just talked. That’s it – just talked. I didn’t have a presentation prepared, I didn’t have a handout. I wanted him to sit in the home of a child with a disability, speak to that child’s mother, see what life looks like. And that’s what we did. We talked while my daughter scooted around the living room, playing with toys, chatting and smiling.

I had a few talking points I wanted to get in. I wanted to talk about the impact Birth to 3 has had on our family and how helpful the Katie Beckett waiver has been. I simply wove those into our conversation. I shared with him our diagnosis story and some of the medical obstacles we faced. He told me about his grandkids. We talked about how bright the future is for my child and some ideas for things that would make things even brighter. He shared with me his personal experience as a senator who was in office as Wisconsin closed institutions and helped people return to the community.

Our OT arrived, and the conversation transitioned to what Birth to 3 looks like for us, what our experience has been like, and what other families have experienced. He spoke with our OT, he asked questions about funding, he asked how it was run. He told me he had never been to a Birth to 3 session before and this was a great way to see what he votes for.

At the end, he thanked me for helping him put a face on the Katie Beckett waiver and said he would remember my daughter whenever issues regarding the waiver arise.

Mission accomplished, I’d say.

But really – it was easy. Senators and representatives want to know their constituents. They want to hear about what life is like for their constituents, they want to know how their vote affects a family, not just a vague demographic.

You don’t need to be deeply knowledgeable on a subject. You don’t need to hold the same political beliefs as your elected representative. You just need a topic of discussion and a willingness to share your personal story.

To set it up, it’s as easy as calling or emailing the official’s office and asking for an appointment. They might be willing to come to your home, or you could ask to meet in their district office or at a local coffeehouse.¬† They have more flexibility when the legislature is not in session (Wisconsinites, that means you have until January!) and the time between sessions is specifically for the purpose of meeting with constituents.

Think about it. If we want our officials to understand disability, the only way for them to know is for them to see. Consider scheduling a visit with your elected officials as a way to help them understand what life is like for you as a parent, and for your child.

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