Medicaid waiver in Illinois is drastically changing!

[kctwinmommy]

Just to pass along the news, the state of Illinois voted in both the House and Senate to drastically change the Medicaid waiver program. The one that helps many of our families keep our kids at home with us. Instead, they want to cap it anyone who is less than 500% above the poverty level. This is an income of $113,000 for a family of 4. They also want there to be higher copays for families, more cost sharing, basically more out of pocket costs. And this means that some families will be forced to quit jobs, take lesser jobs, get divorced, anything to keep them under that 500%! Or, our kids are going to be living in the hospital... It's a sad day in our state!!

[Cillian's Mom]

Cindy, I am so sorry to hear this. They have already started to cut adult programs for Medicaid in PA and I fear they will do the same for peds as well. What is wrong with these politicians?

[principe]

What is wrong with our country? When elections come and I go to vote I have no idea who I'm voting for because I don't know most of these people. I have no time to look up who they are and what it is that they want to do for the state. I really have no time for myself. Then I end up voting for whoever. But do these politicians really kep their promises anyway? Does it make a difference to look up at who they are? Do these politicians care about us?

[IzzyB]

I feel for you because I know how it can be. We have no waivers in FL and the system is so broken down here. People have to quit their jobs so they can be under the income level to get nursing, but then when they quit their jobs there is a parent at home all the time and therefore they don't qualify for anything, but 8 hours at night. So then they have to lie that they have a job to get nursing so they can do things like shopping and oh yeah, take care of their OTHER kids because now they can't afford daycare for them. They even took away errand hours and sibling hours. So all you get is your 8 at night.

We were told we would get 19 hours a week and then 4 extra hours a week when we switched to medicaid, but then they changed the system and took away the sibling and errand time. So now we would get 17 a day M-F and 8 Sat & Sun. My husband's manager changed his working hours, so we ended up with one extra hour, so now we have 18 M-F and 8 Sat & Sun. My husband was in school at the time so I had both kids from 5pm to 9pm. The HARDEST time to take care of my kids because at the time we were still on bottles, but starting more solid food and my son needed trach care & bath. Plus my daughter is crawling so she was all over the place and would never let me take care of my son. So we ended up paying out of our pocket for an extra two hours. We didn't tell the nursing company and pay the nurse out of our pocket. Which of course she could get fired if they find out.

We appealed saying my husband was in school at nights and we should get sibling hours. Their response was if we can't take care of both kids with one parent that we needed to hire a babysitter to take care of our daughter. So their response was basically as parents we would get to spend zero time with our daughter because we would be working and then have a babysitter. Our plan was 4 hours with our son (when our daughter is napping and no nurse) and 4 hours with our daughter (when our son has a nurse and we are not working). The rest would be sleeping or working.

The whole system is broken and they don't look at the individual situations. For example, if my daughter was say 4, it would be easier because they would know, don't pull the trach out, don't pull the feeding tube out, etc. But with them being twins and 17 months old (at the time of the decision they were only 13 months old) that you can't get my daughter to understand these things. So having one person play with both is a disaster. You basically spend your whole time dodging something being pulled out, a power cord being chewed on, suction tubing being taken a part, and you are yelling at her every two seconds. It was not fun and I thought I was going to lose my mind. Plus neither kid is getting anything out of this experience.

It is so sad, because so many people don't care about their fellow man, it is what THEY are getting out of it. And all THEY want is to pay lower taxes. Until of course something happens to them and they are the first to complain about not having help. For example, in Florida they asked the voters if they wanted lower property tax and what do people say when they have the chance to have lower taxes? Heck yeah! But no one thought what would happen when the government had less money. Well lets see, less money for the schools so our education has gone downhill, less money for police so it takes 30 minutes for a police officer to respond, less money for fire.... well you get the point. So now the same people who voted for lower taxes are now complaining about the services government gives them.

As for who to vote for, well all the politicians care about is their base voters and they will do anything to keep those base voters. So now we have these two extremes and nothing gets done in this country. The moderate voters need to stand up and demand that they meet in the middle and get some stuff done, but the moderate voters are the more quiet reasonable people and therefore it never happens. Our country is the laughing stock of so many other countries, because no one gets anything down and the American People suffer for it.

Sorry, off my soapbox again, but I get so frustrated when I see things happening like this.

[Shauna]

Ugh. I really hope we don't end up dealing with that here in Ohio. It seems Ohio is a really good place to live when you have kids like ours, but it dawns on me that it can change in the blink of an eye.

I wonder what would happen if hundreds of families in Illinois actually put their child in the hospital...it would certainly be more expensive for the state and they'd have to reconsider.

[davidsmom]

I can't believe this is happening! My husband or I will have to quit our job. Politicians don't care about people, they only care about themselves. I agree we need Medicaid reform here in Illinois, but there are plenty of people who abuse the system and it's not the families that are trying their best to take care of their special needs kids. Don't we have enough on our plates already.

[kctwinmommy]

For the parents on here, who are from Illinois, please send me a message to make sure I add you to our group on Facebook!!

[kadiera]

Someone on facebook has been talking about there being some other options...

I wonder what would happen if a bunch of you get together, call the news, and all show up at the same hospital to ask to have your kids admitted in protest, making sure that it's clear to the reporters the cost overnight in a PICU room vs the cost of a night nurse. Not that hospitals have beds for that sort of thing....

[kharmasmama]

Doesn't this just drive you nuts? All to save a few bucks too. Our country needs insurance reform but cutting services to the most vulnerable populations is ridiculous, especially considering that the savings are a tiny fraction of what we could cut out of the defense budget...

[jamie]

all of these cuts are part of the new health care plan.... it will all work out later but they have to make cuts so they can have enough money to spread the care to more people.
it does drive me crazy that some people abuse the system and then others like our children end up having to go without what they truly need.
my ex is dying of kidney failure, he still smokes and drinks, and when he gets really sick he goes to the hospital where they do all they can to save him....repeat...repeat. it angers me that he doesn't care that he is abusing a system.
Evan lives at home where we do our very best to keep him well and only order the supplies we truly need, and all the while worry that some of his care will be cut.