There's a really important opinion piece in today's New York Times. Written by Mike Ervin -- a disability rights activist who's wheelchair bound and reliant on a Medicaid waiver that finances the care he needs to get out of bed, get washed, cook his meals, do it laundry -- the piece explains the fear people who are dependent on state and federal health programs feel during this incessant budget cutting that threatens to force them all into institutions. For people with disabilities who are provided the services they need to be productive, earn a living, the budget cutting -- which inevitably seems to target the poor, the sick, the disabled -- causes great fear. What if, they ask, the next round of budget cuts ends my ability to remain in the community, in my own home, doing work I care about? The answer? It's not like nursing home care is cheaper. So why anybody thinks that cutting these programs is smart budget policy -- not to mention social policy -- is beyond me.
Every once in awhile I get a phone call from someone who's lost their lifeline to budget cuts. They turn to me to come up with an alternative. Well, I can tell you right now -- if you are counting on the private sector to provide the support that federal, state and local governments have cut, you're going to be disappointed. Don't expect me to have answers when your elected officials have done nothing but eliminate whatever answers used to exist. And don't aim your righteous anger at me. If the programs don't exist, I can't find them for you. Instead, contact your state and federal legislators -- those who voted to take away the services you needed in order to function. That's where the blame lies.
So when you call me from Georgia or Florida or Texas or Mississippi and ask me how to get affordable health insurance with a pre-existing condition, don't blame me for the fact that there's no answer. Blame the residents of your state for voting for politicians who care more about cutting the size of government than they care about our lives and deaths. Blame the politicians for selling this lie, that we will be better off with smaller government and more tax cuts for the wealthy. Blame those who do nothing to make the world a better place. Jennifer
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Thanks so much for posting info on Mike Ervin’s OpEd. As a parent of a child in the MFTD Waiver he referenced, we are shocked and bewildered that Illinois would intentionally take away home nursing care for the most vulnerable children in the state, simply because they cost too much. We have a website for our families and our attempt to save this program and our kids…help us keep our kids at home! http://www.SaveMFTDWaiver.com
ReplyDeleteI am the parent of a child that is dealing with the cuts referred to by Mike Ervin. Like the one above said, thank you so much for helping draw more attention to our plight. There is a large parent group that has been working day and night to try and get this terrible beast stopped.
ReplyDeleteI have a wonderful happy child that we are looking at having to put in a "home" (at a much higher long term cost) because Illinois wants to save a short term buck. Its going to break our heart but we simply can not provide all of her care.
The web page linked above has some great resources. We are looking for more people to help us fight back on a state and federal level.
If Illinois lets this happen, its only a matter of time until other states follow suit. We have to stop this now,
I am also one of the parents with a child on the illinois waiver. you talk about going after the politicians. I have been after my rep and senetor for months. All i get is lies, double talk, empty promises , and the political blow off. I am happy you are adressing this. We need national coverage to fight this.Our local and state goverment has turned a deaf ear to us. We as parents will keep fighting but we need help....any help.
ReplyDeleteThanks for writing about Mike Ervin's article. My DH and I have two children on the MFTD waiver program. If we can't stop these cuts we will eventually have to place them in the hospital at 3x the cost to the state. Too bad that Michael Madigan and Sara Feigenholz have tried to sell our children to their nursing home campaign contributors. Hope fully we can get this stopped!! Otherwise there will be a lot of angry parents at campaigns because we have contacted many of our congresspeople to no avail. Darin LaHood seems to care less despite his parents donating the Ray and Kathy LaHood center for Cerebral Palsy in Peoria.
ReplyDeleteI am a mother to a beautiful child who is dependent on his tracheostomy tube and vent. Our entire family will be ripped apart by the new Illinois Medicaid reform Gov. Quinn has signed. This new reform will not save Illinoisians money! Rather it will cost is all dearly! How can the state say it's saving money by allowing PCAs to care for our kids when state law prohibits PCA's to suction tracheostomies and to work with ventilators??? The the state run institutions they say can take our kids are under state investigation for child neglect and wrongful death lawsuits have been file in findin of the plaintiffs because these facilities are nursing home quality care places, not pediatric hospitals with well trained professionals equipped to deal with the most medically fragile and technology dependent children!!!! We have tried contacting all our State Reps, even ones not in our district begging them to hear our point-of-view, and to hear our cost saving ideas. Yet, they aren't making hundreds of thousands of dollars in behind the closed door deals from us. So, they don't give a crap about we say or think! We're only the hard working middle class with a vent dependent child, who if dies because of this stupid move by Illinois legislators will cost Illinois millions of dollars in another wrongful death lawsuit because somehow we've managed to keep our child alive all these years at home with the live and support of well skilled RN's, but if dies at the hand of PCAs, the State has already heard from expert doctors that not even CNAs are qualified enough to care for these patients, much less a PCA!
ReplyDeleteThank you for helping draw attention to this issue. As the parent of a child in the MFTD Waiver I am devastated by the cuts passed by the Illinois legislature.
ReplyDeleteFor the families in this program home nursing care is not a luxury that we use in order to go to the movies or to eat out. We depend on this service to keep our kids at home. My family has nurses from 11:00 pm till 7:00 am while we sleep, and then from 7:00 am till 5:00 pm. while we work. When we come home from work we are alone taking care of our son. By reducing or eliminating this service they place families like ours with two options: Since our kids need constant medical supervision, we can quit our jobs, take care of our son and live on food stamps, or we can place our son in the hospital or in an institution. I am the mother of a child with severe physical disabilities, but above all I am a mother, and I love my son like any other mother in the world. Does anyone have the right to force parents to separate from their children? What if the state would ask you tomorrow to give up your child for the sake of its finances? What would you do then? If you can even imagine that impossible situation, maybe then you could understand our desperation.
Additionally it won't save the state any money. If we place our son in a hospital the state will have to pay three times the cost of having him at home. If we decide to live on food stamps we will become a greater burden to the state.
I hope that all of you who posted above are working together in a coalition. I hope that you have help in Illinois from people who know how to organize, spread the word, approach state officials, and get lots of press. If you don't, I'm willing to help however I can long-distance. You can reach me at 860-674-1370 or patient_advocate@sbcglobal.net. Jennifer
ReplyDeletewww.savemftdwaiver.com = this is where a group of us collect information and yes we do work togeather. we all have the same headache from hitting same brick wall time and time again. but we get up each morning and continue to fight anyway we can think of, after all it is our children, our hearts and souls we are fighting for. we can do no less
DeleteThank you so much for offering your help. It is good to feel that we are not completely invisible to others. Any contacts with the press or other organizations that you may have, or any type of advice you can offer would be greatly appreciated.
DeleteYou can contact us through www.saveMFTDWaiver.com
Add us to the list of families about to lose services in IL.
ReplyDeleteThank you for the article and trying to bring attention to this tragedy. The rest of the U.S. needs to be brought up to speed, because if IL gets away with this, it is really only a matter of time before the other states follow suit.
And where is the Federal Government in all of this? What happened to the Affordable Health Care act that Obama has been preaching about? Why doesn't that include our children?
I am thankful for the article which hopefully will bring some national attention to this issue. I posted the link on my local IL representative's facebook page because we have contacted our local representative and got sympathetic ears, but then no action. I want to make sure they realize we will not be one of those groups, even though small, that will make a big noise, then fade quitely into the background again.
ReplyDelete