We don't ask very often for help but now we need it. I just copied the text from a post Kate put on facebook over the weekend. We'll post more later about the situation but for now, please read what Kate posted on Facebook below.
HELP! Our baby Leo is diagnosed with a rare brain disorder called Pontine Tegmental Cap Dysplasia. Per doctor's orders he requires 24hr awake care by a parent or skilled nurse due to his trach/vent/g-tube. Since Leo's private BCBS insurance plan only provides $8,500 of nursing care for per year, we rely on a state waiver to work and sleep, Governor Rauner cut the funding for our waiver and essentially our nurses pay by 16.75% effective 5/1/15 without warning. We are afraid our wonderful nurses will be forced to leave us to make enough money to support their own families. Without nursing we will be forced to hospitalize Leo and likely quit my job. Studies have proven providing home nursing actually saves the state about $324M per year by keeping kids out of the
hospital/institutions. Not to mention the much better quality of life for the kids and families.
HELP! Our baby Leo is diagnosed with a rare brain disorder called Pontine Tegmental Cap Dysplasia. Per doctor's orders he requires 24hr awake care by a parent or skilled nurse due to his trach/vent/g-tube. Since Leo's private BCBS insurance plan only provides $8,500 of nursing care for per year, we rely on a state waiver to work and sleep, Governor Rauner cut the funding for our waiver and essentially our nurses pay by 16.75% effective 5/1/15 without warning. We are afraid our wonderful nurses will be forced to leave us to make enough money to support their own families. Without nursing we will be forced to hospitalize Leo and likely quit my job. Studies have proven providing home nursing actually saves the state about $324M per year by keeping kids out of the
hospital/institutions. Not to mention the much better quality of life for the kids and families.
WE NEED YOUR HELP!
The wording in the link below and comment section of this post was prepared to send to elected officials. Find your state senator and state representative using this locator: http://www.elections.il.gov/districtlocator/addressfinder.aspx Call/email/traditional mail BOTH of them. All you need to do is copy it, copy the pic, add your name and send! Please SHARE this post and forward to your friends and family! People frequently here about Leo's challenges and ask how they can help....well this is it! We are cashing in all those offers! Click this link for a copy in a word.doc. https://drive.google.com/file/d/0B5ym9gfAOdQGTktzMHBJVXlaVmM/view?usp=sharing
You can also email katebasehore@yahoo.com for an email copy or questions! If you complete this request please comment on the post to let us know it's working! Thank you!
Here is a copy of the letter if the link above doesn't work for you.
My Name is your name and I live in your district. I wanted to express concern regarding the 16.75% temporary cut to Medicaid reimbursement and any future reimbursement cuts in next year’s budget. Specifically, I want to request that home nursing services for medically fragile children be exempted from these reimbursement cuts (children on the DSCC MFTD Medicaid waiver).
Leo is a special 17 month old baby in my life diagnosed with an extremely rare brain disorder called Pontine Tegmental Cap Dysplasia. Leo requires a trach and ventilator to breath and a g-tube for nutrition. Sweet Leo can only live at home because of the home nursing care provided by Medicaid. He has been home now for a year and doing well slowly weaning off the vent, progressing with therapy and handing out smiles to everyone who loves him. Without home nursing care, the state has determined that Leo would have to live in a hospital. Leo’s parents have good jobs (thanks to nurses who watch Leo while they sleep and work), but their private BCBS PPO insurance plan only pays for $8,500 of nursing care per year so they rely on their waiver for help.
These reimbursement cuts have had an immediate and dramatic effect on children in the MFTD waiver program. About half the nursing agencies that participate in the program have already said they will not accept Medicaid clients any longer. Some are discharging children. Leo’s specific agency immediately cut the pay of his nurses. His nurses do not know how they will pay their bills this month and may need to find additional work. We fear they will permanently leave the family who depends of them. Some children who are in the hospital have been told they can no longer go home because agencies and nurses cannot be found. In fact, if only 8 children in the program end up or continue to remain in the hospital, all savings from the temporary 2-month cut will disappear. Home nursing had already experienced a 19% reimbursement cut since 2012 and a 50% reimbursement cut over the past 20 years, accounting for medical inflation. This program was already struggling to meet the EPSDT mandate required by federal law even before the recent cut, with only 60% of approved nursing hours being filled.
Home nursing services for medically fragile children are absolutely critical. In addition, they are cost effective, since hospital care is six times more expensive. In fact, home nursing care saves the state about $324 million per year. But if children like Leo are unable to receive home nursing care due to reimbursement cuts, the costs for these children will rise considerably as more and more of them end up hospitalized.
Illinois needs to make smart financial decisions to truly save money. Cutting reimbursement for the most vulnerable and medically fragile children in the state will not save Illinois money. It will COST money as more children are shifted to hospitals and institutions.
Please help us get an exemption for pediatric private duty nursing from this and all future reimbursement cuts.
If you would like to really cut state costs in the long-term, help us fight private insurers to provide the home nursing coverage doctors order for children like Leo. Eliminating the maximum out of pocket expense was a huge win for families like mine and covering skilled nursing is the next step in the fight.
Please contact Leo’s Mom, Kate Trost, with any questions or concerns at 708-921-9225 or katebasehore@yahoo.com
Sincerely,
Your Name
Your Phone
Your email
The wording in the link below and comment section of this post was prepared to send to elected officials. Find your state senator and state representative using this locator: http://www.elections.il.gov/districtlocator/addressfinder.aspx Call/email/traditional mail BOTH of them. All you need to do is copy it, copy the pic, add your name and send! Please SHARE this post and forward to your friends and family! People frequently here about Leo's challenges and ask how they can help....well this is it! We are cashing in all those offers! Click this link for a copy in a word.doc. https://drive.google.com/file/d/0B5ym9gfAOdQGTktzMHBJVXlaVmM/view?usp=sharing
You can also email katebasehore@yahoo.com for an email copy or questions! If you complete this request please comment on the post to let us know it's working! Thank you!
Here is a copy of the letter if the link above doesn't work for you.
My Name is your name and I live in your district. I wanted to express concern regarding the 16.75% temporary cut to Medicaid reimbursement and any future reimbursement cuts in next year’s budget. Specifically, I want to request that home nursing services for medically fragile children be exempted from these reimbursement cuts (children on the DSCC MFTD Medicaid waiver).
Leo is a special 17 month old baby in my life diagnosed with an extremely rare brain disorder called Pontine Tegmental Cap Dysplasia. Leo requires a trach and ventilator to breath and a g-tube for nutrition. Sweet Leo can only live at home because of the home nursing care provided by Medicaid. He has been home now for a year and doing well slowly weaning off the vent, progressing with therapy and handing out smiles to everyone who loves him. Without home nursing care, the state has determined that Leo would have to live in a hospital. Leo’s parents have good jobs (thanks to nurses who watch Leo while they sleep and work), but their private BCBS PPO insurance plan only pays for $8,500 of nursing care per year so they rely on their waiver for help.
These reimbursement cuts have had an immediate and dramatic effect on children in the MFTD waiver program. About half the nursing agencies that participate in the program have already said they will not accept Medicaid clients any longer. Some are discharging children. Leo’s specific agency immediately cut the pay of his nurses. His nurses do not know how they will pay their bills this month and may need to find additional work. We fear they will permanently leave the family who depends of them. Some children who are in the hospital have been told they can no longer go home because agencies and nurses cannot be found. In fact, if only 8 children in the program end up or continue to remain in the hospital, all savings from the temporary 2-month cut will disappear. Home nursing had already experienced a 19% reimbursement cut since 2012 and a 50% reimbursement cut over the past 20 years, accounting for medical inflation. This program was already struggling to meet the EPSDT mandate required by federal law even before the recent cut, with only 60% of approved nursing hours being filled.
Home nursing services for medically fragile children are absolutely critical. In addition, they are cost effective, since hospital care is six times more expensive. In fact, home nursing care saves the state about $324 million per year. But if children like Leo are unable to receive home nursing care due to reimbursement cuts, the costs for these children will rise considerably as more and more of them end up hospitalized.
Illinois needs to make smart financial decisions to truly save money. Cutting reimbursement for the most vulnerable and medically fragile children in the state will not save Illinois money. It will COST money as more children are shifted to hospitals and institutions.
Please help us get an exemption for pediatric private duty nursing from this and all future reimbursement cuts.
If you would like to really cut state costs in the long-term, help us fight private insurers to provide the home nursing coverage doctors order for children like Leo. Eliminating the maximum out of pocket expense was a huge win for families like mine and covering skilled nursing is the next step in the fight.
Please contact Leo’s Mom, Kate Trost, with any questions or concerns at 708-921-9225 or katebasehore@yahoo.com
Sincerely,
Your Name
Your Phone
Your email
I was a little behind on keeping up with your blog and just saw this post. Letters have been sent. Your family is incredibly strong and loving and I hope and pray Leo can (and should) stay at home with the support of the people that love him.
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