This morning while we were patiently waiting to see the performers of "Priscilla Queen of the Dessert" on The Today Show, there was a commercial urging Western New Yorkers to call their legislators and "Say YES! To the new medicaid redesign plan." What caught my ears was this statement, saying that cuts will be: "greatly improving patient care...".
Really, I though to myself, and thus began the conversation in my head. The Medicaid redesign team made 70 recommendations to Gov. Cuomo. If you are interested, here they are. Unfortunately, many of the recommendations, such as cuts to physical therapy, occupational therapy, speech therapy, and medications, seem to be a veiled attempt to push services OUT OF THE INDIVIDUAL HOME, forcing individuals into hospitals and nursing homes.
I mean, I get it. Funding has to be cut somewhere. But if I could be so bold...I'd like to point out just two aspect of the Medicaid Redesign Team's proposals that burn me up: "Increase coverage of tobacco cessation counseling", and way down on the list, number 4647, "Expand Managed Addiction Treatment Program", which refers to the NYC managed addiction treatment program. The expansion proposal is to increase the program's size three-fold.
Managed Addiction treatment Program (MATS) was a three-year partnership that was funded for $23,000,000. Yes, that's 6-zero's after the 23. Voluntary participants, in New York City, qualify for this program if they are a high-cost medicaid-eligible recipients...meaning, an individual used more than $30,000 or more in the prior 12 months on Alcohol and Other Drug Treatments. It provides case management, services, and also "wrap around" services...like child care, HEAP, food stamps, specialized employment services and so on.
I'm just doing some quick math, but a three-time increase is $69,000,000.
Lets just stop here for a minute. Some of you may not agree with me, but honestly it gets to me. It bothers me so badly I stay awake at night contemplating it.
You see, I nearly fell off my chair when I read this one. Just to be clear...supplementary services to my child with a birth defect, are going to be reduced; but services to people who participate in illegal activities, people who illegally purchase and illegal use drugs, are going to be increase three fold? I'm not saying this program should be cut. BUT, I am saying that if you are going to CUT funding to programs to support people with disabilities, I damn well expect to see cuts across the board, like to drug treatment programs. I don't expect to see people with disabilities pushed to the wayside (again), while other programs receive threefold expansion.
For anyone who might think cutting services a disabled person can receive in the home, and swaying services to nursing homes/hospitals/assisted living is not such a bad idea, read this article here, from last week's New York Times. Disgusting, and unfortunately a country-wide epidemic. I'm not sure how patient care is going to be "greatly improved" by pushing even more individuals into a broken, often unregulated world where mistreatment and abuse run rampant.
As a parent of a child considered *disabled*, I am acutely aware of how important independence is. We receive a Home and Community Based Waiver through Medicaid. It was created essentially to help people keep disabled individuals in their home, versus putting them into a nursing home or assisted living. It covers some medical costs that our insurance doesn't/doesn't fully cover (ie, catheters). It covers essential things that without having, we would not fully be able to support Emily in our home. Chris and I do not qualify for medicaid, or benefit from this waiver in terms of our health care. It is only Emily who does, and it covers what our primary insurance doesn't cover for her medical needs. We do not receive any "wrap around" services.
It's also worthy to note that Gov. Cuomo has proposed a 10% cut to Early Intervention, which is how we receive therapy services for Emily, from birth-age 3. I find this very perplexing. Aren't these costs just going to be incurred later in the school system (an already crippling system, thanks to Gov. Cuomo's 1.5 billion dollar cut to school aid. He estimates an average of 2.7% per school district in cuts, which he stated could be offset in one way by "rooting out inefficiencies") If a child doesn't received the necessary services by the age of 3, that's just even more services he/she will need once they transition, services the local school district then has to incur! The Assembly has restored the funding here, but the Senate has accepted the 10% cut.
Sometimes, I really feel that politics and government and much of the medical community choke people with special needs. They still remain one of the most oppressed groups of people in the world, particularly here in the US. I was never aware of this, perhaps I never cared to be, prior to having Emily. But now it's my job to be aware of it, and each time I turn over a rock I'm even more disturbed by what I find. I often listen to Clapton's "Change the World" and think about Emily, think about all the people with Spina Bifida. I think about purpose, and the positive change that can come. But sometimes when I see the muck of the things outlined above, it really darkens my rose colored glasses.
That's all for now. I have a few things to do in order to get us ready for Emily's Kidney Ultrasound and Voiding Cystourethrogram this afternoon, like clean off my glasses and make sure they are rose colored again.
Really, I though to myself, and thus began the conversation in my head. The Medicaid redesign team made 70 recommendations to Gov. Cuomo. If you are interested, here they are. Unfortunately, many of the recommendations, such as cuts to physical therapy, occupational therapy, speech therapy, and medications, seem to be a veiled attempt to push services OUT OF THE INDIVIDUAL HOME, forcing individuals into hospitals and nursing homes.
I mean, I get it. Funding has to be cut somewhere. But if I could be so bold...I'd like to point out just two aspect of the Medicaid Redesign Team's proposals that burn me up: "Increase coverage of tobacco cessation counseling", and way down on the list, number 4647, "Expand Managed Addiction Treatment Program", which refers to the NYC managed addiction treatment program. The expansion proposal is to increase the program's size three-fold.
Managed Addiction treatment Program (MATS) was a three-year partnership that was funded for $23,000,000. Yes, that's 6-zero's after the 23. Voluntary participants, in New York City, qualify for this program if they are a high-cost medicaid-eligible recipients...meaning, an individual used more than $30,000 or more in the prior 12 months on Alcohol and Other Drug Treatments. It provides case management, services, and also "wrap around" services...like child care, HEAP, food stamps, specialized employment services and so on.
I'm just doing some quick math, but a three-time increase is $69,000,000.
Lets just stop here for a minute. Some of you may not agree with me, but honestly it gets to me. It bothers me so badly I stay awake at night contemplating it.
You see, I nearly fell off my chair when I read this one. Just to be clear...supplementary services to my child with a birth defect, are going to be reduced; but services to people who participate in illegal activities, people who illegally purchase and illegal use drugs, are going to be increase three fold? I'm not saying this program should be cut. BUT, I am saying that if you are going to CUT funding to programs to support people with disabilities, I damn well expect to see cuts across the board, like to drug treatment programs. I don't expect to see people with disabilities pushed to the wayside (again), while other programs receive threefold expansion.
For anyone who might think cutting services a disabled person can receive in the home, and swaying services to nursing homes/hospitals/assisted living is not such a bad idea, read this article here, from last week's New York Times. Disgusting, and unfortunately a country-wide epidemic. I'm not sure how patient care is going to be "greatly improved" by pushing even more individuals into a broken, often unregulated world where mistreatment and abuse run rampant.
As a parent of a child considered *disabled*, I am acutely aware of how important independence is. We receive a Home and Community Based Waiver through Medicaid. It was created essentially to help people keep disabled individuals in their home, versus putting them into a nursing home or assisted living. It covers some medical costs that our insurance doesn't/doesn't fully cover (ie, catheters). It covers essential things that without having, we would not fully be able to support Emily in our home. Chris and I do not qualify for medicaid, or benefit from this waiver in terms of our health care. It is only Emily who does, and it covers what our primary insurance doesn't cover for her medical needs. We do not receive any "wrap around" services.
It's also worthy to note that Gov. Cuomo has proposed a 10% cut to Early Intervention, which is how we receive therapy services for Emily, from birth-age 3. I find this very perplexing. Aren't these costs just going to be incurred later in the school system (an already crippling system, thanks to Gov. Cuomo's 1.5 billion dollar cut to school aid. He estimates an average of 2.7% per school district in cuts, which he stated could be offset in one way by "rooting out inefficiencies") If a child doesn't received the necessary services by the age of 3, that's just even more services he/she will need once they transition, services the local school district then has to incur! The Assembly has restored the funding here, but the Senate has accepted the 10% cut.
Sometimes, I really feel that politics and government and much of the medical community choke people with special needs. They still remain one of the most oppressed groups of people in the world, particularly here in the US. I was never aware of this, perhaps I never cared to be, prior to having Emily. But now it's my job to be aware of it, and each time I turn over a rock I'm even more disturbed by what I find. I often listen to Clapton's "Change the World" and think about Emily, think about all the people with Spina Bifida. I think about purpose, and the positive change that can come. But sometimes when I see the muck of the things outlined above, it really darkens my rose colored glasses.
That's all for now. I have a few things to do in order to get us ready for Emily's Kidney Ultrasound and Voiding Cystourethrogram this afternoon, like clean off my glasses and make sure they are rose colored again.
