This is a dog blog. I usually use it to write about dog training, service dog stuff in general, and what happened in class. Right now, however, I am too troubled by the fact that some of my families may lose the care they need for their children that I feel like knowing how to perfect the retrieve might be, well, not so important. Important, true, and in class I will help people with it, but for the purpose of this blog on this day, well, not so much.
Assuming you are still reading the blog, despite the absence of training advice, wisdom, stories, here is the issue at hand:
"I. SUMMARY OF MEDICAID BUDGET CUTS AND THEIR IMPACT ON CHILDREN WITH COMPLEX and CHRONIC MEDICAL NEEDS
Human and Family Services (HFS) has been asked to cut $2.7 billion from the Medicaid budget. A significant portion of those cuts will impact children, including children with complex and chronic medical needs.
Of most immediate and serious concern to this population is that HFS will recommend that the state eliminate something called the "waiver" program--which is the program (or really programs) that allows families whose income exceeds the basic eligibility requirements (currently set at 300% of the federal poverty level, or $69,150, for a family of 4) to obtain Medicaid coverage simply because of the severity of their child's illness and/or disability. All families on the waiver program have children who are complex, disabled, or chronically ill in some way.
A few aspects of these changes are particularly troubling:
1) Of the families who are currently on the waiver program, a small but significant portion are there because their children are "technology dependent," particularly vent dependent, but also including children with trach's and other situations. These children require round the clock nursing or other significant medical supports, and the practice has been to support those children IN THE HOME using Medicaid, simply because private insurance will not cover private duty nursing.
Though there appears to be the chance that current families MIGHT be allowed to stay on the waiver via a "grandfathering program," (this is not a done deal), in any case cost sharing WILL likely be instituted--which would require families who are above the basic income level to contribute a monthly fee toward the costs of Medicaid services--in other words, they would have to pay for insurance rather than being covered with no costs. This cannot be higher than 5% of a family's income according to federal law, but it could still be quite a lot of money--as we know, the out of pocket expenses for families with a medically complex child can be quite high, so the burden may be overwhelming.
The great concern here for families is that the changes in, or loss of, the waiver program could force them to make terrible choices, such as
---giving up their home in order to afford services
---quitting a job in order to drop below the basic eligibility requirements and then regain services because of their impoverished situation (which would simply increase the state's burden rather than alleviate it because this would usually also mean giving up private insurance, which does carry some portion of the cost of care, especially hospitalization)
---or, even more distressing, cause families to give up custodial rights to make their children wards of the state in order to keep nursing (potentially in a nursing home rather than at home).
2) The state will likely consider lowering the eligibility level for Medicaid from 300% of federal poverty all the way down to the minimum required by federal law, which is 150%, or $33,075 for a family of 4. Current law governing AllKids protects families below this number, so it is unclear what such a change would require, and if it would be possible. Still, it is important to know that this may be on the table.
3) Other current waiver-based services (like non nursing needs such as respite care and home modifications) will continue to be provided but perhaps not through Medicaid, but instead through some other, unnamed funding source; it is unclear whether or not cost-sharing would be instituted in this case, but in such a budgetary climate, it seems likely." quoted from an advocacy email, 2-11-12.
Pretty dire. And yet, in these difficult times, it might be easy to say, well, who cares? They are still getting help. etc. And perhaps even I would not get the full grasp of this had I not ever taken the reins of the Morris Service Dog program, which serves more children than adults. Perhaps I could exist in the lala land of "oh, that's a shame, isn't it?" and go on with my very busy and important life, had I never met the kids who's dogs I help train. Because this is the face of a medically complex child:
And here is what her mother has to say about the whole thing. As a parent, myself, my heart follows her through this journey.
I am the mother of a medically fragile child and am writing to you in regards to the proposed medicaid cuts that are about to threaten my daughter and children like her. My daughter Sara was born with a rare genetic disorder. This means that she has a heart condition requiring open heart bypass surgery at three days old, has had two cleft palate surgeries, a feeding tube, a seizure disorder, reactive airway disease, is both physically and mentally delayed, and is the love of our family. We almost lost Sara to RSV, pneumonia, and ARDS last year. As we were told the news I threw myself into bed with her for days only to leave her side to use the bathroom and to be coaxed to eat. My husband and I spent in total close to three months in the ICU. We are now home and with the help of our home nurses we care and love her with every cell in our bodies. I could not imagine my daily life without seeing her face, hugging her, snuggling with her, hearing her giggle, and spending "normal" moments with her. With these proposed cuts we as parents are are told that in order to care for these children they must be placed in either ICU or in a nursing home. Could you as a parent imagine not having your children at home? I know that you check on your children in the middle of the night and look into their faces and dream about the future. For us parents, with fragile children, we have already mourned the loss of a normal life for both our families and children. How could you now ask us to be separated from our children? We cannot punish these vulnerable children. We cannot separate these fragile children from the ones who love and protect them. If it is cost that we are looking at the figures will show that it is more cost effective to have these children at home. Please do not let Julie Hamos and Governor Pat Quinn make these cuts our families. We must find another way.
So what can YOU do?
Write your rep.
Sign the petition at the top right corner of this page.
Storm the darn castle.
Children and families should not suffer because the state made mistakes. Children and families should not be separated in the name if balancing the budget.
Will you help? Will you storm the castle?
Assuming you are still reading the blog, despite the absence of training advice, wisdom, stories, here is the issue at hand:
"I. SUMMARY OF MEDICAID BUDGET CUTS AND THEIR IMPACT ON CHILDREN WITH COMPLEX and CHRONIC MEDICAL NEEDS
Human and Family Services (HFS) has been asked to cut $2.7 billion from the Medicaid budget. A significant portion of those cuts will impact children, including children with complex and chronic medical needs.
Of most immediate and serious concern to this population is that HFS will recommend that the state eliminate something called the "waiver" program--which is the program (or really programs) that allows families whose income exceeds the basic eligibility requirements (currently set at 300% of the federal poverty level, or $69,150, for a family of 4) to obtain Medicaid coverage simply because of the severity of their child's illness and/or disability. All families on the waiver program have children who are complex, disabled, or chronically ill in some way.
A few aspects of these changes are particularly troubling:
1) Of the families who are currently on the waiver program, a small but significant portion are there because their children are "technology dependent," particularly vent dependent, but also including children with trach's and other situations. These children require round the clock nursing or other significant medical supports, and the practice has been to support those children IN THE HOME using Medicaid, simply because private insurance will not cover private duty nursing.
Though there appears to be the chance that current families MIGHT be allowed to stay on the waiver via a "grandfathering program," (this is not a done deal), in any case cost sharing WILL likely be instituted--which would require families who are above the basic income level to contribute a monthly fee toward the costs of Medicaid services--in other words, they would have to pay for insurance rather than being covered with no costs. This cannot be higher than 5% of a family's income according to federal law, but it could still be quite a lot of money--as we know, the out of pocket expenses for families with a medically complex child can be quite high, so the burden may be overwhelming.
The great concern here for families is that the changes in, or loss of, the waiver program could force them to make terrible choices, such as
---giving up their home in order to afford services
---quitting a job in order to drop below the basic eligibility requirements and then regain services because of their impoverished situation (which would simply increase the state's burden rather than alleviate it because this would usually also mean giving up private insurance, which does carry some portion of the cost of care, especially hospitalization)
---or, even more distressing, cause families to give up custodial rights to make their children wards of the state in order to keep nursing (potentially in a nursing home rather than at home).
2) The state will likely consider lowering the eligibility level for Medicaid from 300% of federal poverty all the way down to the minimum required by federal law, which is 150%, or $33,075 for a family of 4. Current law governing AllKids protects families below this number, so it is unclear what such a change would require, and if it would be possible. Still, it is important to know that this may be on the table.
3) Other current waiver-based services (like non nursing needs such as respite care and home modifications) will continue to be provided but perhaps not through Medicaid, but instead through some other, unnamed funding source; it is unclear whether or not cost-sharing would be instituted in this case, but in such a budgetary climate, it seems likely." quoted from an advocacy email, 2-11-12.
Pretty dire. And yet, in these difficult times, it might be easy to say, well, who cares? They are still getting help. etc. And perhaps even I would not get the full grasp of this had I not ever taken the reins of the Morris Service Dog program, which serves more children than adults. Perhaps I could exist in the lala land of "oh, that's a shame, isn't it?" and go on with my very busy and important life, had I never met the kids who's dogs I help train. Because this is the face of a medically complex child:
 | |||||||
| Sara and Suki |
And here is what her mother has to say about the whole thing. As a parent, myself, my heart follows her through this journey.
I am the mother of a medically fragile child and am writing to you in regards to the proposed medicaid cuts that are about to threaten my daughter and children like her. My daughter Sara was born with a rare genetic disorder. This means that she has a heart condition requiring open heart bypass surgery at three days old, has had two cleft palate surgeries, a feeding tube, a seizure disorder, reactive airway disease, is both physically and mentally delayed, and is the love of our family. We almost lost Sara to RSV, pneumonia, and ARDS last year. As we were told the news I threw myself into bed with her for days only to leave her side to use the bathroom and to be coaxed to eat. My husband and I spent in total close to three months in the ICU. We are now home and with the help of our home nurses we care and love her with every cell in our bodies. I could not imagine my daily life without seeing her face, hugging her, snuggling with her, hearing her giggle, and spending "normal" moments with her. With these proposed cuts we as parents are are told that in order to care for these children they must be placed in either ICU or in a nursing home. Could you as a parent imagine not having your children at home? I know that you check on your children in the middle of the night and look into their faces and dream about the future. For us parents, with fragile children, we have already mourned the loss of a normal life for both our families and children. How could you now ask us to be separated from our children? We cannot punish these vulnerable children. We cannot separate these fragile children from the ones who love and protect them. If it is cost that we are looking at the figures will show that it is more cost effective to have these children at home. Please do not let Julie Hamos and Governor Pat Quinn make these cuts our families. We must find another way.
So what can YOU do?
Write your rep.
Sign the petition at the top right corner of this page.
Storm the darn castle.
Children and families should not suffer because the state made mistakes. Children and families should not be separated in the name if balancing the budget.
Will you help? Will you storm the castle?
