Please contact Senator Tom Harkin and Representative Danny Davis to thank them for reintroducing the Community Choice Act. And be sure to contact your political representatives to support this act too!
++++++++++++++++++++++++++++++++++++++++++++++++
Measure Offers Choice And Independence For People With Disabilties
by Harkin Press Staff
Disability advocates from around the country travel to Washington to rally with lawmakers
A measure introduced today in both the U.S. Senate and U.S. House will offer choice and independence for people with disabilities. The Community Choice Act, legislation sponsored by Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities. It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.
“The legislation sends a message to the rest of Congress and to America: We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act. “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need. It is wrong – and this legislation changes it.”
“This legislation allows States and consumers to obtain more cost effective long-term services in the most appropriate setting for the individual. Individuals with disabilities will be able to chose between services in an institution or services at home permitting more independence, more dignity and reduced cost,” said Congressman Davis. “Without any new entitlements, The Community Choice Act will allow the dollars to follow the person, and allow individuals, or their representatives, to choose where and how to best receive services and supports.”
Under the U.S. Supreme Court’s decision in Olmstead v. L.C. (1999), individuals with disabilities have the right to choose to receive their long-term services and supports in the community, rather than in an institutional setting. The Community Choice Act would amend Title XIX of the Social Security Act to make community-based attendant care services an alternative for Medicaid recipients who are “institutionally eligible” for nursing home care.
Disability advocates from around the country traveled to Washington today to rally with the lawmakers as they announced the introduction of the measure, which is supported by all of the major disability organizations.
Showing posts with label community choice act. Show all posts
Showing posts with label community choice act. Show all posts
Tuesday, March 24, 2009
Nick Dupree Knows What He's Talking About!!!
Disability A “Social Construct?” Not If You Lack Supports
Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?
Traditionally, society would tell you the banker is disabled. Dumb society. Clearly, he’s not as disabled as the basement guy! If we measure ability according to contribution, the banker is way ahead. But society usually measures things based on appearance, and the banker looks “dependent,” “confined to a wheelchair” and “trapped” to most people.
Does this mean disability is a purely social construct? And we should all go write disability studies papers about how disability is a false construct used by a pervasively ablist society to oppress those who are different? Not so fast.
It all depends on supports. If your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference, like hair color or left-handedness. You can contribute in your own way, as everyone else can. But if you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back, unable to contribute. The banker who made $100,000 will make $0 and live in a dim nursing home without the support of his assistants. Suddenly, he is MUCH MORE disabled than the basement guy (who at least always has choices). Suddenly, it’s not a social/cultural difference the banker has the luxury to debate; he is watching his peers contribute and benefit in society while he’s unable to leave his room regardless of his wishes, and the cultural assumptions of his inability have become true, a prophecy fulfilled by the system’s outdated model. He’s suddenly very different, and it’s not cultural at all. It’s a real, physical difference, and a huge barrier.
Unless we have reliable access to proper personal attendants and supports in the community, unless we pass the Community Choice Act and offer REAL choices of community living vs. living in a hopeless institution’s back ward, then debating “disability as a social construct” will be the luxury of academics, while those with severe disabilities hope the nurse will let them turn on their side today. Until we have the help we need, our problems will be very real and physical, with the invisible cultural barriers several rungs up the ladder, something we HOPE we can confront once we climb up.
And once more and more of us with severe disabilities are living independently and publicly seen doing so, the appearances, and thus the societal perceptions, will shift, and the assumptions that we are helpless, can’t contribute and need to be in institutions will dissipate. We can begin to reverse that vicious cycle if both appearances and the realities of what we’re contributing change.
Now we have to get the needed services and supports to change the lives of people with disabilities. And that’s what the Community Choice Act is about.
The Community Choice Act is being reintroduced in Congress THIS TUESDAY, the 24th. Read more now.
Nick Dupree
Nick's Crusade
http://www.nickscrusade.org/wordpress/
Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?
Traditionally, society would tell you the banker is disabled. Dumb society. Clearly, he’s not as disabled as the basement guy! If we measure ability according to contribution, the banker is way ahead. But society usually measures things based on appearance, and the banker looks “dependent,” “confined to a wheelchair” and “trapped” to most people.
Does this mean disability is a purely social construct? And we should all go write disability studies papers about how disability is a false construct used by a pervasively ablist society to oppress those who are different? Not so fast.
It all depends on supports. If your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference, like hair color or left-handedness. You can contribute in your own way, as everyone else can. But if you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back, unable to contribute. The banker who made $100,000 will make $0 and live in a dim nursing home without the support of his assistants. Suddenly, he is MUCH MORE disabled than the basement guy (who at least always has choices). Suddenly, it’s not a social/cultural difference the banker has the luxury to debate; he is watching his peers contribute and benefit in society while he’s unable to leave his room regardless of his wishes, and the cultural assumptions of his inability have become true, a prophecy fulfilled by the system’s outdated model. He’s suddenly very different, and it’s not cultural at all. It’s a real, physical difference, and a huge barrier.
Unless we have reliable access to proper personal attendants and supports in the community, unless we pass the Community Choice Act and offer REAL choices of community living vs. living in a hopeless institution’s back ward, then debating “disability as a social construct” will be the luxury of academics, while those with severe disabilities hope the nurse will let them turn on their side today. Until we have the help we need, our problems will be very real and physical, with the invisible cultural barriers several rungs up the ladder, something we HOPE we can confront once we climb up.
And once more and more of us with severe disabilities are living independently and publicly seen doing so, the appearances, and thus the societal perceptions, will shift, and the assumptions that we are helpless, can’t contribute and need to be in institutions will dissipate. We can begin to reverse that vicious cycle if both appearances and the realities of what we’re contributing change.
Now we have to get the needed services and supports to change the lives of people with disabilities. And that’s what the Community Choice Act is about.
The Community Choice Act is being reintroduced in Congress THIS TUESDAY, the 24th. Read more now.
Nick Dupree
Nick's Crusade
http://www.nickscrusade.org/wordpress/
Monday, March 2, 2009
It seems appropriate that this demand for freedom is starting in Philadelphia...
Give Disabled a Home Choice
Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources
The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.
The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.
Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.
The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.
Why can't patients live in their communities with the same funds?
Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.
Home care can also create more jobs. And it allows people to remain productive members of their communities.
So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.
It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.
With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.
The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.
Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?
Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.
Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources
The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.
The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.
Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.
The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.
Why can't patients live in their communities with the same funds?
Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.
Home care can also create more jobs. And it allows people to remain productive members of their communities.
So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.
It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.
With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.
The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.
Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?
Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.
Tuesday, September 16, 2008
The Dead Zone
The 2008 election campaigns have included rhetoric about tax breaks for middle income families, and media coverage has included stories about families who have children with disabilities. Left out of all the election rhetoric are the candidates' positions on and commitments to those babies with disabilities who grow into adults with disabilities who all-too-often survive on extremely low incomes (less than 30% of the median income). These extremely low incomes are often the fixed benefit amounts of SSI and Social Security.
So, how does Texas stack up? Not very well at all. Texas is currently ranked 48th out of 50 states and scores extremely low in both eligibility and scope of services (followed only by Mississippi and Idaho). Here are some highlights. The entire report can be viewed here.
In this election year, politicians constantly chatter about lower taxes, smaller government and putting everyone to work. Here in reality, I hear people complain all the time about the people who 'live off the government' and, to be fair, there are people who fit that profile. However, the majority of U.S. citizens want to be productive and contribute. They'd be happy to pay taxes if it affords them a quality of life that makes them feel like a whole American citizen. Many years ago, Martin Luther King called for people to be measured by "...the content of their character, not the color of their skin," it's now time for those civil rights to be extended to people with disabilities who want the chance to be full economic citizens, rather than be relegated to a place at the bottom of an economic ladder that they cannot currently climb. There are ways to help them up the ladder, one of which is the Community Choice Act. With the socioeconomic map of the United States shifting under the pressure of institutional failures, it is imperative that we create opportunity for all citizens. We cannot risk leaving anyone in the Dead Zone.
So, how does Texas stack up? Not very well at all. Texas is currently ranked 48th out of 50 states and scores extremely low in both eligibility and scope of services (followed only by Mississippi and Idaho). Here are some highlights. The entire report can be viewed here.
- Total Score: 335.5 out of 1000
Rank: 48 out of 50 - Placing in the bottom 10 in two categories, including the one with the heaviest weight, Texas ranks a poor 48th overall. In fact, it is the only state that places consistently at the bottom, all its category-specific ranks ranging within 10 ranks. Unlike other states that have made a policy decision to cover more persons for fewer services, or vice-versa, Texas ranks extremely low in both eligibility and scope of services.
- With respect to eligibility, Texas tends to adhere closely to the minimum Federal Poverty Levels, for which it earns no points since the mandatory minimums leave many who cannot afford private health insurance without healthcare. This poor showing in eligibility in Texas means that large numbers of people are excluded from Medicaid just because of where they happen to live, and they would be covered in a state with more lenient eligibility criteria.
In this election year, politicians constantly chatter about lower taxes, smaller government and putting everyone to work. Here in reality, I hear people complain all the time about the people who 'live off the government' and, to be fair, there are people who fit that profile. However, the majority of U.S. citizens want to be productive and contribute. They'd be happy to pay taxes if it affords them a quality of life that makes them feel like a whole American citizen. Many years ago, Martin Luther King called for people to be measured by "...the content of their character, not the color of their skin," it's now time for those civil rights to be extended to people with disabilities who want the chance to be full economic citizens, rather than be relegated to a place at the bottom of an economic ladder that they cannot currently climb. There are ways to help them up the ladder, one of which is the Community Choice Act. With the socioeconomic map of the United States shifting under the pressure of institutional failures, it is imperative that we create opportunity for all citizens. We cannot risk leaving anyone in the Dead Zone.
Thursday, September 4, 2008
Don't be Fooled by Sister Sarah's Bridge to Nowhere
In her speech last night Sarah Palin made a special effort to connect with folks whose lives have been touched by disabilities. With a wink and big smile, she said you will "have a friend in the White House". However, on the off-chance that she will become the Vice President of the United States, she still won't be occupying the White House. That will fall to John McCain who has declared that he will not support the Community Choice Act. He even states that publicly in this video. John McCain is NOT a friend to people with disabilties. And, as the record apparently shows, neither is Sarah Palin. (I have been reading an Alaskan political blog called Mudflats: Tiptoeing Through The Muck of Alaskan Politics. Last night the author made a comment about Governor Palin cut funding for special needs programs in Alaska. Once he writes the full post, I will share it here.) I have no doubt she loves Trig and all of her children, but I do have doubts that she has a true idea of the extra time and attention it will take to create a full life for him.
As the primary caregiver for my husband Keith, I am appalled at the glorification of caretaking by a woman who has a whole network of people who are taking care of those 5 kids. It is a daily struggle to manage our home, the attendants, Keith's business life, my business life and, oh yeah, my identity beyond all that, a woman named Ruth who has had the same chipped nailpolish on her nails for the last few weeks. (It's not a fashion statement, it's a testament to the fact I've got other more pressing uses for my time.) Wow, I just counted up my responsibilities...looks like I've got 5 kids too. However, I don't have a whole state at my disposal and I certainly don't have national support for my work.
Without the Community Choice Act, none of us will.
As the primary caregiver for my husband Keith, I am appalled at the glorification of caretaking by a woman who has a whole network of people who are taking care of those 5 kids. It is a daily struggle to manage our home, the attendants, Keith's business life, my business life and, oh yeah, my identity beyond all that, a woman named Ruth who has had the same chipped nailpolish on her nails for the last few weeks. (It's not a fashion statement, it's a testament to the fact I've got other more pressing uses for my time.) Wow, I just counted up my responsibilities...looks like I've got 5 kids too. However, I don't have a whole state at my disposal and I certainly don't have national support for my work.
Without the Community Choice Act, none of us will.
Wednesday, September 3, 2008
Time for the Big Guns: Keith's Letter to Oprah
With Oprah's new season starting, I thought we should do our part to kick it off well. So, naturally, we thought she should hear Keith's story. Please feel free to use this letter as a basis and let her know that you think it's a great story too!
My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.
On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large & growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual.
I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.
++++++++++++++++++++++++++++++++++++++++++++++
My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.
On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large & growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual.
I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.
Tuesday, September 2, 2008
PSA: Community Choice Act
As all good public information channels must, we're having a short break in the regular programming for a Public Service Announcement. (You can thank years of watching PBS pledge drives for that, lol).
Since our sojourn into the healthcare maze, we have found one piece of legislation that has given us a bit of hope that lights the way. You may have heard Keith and I refer to the Community Choice Act on a number of occasions. I thought it would be helpful to share the information here as well as give you a quick link you can use to tell your elected officials of the vital importance of this legislation if we want to be able to live indepenent lives to the best of our abilities. Keith may be the first person you know who personalizes this need, but I am quite sure he won't be the last.
For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.
Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.
The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.
The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.
Since our sojourn into the healthcare maze, we have found one piece of legislation that has given us a bit of hope that lights the way. You may have heard Keith and I refer to the Community Choice Act on a number of occasions. I thought it would be helpful to share the information here as well as give you a quick link you can use to tell your elected officials of the vital importance of this legislation if we want to be able to live indepenent lives to the best of our abilities. Keith may be the first person you know who personalizes this need, but I am quite sure he won't be the last.
For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.
Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.
The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.
The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.
TAKE ACTION!
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