We're Number 50! Rah! Rah! Rah!
by Frank Pennisi
On March 1, 2006, the United States Department of Justice (DOJ) filed a lawsuit against New York State for failure to comply with the Help America Vote Act of 2002 (HAVA). While it is unfortunate that it had to come to this, we all knew it would. In the three years since HAVA became law, while other states were trying to comply, first the State Legislature, and later the State Board of Elections dawdled, delayed, argued, and ultimately ignored all of HAVA's deadlines, as if New York was somehow exempt from federal law.
The State Board of Elections was required to submit a plan for HAVA compliance by April 10, 2006. In typical fashion, however, what they submitted was more of an outline of a concept of an idea of what could eventually become a plan.
In its response to the State's submitted plan, DOJ wrote: "With regard to voting systems, the State proposes what can only be viewed as far less than even minimum compliance, since the interim plan deals only with compliance with Section 301's requirements of voting system accessibility for individuals with disabilities and, even then, only provides for partial--and far from full--compliance with HAVA's requirements in that regard... Specifically with regard to HAVA-compliant voting systems, the State's inability at this point to propose greater HAVA compliance than is found in its proposal is indeed regrettable and in the end does a disservice to the voters whom HAVA was intended to benefit."
The response goes on to state: "As the United States has made clear in its filings in this action, we believe strongly that the position of HAVA non-compliance in which New York finds itself is one of its own making, occasioned by inordinate delay at various levels of state government. As a result, New York did not even really begin its efforts aimed at implementation until just mere months before HAVA's requirements went into effect, literally two to three years later than other states, leaving the State further behind than any other in the country." Yay! We're Number Fifty!!
Then there is my favorite sentence in the response--one which sums up all the arrogance and incompetence that the State has displayed over the last three years, which should engender a deep sense of disgrace, but probably won't in a State that has no shame: "While the plans are thus, frankly, for the most part, very poor, they are better than nothing, and the United States is not in a position to state with assurance that the State of New York and its counties are capable of more."
I would actually beg to differ with the latter part of that sentence; I've spoken to a number of county Boards of Election and I believe that if they had been in charge, rather than the inept State Board, things would have been done correctly long ago. County Boards have been wanting to see this whole matter resolved for years, but were powerless to do anything until the State acted.
The State has proposed an interim plan to have some "accessible" ballot-marking devices available at central locations in each county for the 2006 elections, and will supposedly have fully accessible machines at every polling place by the 2007 elections. The disability community statewide was willing to wait until next year for full access, rather than forcing counties to waste money on temporary machines to be used for this year only, but, as usual, our voices were not heard. So, for this year, if people with disabilities want to use an accessible voting machine, they will have to travel to a central location in their county rather than use their own polling place.
Two of the machines available for this year, the AutoMark and the Avante SPR Vote accessible to people with almost any disability. The others being considered (at the eleventh hour, of course!) are more like variations on the old board game "Mousetrap". These machines are intricate, convoluted and confusing and often take an incredibly long time to cast a ballot.
I had the pleasure of seeing these machines at a testing event held the second week of May. This testing, hosted by the State Board, was "open to the public". It was held, however, at a golf course clubhouse 13.5 miles from downtown Albany. There was no public transportation to this location. In other states, an event "open to the public" would probably have been held at one or more central locations, probably on a bus line, but in the Empire State, we have a different way of doing things! It's a game, sort of like "Where's Waldo"! If you can find a way to get to the testing site, you win!
At least DOJ realizes that if New York is given an inch, it will take two miles. The response also says that "New York should be in full compliance with Section 301 of HAVA no later than the fall of 2007. The record to date makes clear, however, that continuing court supervision of the State's efforts will be necessary to assure that even that deadline is met." Yes, the Feds are watching us and, sad to say, that is most likely the only way we will ever see accessible voting systems in this state. Like I said, other states would probably feel ashamed, but in New York? Hey, we're Number Fifty!!!
The State Board of Elections was required to submit a plan for HAVA compliance by April 10, 2006. In typical fashion, however, what they submitted was more of an outline of a concept of an idea of what could eventually become a plan.
In its response to the State's submitted plan, DOJ wrote: "With regard to voting systems, the State proposes what can only be viewed as far less than even minimum compliance, since the interim plan deals only with compliance with Section 301's requirements of voting system accessibility for individuals with disabilities and, even then, only provides for partial--and far from full--compliance with HAVA's requirements in that regard... Specifically with regard to HAVA-compliant voting systems, the State's inability at this point to propose greater HAVA compliance than is found in its proposal is indeed regrettable and in the end does a disservice to the voters whom HAVA was intended to benefit."
The response goes on to state: "As the United States has made clear in its filings in this action, we believe strongly that the position of HAVA non-compliance in which New York finds itself is one of its own making, occasioned by inordinate delay at various levels of state government. As a result, New York did not even really begin its efforts aimed at implementation until just mere months before HAVA's requirements went into effect, literally two to three years later than other states, leaving the State further behind than any other in the country." Yay! We're Number Fifty!!
Then there is my favorite sentence in the response--one which sums up all the arrogance and incompetence that the State has displayed over the last three years, which should engender a deep sense of disgrace, but probably won't in a State that has no shame: "While the plans are thus, frankly, for the most part, very poor, they are better than nothing, and the United States is not in a position to state with assurance that the State of New York and its counties are capable of more."
I would actually beg to differ with the latter part of that sentence; I've spoken to a number of county Boards of Election and I believe that if they had been in charge, rather than the inept State Board, things would have been done correctly long ago. County Boards have been wanting to see this whole matter resolved for years, but were powerless to do anything until the State acted.
The State has proposed an interim plan to have some "accessible" ballot-marking devices available at central locations in each county for the 2006 elections, and will supposedly have fully accessible machines at every polling place by the 2007 elections. The disability community statewide was willing to wait until next year for full access, rather than forcing counties to waste money on temporary machines to be used for this year only, but, as usual, our voices were not heard. So, for this year, if people with disabilities want to use an accessible voting machine, they will have to travel to a central location in their county rather than use their own polling place.
Two of the machines available for this year, the AutoMark and the Avante SPR Vote accessible to people with almost any disability. The others being considered (at the eleventh hour, of course!) are more like variations on the old board game "Mousetrap". These machines are intricate, convoluted and confusing and often take an incredibly long time to cast a ballot.
I had the pleasure of seeing these machines at a testing event held the second week of May. This testing, hosted by the State Board, was "open to the public". It was held, however, at a golf course clubhouse 13.5 miles from downtown Albany. There was no public transportation to this location. In other states, an event "open to the public" would probably have been held at one or more central locations, probably on a bus line, but in the Empire State, we have a different way of doing things! It's a game, sort of like "Where's Waldo"! If you can find a way to get to the testing site, you win!
At least DOJ realizes that if New York is given an inch, it will take two miles. The response also says that "New York should be in full compliance with Section 301 of HAVA no later than the fall of 2007. The record to date makes clear, however, that continuing court supervision of the State's efforts will be necessary to assure that even that deadline is met." Yes, the Feds are watching us and, sad to say, that is most likely the only way we will ever see accessible voting systems in this state. Like I said, other states would probably feel ashamed, but in New York? Hey, we're Number Fifty!!!
Journey to the Center of the Universe
by Roger Sibley
History is a wonderful predictor of the present. When we are happy with something, we can look back to learn about all the wonderful people and noble efforts that led up to the present. When something does not work very well, history can also teach us how things went awry. History does not provide guidance in how to preserve or change things, but understanding how things happen in the first place can be helpful.
We New Yorkers can be very proud of the tradition of helping others that has become a part of our culture. Help is available for a wide variety of issues, and there are many stories of how lives have been improved with support from our human service system. Perhaps this makes even more poignant the dismay we feel when the system fails someone.
Our systems do not work very well with people who have been given the delightful descriptor of "dually-diagnosed". On some level it does not matter what the "dual" is--developmental disability and mental illness, or mental illness and addiction. It also doesn't matter if "dual" is two, three, or more conditions. There are also some people with significant challenges where all the systems deny eligibility, the "singly-un-diagnosed".
To understand how the systems became this way, I will begin with a simple question: "What is the center of the universe?" The Greeks had an idea a few thousand years ago, and that view was challenged by Copernicus, Galileo, and others. The question has great relevance in human services. All of our actions are predicated upon what we think is the most important thing, what comes first, the center of the universe. If you think that regulatory compliance is the center, all of your activities will be directed toward following the rules. If funding is your top priority, you will follow the money.
For a human service system to be truly effective, a person must be at the center of the universe. Because the center is not the only thing, we understand that family and friends are very close to that center. Other important things, like money and service models, have important roles, but they orbit the center further out.
For human service systems as they began and evolved in the United States over the last two centuries, the center of the universe was a professional discipline. The many agencies and programs that help people came about because professionals were very aware of the uniqueness of their own disciplines, the special challenges that people faced, and how crucial that professional approach was in providing help.
Based upon professional specialty, each of these systems has its own rules and regulations, its own bureaucracies, its own funding streams, its own agency. The Health Department does healthy things, OMRDD does developmental things, OMH does mentally ill things.
The result of this is fragmentation. People are sorted into categories. And individuals are divided into parts, with some parts seemingly OK and some parts being "problems". This fragmentation is the biggest inhibitor to what I believe is the ultimate goal of any human service system: to help people have a nice life. Having a nice life requires balance within ourselves and constructive relationships with others. The isolated and isolating approach by many systems does not advance this goal.
Human beings do not always sort well. It seems to have come as a complete surprise that we are, like it or not, pretty complicated. The physical, intellectual, emotional, and spiritual aspects of who I am are wound pretty tight. Emotional distress can lead to physical discomfort, and vice versa.
The other big problem with this discipline-centered approach is that it is inherently deficit- based. The focus is on difference, and difference is generally considered inferior or wrong. By evaluating people to find the "problem," and directing great efforts toward fixing or lessening the problem, the deficit model strengthens the process of dismembering people into parts, and separating people from one another. The major funder of services and supports for people with disabilities, Medicaid, inserts the deficit-based medical model into a wide range of services.
It would be simple if the only problem with this approach was that people felt insulted and demeaned. Unfortunately, the consequences are much worse: the deficit-based, discipline specific approach is less effective in providing meaningful help for people. For all the great things that do happen in our field, things could be better. We could spend less money, and/or spend it better. We could improve results for individuals, families, and communities. We could deepen our understanding of human development and interventions that work.
If you have read this far, you are an awfully good sport. If you are willing to entertain the idea that this fragmentation of human beings into deficit areas is a major problem, perhaps the major problem, what should we as concerned citizens do about it?
When I was a lad I had a magic tablet. It had a thin layer of plastic that I could write or draw on, and when I made a mistake or got tired of it, I could pull up the plastic sheet and all the writing would disappear, allowing me to start again. It would be nice to think that we could dismantle these human service silos and start again with the understanding of human development that exists today. It would be nice..
The good news is that there are quite a few strength-based programs that are very effective in overcoming fragmentation, but to some degree this requires them to swim upstream. The system generally, and many programs, ask, "Is she ready (eligible) for our program." The person- centered, strength-based approach asks, "What do we need to do to get our program ready for her?" The difference is not subtle, and actually following the second approach is extremely difficult.
As a provider of early childhood services in a multi-county area with a fairly low population, Franziska Racker Centers has faced this issue for decades. If we would not help a young child and family, there was not anyone else nearby to help them. This pushed us to strengthen and diversify our skills. When there were a few youngsters with significant hearing loss, we started a special preschool class for those kids. With the increased identification of children in the autism spectrum, the Centers has strengthened our services in that area.
While there have been a number of efforts toward interagency collaboration among state agencies, there is much more that needs to be done. This should be a top issue for our next Governor. The driving question should not be "does he qualify?", but "how can we help?"
It is easy to blame systems. Those of us actively engaged in the disability movement, whatever our roles, have obligations. We had a saying in the `60s, "If you are not a part of the solution, you are a part of the problem." Every day we must work to overcome fragmentation, classification, and disqualification to help each person have a chance for the nice life.
No person with significant challenges should be ignored or short-changed because his complexities do not fit into our tidy professional models. If we are smart about it, breaking own these phony barriers can make our human service systems more efficient as well as more effective. Working smarter in this case is being grounded in the realities of human development, keeping people at the center of the universe.
We New Yorkers can be very proud of the tradition of helping others that has become a part of our culture. Help is available for a wide variety of issues, and there are many stories of how lives have been improved with support from our human service system. Perhaps this makes even more poignant the dismay we feel when the system fails someone.
Our systems do not work very well with people who have been given the delightful descriptor of "dually-diagnosed". On some level it does not matter what the "dual" is--developmental disability and mental illness, or mental illness and addiction. It also doesn't matter if "dual" is two, three, or more conditions. There are also some people with significant challenges where all the systems deny eligibility, the "singly-un-diagnosed".
To understand how the systems became this way, I will begin with a simple question: "What is the center of the universe?" The Greeks had an idea a few thousand years ago, and that view was challenged by Copernicus, Galileo, and others. The question has great relevance in human services. All of our actions are predicated upon what we think is the most important thing, what comes first, the center of the universe. If you think that regulatory compliance is the center, all of your activities will be directed toward following the rules. If funding is your top priority, you will follow the money.
For a human service system to be truly effective, a person must be at the center of the universe. Because the center is not the only thing, we understand that family and friends are very close to that center. Other important things, like money and service models, have important roles, but they orbit the center further out.
For human service systems as they began and evolved in the United States over the last two centuries, the center of the universe was a professional discipline. The many agencies and programs that help people came about because professionals were very aware of the uniqueness of their own disciplines, the special challenges that people faced, and how crucial that professional approach was in providing help.
Based upon professional specialty, each of these systems has its own rules and regulations, its own bureaucracies, its own funding streams, its own agency. The Health Department does healthy things, OMRDD does developmental things, OMH does mentally ill things.
The result of this is fragmentation. People are sorted into categories. And individuals are divided into parts, with some parts seemingly OK and some parts being "problems". This fragmentation is the biggest inhibitor to what I believe is the ultimate goal of any human service system: to help people have a nice life. Having a nice life requires balance within ourselves and constructive relationships with others. The isolated and isolating approach by many systems does not advance this goal.
Human beings do not always sort well. It seems to have come as a complete surprise that we are, like it or not, pretty complicated. The physical, intellectual, emotional, and spiritual aspects of who I am are wound pretty tight. Emotional distress can lead to physical discomfort, and vice versa.
The other big problem with this discipline-centered approach is that it is inherently deficit- based. The focus is on difference, and difference is generally considered inferior or wrong. By evaluating people to find the "problem," and directing great efforts toward fixing or lessening the problem, the deficit model strengthens the process of dismembering people into parts, and separating people from one another. The major funder of services and supports for people with disabilities, Medicaid, inserts the deficit-based medical model into a wide range of services.
It would be simple if the only problem with this approach was that people felt insulted and demeaned. Unfortunately, the consequences are much worse: the deficit-based, discipline specific approach is less effective in providing meaningful help for people. For all the great things that do happen in our field, things could be better. We could spend less money, and/or spend it better. We could improve results for individuals, families, and communities. We could deepen our understanding of human development and interventions that work.
If you have read this far, you are an awfully good sport. If you are willing to entertain the idea that this fragmentation of human beings into deficit areas is a major problem, perhaps the major problem, what should we as concerned citizens do about it?
When I was a lad I had a magic tablet. It had a thin layer of plastic that I could write or draw on, and when I made a mistake or got tired of it, I could pull up the plastic sheet and all the writing would disappear, allowing me to start again. It would be nice to think that we could dismantle these human service silos and start again with the understanding of human development that exists today. It would be nice..
The good news is that there are quite a few strength-based programs that are very effective in overcoming fragmentation, but to some degree this requires them to swim upstream. The system generally, and many programs, ask, "Is she ready (eligible) for our program." The person- centered, strength-based approach asks, "What do we need to do to get our program ready for her?" The difference is not subtle, and actually following the second approach is extremely difficult.
As a provider of early childhood services in a multi-county area with a fairly low population, Franziska Racker Centers has faced this issue for decades. If we would not help a young child and family, there was not anyone else nearby to help them. This pushed us to strengthen and diversify our skills. When there were a few youngsters with significant hearing loss, we started a special preschool class for those kids. With the increased identification of children in the autism spectrum, the Centers has strengthened our services in that area.
While there have been a number of efforts toward interagency collaboration among state agencies, there is much more that needs to be done. This should be a top issue for our next Governor. The driving question should not be "does he qualify?", but "how can we help?"
It is easy to blame systems. Those of us actively engaged in the disability movement, whatever our roles, have obligations. We had a saying in the `60s, "If you are not a part of the solution, you are a part of the problem." Every day we must work to overcome fragmentation, classification, and disqualification to help each person have a chance for the nice life.
No person with significant challenges should be ignored or short-changed because his complexities do not fit into our tidy professional models. If we are smart about it, breaking own these phony barriers can make our human service systems more efficient as well as more effective. Working smarter in this case is being grounded in the realities of human development, keeping people at the center of the universe.
AccessAbility
June 2006
EDITOR IN CHIEF: MARIA DIBBLE
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
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News and Analysis
Inclusion for Students With Disabilities:
Reality or Dream?
by Christine Delany
Students with and without disabilities need and deserve the best education possible. They also need to learn to interact and develop interdependent relationships so that, as adults, they can successfully and fully participate in the mainstream of American society. Inclusion for students with disabilities is essential, not only for the benefit of disabled individuals, but for the benefit of non-disabled individuals. How do we accomplish this? And, more importantly, are we accomplishing this?
The Individuals with Disabilities Act (IDEA) and its amendments have substantially promoted and strengthened the concept of placing students with disabilities into the least restrictive environment (LRE). IDEA presumes that all children with disabilities are to be educated in regular classes (see VESID Least Restrictive Environment Implementation Policy Paper Memo, updated May 1998). The least restrictive environment (LRE) is, of course, an inclusive environment. Federal and State LRE requirements state that placement of students in a special class, separate school or other removal from the general education environment occurs only when the nature and severity of the disability is such that, even with the use of supplementary aids and services, education cannot be satisfactorily achieved.
So, what does this mean to students with disabilities? Basically, it means that school districts, their Committees for Special Education (CSE) and the school staff are responsible for providing an education for disabled students with their non-disabled peers in a general education setting unless, after exhausting all possibilities, the students must be placed in a more restrictive, or segregated, setting. Now, back to the initial question: Is this a reality or a dream?
In New York State in the mid-90s, more than one-third of students with disabilities spent more than 60% of their day in a segregated setting. More than 10% of students with disabilities were educated totally in segregated settings. In 2003-2004, 27% of students with disabilities spent more than 60% of their day in a segregated setting, while 7.3% were educated totally in segregated settings. Some progress has been made, but not enough.
In my position as Education Advocate for STIC, I have the opportunity to work with many parents and their disabled children. I work with students with a wide variety of disabilities and needs. I also have the chance to work with many of Broome County's CSEs and observe a variety of classrooms and educational settings. Many of the school districts are doing a better job of inclusion. There is still a lot to be done so that all disabled students are educated in the least restrictive environment.
Anecdotally, I have worked with schools that are doing amazing things to keep students with disabilities in the general education setting. One school has used many supports and services for a student to stay in his home school in a general education classroom; the staff and CSE are showing creativity and open-mindedness in creating an inclusive program for this student. Several years ago, this student would most likely have been placed in a completely segregated educational setting, such as BOCES PALS. Another district has worked hard to move a student from an extremely restrictive, completely segregated setting into a self-contained classroom in a general education school where he is mainstreamed for part of his day. Other districts are willing to put Behavior Intervention Plans in place and, when necessary, revise these plans, so that a student can remain in a general education classroom rather than be placed in a more restrictive environment. There are also a number of good BOCES District-Based Programs in several schools in Broome County. These District-Based Programs at least allow students to be in a general education school with the opportunity to have part of their education alongside their non-disabled peers. Many of the CSE Chairpersons truly want to keep students with disabilities in their districts in a less restrictive environment. There are undoubtedly committed, caring educators and administrators who are taking steps in the right direction, leading to positive, inclusive special education.
However, there are still concerns and areas that could be improved. There are still districts where students with disabilities (and behaviors that affect the educational process) are suspended without having proper supports in place. There are districts that are, in this writer's opinion, too quick to remove "behavior" students from general education. Another concern is that when students are unsuccessful in general education, some of the districts have no appropriate placement for the child within their district. This leads to recommendations for a placement at BOCES PALS. Districts need to show more willingness and creativity in creating programs and classrooms for students with disabilities. Additionally, some of the BOCES District-Based Programs are closing. To be fair, there is a legitimate issue of a lack of physical space for more special education classrooms in most schools. However, this still needs to be a priority for all of us. If schools didn't have the space for music programs or athletic programs, I doubt people would find that acceptable. It is not acceptable to segregate students with disabilities because there is not enough room for them.
In the last couple of years, all the integrated summer educational programs were eliminated. Students needing 12-month placement and services now receive them in a totally segregated setting, unless their parents can find and afford an integrated program that will accept their child. This is definitely a step backward. BOCES and individual school districts, as well as the community, need to step up to the plate and create inclusive summer programs. (By the way, these summer programs aren't "summer fun camp" and they don't exist to provide a special privilege or child care program that families with nondisabled children don't have access to; they are necessary so that children with very significant disabilities who learn very slowly do not lose the skills they've gained over the long summer break.)
Another concern is the attitude that students with disabilities cannot remain in their district because they can't pass the standardized tests or Regents exams, or won't be able to handle the curriculum. I understand the pressure on schools, from the state and federal levels, to meet certain academic standards, but No Child Left Behind should never mean "except for students with disabilities".
Inclusion for all students with disabilities is still a dream. We should all strive to make that dream a reality because it benefits all of us. We should praise those districts, CSEs, educators and service providers who work hard to make inclusion a reality. Each student with a disability who is successfully included in general education is a victory to celebrate. Let us not, however, forget about the students who are segregated. We need to remind each other and those who serve the educational needs of students with disabilities that every student deserves the best education possible in the least restrictive environment. The dream can become a reality.
The Individuals with Disabilities Act (IDEA) and its amendments have substantially promoted and strengthened the concept of placing students with disabilities into the least restrictive environment (LRE). IDEA presumes that all children with disabilities are to be educated in regular classes (see VESID Least Restrictive Environment Implementation Policy Paper Memo, updated May 1998). The least restrictive environment (LRE) is, of course, an inclusive environment. Federal and State LRE requirements state that placement of students in a special class, separate school or other removal from the general education environment occurs only when the nature and severity of the disability is such that, even with the use of supplementary aids and services, education cannot be satisfactorily achieved.
So, what does this mean to students with disabilities? Basically, it means that school districts, their Committees for Special Education (CSE) and the school staff are responsible for providing an education for disabled students with their non-disabled peers in a general education setting unless, after exhausting all possibilities, the students must be placed in a more restrictive, or segregated, setting. Now, back to the initial question: Is this a reality or a dream?
In New York State in the mid-90s, more than one-third of students with disabilities spent more than 60% of their day in a segregated setting. More than 10% of students with disabilities were educated totally in segregated settings. In 2003-2004, 27% of students with disabilities spent more than 60% of their day in a segregated setting, while 7.3% were educated totally in segregated settings. Some progress has been made, but not enough.
In my position as Education Advocate for STIC, I have the opportunity to work with many parents and their disabled children. I work with students with a wide variety of disabilities and needs. I also have the chance to work with many of Broome County's CSEs and observe a variety of classrooms and educational settings. Many of the school districts are doing a better job of inclusion. There is still a lot to be done so that all disabled students are educated in the least restrictive environment.
Anecdotally, I have worked with schools that are doing amazing things to keep students with disabilities in the general education setting. One school has used many supports and services for a student to stay in his home school in a general education classroom; the staff and CSE are showing creativity and open-mindedness in creating an inclusive program for this student. Several years ago, this student would most likely have been placed in a completely segregated educational setting, such as BOCES PALS. Another district has worked hard to move a student from an extremely restrictive, completely segregated setting into a self-contained classroom in a general education school where he is mainstreamed for part of his day. Other districts are willing to put Behavior Intervention Plans in place and, when necessary, revise these plans, so that a student can remain in a general education classroom rather than be placed in a more restrictive environment. There are also a number of good BOCES District-Based Programs in several schools in Broome County. These District-Based Programs at least allow students to be in a general education school with the opportunity to have part of their education alongside their non-disabled peers. Many of the CSE Chairpersons truly want to keep students with disabilities in their districts in a less restrictive environment. There are undoubtedly committed, caring educators and administrators who are taking steps in the right direction, leading to positive, inclusive special education.
However, there are still concerns and areas that could be improved. There are still districts where students with disabilities (and behaviors that affect the educational process) are suspended without having proper supports in place. There are districts that are, in this writer's opinion, too quick to remove "behavior" students from general education. Another concern is that when students are unsuccessful in general education, some of the districts have no appropriate placement for the child within their district. This leads to recommendations for a placement at BOCES PALS. Districts need to show more willingness and creativity in creating programs and classrooms for students with disabilities. Additionally, some of the BOCES District-Based Programs are closing. To be fair, there is a legitimate issue of a lack of physical space for more special education classrooms in most schools. However, this still needs to be a priority for all of us. If schools didn't have the space for music programs or athletic programs, I doubt people would find that acceptable. It is not acceptable to segregate students with disabilities because there is not enough room for them.
In the last couple of years, all the integrated summer educational programs were eliminated. Students needing 12-month placement and services now receive them in a totally segregated setting, unless their parents can find and afford an integrated program that will accept their child. This is definitely a step backward. BOCES and individual school districts, as well as the community, need to step up to the plate and create inclusive summer programs. (By the way, these summer programs aren't "summer fun camp" and they don't exist to provide a special privilege or child care program that families with nondisabled children don't have access to; they are necessary so that children with very significant disabilities who learn very slowly do not lose the skills they've gained over the long summer break.)
Another concern is the attitude that students with disabilities cannot remain in their district because they can't pass the standardized tests or Regents exams, or won't be able to handle the curriculum. I understand the pressure on schools, from the state and federal levels, to meet certain academic standards, but No Child Left Behind should never mean "except for students with disabilities".
Inclusion for all students with disabilities is still a dream. We should all strive to make that dream a reality because it benefits all of us. We should praise those districts, CSEs, educators and service providers who work hard to make inclusion a reality. Each student with a disability who is successfully included in general education is a victory to celebrate. Let us not, however, forget about the students who are segregated. We need to remind each other and those who serve the educational needs of students with disabilities that every student deserves the best education possible in the least restrictive environment. The dream can become a reality.
Look Back in Anger?
"People will not look forward to posterity who never look backward to their ancestors."
-- Edmund Burke
We reported in our last issue that the Budget Reconciliation Act of 2005 increased the federal "lookback period" to 5 years for asset transfers that could affect Medicaid eligibility. Now, thanks to renowned disability rights lawyer Valerie Bogart and her colleagues, we can explain what that means. Please note that this is a very complex subject, and people should consult an experienced Medicaid advocate, or perhaps an "elder attorney", before making decisions.
What's a Lookback?
When a person applies for certain types of Medicaid long-term care services, the government looks at the person's financial transactions over a period of time to determine whether a "penalty" for asset transfers should be imposed. This is called a "lookback", and the "lookback period" is the number of years for which the applicant must provide their financial information.
Under the old federal rules, the lookback period was 3 years for most covered asset transfers, and 5 years for transfers to trusts. The new federal law extends the lookback period to 5 years for all types of transfers, and expands the definition of "assets".
What Kinds of Long Term Care are Affected?
Under the federal rules, a lookback, with possible penalties, will occur if you apply for Medicaid-funded nursing home services or for New York's Long Term Home Health Care program (also known as the "Lombardi Program" or "Nursing Home Without Walls").
Currently in New York State, there is no lookback for other forms of community-based long-term care. However, Governor Pataki's disputed 06-07 budget proposal called for a lookback period for these programs, and it appears that this is one of the legislative overrides that Pataki is rejecting on "constitutional" grounds; therefore DOH is going ahead with implementation plans. (See This is the Way the Budget Ends... for more on the state's Medicaid budget.) If this goes through, the new lookback period for community-based services in New York will be 3 years.
What's a Penalty?
A penalty is a period of time, in months, during which Medicaid coverage for your long-term care services will be delayed. The number of months is calculated according to a formula based on the value of the assets you transferred. This formula varies with your specific situation and the area where you live, but essentially, the greater the value of the transfer, the longer the delay. During the penalty period, if you receive long-term care services you'll have to find another way to pay for them.
When Does the Penalty Period Begin?
This is one of the most important changes in the law. Under the old federal rules, the penalty period began on the first day of the month after the month when you made the transfer. For many people, this meant that by the time they actually needed long-term care services, the penalty had long expired and there was no delay in getting services paid for.
The new law is confusing on this point. However, one interpretation is that the penalty period begins on the date when you apply for Medicaid for a particular type of long- term care. In other words, if you've been receiving ordinary Medicaid State Plan personal assistance services and you apply for more comprehensive homecare under the "Nursing Home Without Walls" program, or if you've been in that program and you are now seeking to enter a nursing home, a lookback will take place when you apply and any penalty imposed will start to run on the date of your application--even if you've already been Medicaid-eligible for some years.
If Pataki's new lookback/penalty proposal for community-based services goes through, it will operate under the old rules; that is, the penalty period will begin in the month after the transfer was made.
What Assets Can I Transfer without Penalty?
The short answer is, "it depends". The rules are different not only for different types of assets, but for whom you transfer them to and why. For example, we'd like to say that you can always transfer your home to your adult child without penalty, but that's not true. Under some circumstances, such as if the child had been living in the home and providing care to you up to the time you enter the long-term care program, there's no penalty, and it makes a difference whether you're going for nursing-home placement or "Lombardi"-style homecare. You can usually transfer just about anything to a spouse (who may then have to invoke "spousal impoverishment" or "spousal refusal" rules in order to preserve your eligibility), but the other aspects of this are just too complex for us to describe here.
What's the Bottom Line?
Despite anecdotal "evidence" about wealthy people "gaming" the Medicaid system, research conducted by the Kaiser Commission on Medicaid and the Uninsured shows that very few people actually transfer substantial assets in order to qualify for Medicaid long-term care, and by the most liberal estimate, the amounts involved total only about 1% of all US Medicaid spending. If the Kaiser Commission is correct, then this really isn't a significant issue for the vast majority of people with disabilities.
In any case, we at STIC have always said that people who can afford to buy their own health coverage and/or attendant services should be expected to do so. If you have significant assets, you should plan to use them to meet your own needs, and it's unconscionable for you to give them away and expect the government to foot the bill for your costs. Long term care insurance now looks more important than ever, though it is often too expensive even for lower-middle-income people, especially if they have children to support.
The new federal law provides a pretty clear incentive for people to choose certain forms of homecare over nursing home services. But it's not as simple as that, because in New York State, if you have significant homecare needs, and you need Medicaid to pay for them, you don't necessarily have a choice; you may have to use the "Nursing Home Without Walls" program and deal with its restrictions. It's unclear whether those restrictions will also be applied to the new Nursing Home Transition and Diversion waiver, but it's quite possible that they will.
Any incentive against nursing home placement will further be diluted by Pataki's new lookback/penalty rules for other kinds of homecare, if they are actually implemented.
Looking back over all we've said, the most important thing we can say about lookbacks is: Get expert help and plan ahead.
-- Edmund Burke
We reported in our last issue that the Budget Reconciliation Act of 2005 increased the federal "lookback period" to 5 years for asset transfers that could affect Medicaid eligibility. Now, thanks to renowned disability rights lawyer Valerie Bogart and her colleagues, we can explain what that means. Please note that this is a very complex subject, and people should consult an experienced Medicaid advocate, or perhaps an "elder attorney", before making decisions.
What's a Lookback?
When a person applies for certain types of Medicaid long-term care services, the government looks at the person's financial transactions over a period of time to determine whether a "penalty" for asset transfers should be imposed. This is called a "lookback", and the "lookback period" is the number of years for which the applicant must provide their financial information.
Under the old federal rules, the lookback period was 3 years for most covered asset transfers, and 5 years for transfers to trusts. The new federal law extends the lookback period to 5 years for all types of transfers, and expands the definition of "assets".
What Kinds of Long Term Care are Affected?
Under the federal rules, a lookback, with possible penalties, will occur if you apply for Medicaid-funded nursing home services or for New York's Long Term Home Health Care program (also known as the "Lombardi Program" or "Nursing Home Without Walls").
Currently in New York State, there is no lookback for other forms of community-based long-term care. However, Governor Pataki's disputed 06-07 budget proposal called for a lookback period for these programs, and it appears that this is one of the legislative overrides that Pataki is rejecting on "constitutional" grounds; therefore DOH is going ahead with implementation plans. (See This is the Way the Budget Ends... for more on the state's Medicaid budget.) If this goes through, the new lookback period for community-based services in New York will be 3 years.
What's a Penalty?
A penalty is a period of time, in months, during which Medicaid coverage for your long-term care services will be delayed. The number of months is calculated according to a formula based on the value of the assets you transferred. This formula varies with your specific situation and the area where you live, but essentially, the greater the value of the transfer, the longer the delay. During the penalty period, if you receive long-term care services you'll have to find another way to pay for them.
When Does the Penalty Period Begin?
This is one of the most important changes in the law. Under the old federal rules, the penalty period began on the first day of the month after the month when you made the transfer. For many people, this meant that by the time they actually needed long-term care services, the penalty had long expired and there was no delay in getting services paid for.
The new law is confusing on this point. However, one interpretation is that the penalty period begins on the date when you apply for Medicaid for a particular type of long- term care. In other words, if you've been receiving ordinary Medicaid State Plan personal assistance services and you apply for more comprehensive homecare under the "Nursing Home Without Walls" program, or if you've been in that program and you are now seeking to enter a nursing home, a lookback will take place when you apply and any penalty imposed will start to run on the date of your application--even if you've already been Medicaid-eligible for some years.
If Pataki's new lookback/penalty proposal for community-based services goes through, it will operate under the old rules; that is, the penalty period will begin in the month after the transfer was made.
What Assets Can I Transfer without Penalty?
The short answer is, "it depends". The rules are different not only for different types of assets, but for whom you transfer them to and why. For example, we'd like to say that you can always transfer your home to your adult child without penalty, but that's not true. Under some circumstances, such as if the child had been living in the home and providing care to you up to the time you enter the long-term care program, there's no penalty, and it makes a difference whether you're going for nursing-home placement or "Lombardi"-style homecare. You can usually transfer just about anything to a spouse (who may then have to invoke "spousal impoverishment" or "spousal refusal" rules in order to preserve your eligibility), but the other aspects of this are just too complex for us to describe here.
What's the Bottom Line?
Despite anecdotal "evidence" about wealthy people "gaming" the Medicaid system, research conducted by the Kaiser Commission on Medicaid and the Uninsured shows that very few people actually transfer substantial assets in order to qualify for Medicaid long-term care, and by the most liberal estimate, the amounts involved total only about 1% of all US Medicaid spending. If the Kaiser Commission is correct, then this really isn't a significant issue for the vast majority of people with disabilities.
In any case, we at STIC have always said that people who can afford to buy their own health coverage and/or attendant services should be expected to do so. If you have significant assets, you should plan to use them to meet your own needs, and it's unconscionable for you to give them away and expect the government to foot the bill for your costs. Long term care insurance now looks more important than ever, though it is often too expensive even for lower-middle-income people, especially if they have children to support.
The new federal law provides a pretty clear incentive for people to choose certain forms of homecare over nursing home services. But it's not as simple as that, because in New York State, if you have significant homecare needs, and you need Medicaid to pay for them, you don't necessarily have a choice; you may have to use the "Nursing Home Without Walls" program and deal with its restrictions. It's unclear whether those restrictions will also be applied to the new Nursing Home Transition and Diversion waiver, but it's quite possible that they will.
Any incentive against nursing home placement will further be diluted by Pataki's new lookback/penalty rules for other kinds of homecare, if they are actually implemented.
Looking back over all we've said, the most important thing we can say about lookbacks is: Get expert help and plan ahead.
Nursing Facility Transition and Diversion Waiver
Under Attack by CMS Bureaucrats
by Bruce Darling, NYS ADAPT
Advocates in New York State: There is an URGENT ISSUE that we need to address regarding the new Nursing Facility Transition and Diversion Waiver.
Jargon Warning
DO NOT FEAR! Although this article includes a discussion of Medicaid eligibility that may intimidate people, it is very important that the disability and senior communities take action on this critical issue! We have made every effort to make this issue understandable, and included examples to illustrate the problem. If you really don't want to know the details you can skip down to the section headed "To Sum This Up ..."
Background
After years of advocacy by the disability and aging communities, New York State prepared an application for the Nursing Facility Transition and Diversion Medicaid Waiver. The waiver application was submitted to the Centers for Medicare and Medicaid Services (CMS) for their approval. This waiver will allow nursing facility-eligible individuals who are 18 years of age or older and on Medicaid to receive community-based services as an alternative to institutional placement. This waiver blends the approach of two other successful waivers: the Long Term Home Health Care Program and the Traumatic Brain Injury Waiver.
During the waiver approval process, CMS notified New York State that it is changing a longstanding interpretation of federal rules on how income should be handled if there is a "community spouse". Under the old interpretation (which is currently the approach for eligibility for people in nursing homes or the other waivers), institutional income and resource rules apply post-eligibility. This means that a "community spouse" gets to keep up to a total of $2,489 in monthly income. If the "community spouse" does not personally receive that much income, they can receive the difference from the "institutional or disabled spouse".
For example, a husband becomes disabled and needs nursing facility placement or services under the Long Term Home Health Care program and the wife only has a small social security check of her own (roughly $700). Under the current system, the wife would be able to receive up to $1,789 of monthly income from the husband to supplement her small income living alone in the community. She would have up to $2,489 each month to live on.
Under the new CMS interpretation, these rules won't apply to the Nursing Facility Transition and Diversion Waiver.
Under this new interpretation, CMS won't allow the "community spouse" to receive any additional income from their spouse. The "community spouse" is only able to keep the income they personally receive. CMS will also require the spouse receiving waiver services to spend down to the Medicaid income level for one ($692), but will allow the $20 SSI-related income disregard, so the spouse receiving services under the waiver can keep a total of $712.
This means that in our example the couple living together in the community would only have $1,412 for both of them to live on compared to the $2,489 that the wife would have to live on alone if her husband were placed in a nursing home.
This policy would allow the "community spouse" to keep all of her income. However, this "benefit" would only affect a few people with much higher incomes. In fact the most common situation is for a woman to have a husband who becomes disabled first. Older women typically receive much smaller Social Security payments because they have more limited work histories and would be particularly hurt if they wanted their husband to come home on the waiver. Under the new CMS interpretation middle-income and poorer people simply will not be able to afford to participate in the waiver!
Look at the numbers more closely.
To Sum This Up ...
CMS has changed a longstanding even-handed policy where institutional income and resource rules apply post-eligibility for Medicaid waivers. This new CMS policy interpretation reduces the monthly income for people living on the waiver and creates a strong financial incentive for people to institutionalize their spouse.
This interpretation must change!
Please take action now by emailing CMS using CDR's CapWiz system. The link is:
http://capwiz.com/rochestercdr/issues/alert/?alertid=8788736&type=CU&show_alert=1
It is imperative that we blast CMS with as many emails as we can about this critical issue!
Jargon Warning
DO NOT FEAR! Although this article includes a discussion of Medicaid eligibility that may intimidate people, it is very important that the disability and senior communities take action on this critical issue! We have made every effort to make this issue understandable, and included examples to illustrate the problem. If you really don't want to know the details you can skip down to the section headed "To Sum This Up ..."
Background
After years of advocacy by the disability and aging communities, New York State prepared an application for the Nursing Facility Transition and Diversion Medicaid Waiver. The waiver application was submitted to the Centers for Medicare and Medicaid Services (CMS) for their approval. This waiver will allow nursing facility-eligible individuals who are 18 years of age or older and on Medicaid to receive community-based services as an alternative to institutional placement. This waiver blends the approach of two other successful waivers: the Long Term Home Health Care Program and the Traumatic Brain Injury Waiver.
During the waiver approval process, CMS notified New York State that it is changing a longstanding interpretation of federal rules on how income should be handled if there is a "community spouse". Under the old interpretation (which is currently the approach for eligibility for people in nursing homes or the other waivers), institutional income and resource rules apply post-eligibility. This means that a "community spouse" gets to keep up to a total of $2,489 in monthly income. If the "community spouse" does not personally receive that much income, they can receive the difference from the "institutional or disabled spouse".
For example, a husband becomes disabled and needs nursing facility placement or services under the Long Term Home Health Care program and the wife only has a small social security check of her own (roughly $700). Under the current system, the wife would be able to receive up to $1,789 of monthly income from the husband to supplement her small income living alone in the community. She would have up to $2,489 each month to live on.
Under the new CMS interpretation, these rules won't apply to the Nursing Facility Transition and Diversion Waiver.
Under this new interpretation, CMS won't allow the "community spouse" to receive any additional income from their spouse. The "community spouse" is only able to keep the income they personally receive. CMS will also require the spouse receiving waiver services to spend down to the Medicaid income level for one ($692), but will allow the $20 SSI-related income disregard, so the spouse receiving services under the waiver can keep a total of $712.
This means that in our example the couple living together in the community would only have $1,412 for both of them to live on compared to the $2,489 that the wife would have to live on alone if her husband were placed in a nursing home.
This policy would allow the "community spouse" to keep all of her income. However, this "benefit" would only affect a few people with much higher incomes. In fact the most common situation is for a woman to have a husband who becomes disabled first. Older women typically receive much smaller Social Security payments because they have more limited work histories and would be particularly hurt if they wanted their husband to come home on the waiver. Under the new CMS interpretation middle-income and poorer people simply will not be able to afford to participate in the waiver!
Look at the numbers more closely.
Total Monthly Income
Disabled husband's monthly income: $1,800 Wife's monthly income: $ 700 Total monthly income: $2,500
Wife's Income with Husband in Nursing Facility
Wife keeps her income: $ 700 Wife receives a portion of husband's income: $1,789 Total income for wife living alone: $2,489
Couple's Income Living Together in Community on WaiverThis policy creates a clear financial incentive to institutionalize a spouse. In this example, a woman would actually have over $1,000 more to live on each month if she lived alone and placed her husband in a nursing facility than the two of them would have if they lived together on the waiver!
Wife keeps her income: $ 700 Husband keeps income at Medicaid level for one: $ 692 Husband keeps $20 Income Disregard: $ 20 Total income for couple living together: $1,412
To Sum This Up ...
CMS has changed a longstanding even-handed policy where institutional income and resource rules apply post-eligibility for Medicaid waivers. This new CMS policy interpretation reduces the monthly income for people living on the waiver and creates a strong financial incentive for people to institutionalize their spouse.
This interpretation must change!
Please take action now by emailing CMS using CDR's CapWiz system. The link is:
http://capwiz.com/rochestercdr/issues/alert/?alertid=8788736&type=CU&show_alert=1
It is imperative that we blast CMS with as many emails as we can about this critical issue!
NYS Part D Wrap-Around Changes
New York's Part D "wrap-around" program uses Medicaid to pay for some drugs for people who receive both Medicaid and Medicare ("dual eligibles") when their Part D plans won't cover them. DOH has announced changes to this program in the wake of the budget debacle, effective June 28, 2006:
1. Coverage limited to 4 drug "classes":
2. Coverage expanded to address quantity and treatment limitations:
DOH had originally said that dual-eligibles who couldn't get enough of a Part-D covered drug due to dosage limitations, or who were inappropriately subjected to "stepped" or other treatment limitations, would be out of luck. These limits have been dropped from the wrap-around. Effective June 28, 2006, Medicaid will pay for drugs in the 4 classes for "dual eligibles" when:
3. Approval process simplified:
As we read DOH's new rules, it's no longer necessary to appeal a coverage denial and have the appeal turned down before the wrap-around will pay for a drug. Instead, the pharmacy simply needs to document an initial denial of payment. DOH still expects pharmacists and physicians to request "exceptions" from Part D plan providers in these situations, but will pay for non- covered drugs while awaiting the provider's response.
There could be more changes to this program if budget negotiations or lawsuit threats bear fruit. We'll let you know.
1. Coverage limited to 4 drug "classes":
- Atypical Antipsychotics
- Antidepressants
- Antiretrovirals for HIV/AIDS treatment
- Immunosuppressants for transplants
2. Coverage expanded to address quantity and treatment limitations:
DOH had originally said that dual-eligibles who couldn't get enough of a Part-D covered drug due to dosage limitations, or who were inappropriately subjected to "stepped" or other treatment limitations, would be out of luck. These limits have been dropped from the wrap-around. Effective June 28, 2006, Medicaid will pay for drugs in the 4 classes for "dual eligibles" when:
- The drug isn't covered by the person's plan
- The patient "doesn't meet the plan's utilization management requirements"
- When the plan limits quantity below the prescribed amount
3. Approval process simplified:
As we read DOH's new rules, it's no longer necessary to appeal a coverage denial and have the appeal turned down before the wrap-around will pay for a drug. Instead, the pharmacy simply needs to document an initial denial of payment. DOH still expects pharmacists and physicians to request "exceptions" from Part D plan providers in these situations, but will pay for non- covered drugs while awaiting the provider's response.
There could be more changes to this program if budget negotiations or lawsuit threats bear fruit. We'll let you know.
State Sued for Sending People with
Mental Disabilities to Nursing Homes
In March the New York Times reported that downstate disability legal advocacy groups were suing New York State under the Americans with Disabilities Act to stop its illegal practice of incarcerating people with mental illnesses in nursing homes.
According to the advocates, about 1,000 people have been discharged from state psychiatric hospitals to nursing homes over the past few years. Although they are not considered dangerous to themselves or others, and therefore do not meet legal standards for institutional commitment, the advocates say that they have virtually no freedom of movement, and that most of them do not receive any services related to their disabilities other than medication management.
The advocates contend that the nursing home placements violate Title II of the ADA, which makes discrimination on the basis of disability in the provision of programs and services by state governments illegal. New York State provides comprehensive community-based services to formerly- institutionalized people with other types of disabilities, but resists doing so for people with mental disabilities because the state does not have a mechanism to use federal funds for the purpose. Thus, while it would be much less costly overall to provide community-based services to this group than to incarcerate them in nursing homes, state officials believe they save money by doing the latter because federal Medicaid pays part of the nursing home costs, while community- based services for people with mental disabilities are 100% state-funded. We doubt this is true, because the federal government only pays half the cost of a nursing home placement--leaving the state to cover the other 50%--while the average total cost of equivalent community-based services for the same person is only about 20% of the average total nursing home cost. In any case, the US Supreme Court has ruled, in its Olmstead decision, that lack of availability of specific funding streams for community-based services is no excuse for discriminatory treatment of different disability groups, and that states have the ability and responsibility to allocate funds in ways that avoid such discrimination.
According to the advocates, about 1,000 people have been discharged from state psychiatric hospitals to nursing homes over the past few years. Although they are not considered dangerous to themselves or others, and therefore do not meet legal standards for institutional commitment, the advocates say that they have virtually no freedom of movement, and that most of them do not receive any services related to their disabilities other than medication management.
The advocates contend that the nursing home placements violate Title II of the ADA, which makes discrimination on the basis of disability in the provision of programs and services by state governments illegal. New York State provides comprehensive community-based services to formerly- institutionalized people with other types of disabilities, but resists doing so for people with mental disabilities because the state does not have a mechanism to use federal funds for the purpose. Thus, while it would be much less costly overall to provide community-based services to this group than to incarcerate them in nursing homes, state officials believe they save money by doing the latter because federal Medicaid pays part of the nursing home costs, while community- based services for people with mental disabilities are 100% state-funded. We doubt this is true, because the federal government only pays half the cost of a nursing home placement--leaving the state to cover the other 50%--while the average total cost of equivalent community-based services for the same person is only about 20% of the average total nursing home cost. In any case, the US Supreme Court has ruled, in its Olmstead decision, that lack of availability of specific funding streams for community-based services is no excuse for discriminatory treatment of different disability groups, and that states have the ability and responsibility to allocate funds in ways that avoid such discrimination.
This is the Way the Budget Ends:
Not with a Bang but a Whimper
(Sorry, T.S.)
This year's state budget process was a colossal train wreck. The Legislature passed a budget several billion dollars larger than what Governor Pataki wanted, so Pataki line-item vetoed about $3 billion worth of items. The Legislature overrode those vetoes, and then Pataki refused to release most of the money restored by those overrides, claiming they were unconstitutional. At press time, there were still voices singing in the wind: Pataki crowing that "the budget is over"; Republican Senate Majority Leader Joe Bruno whispering that "negotiations are continuing". Meanwhile, several programs important to New Yorkers with disabilities appear to have been damaged, perhaps beyond hope of repair.
This brouhaha arose from two factors: Pataki's presidential ambitions, and the intense dislike that all three top NYS leaders--Pataki, Bruno and Assembly Speaker Sheldon Silver--feel for each other and which has rendered them hollow men, unable to work together professionally. This year the personal feud was renewed over a fatuous and bald attempt by Senate Republicans to bribe voters with a one-time, trivial (a couple hundred dollars for most people) property tax rebate that would have been mailed out just before the election. Bruno reportedly fears that the Republicans could lose their Senate majority in November. Although downstate voters ousted a couple Republican Senators in favor of Democrats in 2004, and almost booted a third, there doesn't seem to be any real danger of a lost kingdom in the Senate this fall. However, Pataki had his own, smaller school tax cut plan that the Senate rejected, and this appears to have enraged him. Pataki has also been trying to position himself as a fiscal conservative to curry favor with the national Republican Party as a presidential candidate in 2008, although his tendency to show up dead last in preference polls of party activists suggests this is the hope only of an empty man.
The biggest pot of unreleased funds contains about $1.25 billion in Medicaid spending. We can't get firm details on what's included here, but some sources are reporting that the Preferred Drug Program and Medicaid income-eligibility rules are affected.
As we reported last time, Pataki's 06-07 budget proposed to eliminate the "doctor has the last word" provision from the Medicaid Preferred Drug program, which was part of a negotiated agreement between the Governor and Legislature that created the program last year. This provision ensured that a Medicaid recipient could not be denied coverage for a non-preferred drug if the recipient's physician insisted it was the only appropriate treatment. There was an estimate of cost savings attached to this proposal in the budget. The Legislature's budget bill "restored" those "savings". The Governor vetoed the "restoration" on grounds that his proposal was a rules change which, under the state Constitution, a Legislative budget bill can neither "restore" nor override.
In any case, the new rules issued by the state Department of Health (DOH) to implement this change don't look very onerous to us. A "prior authorization" procedure for non-preferred drugs is being phased in, with several drug "classes" added in each phase. The first phase begins on June 28. Prescribers must have a "prior authorization number" to write on prescriptions for non- preferred drugs, which they can get by calling a 24/7 telephone hotline and answering "Yes" to one of three simple questions. The questions are: "Has the patient experienced a treatment failure with the preferred drug?"; "Has the patient experienced an adverse reaction with the preferred drug?"; and, "Is there a documented history of successful therapeutic control with a non-preferred drug and transition to a preferred drug is medically contraindicated?" In other words, if there's a legitimate reason for continuing to use the non-preferred drug, it can be prescribed. Also affected here, according to some sources, was a rule that cost would "not be a factor" in determining what drugs were on the Preferred Drug list.
We also reported that Pataki wanted to eliminate "spousal refusal" for homecare recipients. This rule essentially removes a spouse's income from consideration when determining whether a person seeking homecare is financially eligible for Medicaid. Apparently the Legislature's rejection of this proposal didn't pass constitutional muster in Pataki's view either. As we've reported, there's a similar provision, "spousal impoverishment", for people seeking Medicaid to cover nursing home costs, and eliminating the homecare provision while retaining the nursing home rule creates an incentive to put people in extremely expensive institutional settings instead of keeping them at home at a much lower cost. Apparently this point has finally sunk in. Not only is DOH preparing procedures to end "spousal refusal"; they're applying for a federal waiver to end "spousal impoverishment" as well.
According to one source, also on the line are a Pataki proposal to apply a new 3-year "lookback period" to asset transfers for people seeking Medicaid coverage for some community-based services (see Look Back in Anger? for an explanation of "lookback periods"), and alleged cancellation of "parental refusal" rules that let some children with significant disabilities receive Medicaid-funded services without considering their parents' income. The latter seems inconceivable since this feature is built into OMRDD's omnibus Home and Community Based Services waiver program, and STIC was unable to independently verify either of these items at press time.
We have definite documentation that part of New York's "wrap around" for Medicare Part D prescription drug coverage did not survive. We reported last time on a bill to provide an "emergency" wrap-around for "dual eligibles" who lost their Medicaid when the new Medicare law went into effect, and who were having trouble getting medications under Part D because of "glitches" in the new system. The Legislature passed that bill, Pataki vetoed it, and the Legislature overrode the veto in February. Pataki's budget bill then proposed to end that program on July 1, 2006. The Legislature "restored" the program and overrode Pataki's veto of the "restoration", but Pataki won't release the funds. DOH has also announced that the "regular" Medicaid wrap-around, which covers drugs for dual-eligibles that aren't on their plan formularies and for which plan providers have rejected an appeal, will be significantly changed in both positive and negative ways (see NYS Part D Wrap-Around Changes).
Another override that won't hold up involves a small amount of money designated to ensure that people in the Family Health Plus program won't be denied services because they can't afford the co-pays.
Several of Pataki's vetoes were for cost-savings reasons only. As we understand it, the Legislature's overrides of these items will stand. Among the most important of these items are:
Family Health Plus will remain available to people who work for employers with more than 100 employees.
Families who lose eligibility for Medicaid or Family Health Plus due to temporary fluctuations in income will be able to stay in those programs for up to 6 months--so they don't have to re- apply and face multi-month delays when their incomes drop again.
Funding for community-based services and supported housing for people with mental disabilities was restored.
Lots of people are outraged over the Governor's actions, and they are pointing out that he provoked the "constitutional crisis" by deliberately including non-budget items in his budget proposal in order to make them "un-override-able", something that is probably as unconstitutional as some of the Legislature's restorations.
We've heard noises about lawsuits from various quarters, including the Legislature, unions, medical trade associations, and advocacy groups, to try to force Pataki to release the overridden funds, but at press time these threats remained gestures without motion; no one had filed any papers. Any such suit would drag on into the next budget cycle and beyond, by which point Pataki will be gone. If the incoming governor fought the suits and lost, there's still no guarantee that anything would change. Pataki has already demonstrated, in the recent education funding case, that a governor can ignore court orders with impunity for years.
We urge caution on the part of those who believe that Democrat Eliot Spitzer, the gubernatorial front-runner, would be much friendlier to people who use Medicaid. Pataki's predecessor, the renowned alleged "liberal" Mario Cuomo, proposed Medicaid cuts year after year just as Pataki has done. Spitzer has already publicly acknowledged the constant economic pressure to cut Medicaid spending, and we expect that his first budget proposal will try to reduce the program by $1 billion or more, just as almost every governor's budget has done for the past 25 years.
The best people with disabilities can hope for right now is that our leaders do not grope together and avoid speech, but rather that Bruno is telling the truth when he claims that ongoing negotiations may get some funds restored before the Legislature adjourns in June. Frankly, between that idea and reality, all we see are shadows.
This brouhaha arose from two factors: Pataki's presidential ambitions, and the intense dislike that all three top NYS leaders--Pataki, Bruno and Assembly Speaker Sheldon Silver--feel for each other and which has rendered them hollow men, unable to work together professionally. This year the personal feud was renewed over a fatuous and bald attempt by Senate Republicans to bribe voters with a one-time, trivial (a couple hundred dollars for most people) property tax rebate that would have been mailed out just before the election. Bruno reportedly fears that the Republicans could lose their Senate majority in November. Although downstate voters ousted a couple Republican Senators in favor of Democrats in 2004, and almost booted a third, there doesn't seem to be any real danger of a lost kingdom in the Senate this fall. However, Pataki had his own, smaller school tax cut plan that the Senate rejected, and this appears to have enraged him. Pataki has also been trying to position himself as a fiscal conservative to curry favor with the national Republican Party as a presidential candidate in 2008, although his tendency to show up dead last in preference polls of party activists suggests this is the hope only of an empty man.
The biggest pot of unreleased funds contains about $1.25 billion in Medicaid spending. We can't get firm details on what's included here, but some sources are reporting that the Preferred Drug Program and Medicaid income-eligibility rules are affected.
As we reported last time, Pataki's 06-07 budget proposed to eliminate the "doctor has the last word" provision from the Medicaid Preferred Drug program, which was part of a negotiated agreement between the Governor and Legislature that created the program last year. This provision ensured that a Medicaid recipient could not be denied coverage for a non-preferred drug if the recipient's physician insisted it was the only appropriate treatment. There was an estimate of cost savings attached to this proposal in the budget. The Legislature's budget bill "restored" those "savings". The Governor vetoed the "restoration" on grounds that his proposal was a rules change which, under the state Constitution, a Legislative budget bill can neither "restore" nor override.
In any case, the new rules issued by the state Department of Health (DOH) to implement this change don't look very onerous to us. A "prior authorization" procedure for non-preferred drugs is being phased in, with several drug "classes" added in each phase. The first phase begins on June 28. Prescribers must have a "prior authorization number" to write on prescriptions for non- preferred drugs, which they can get by calling a 24/7 telephone hotline and answering "Yes" to one of three simple questions. The questions are: "Has the patient experienced a treatment failure with the preferred drug?"; "Has the patient experienced an adverse reaction with the preferred drug?"; and, "Is there a documented history of successful therapeutic control with a non-preferred drug and transition to a preferred drug is medically contraindicated?" In other words, if there's a legitimate reason for continuing to use the non-preferred drug, it can be prescribed. Also affected here, according to some sources, was a rule that cost would "not be a factor" in determining what drugs were on the Preferred Drug list.
We also reported that Pataki wanted to eliminate "spousal refusal" for homecare recipients. This rule essentially removes a spouse's income from consideration when determining whether a person seeking homecare is financially eligible for Medicaid. Apparently the Legislature's rejection of this proposal didn't pass constitutional muster in Pataki's view either. As we've reported, there's a similar provision, "spousal impoverishment", for people seeking Medicaid to cover nursing home costs, and eliminating the homecare provision while retaining the nursing home rule creates an incentive to put people in extremely expensive institutional settings instead of keeping them at home at a much lower cost. Apparently this point has finally sunk in. Not only is DOH preparing procedures to end "spousal refusal"; they're applying for a federal waiver to end "spousal impoverishment" as well.
According to one source, also on the line are a Pataki proposal to apply a new 3-year "lookback period" to asset transfers for people seeking Medicaid coverage for some community-based services (see Look Back in Anger? for an explanation of "lookback periods"), and alleged cancellation of "parental refusal" rules that let some children with significant disabilities receive Medicaid-funded services without considering their parents' income. The latter seems inconceivable since this feature is built into OMRDD's omnibus Home and Community Based Services waiver program, and STIC was unable to independently verify either of these items at press time.
We have definite documentation that part of New York's "wrap around" for Medicare Part D prescription drug coverage did not survive. We reported last time on a bill to provide an "emergency" wrap-around for "dual eligibles" who lost their Medicaid when the new Medicare law went into effect, and who were having trouble getting medications under Part D because of "glitches" in the new system. The Legislature passed that bill, Pataki vetoed it, and the Legislature overrode the veto in February. Pataki's budget bill then proposed to end that program on July 1, 2006. The Legislature "restored" the program and overrode Pataki's veto of the "restoration", but Pataki won't release the funds. DOH has also announced that the "regular" Medicaid wrap-around, which covers drugs for dual-eligibles that aren't on their plan formularies and for which plan providers have rejected an appeal, will be significantly changed in both positive and negative ways (see NYS Part D Wrap-Around Changes).
Another override that won't hold up involves a small amount of money designated to ensure that people in the Family Health Plus program won't be denied services because they can't afford the co-pays.
Several of Pataki's vetoes were for cost-savings reasons only. As we understand it, the Legislature's overrides of these items will stand. Among the most important of these items are:
Family Health Plus will remain available to people who work for employers with more than 100 employees.
Families who lose eligibility for Medicaid or Family Health Plus due to temporary fluctuations in income will be able to stay in those programs for up to 6 months--so they don't have to re- apply and face multi-month delays when their incomes drop again.
Funding for community-based services and supported housing for people with mental disabilities was restored.
Lots of people are outraged over the Governor's actions, and they are pointing out that he provoked the "constitutional crisis" by deliberately including non-budget items in his budget proposal in order to make them "un-override-able", something that is probably as unconstitutional as some of the Legislature's restorations.
We've heard noises about lawsuits from various quarters, including the Legislature, unions, medical trade associations, and advocacy groups, to try to force Pataki to release the overridden funds, but at press time these threats remained gestures without motion; no one had filed any papers. Any such suit would drag on into the next budget cycle and beyond, by which point Pataki will be gone. If the incoming governor fought the suits and lost, there's still no guarantee that anything would change. Pataki has already demonstrated, in the recent education funding case, that a governor can ignore court orders with impunity for years.
We urge caution on the part of those who believe that Democrat Eliot Spitzer, the gubernatorial front-runner, would be much friendlier to people who use Medicaid. Pataki's predecessor, the renowned alleged "liberal" Mario Cuomo, proposed Medicaid cuts year after year just as Pataki has done. Spitzer has already publicly acknowledged the constant economic pressure to cut Medicaid spending, and we expect that his first budget proposal will try to reduce the program by $1 billion or more, just as almost every governor's budget has done for the past 25 years.
The best people with disabilities can hope for right now is that our leaders do not grope together and avoid speech, but rather that Bruno is telling the truth when he claims that ongoing negotiations may get some funds restored before the Legislature adjourns in June. Frankly, between that idea and reality, all we see are shadows.
Timothy's Law
by Adam Cybulski
If you were in downtown Binghamton on April 21 between noon and one pm, or if you watched the local news that night, you probably noticed that a large group of people gathered that day for a rally to support Timothy's Law. It's been a while since we've done an article on Timothy's Law, so this article is here to try and answer any questions you might have about what it is, and where it's headed.
Timothy's Law is named after Timothy O'Clair. Timothy's family spent five years trying to get Timothy appropriate treatment for an emotional disorder. Unfortunately, like all private insurers in New York, the O'Clairs' insurance placed limits on mental health and substance abuse coverage. Unable to pay for the services Timothy needed, the O'Clairs were forced to turn him over to foster care. Once the state takes custody of a child, it decides where the child will live, and Medicaid pays for the child's treatment. Foster care tore the family apart, and forced Timothy to receive treatments far from home. Three weeks after Timothy had returned home from a residential care facility, he hung himself in his closet, just seven weeks before his thirteenth birthday.
Timothy's Law is what is known as a "mental health parity" law. It would require all private insurers to offer the same levels of coverage for mental health and substance abuse services as they do for physical health services. There are already similar parity laws in 33 states. Once again, New York is well behind the curve. Timothy's Law has been passed as various bills in the State Assembly since 2003. To date, no mental health parity law has ever passed in the Senate. There are currently two "parity" bills on the table in the Senate. The first bill is S. 6735-a, which is a very comprehensive parity bill, and is supported by the Timothy's Law Coalition (of which STIC is a member). The second bill is S. 1672, sponsored by our very own Senator Libous. This second bill has several problems, and is not supported by the coalition.
Senator Libous claims that Timothy's Law would place an unfair financial burden on small businesses. Libous's bill allows businesses with fewer than 50 employees to opt out of parity coverage. This is a terrible mistake. First, it goes against the core beliefs of equality that our nation was founded on. Why should the over 1 million New Yorkers working for small businesses not be offered the same rights as those working for large businesses? Second, there is no "unfair financial burden." According to a 2002 study of the effects of similar legislation in other states conducted by PriceWaterhouseCoopers, the increase in premiums for mental health parity would be $1.26 per month. Even if a business had exactly 50 employees, the maximum allowed to remain exempt, their health insurance costs would rise a total of $63 per month, and only $756 per year. Is it really worth the savings to deny families the medical coverage they need? Finally, this exemption will, in the end, hurt small businesses. Several studies have shown that the small up-front cost to provide mental health coverage is more than returned in increased productivity and a decline in absenteeism. Remember how our hypothetical company with exactly 50 employees would have to spend $756 per year if it were required to provide parity coverage? Well according to the "depression calculator" available online from the MacArthur Initiative on Depression and Primary Care at Dartmouth & Duke http://www.depression-primarycare.org/organizations/employers/calculator/), depression alone (excluding all other mental conditions and substance abuse) costs a business with only seven employees $810 per year in lost productivity. The estimated cost for our business with 50 employees? $14,949, almost 20 times what it would cost the business if it were required to pay for insurance that included mental health parity.
The other major problem with Libous' bill is that it is very limited in its coverage. Libous' bill restricts parity coverage to what it defines as "biologically based" disorders, which it then further defines as "Schizophrenia, Schizoaffective Disorder, Major Depression, Bipolar Disorder, Delusional Disorders, Paranoia, Panic Disorder, Obsessive Compulsive Disorder, Bulimia and Anorexia". Libous' intent here was to systematically exclude substance abuse services from coverage. What Libous has ignored is that individuals with untreated mental illnesses may have resorted to self-medicating. At this point, addiction and mental illness become inseparable from a treatment standpoint. It does little good to only treat half of the problem, and failing to treat the addiction side of a disorder will only allow it to worsen, costing more to treat in the long run.
In contrast to these shortcomings, S. 6735-a contains no exemptions. All health insurance policies issued in New York would be required to have equal limits for mental and physical coverage. S. 6735-a also requires much more comprehensive coverage; in addition to requiring substance abuse and addiction services, S. 6735-a requires that "[insurers] SHALL provide. coverage for the diagnosis and treatment of ALL mental, nervous or emotional disorders or ailments. AS DEFINED BY THE DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERSS, FOURTH EDITION (DSM IV-TR), OF THE AMERICAN PSYCHIATRIC ASSOCIATION [emphasis in original]." The American Psychiatric Association, being far better qualified than the Honorable Senator Libous and his distinguished colleagues in the Senate, defines mental illness as any abnormal functioning of the brain.
In conclusion, there is only one true parity bill in the Senate today, S. 6735-a. Libous' bill is a weak attempt to appease parity advocates, and it lacks in scope and coverage. I would encourage you to call your state senators and tell them that you want them to support the real Timothy's Law, S. 6735-a.
Timothy's Law is named after Timothy O'Clair. Timothy's family spent five years trying to get Timothy appropriate treatment for an emotional disorder. Unfortunately, like all private insurers in New York, the O'Clairs' insurance placed limits on mental health and substance abuse coverage. Unable to pay for the services Timothy needed, the O'Clairs were forced to turn him over to foster care. Once the state takes custody of a child, it decides where the child will live, and Medicaid pays for the child's treatment. Foster care tore the family apart, and forced Timothy to receive treatments far from home. Three weeks after Timothy had returned home from a residential care facility, he hung himself in his closet, just seven weeks before his thirteenth birthday.
Timothy's Law is what is known as a "mental health parity" law. It would require all private insurers to offer the same levels of coverage for mental health and substance abuse services as they do for physical health services. There are already similar parity laws in 33 states. Once again, New York is well behind the curve. Timothy's Law has been passed as various bills in the State Assembly since 2003. To date, no mental health parity law has ever passed in the Senate. There are currently two "parity" bills on the table in the Senate. The first bill is S. 6735-a, which is a very comprehensive parity bill, and is supported by the Timothy's Law Coalition (of which STIC is a member). The second bill is S. 1672, sponsored by our very own Senator Libous. This second bill has several problems, and is not supported by the coalition.
Senator Libous claims that Timothy's Law would place an unfair financial burden on small businesses. Libous's bill allows businesses with fewer than 50 employees to opt out of parity coverage. This is a terrible mistake. First, it goes against the core beliefs of equality that our nation was founded on. Why should the over 1 million New Yorkers working for small businesses not be offered the same rights as those working for large businesses? Second, there is no "unfair financial burden." According to a 2002 study of the effects of similar legislation in other states conducted by PriceWaterhouseCoopers, the increase in premiums for mental health parity would be $1.26 per month. Even if a business had exactly 50 employees, the maximum allowed to remain exempt, their health insurance costs would rise a total of $63 per month, and only $756 per year. Is it really worth the savings to deny families the medical coverage they need? Finally, this exemption will, in the end, hurt small businesses. Several studies have shown that the small up-front cost to provide mental health coverage is more than returned in increased productivity and a decline in absenteeism. Remember how our hypothetical company with exactly 50 employees would have to spend $756 per year if it were required to provide parity coverage? Well according to the "depression calculator" available online from the MacArthur Initiative on Depression and Primary Care at Dartmouth & Duke http://www.depression-primarycare.org/organizations/employers/calculator/), depression alone (excluding all other mental conditions and substance abuse) costs a business with only seven employees $810 per year in lost productivity. The estimated cost for our business with 50 employees? $14,949, almost 20 times what it would cost the business if it were required to pay for insurance that included mental health parity.
The other major problem with Libous' bill is that it is very limited in its coverage. Libous' bill restricts parity coverage to what it defines as "biologically based" disorders, which it then further defines as "Schizophrenia, Schizoaffective Disorder, Major Depression, Bipolar Disorder, Delusional Disorders, Paranoia, Panic Disorder, Obsessive Compulsive Disorder, Bulimia and Anorexia". Libous' intent here was to systematically exclude substance abuse services from coverage. What Libous has ignored is that individuals with untreated mental illnesses may have resorted to self-medicating. At this point, addiction and mental illness become inseparable from a treatment standpoint. It does little good to only treat half of the problem, and failing to treat the addiction side of a disorder will only allow it to worsen, costing more to treat in the long run.
In contrast to these shortcomings, S. 6735-a contains no exemptions. All health insurance policies issued in New York would be required to have equal limits for mental and physical coverage. S. 6735-a also requires much more comprehensive coverage; in addition to requiring substance abuse and addiction services, S. 6735-a requires that "[insurers] SHALL provide. coverage for the diagnosis and treatment of ALL mental, nervous or emotional disorders or ailments. AS DEFINED BY THE DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERSS, FOURTH EDITION (DSM IV-TR), OF THE AMERICAN PSYCHIATRIC ASSOCIATION [emphasis in original]." The American Psychiatric Association, being far better qualified than the Honorable Senator Libous and his distinguished colleagues in the Senate, defines mental illness as any abnormal functioning of the brain.
In conclusion, there is only one true parity bill in the Senate today, S. 6735-a. Libous' bill is a weak attempt to appease parity advocates, and it lacks in scope and coverage. I would encourage you to call your state senators and tell them that you want them to support the real Timothy's Law, S. 6735-a.
SELF HELP
The Language of 12 Steps --
Paradigm or Problem?
by Jo DiFulvio
Through social interaction, groups create the symbols that make life meaningful. Reality does not impose the names and definitions of things, but rather people must define things and make them meaningful in order to make them socially real. Through interaction we create and agree upon common definitions of physical reality, behaviors, morals, even our religious and philosophical views.
The language of a group reflects a consensus and defines the possibilities that are open to us. Language is not neutral. For all cultures and subcultures, it is a potent set of symbols that we come to accept directly and largely unconsciously; and these shared symbols influence how we sense, feel and think.
Incurable, disease, hopeless, denial, hit bottom, powerless, genetic, relapse, surrender, not responsible--these are part of the lexicon of the 12 Step culture. To what kind of vision can a person aspire who has absorbed these words into his psyche? What kind of power can he reasonably display in his life when he has attuned himself to a language that whispers defeat within his inner dialogue? A mantra of powerlessness will logically reveal itself in the self- fulfilling reality of surrender, denial and relapse.
A member of the 12-step group lives out the symbolic life of his culture, much like a member of other cultures, such as a culture of poverty or a gang culture. Of course choice always exists, but it gets buried under the definitions one is expected to act out, via the group language prescribed for its members.
In the first of the 12 steps, one admits that he is powerless. This admission opens up the possibility of control by external forces, including the group and other so called "recovering alcoholics." Failure to acknowledge powerlessness means an automatic label of being "in denial."
Powerlessness and empowerment represent diametrically opposed language. One cannot exercise power if the essence of one's approach requires giving up power. There is no problem with our recognizing a "greater power" or "higher power" in our lives. I believe in a power beyond our mortal power. However, the 12-step system takes this admission of powerlessness to the extreme. It grinds it into a person's being through the incessant and relentless language that cries defeat and victimhood. Attend any 12-step meeting, such as AA, and you will experience language and self-talk that is dis-empowering. The adherent is encouraged to understand his addiction as a state of being personally and permanently dis-empowered.
"Hi, my name is ________, and I'm am alcoholic." In essence one is saying, I am defined by my disease. My disease is me, more than anything else about me.
This introduction, heard over and over at thousands of meetings around the world every day, reminds us of lines from the Delmore Schwartz poem:
The heavy bear that goes with me,
A manifold honey to smear his face,
Clumsy and lumbering here and there,
The central ton of every place.
We need to ask the question: How much of that tonnage, that heaviness, might be relieved by a paradigm and an associated language beyond the one that continues to get the most respect in the addictions field--the 12 Steps?
The language of a group reflects a consensus and defines the possibilities that are open to us. Language is not neutral. For all cultures and subcultures, it is a potent set of symbols that we come to accept directly and largely unconsciously; and these shared symbols influence how we sense, feel and think.
Incurable, disease, hopeless, denial, hit bottom, powerless, genetic, relapse, surrender, not responsible--these are part of the lexicon of the 12 Step culture. To what kind of vision can a person aspire who has absorbed these words into his psyche? What kind of power can he reasonably display in his life when he has attuned himself to a language that whispers defeat within his inner dialogue? A mantra of powerlessness will logically reveal itself in the self- fulfilling reality of surrender, denial and relapse.
A member of the 12-step group lives out the symbolic life of his culture, much like a member of other cultures, such as a culture of poverty or a gang culture. Of course choice always exists, but it gets buried under the definitions one is expected to act out, via the group language prescribed for its members.
In the first of the 12 steps, one admits that he is powerless. This admission opens up the possibility of control by external forces, including the group and other so called "recovering alcoholics." Failure to acknowledge powerlessness means an automatic label of being "in denial."
Powerlessness and empowerment represent diametrically opposed language. One cannot exercise power if the essence of one's approach requires giving up power. There is no problem with our recognizing a "greater power" or "higher power" in our lives. I believe in a power beyond our mortal power. However, the 12-step system takes this admission of powerlessness to the extreme. It grinds it into a person's being through the incessant and relentless language that cries defeat and victimhood. Attend any 12-step meeting, such as AA, and you will experience language and self-talk that is dis-empowering. The adherent is encouraged to understand his addiction as a state of being personally and permanently dis-empowered.
"Hi, my name is ________, and I'm am alcoholic." In essence one is saying, I am defined by my disease. My disease is me, more than anything else about me.
This introduction, heard over and over at thousands of meetings around the world every day, reminds us of lines from the Delmore Schwartz poem:
The heavy bear that goes with me,
A manifold honey to smear his face,
Clumsy and lumbering here and there,
The central ton of every place.
We need to ask the question: How much of that tonnage, that heaviness, might be relieved by a paradigm and an associated language beyond the one that continues to get the most respect in the addictions field--the 12 Steps?
STIC NEWS
New Faces
Maureen Leonard - Service Coordinator
I am very excited to be working at STIC as a new Service Coordinator. I previously worked at Handicapped Children's Association. At HCA I received experience working as a preschool teacher and Coordinator of the Respite Program. I worked with individuals of various ages and disabilities. I highly enjoy working with families and assisting them to get the services they are in need of for their children. I am looking forward to working at STIC and learning from my dedicated and supportive co-workers.Elizabeth Signorotti - Development Director
I boast the distinction of having been born and raised on the last hop farm in the state of California, so I guess I'm a bit of a relic. As all aficionados know, hops are to beer what grapes are to wine. I received a BA in English from Saint Mary's College of California. After graduation, I did what every parent hopes their child won't do--rather than hitting the job market, I spent a year hitchhiking through Europe. Now that was an education. Upon my return, I got a job with McClatchy Newspapers/The Sacramento Bee in their Human Resources Department. Eventually I left the country again, only this time I took a Rotary scholarship to Nigeria, in West Africa. At the time I didn't know that Nigeria was in what we would term a state of civil war, but which they called "political unrest." That, too, made for an interesting trip. I returned to California from Nigeria long enough to calm down, pack my belongings, move to Binghamton, and begin graduate school at BU. I have taught in the Department of English at BU for 15 years now, and aside from grading papers, I enjoy it immensely. I also enjoy my two delightful children, Benjamin (11) and Abigail (7), who keep me busy with their Little League and soccer schedules.Becky Williams - Service Coordinator
I am very excited to have been allowed this opportunity to work for STIC as a Service Coordinator. I feel very fortunate to be a part of an agency made up of such unique, talented individuals. You all are so passionate about helping those with varying disabilities achieve their goals and dreams. I feel as though I've found my ideal workplace because this is what I've been trying to accomplish during my career in the human services field.My degree is in communications and the media arts. I happened upon a job in this field by answering an ad in the paper when I was attending SUNY Cortland. I began working as an aide in an ARC group home and worked my way up to a management position quickly. I was also a manager of an HCA group home.
This kind of work seems as though it has nothing to do with what I went to school for. It doesn't, really. However, I've learned to apply many of the valuable tools that I've learned in school to these jobs. Communications is an ambiguous field. A day in the life of a service coordinator requires plenty of effective communication, which includes listening, presenting, writing and often advocating rather loudly.
Thanks again for the opportunity!
STIC's Honor Roll
Each year STIC honors people and organizations that go well beyond the call of duty to support the needs and aspirations of people with disabilities, and/or of STIC. This year's gala awards luncheon was held in April. Many thanks to Lockheed Martin for their support for the fine food.
Here they are! The best and the brightest! The folks with the most! The top of the mark! The mark of excellence! Each of these persons and groups has our profound gratitude and admiration.
Here they are! The best and the brightest! The folks with the most! The top of the mark! The mark of excellence! Each of these persons and groups has our profound gratitude and admiration.
- Commitment to Community Integration and Inclusion
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Dianne Hogg - For exceptional teaching in an integrated kindergarten class at Port Dickinson Elementary. Ms. Hogg was able to integrate the entire class without separating individuals. She made the class fun each day and created a lesson plan that captivated an autistic child with great ease. She worked very closely with the mother and STIC staff to help the child be as successful as he could. The child grew tremendously from the first school year's experience.
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Tina Lounsbury, Tioga County Adult Services - For truly believing in and supporting STIC's Consumer Directed Personal Assistance (CDPA) program. She is supportive of consumers and committed to community integration and to ensuring that people are not placed in nursing homes.
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Sandy McCoy Cleveland, Community Care Network of Nichols/Faith in Action - For dedication to helping members of not only her community but also communities throughout Tioga County to stay in their own homes. Since 1999, these organizations have been developing the required infrastructure to help people to stay healthy, independent, and in their homes. They provide transportation, shopping with and for Nichols residents, friendly visits/phone calls, and information and referral. Sandy has found ways to fund her innovative ideas and is now training other communities that want to start their own programs.
- Commitment to Community Service
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Jody Dimitriou, Down Syndrome Information Network Parents Group - For organizing and sustaining a support group for families affected by Down syndrome. Jody works at this volunteer position full time in addition to her full-time job. She plans meetings, picnics and parties to encourage communication in the group. She is an instrumental member of the Buddy Walk committee and the contact person for other disability links. She visits new parents in the hospital and has created a New Parents Notebook to be given out when a baby is born or a new family moves into our area. She shares her knowledge about raising a child who has Down syndrome and is a role model to everyone whose lives she touches.
- Outstanding Accessibility Achievement
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Ed Ciano, Centro Watt - For an excellent implementation of parking signs on access aisles at the Town Square Mall that shows how it should be done.
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Gareth Sansom, Broome County YMCA - For involvement integral to the fitness aspect of the Mission Meltaway program. Gareth has a good aptitude for fitness options for people who have limited mobility or use wheelchairs, and his staff is well-trained and receptive to the disability perspective. As a result of our working relationship and STIC consumer involvement, Gareth applied for and received a grant for the installation of chair lifts in the YMCA pools.
- Outstanding Consumer Support
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Jo Di Fulvio - For being a dedicated advocate for integrated employment opportunities, inclusion in schools and transition services that lead to independent living and community integration.
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Mary McFadden, Steps To A Healthier NY Program - Mary helped STIC become the first Center for Independent Living in NYS to participate in this program to encourage healthy living and lifestyle changes for people with varying disabilities. This became the first such program to address the programmatic and access needs of people with disabilities and it was the first partnership of its kind nationwide.
- Outstanding Coverage of Disability Issue
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Connie Nogas, Binghamton Press & Sun-Bulletin - For seeking the parent perspective and keeping readers informed about issues facing school-aged children with disabilities in the education system.
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Tom Wilbur, Binghamton Press & Sun-Bulletin - For an excellent job of presenting a human side of disability in his article, "Life Doesn't Stop When Limbs Do", which presented the productive lives of 3 individuals with spinal cord injuries.
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Valerie Zehl, Binghamton Press & Sun-Bulletin - For gently and carefully opening doors for the community to see the lives of people with disabilities. Her respectful interviews and attention to accuracy are a model for journalists. People with disabilities have found her to be a trustworthy source who helps to spread the message of independence, self-reliance, and self- determination.
- Outstanding Employer Support
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Betsy Thomas, Pizza Hut - For not only encouraging employees with disabilities with her patience and kindness (providing a supportive work environment) but also ensuring that her staff are all treated with respect and dignity and must work together as a team.
- Outstanding Fundraising Support
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Hometown Holiday Light Festival Supporters
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BAE Systems - Whose many, many volunteers practically organized themselves and creatively engaged visitors to the park with candy and information. BAE employees also supported many needy families with holiday baskets. This wonderfully supportive company regularly contributes both money and time to STIC and the people we serve.
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Citizens Bank - We enthusiastically welcome this first-time sponsor!
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Clear Channel Radio - For tremendous in-kind advertising support carried on all stations, and for doing several remote broadcasts from the park.
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International Brotherhood of Electrical Workers Local 325 - For tireless and selfless hard work in cold, wet conditions to set up and take down lights, as well as professional electrician consulting and troubleshooting throughout the event.
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Lockheed Martin - For their committed support for the event every year, including strong financial sponsorship and large numbers of reliable, enthusiastic volunteers.
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Mirabito Fuel Group - For providing a substantial discount on fuel for the generators we use to make the lights shine. This contribution was critical in the face of massive fuel price increases.
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New York State Electric & Gas - For ongoing critical support with generators and staff that has been central to the event's success.
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United Health Services - For strong sponsorship and volunteer support.
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Dave Whalen, Time-Warner Cable - For gracious assistance in promoting the event on TV, which was very important to this year's increased attendance.
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Wegmans Food & Pharmacy - For longstanding generous sponsorship support as well as outstanding promotional and in-kind assistance, including in-store ticket sales and food for our annual Sponsors' Reception.
- Other Supporters
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Marvin Gregg, Gregg's Big M - For providing enthusiastic support for our holiday "Buy a STIC Dove" promotion.
- Outstanding Volunteer Support
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Elizabeth Anderson - For tireless volunteer support for our Light Festival, including providing emergency backup on several occasions.
- Jean M. Van Buskirk - For excellent and enthusiastic volunteer duty on behalf of our Light Festival.
STIC Transition Program
by Jessica Arnold
I am the new Transition Coordinator for the Southern Tier Independence Center. Two other Transition Counselors, Kim Gulick and Jesse Bishop, collaborate with me in this program. Kim has worked at STIC as a Supported Employment Specialist and Housing Services Coordinator, and is the current Benefits Advisor for the Benefits Planning Assistance and Outreach project. Jesse has been a peer counselor at STIC for several years and also has a background in working with legal issues. I have been a Medicaid Service Coordinator at STIC for over five years and also work in our Education Department. The three of us started in our positions in April 2006 and we have definitely hit the ground running.
We are currently involved with students from the Chenango Valley, Chenango Forks, Binghamton, Maine-Endwell, and Johnson City school districts and are hoping to expand to other Broome County districts in the fall. We can also work with students from the above mentioned school districts who attend the BOCES PALS program or who are under the age of 21 and have left school but would like to return to pursue more education. Referrals can come from parents, school staff or others who feel that the student could benefit from our service. This is voluntary program. Students who don't want to work with us or decide after a few months that they no longer want assistance do not have to continue working with us. The age range of students we can assist is 14-21, with more emphasis being on the older students or students with immediate needs. Students need to have an IEP in order to access the transition program, as this is our "proof" of them having a disability. The students we serve are generally at risk of dropping out of school and/or at risk of living in a segregated work or living setting after graduation.
School-to-life transition is an area that is often overlooked in a student's educational process, especially for students with disabilities. Our goal is to assist students in gaining the tools and knowledge that will enable them to become as independent and integrated as possible so that once they graduate, they will be able to become contributing members of their communities. Many students with disabilities are at risk for not successfully completing school- to-life transition for a variety of reasons. Sometimes families are not informed as to what options are out there for their disabled child, are unaware of what their school district can/should do for them or the families are simply unable to cope with the disability. In STIC's transition program, we want to work cooperatively with a variety of area agencies to insure that each student receives the services that are necessary and meaningful for them. We encourage students to participate in the transition process and decide what goals are important to them.
Part of our job in this program will be to look at a student's IEP to make sure the transition goals are truly individualized for the student. In the next newsletter we will be writing about the new State Education regulations concerning the transition process. These regulations will hold the schools more accountable for transition activities that go on while the student is in school as well as how the student does after graduation.
What types of services are available to students?
Where?
Location is dependent upon the individual goals of each student.
We are currently involved with students from the Chenango Valley, Chenango Forks, Binghamton, Maine-Endwell, and Johnson City school districts and are hoping to expand to other Broome County districts in the fall. We can also work with students from the above mentioned school districts who attend the BOCES PALS program or who are under the age of 21 and have left school but would like to return to pursue more education. Referrals can come from parents, school staff or others who feel that the student could benefit from our service. This is voluntary program. Students who don't want to work with us or decide after a few months that they no longer want assistance do not have to continue working with us. The age range of students we can assist is 14-21, with more emphasis being on the older students or students with immediate needs. Students need to have an IEP in order to access the transition program, as this is our "proof" of them having a disability. The students we serve are generally at risk of dropping out of school and/or at risk of living in a segregated work or living setting after graduation.
School-to-life transition is an area that is often overlooked in a student's educational process, especially for students with disabilities. Our goal is to assist students in gaining the tools and knowledge that will enable them to become as independent and integrated as possible so that once they graduate, they will be able to become contributing members of their communities. Many students with disabilities are at risk for not successfully completing school- to-life transition for a variety of reasons. Sometimes families are not informed as to what options are out there for their disabled child, are unaware of what their school district can/should do for them or the families are simply unable to cope with the disability. In STIC's transition program, we want to work cooperatively with a variety of area agencies to insure that each student receives the services that are necessary and meaningful for them. We encourage students to participate in the transition process and decide what goals are important to them.
Part of our job in this program will be to look at a student's IEP to make sure the transition goals are truly individualized for the student. In the next newsletter we will be writing about the new State Education regulations concerning the transition process. These regulations will hold the schools more accountable for transition activities that go on while the student is in school as well as how the student does after graduation.
What types of services are available to students?
- Transition goal planning and negotiating the IEP process to ensure success
- Self-Advocacy/Assertiveness Training
- Counseling
- Information/Community Referrals (including SSI, Medicaid, HEAP, etc.)
- Independent Living Skills Training
- Vocational & Pre-vocational Support/Training
- Family Support/Training
Where?
Location is dependent upon the individual goals of each student.
- Home
- School
- Community
Community Programs
Family Fun Day
Informational Fair for Families of
Individuals with
Developmental Disabilities
Date: June 28, 2006(rain or shine)
Time: 2:00 pm - 7:00 pm
Informational Fair Highlights
* Refreshments* Entertainment by:
FLAME (3 - 6 pm) www.flamesoftrock.com
CAYUGA WIZARDS (5 - 7 pm) magic
* Door Prizes
* Information from over 20 service providers covering six counties
Do you need or know of someone who needs services for their family member with developmental disabilities? This event is for you! Come join the fun and obtain all the information you need. This is a family event .. have fun .. meet people .. enjoy a bite to eat .. be entertained .. and gather information about a community of support service providers who care about individuals with developmental disabilities and their families.
Sponsored By:
Family Support Services Advisory Council
Location:
Otsiningo Park
Binghamton, NY
(Front St. & Bevier St.)
Easy Access from I-81 and Rt.17
On Broome County Bus Route
For More Information Contact:
Family Support Services
(607) 771-7784 ext. 157
For Information Regarding Support Services in Your County Contact:
Broome County: (607) 771-0586
Chenango County: (607) 336-9550
Delaware County: (607) 865-6551
Otsego County: (607) 432-8860
Tioga County: (607) 689-0290
Tompkins County: (607) 273-0811
Family Support Services Advisory Council
Location:
Otsiningo Park
Binghamton, NY
(Front St. & Bevier St.)
Easy Access from I-81 and Rt.17
On Broome County Bus Route
For More Information Contact:
Family Support Services
(607) 771-7784 ext. 157
For Information Regarding Support Services in Your County Contact:
Broome County: (607) 771-0586
Chenango County: (607) 336-9550
Delaware County: (607) 865-6551
Otsego County: (607) 432-8860
Tioga County: (607) 689-0290
Tompkins County: (607) 273-0811
SAVE THE DATE!
Independence! 2006
A Conference
October 30 - November 1
Desmond Hotel and Conference Center Albany, NY
Co-sponsored by the New York State Independent Living
Council
and
New York Association on Independent Living
For more information, contact:
NYAIL One Commerce Plaza
99 Washington Avenue, Suite 806A
Albany, NY 12210
Phone: (518) 465-4650
Fax: (518) 465-4625
Email: mailto:info@ilny.org
Website: www.ilny.org
Desmond Hotel and Conference Center Albany, NY
Co-sponsored by the New York State Independent Living
Council
and
New York Association on Independent Living
For more information, contact:
NYAIL One Commerce Plaza
99 Washington Avenue, Suite 806A
Albany, NY 12210
Phone: (518) 465-4650
Fax: (518) 465-4625
Email: mailto:info@ilny.org
Website: www.ilny.org
Volunteer to Participate in
Accessibility Research Studies
for the National Center on Accessibility
at Indiana University
by Jennifer Skulski
For more than ten years, the National Center on Accessibility at Indiana University has researched the needs, preferences and expectations of people with disabilities accessing parks, recreation and tourism. Participation by people with disabilities in NCA research studies has led to significant research findings in the areas of:
Discovery in these recreation areas has assisted managers to make better informed decisions on planning, designs and products to create accessible facilities, programs and services. To further research discovery, the National Center on Accessibility is seeking individuals with disabilities to volunteer for future research studies.
By volunteering, you will be added to the NCA Research Volunteer Database. As NCA surveys and research activities are initiated, you may be asked to participate based on your geographic location in relation to the project and your areas of interest. Your participation in NCA research activities will contribute to inquiry as to how to best meet the needs of people with disabilities in recreational pursuits. All participation is voluntary and without compensation.
There are many benefits to participating in NCA research. In addition to assuring that your voice is heard, your needs and preferences will have a national impact. You may have the opportunity to test various products and equipment that are designed to improve access to recreation environments. You may also be asked to respond to questions and surveys that will assist manufacturers and product developers. Research studies or surveys may require only responses to questionnaires that can be completed on the internet. Others may require physical participation in testing and evaluating devices and products. Interested individuals with disabilities can sign up to volunteer by completing the form on the NCA web site at http://www.ncaonline.org or by contacting NCA directly via e-mail, mail, fax or phone.
Volunteer Information
People with disabilities interested in participating in future NCA research studies can sign up at any time. Your information will be kept on file and you will be contacted when/if an NCA research activity is conducted based on your areas of interest and geographic location.
Terms of Use
Personal information provided by volunteers will be kept secure and strictly confidential by the National Center on Accessibility at Indiana University. NCA will contact volunteers directly with information on upcoming studies and opportunities for participation in research studies. Personal information will solely be used by NCA and/or a collaborative research partner(s). No portions of personal information will be shared or sold for commercial purposes. Volunteers will have the right to request removal from the research volunteer list at any time. Volunteers also have the right to decline participation in research studies at any time. To request to be removed from the research volunteer list, you can either call, e-mail or fax NCA.
For questions, contact:
Jennifer Skulski, Director of Marketing & Special Projects
National Center on Accessibility
2805 East 10th St, Suite 190
Bloomington, IN 47408
(812) 856-4422 (voice)
(812) 856-4421 (TTY)
email: nca@indiana.edu
www.ncaonline.org
- Beach assistive devices
- Temporary beach surfaces
- Swimming pools
- Playgrounds
- Golf
- Picnic areas
- Visitor expectations to National Parks
- Trail surfaces
Discovery in these recreation areas has assisted managers to make better informed decisions on planning, designs and products to create accessible facilities, programs and services. To further research discovery, the National Center on Accessibility is seeking individuals with disabilities to volunteer for future research studies.
By volunteering, you will be added to the NCA Research Volunteer Database. As NCA surveys and research activities are initiated, you may be asked to participate based on your geographic location in relation to the project and your areas of interest. Your participation in NCA research activities will contribute to inquiry as to how to best meet the needs of people with disabilities in recreational pursuits. All participation is voluntary and without compensation.
There are many benefits to participating in NCA research. In addition to assuring that your voice is heard, your needs and preferences will have a national impact. You may have the opportunity to test various products and equipment that are designed to improve access to recreation environments. You may also be asked to respond to questions and surveys that will assist manufacturers and product developers. Research studies or surveys may require only responses to questionnaires that can be completed on the internet. Others may require physical participation in testing and evaluating devices and products. Interested individuals with disabilities can sign up to volunteer by completing the form on the NCA web site at http://www.ncaonline.org or by contacting NCA directly via e-mail, mail, fax or phone.
Volunteer Information
People with disabilities interested in participating in future NCA research studies can sign up at any time. Your information will be kept on file and you will be contacted when/if an NCA research activity is conducted based on your areas of interest and geographic location.
Terms of Use
Personal information provided by volunteers will be kept secure and strictly confidential by the National Center on Accessibility at Indiana University. NCA will contact volunteers directly with information on upcoming studies and opportunities for participation in research studies. Personal information will solely be used by NCA and/or a collaborative research partner(s). No portions of personal information will be shared or sold for commercial purposes. Volunteers will have the right to request removal from the research volunteer list at any time. Volunteers also have the right to decline participation in research studies at any time. To request to be removed from the research volunteer list, you can either call, e-mail or fax NCA.
For questions, contact:
Jennifer Skulski, Director of Marketing & Special Projects
National Center on Accessibility
2805 East 10th St, Suite 190
Bloomington, IN 47408
(812) 856-4422 (voice)
(812) 856-4421 (TTY)
email: nca@indiana.edu
www.ncaonline.org
Unclassifieds
For Sale: 2 year old Rascal Deluxe 3-wheel powered scooter, rarely used. Includes: cover, speedometer, horn, 2 baskets, lights, flag and new batteries. Cost $4,700, asking $1,500. Call 699-3649, ask for Doris.
Summer 2006
Issue No. 83
- We're Number 50! Rah! Rah! Rah!
- Journey to the Center of the Universe
- AccessAbility Masthead
- NEWS & ANALYSIS
- Inclusion for Students with Disabilities: Reality or Dream?
- Look Back in Anger?
- Nursing Facility Transition and Diversion Waiver Under Attack
- NYS Part D Wrap-Around Changes
- State Sued for Sending People with Mental Disabilities to Nursing Homes
- This is the Way the Budget Ends: Not with a Bang but a Whimper
- Timothy's Law
- SELF HELP
- The Language of 12 Steps -- Paradigm or Problem?
- STIC NEWS
- New Faces
- STIC's Honor Roll
- STIC Transition Program
- COMMUNITY PROGRAMS
- Family Fun Day
- Independence 2006! A Conference
- Volunteer to Participate in Accessibility Research Studies for NCA at IU
- UNCLASSIFIEDS