Nursing Home Transition and Diversion: Long May It Waive!
by Maria Dibble
I feel compelled in this editorial to bring some happy, hopeful news, especially after the results of the election, which bode ill for people with disabilities. So I'd like to announce an excellent achievement.
We have gained a significant victory. On October 19, 2004, Governor Pataki finally signed the Nursing Home Transition and Diversion Waiver bill into law!
This law will allow for the establishment of a Medicaid Home and Community Based Services waiver for people with disabilities who are not covered by other waivers, with the goals of diverting or transitioning people with disabilities from institutions and providing the supports necessary to ensure success.
We thank State Senator Raymond Meier, Chairman of the Senate Social Services Committee, for his hard work in getting the bill adopted. We thank State Senator Thomas Libous for his support of the bill, and we thank the Governor for signing it.
All of your phone calls, letters, emails, trips to rallies and more paid off. The people were heard and this law is now a reality. So take a few deep breaths, pat yourselves on the back for a job well done, and then prepare for the next possible challenges facing us.
The State Department of Health must complete and submit a waiver application to the federal government before any waiver services can be offered. The waiver application process is lengthy and tedious and could take a year or longer. In the meantime, there is much that can be done to prepare, so that when the waiver is enacted we can hit the ground running.
We call upon the State Legislature to appropriate funds for the Regional Resource Development Centers (RRDCs) immediately. The law creates the RRDCs to establish service provider networks and assist people to become waiver-eligible in much the same way that New York's TBI RRDCs do. (Full disclosure: STIC operates a TBI RRDC.) These centers can recruit and train providers, develop policies and procedures and identify potential waiver participants. They may even be able to help some people leave institutions before the waiver is in place, if their needs aren't very intensive. When the TBI waiver was established this process was followed with great success. We need to do this again so we can minimize the time that people languish in nursing homes with no hope or quality of life.
We must also make sure that this waiver program allows for an adequate housing subsidy so that people can afford to pay security deposits, first month's rent and the like. Until very recently, federal regulations did not clearly permit HCBS waiver funds to be used for these purposes. However, the Centers for Medicare and Medicaid Services (CMS) have issued a "clarification" on this point. HCBS waiver funds for community transition services can indeed be used to pay for "security deposits" up to the equivalent of two months' rent. It's very important that this option be included in New York's new waiver proposal, and all of the state's other HCBS waivers, including those supporting Self Determination and other people with developmental disabilities or head injuries, should be amended as necessary to take advantage of this.
The CMS announcement is very good news, but it doesn't completely solve the problem. There remains a shortage of low-income housing in many parts of the state. The state's leadership needs to address this issue, and it needs to do so not by promoting new group homes (as has been suggested by Governor Pataki's Medicaid reform task force), but by supporting integrated individual homes and apartments with rent subsidies and expanded trust arrangements for people with disabilities, and tax incentives for developers.
The same great DOH team that brought you the TBI Waiver has been given the job of creating the new program, and they are already working with knowledgeable advocates and consumers, so we know the results will be good. If our elected leadership does their part, this will be the best waiver yet in New York State, and a real opportunity to "Free our people!"
We have gained a significant victory. On October 19, 2004, Governor Pataki finally signed the Nursing Home Transition and Diversion Waiver bill into law!
This law will allow for the establishment of a Medicaid Home and Community Based Services waiver for people with disabilities who are not covered by other waivers, with the goals of diverting or transitioning people with disabilities from institutions and providing the supports necessary to ensure success.
We thank State Senator Raymond Meier, Chairman of the Senate Social Services Committee, for his hard work in getting the bill adopted. We thank State Senator Thomas Libous for his support of the bill, and we thank the Governor for signing it.
All of your phone calls, letters, emails, trips to rallies and more paid off. The people were heard and this law is now a reality. So take a few deep breaths, pat yourselves on the back for a job well done, and then prepare for the next possible challenges facing us.
The State Department of Health must complete and submit a waiver application to the federal government before any waiver services can be offered. The waiver application process is lengthy and tedious and could take a year or longer. In the meantime, there is much that can be done to prepare, so that when the waiver is enacted we can hit the ground running.
We call upon the State Legislature to appropriate funds for the Regional Resource Development Centers (RRDCs) immediately. The law creates the RRDCs to establish service provider networks and assist people to become waiver-eligible in much the same way that New York's TBI RRDCs do. (Full disclosure: STIC operates a TBI RRDC.) These centers can recruit and train providers, develop policies and procedures and identify potential waiver participants. They may even be able to help some people leave institutions before the waiver is in place, if their needs aren't very intensive. When the TBI waiver was established this process was followed with great success. We need to do this again so we can minimize the time that people languish in nursing homes with no hope or quality of life.
We must also make sure that this waiver program allows for an adequate housing subsidy so that people can afford to pay security deposits, first month's rent and the like. Until very recently, federal regulations did not clearly permit HCBS waiver funds to be used for these purposes. However, the Centers for Medicare and Medicaid Services (CMS) have issued a "clarification" on this point. HCBS waiver funds for community transition services can indeed be used to pay for "security deposits" up to the equivalent of two months' rent. It's very important that this option be included in New York's new waiver proposal, and all of the state's other HCBS waivers, including those supporting Self Determination and other people with developmental disabilities or head injuries, should be amended as necessary to take advantage of this.
The CMS announcement is very good news, but it doesn't completely solve the problem. There remains a shortage of low-income housing in many parts of the state. The state's leadership needs to address this issue, and it needs to do so not by promoting new group homes (as has been suggested by Governor Pataki's Medicaid reform task force), but by supporting integrated individual homes and apartments with rent subsidies and expanded trust arrangements for people with disabilities, and tax incentives for developers.
The same great DOH team that brought you the TBI Waiver has been given the job of creating the new program, and they are already working with knowledgeable advocates and consumers, so we know the results will be good. If our elected leadership does their part, this will be the best waiver yet in New York State, and a real opportunity to "Free our people!"
Who Protects Our Children from the Schools?
by Jo Anne Novicky
I feel compelled in this editorial to bring some happy, hopeful news, especially after the results of the election, which bode ill for people with disabilities. So I'd like to announce an excellent achievement.
We have gained a significant victory. On October 19, 2004, Governor Pataki finally signed the Nursing Home Transition and Diversion Waiver bill into law!
This law will allow for the establishment of a Medicaid Home and Community Based Services waiver for people with disabilities who are not covered by other waivers, with the goals of diverting or transitioning people with disabilities from institutions and providing the supports necessary to ensure success.
We thank State Senator Raymond Meier, Chairman of the Senate Social Services Committee, for his hard work in getting the bill adopted. We thank State Senator Thomas Libous for his support of the bill, and we thank the Governor for signing it.
All of your phone calls, letters, emails, trips to rallies and more paid off. The people were heard and this law is now a reality. So take a few deep breaths, pat yourselves on the back for a job well done, and then prepare for the next possible challenges facing us.
The State Department of Health must complete and submit a waiver application to the federal government before any waiver services can be offered. The waiver application process is lengthy and tedious and could take a year or longer. In the meantime, there is much that can be done to prepare, so that when the waiver is enacted we can hit the ground running.
We call upon the State Legislature to appropriate funds for the Regional Resource Development Centers (RRDCs) immediately. The law creates the RRDCs to establish service provider networks and assist people to become waiver-eligible in much the same way that New York's TBI RRDCs do. (Full disclosure: STIC operates a TBI RRDC.) These centers can recruit and train providers, develop policies and procedures and identify potential waiver participants. They may even be able to help some people leave institutions before the waiver is in place, if their needs aren't very intensive. When the TBI waiver was established this process was followed with great success. We need to do this again so we can minimize the time that people languish in nursing homes with no hope or quality of life.
We must also make sure that this waiver program allows for an adequate housing subsidy so that people can afford to pay security deposits, first month's rent and the like. Until very recently, federal regulations did not clearly permit HCBS waiver funds to be used for these purposes. However, the Centers for Medicare and Medicaid Services (CMS) have issued a "clarification" on this point. HCBS waiver funds for community transition services can indeed be used to pay for "security deposits" up to the equivalent of two months' rent. It's very important that this option be included in New York's new waiver proposal, and all of the state's other HCBS waivers, including those supporting Self Determination and other people with developmental disabilities or head injuries, should be amended as necessary to take advantage of this.
The CMS announcement is very good news, but it doesn't completely solve the problem. There remains a shortage of low-income housing in many parts of the state. The state's leadership needs to address this issue, and it needs to do so not by promoting new group homes (as has been suggested by Governor Pataki's Medicaid reform task force), but by supporting integrated individual homes and apartments with rent subsidies and expanded trust arrangements for people with disabilities, and tax incentives for developers.
The same great DOH team that brought you the TBI Waiver has been given the job of creating the new program, and they are already working with knowledgeable advocates and consumers, so we know the results will be good. If our elected leadership does their part, this will be the best waiver yet in New York State, and a real opportunity to "Free our people!" Who Protects Our Children from the Schools? by Jo Anne Novicky
Recently an incident brought this question to light again. A child with very limited verbal ability was able to convey that he was physically abused in his school. Once again, nothing could be done.
For those of us who are mandated reporters and concerned with the welfare of children, this has become a very difficult situation to deal with. Each county has a Child Protective unit through the Department of Social Services. If we suspect or have knowledge that a child is being abused or neglected in their home we are mandated to report our concerns. There is a procedure to investigate the allegations. However, if we call the child abuse hotline regarding abuse that occurs in the school we are told that they have no jurisdiction in the schools. We may be advised to contact law enforcement but are cautioned that they rarely get involved in school abuse issues.
Some of our children are involved in programs with oversight from the Office of Mental Retardation and Developmental Disabilities (OMRDD). There is a procedure for allegations of abuse to be reported to that agency. Though there is concern by individuals from OMRDD, we are told that they have no jurisdiction over the schools. Who does provide oversight to protect children in their schools?
We know whom to call if a child is abused in their home, in their community or even in their church--but if a child is abused in their school, who do you call? It seems outrageous that there is so little oversight. I'm not here to say that it is commonplace for children to be abused in their schools, but it does occur. Many of us work with children who are limited in their verbal and physical capabilities, making them very vulnerable in situations that put them at risk. Our society has a responsibility to protect our children and we have certainly fallen short when our system cannot protect them in their schools.
[Editor's note: There is legal precedent for suing a school district under IDEA for failing to provide a FAPE (Free Appropriate Public Education) to a child who is abused by school employees. Of course, this is a ludicrous solution; lawsuits drag on for years, during which the abusive employee would have plenty of time to retaliate against the victim.]
We have gained a significant victory. On October 19, 2004, Governor Pataki finally signed the Nursing Home Transition and Diversion Waiver bill into law!
This law will allow for the establishment of a Medicaid Home and Community Based Services waiver for people with disabilities who are not covered by other waivers, with the goals of diverting or transitioning people with disabilities from institutions and providing the supports necessary to ensure success.
We thank State Senator Raymond Meier, Chairman of the Senate Social Services Committee, for his hard work in getting the bill adopted. We thank State Senator Thomas Libous for his support of the bill, and we thank the Governor for signing it.
All of your phone calls, letters, emails, trips to rallies and more paid off. The people were heard and this law is now a reality. So take a few deep breaths, pat yourselves on the back for a job well done, and then prepare for the next possible challenges facing us.
The State Department of Health must complete and submit a waiver application to the federal government before any waiver services can be offered. The waiver application process is lengthy and tedious and could take a year or longer. In the meantime, there is much that can be done to prepare, so that when the waiver is enacted we can hit the ground running.
We call upon the State Legislature to appropriate funds for the Regional Resource Development Centers (RRDCs) immediately. The law creates the RRDCs to establish service provider networks and assist people to become waiver-eligible in much the same way that New York's TBI RRDCs do. (Full disclosure: STIC operates a TBI RRDC.) These centers can recruit and train providers, develop policies and procedures and identify potential waiver participants. They may even be able to help some people leave institutions before the waiver is in place, if their needs aren't very intensive. When the TBI waiver was established this process was followed with great success. We need to do this again so we can minimize the time that people languish in nursing homes with no hope or quality of life.
We must also make sure that this waiver program allows for an adequate housing subsidy so that people can afford to pay security deposits, first month's rent and the like. Until very recently, federal regulations did not clearly permit HCBS waiver funds to be used for these purposes. However, the Centers for Medicare and Medicaid Services (CMS) have issued a "clarification" on this point. HCBS waiver funds for community transition services can indeed be used to pay for "security deposits" up to the equivalent of two months' rent. It's very important that this option be included in New York's new waiver proposal, and all of the state's other HCBS waivers, including those supporting Self Determination and other people with developmental disabilities or head injuries, should be amended as necessary to take advantage of this.
The CMS announcement is very good news, but it doesn't completely solve the problem. There remains a shortage of low-income housing in many parts of the state. The state's leadership needs to address this issue, and it needs to do so not by promoting new group homes (as has been suggested by Governor Pataki's Medicaid reform task force), but by supporting integrated individual homes and apartments with rent subsidies and expanded trust arrangements for people with disabilities, and tax incentives for developers.
The same great DOH team that brought you the TBI Waiver has been given the job of creating the new program, and they are already working with knowledgeable advocates and consumers, so we know the results will be good. If our elected leadership does their part, this will be the best waiver yet in New York State, and a real opportunity to "Free our people!" Who Protects Our Children from the Schools? by Jo Anne Novicky
Recently an incident brought this question to light again. A child with very limited verbal ability was able to convey that he was physically abused in his school. Once again, nothing could be done.
For those of us who are mandated reporters and concerned with the welfare of children, this has become a very difficult situation to deal with. Each county has a Child Protective unit through the Department of Social Services. If we suspect or have knowledge that a child is being abused or neglected in their home we are mandated to report our concerns. There is a procedure to investigate the allegations. However, if we call the child abuse hotline regarding abuse that occurs in the school we are told that they have no jurisdiction in the schools. We may be advised to contact law enforcement but are cautioned that they rarely get involved in school abuse issues.
Some of our children are involved in programs with oversight from the Office of Mental Retardation and Developmental Disabilities (OMRDD). There is a procedure for allegations of abuse to be reported to that agency. Though there is concern by individuals from OMRDD, we are told that they have no jurisdiction over the schools. Who does provide oversight to protect children in their schools?
We know whom to call if a child is abused in their home, in their community or even in their church--but if a child is abused in their school, who do you call? It seems outrageous that there is so little oversight. I'm not here to say that it is commonplace for children to be abused in their schools, but it does occur. Many of us work with children who are limited in their verbal and physical capabilities, making them very vulnerable in situations that put them at risk. Our society has a responsibility to protect our children and we have certainly fallen short when our system cannot protect them in their schools.
[Editor's note: There is legal precedent for suing a school district under IDEA for failing to provide a FAPE (Free Appropriate Public Education) to a child who is abused by school employees. Of course, this is a ludicrous solution; lawsuits drag on for years, during which the abusive employee would have plenty of time to retaliate against the victim.]
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AccessAbility
December 2004
EDITOR IN CHIEF: MARIA DIBBLE
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
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News & Analysis
Children's Mental Health Task Force Moves Forward
by Maria Dibble
We are very pleased to announce that Broome County Mental Health (BCMH) has received local approval to fund the proposed needs assessment to be conducted by the Center for Government Research. State approval is expected by the end of the year.
Through this exciting partnership between BCMH and the Children's Mental Health Task Force we will immediately forge ahead to implement the assessment. We will gather information about the needs and gaps in services as well as existing resources for dually-diagnosed children with both mental health and developmental disabilities. We want to obtain a comprehensive picture of the service system in the area and develop new and innovative strategies to increase and enhance services in order to offer urgently needed supports.
We envision a multi-disciplinary approach to meet the complex needs of these children and we will explore many options, including such concepts as tele-medicine. We will also survey providers, schools, parents, etc. to identify the numbers of children needing specific services and we will begin to develop a strategic plan to find funding and resources to resolve the issues.
We extend our thanks to Art Johnson, Broome County Mental Health Commissioner, for his efforts to fund this project and help the Task Force get one step closer to achieving its goals.
Through this exciting partnership between BCMH and the Children's Mental Health Task Force we will immediately forge ahead to implement the assessment. We will gather information about the needs and gaps in services as well as existing resources for dually-diagnosed children with both mental health and developmental disabilities. We want to obtain a comprehensive picture of the service system in the area and develop new and innovative strategies to increase and enhance services in order to offer urgently needed supports.
We envision a multi-disciplinary approach to meet the complex needs of these children and we will explore many options, including such concepts as tele-medicine. We will also survey providers, schools, parents, etc. to identify the numbers of children needing specific services and we will begin to develop a strategic plan to find funding and resources to resolve the issues.
We extend our thanks to Art Johnson, Broome County Mental Health Commissioner, for his efforts to fund this project and help the Task Force get one step closer to achieving its goals.
Courts Watch
Radaszewski v. Maram
Eric Radaszewski is a young man with very severe disabilities who lives with his parents in Illinois. He chokes easily while eating, he sometimes forgets that he can't walk, and his weak immune system subjects him to frequent sinus infections that can quickly turn into fatal sepsis. He got 16 hours of private duty nursing daily in his home for years, under a Medicaid waiver for children. When he turned 21, he became ineligible for that waiver and faced institutionalization. After his folks began fighting the system, Illinois took private duty nursing off its list of Medicaid State Plan services, perhaps not coincidentally; the Circuit Court decision mentions "questions" about the "propriety" of that change. Another Illinois waiver offers in-home nursing to adults, but it has a monthly cost cap, based on Radaszewski's "needs score", of about $4,000. This would pay for about 5 hours per day--not enough to keep him alive. Also, while his parents were trained to provide care for 8 hours a day, their health has declined and they can no longer do so. Radaszewski now needs 24/7 in-home nursing, at an estimated monthly cost of $15,000 - $20,000. The state refused to provide it and insisted that he go into a nursing home.
This complex case involves multiple issues of state and federal law. Over time it came down to a suit filed in federal district court by Radaszewksi's mother against the state's Medicaid director, Barry Maram, under Section 504 of the Rehab Act and Title II of the ADA. The court ruled against Radaszewski on 11th. Amendment grounds, but the 7th. Circuit reversed that decision in September and sent the case back for more fact-finding. Meanwhile, Radaszewski is getting nursing at home under an injunction.
The state says it would be an undue burden to exceed its cost cap on waiver-funded nursing for adults, and implies that the alternative would amount to providing unlimited State Plan private duty nursing, which, since the state stopped that service, would fundamentally alter its Medicaid program. Radaszewski argued that the services he now gets are essential to keep him alive, and proved that no nursing homes in the state actually offer the intensive monitoring he needs. The only institutional options that meet his needs would be hospitalization or hiring private duty nurses to supplement nursing home staff. The total cost for either of those options would likely be greater than that of the in-home service. The state conceded that it is obliged to provide any services necessary to keep the man alive. But it tried to take cover under the Supreme Court's Olmstead provision that a state need not create services that it doesn't already have simply to avoid institutionalizing someone; it said the fact that the service isn't available in nursing homes without hiring extra staff proves that the state doesn't already have such a program.
The Circuit Court didn't buy it. It ruled that states can't use arbitrary program definitions, names, or "needs scores" to dodge Title II. All that matters is the nature of the services. Regardless of what the program is called or whether it's funded under a waiver or the State Plan, Illinois must provide adequate services to keep Medicaid recipients alive, and does already have a program to render those services to adults in their homes. If Radaszewski can prove to the District Court that the state can provide the services 24/7 in his home for equal or less cost than would actually be incurred in the equivalent institutional setting, the state must provide the more integrated service. The Court also strongly implied that it would be very hard to show that providing an integrated service that costs the same or less than a segregated equivalent could ever threaten a state's Olmstead-protected ability to provide a range of services, including institutional ones.
Any service that elderly parents can learn to provide for 8 hours a day probably doesn't truly require expensive, highly-trained nurses for the other 16. In our experience, conscientious attendants can be trained to do just about anything related to breathing, feeding or monitoring that people with severe disabilities need, safely and effectively. Radaszewski probably only needs near-constant eyeballing by someone trained to respond quickly, not high-level medical expertise. Illinois could bring the cost way down with a consumer-directed personal assistance program like New York's. But neither Illinois nor the courts disputed Radaszewski's need for a nurse, and the principles in this case can apply to any level of care.
If Radaszewski ultimately wins, this case will strengthen the ADA's Title II prohibition against unnecessary segregation by clarifying that it applies to one of the nay-sayers' favorite bugaboos, "cost outlyers"--that is, people whose individual needs significantly exceed the average.
The District Court now must look at this again, and presumably there will be more appeals either way, possibly all the way to the Supreme Court. We'll keep you posted.
Ball v Biedess
This was a class action suit filed by people with disabilities and elderly people who get Medicaid in Arizona. They claimed they couldn't get all the services to which they were entitled because the wages the state was willing to pay were too low to attract enough workers to provide the services. In August a federal district court ruled that the state must pay health care workers enough to ensure that qualified Medicaid recipients can get all the services they need. This decision will probably be appealed. However, this is not the first time that a federal court has made such a determination. It's quite possible that the finding will be upheld on appeal. Folks who have been unable to get adequate levels of OMRDD residential habilitation services, among other things, should watch this case closely and start looking for lawyers.
Eric Radaszewski is a young man with very severe disabilities who lives with his parents in Illinois. He chokes easily while eating, he sometimes forgets that he can't walk, and his weak immune system subjects him to frequent sinus infections that can quickly turn into fatal sepsis. He got 16 hours of private duty nursing daily in his home for years, under a Medicaid waiver for children. When he turned 21, he became ineligible for that waiver and faced institutionalization. After his folks began fighting the system, Illinois took private duty nursing off its list of Medicaid State Plan services, perhaps not coincidentally; the Circuit Court decision mentions "questions" about the "propriety" of that change. Another Illinois waiver offers in-home nursing to adults, but it has a monthly cost cap, based on Radaszewski's "needs score", of about $4,000. This would pay for about 5 hours per day--not enough to keep him alive. Also, while his parents were trained to provide care for 8 hours a day, their health has declined and they can no longer do so. Radaszewski now needs 24/7 in-home nursing, at an estimated monthly cost of $15,000 - $20,000. The state refused to provide it and insisted that he go into a nursing home.
This complex case involves multiple issues of state and federal law. Over time it came down to a suit filed in federal district court by Radaszewksi's mother against the state's Medicaid director, Barry Maram, under Section 504 of the Rehab Act and Title II of the ADA. The court ruled against Radaszewski on 11th. Amendment grounds, but the 7th. Circuit reversed that decision in September and sent the case back for more fact-finding. Meanwhile, Radaszewski is getting nursing at home under an injunction.
The state says it would be an undue burden to exceed its cost cap on waiver-funded nursing for adults, and implies that the alternative would amount to providing unlimited State Plan private duty nursing, which, since the state stopped that service, would fundamentally alter its Medicaid program. Radaszewski argued that the services he now gets are essential to keep him alive, and proved that no nursing homes in the state actually offer the intensive monitoring he needs. The only institutional options that meet his needs would be hospitalization or hiring private duty nurses to supplement nursing home staff. The total cost for either of those options would likely be greater than that of the in-home service. The state conceded that it is obliged to provide any services necessary to keep the man alive. But it tried to take cover under the Supreme Court's Olmstead provision that a state need not create services that it doesn't already have simply to avoid institutionalizing someone; it said the fact that the service isn't available in nursing homes without hiring extra staff proves that the state doesn't already have such a program.
The Circuit Court didn't buy it. It ruled that states can't use arbitrary program definitions, names, or "needs scores" to dodge Title II. All that matters is the nature of the services. Regardless of what the program is called or whether it's funded under a waiver or the State Plan, Illinois must provide adequate services to keep Medicaid recipients alive, and does already have a program to render those services to adults in their homes. If Radaszewski can prove to the District Court that the state can provide the services 24/7 in his home for equal or less cost than would actually be incurred in the equivalent institutional setting, the state must provide the more integrated service. The Court also strongly implied that it would be very hard to show that providing an integrated service that costs the same or less than a segregated equivalent could ever threaten a state's Olmstead-protected ability to provide a range of services, including institutional ones.
Any service that elderly parents can learn to provide for 8 hours a day probably doesn't truly require expensive, highly-trained nurses for the other 16. In our experience, conscientious attendants can be trained to do just about anything related to breathing, feeding or monitoring that people with severe disabilities need, safely and effectively. Radaszewski probably only needs near-constant eyeballing by someone trained to respond quickly, not high-level medical expertise. Illinois could bring the cost way down with a consumer-directed personal assistance program like New York's. But neither Illinois nor the courts disputed Radaszewski's need for a nurse, and the principles in this case can apply to any level of care.
If Radaszewski ultimately wins, this case will strengthen the ADA's Title II prohibition against unnecessary segregation by clarifying that it applies to one of the nay-sayers' favorite bugaboos, "cost outlyers"--that is, people whose individual needs significantly exceed the average.
The District Court now must look at this again, and presumably there will be more appeals either way, possibly all the way to the Supreme Court. We'll keep you posted.
Ball v Biedess
This was a class action suit filed by people with disabilities and elderly people who get Medicaid in Arizona. They claimed they couldn't get all the services to which they were entitled because the wages the state was willing to pay were too low to attract enough workers to provide the services. In August a federal district court ruled that the state must pay health care workers enough to ensure that qualified Medicaid recipients can get all the services they need. This decision will probably be appealed. However, this is not the first time that a federal court has made such a determination. It's quite possible that the finding will be upheld on appeal. Folks who have been unable to get adequate levels of OMRDD residential habilitation services, among other things, should watch this case closely and start looking for lawyers.
Election Analysis:
We're in Big Trouble
The 2004 election was a watershed event for the disability community. It will profoundly affect health care, personal assistance services, and civil rights enforcement for the next decade.
The pollsters report that people with disabilities supported Bush over Kerry by 52.5% to 46%. While the margin for error on those numbers is 2.5%, it's still the first presidential election in which more people with disabilities voted Republican than Democrat since people started tracking the disability vote. Further analysis shows that most of the people with disabilities who voted had upper-middle-class incomes. Turnout was low among low-income people with disabilities. These facts speak for themselves.
Now we must assess the situation and decide where our attention and resources most need to be focused.
Let's first consider civil rights.
Over the last decade, the US Supreme Court's radical "states' rights" agenda has severely weakened the Americans with Disabilities Act (ADA). President Bush will likely appoint two or three new Supreme Court justices in his second term. Chief Justice Rehnquist, a conservative, is very ill and probably will resign soon. Justice Ruth Bader Ginsburg, a liberal, has had cancer and is said to be considering resigning. Questions have also been raised about "swing vote" Justice Sandra Day O'Connor's age and health. Bush has pledged to appoint only conservative judges. The US Senate, now with a 55 to 45 Republican majority, will be more friendly to such appointments than it was. While Democrats say that the Republicans still don't have the votes to stop a filibuster, that assumes that no Democrats will cross over and support the Republicans. Several Democrats did exactly that on many occasions during Bush's first term. And Republican Senate Majority Leader Bill Frist has said he'd like to change Senate rules to prohibit filibusters on federal court appointees. Replacing Rehnquist with another conservative won't alter the balance on the Court, but if Ginsburg or O'Connor resigns, the moderate coalition that limited the damage of the Garrett decision and brought us victory in Tennessee v Lane will no longer exist. We can probably look forward to the destruction of ADA's Title II in coming years.
With larger Republican majorities in both the House and Senate, it's unlikely that any bill to repair the damage to the ADA will pass, and Bush probably wouldn't sign one anyway. As a result of this election, our brief era of federal civil rights protections for people with disabilities will likely end soon. It is now critical for the New York State Legislature to pass, and Governor Pataki to sign, the Public Entities bill to adopt the ADA's Title II requirements into state law.
What about deinstitutionalization and personal assistance services?
If Title II dies, the Supreme Court's Olmstead decision that deemed unnecessary segregation to be illegal will be gone. If no Public Entities bill is enacted in New York, what will remain are economic and political facts. It's an economic fact that keeping a person in a nursing home costs, on average, about 5 times as much as it costs to support that same person in the community. You might think that this reality would force lawmakers to divert most long-term care dollars to community based supports and away from institutions. But this assumes that lawmakers always respond rationally to economic issues. They don't. It's a political fact that lawmakers respond rationally to the people who pay for their campaigns. Many politicians are beholden to nursing home, group home and/or public employee union lobbyists. Every year in New York elected officials make a big public fuss about long-term care costs, and then pass budgets that continue the institutional bias and thereby inflate those costs. On the national level, MiCASSA, the bill to let people who are eligible for nursing homes or ICFs choose community-based services instead, has gone nowhere for nearly a decade.
President Bush will continue his don't-tax/still-spend policies. "National security comes first!" will be presented as the reason why most of the money the government doesn't really have will go to the military and "homeland security", while all federal spending on health care, education, housing, and virtually everything else will be continuously cut back. Bush's "New Freedom Initiative" proposals, including "Money Follows the Person", which require new spending, probably will be quietly retired. Bush himself has never actually fought for them.
Much more dangerous will be the huge pressure on states to cut medical service costs. Bush will come to their "rescue" with plans to deregulate greatly-reduced Medicaid appropriations. The National Governors' Association, currently led by Democrats, opposed Bush's last such proposal because it would have bankrupted the states over the long term. But in the new political climate, governors of both parties may grasp at any straw that staves off disaster even for a few years. A proposal to provide a short-term infusion of new money, and greater flexibility in spending it, to states that agree to a permanent end to guaranteed levels of federal health care funding may get more takers now. Such a plan will probably pass in Congress, though perhaps not easily.
In New York, a few Senate and Assembly seats flipped from Republican to Democrat. However, this did not change the balance of power in either house, and our Governor will still resist expanding Medicaid-funded integrated services. If the federal share of Medicaid declines and is deregulated, we can expect most long-term care funds to go to increasingly under-regulated nursing and group homes in our state.
We may also see managed care nominally extended to all Medicaid recipients with disabilities. I say "nominally" because managed care requires private providers willing to participate. In most parts of the state, there are no providers offering plans to people with disabilities for what Medicaid will pay. The state's "Managed Care Bill of Rights" requires that any person in Medicaid managed care have a choice of at least two plans that meet their needs, so most people with disabilities outside New York City are not in managed care now. If big federal cuts produce pressure to cut state Medicaid spending while keeping group- and nursing-home operators and public employee unions happy, this will change. The Managed Care Bill of Rights will likely be weakened or repealed, and Medicaid services will be available only "on paper" to many people with disabilities--unless they enter nursing homes, group homes, or other institutions.
People with disabilities will need to start playing political hard ball, by investigating and publicizing abuses and crimes committed by nursing- and group-home operators and their political cronies, and by organizing PACs and making big contributions to incumbents in order to make the corrupt system work in our favor. Centers for Independent Living like STIC cannot endorse or oppose political candidates or make political contributions to them without losing not-for-profit status (and, therefore, government funding), so it's going to be up to you now.
And what of Medicare?
We can probably forget about any federal legislation to soften the blow that the Medicare Modernization Act will deal to people who are "dually eligible" for Medicaid and Medicare (see "Medicare 'Modernization': Fight for Your Lives"). Such action was a long shot in the old Congress, with a presidential veto as the last move. Now it's unlikely that any such bills will even get out of committee.
Education
The House-Senate conferees produced a compromise IDEA bill that is more like the Senate version than the House's (see "A New IDEA"). It's not a good law, but it's good that they got it done. Most likely, starting from scratch in the new Congress would have produced a much worse result. In any case, don't look for either IDEA or No Child Left Behind to be funded adequately any time soon.
New York's State Education Department has no stomach for effective enforcement of existing IDEA requirements in school districts. The new, weaker IDEA won't change this. An emerging issue in our state is the lack of effective ways to hold schools accountable for physical or sexual abuse of students with disabilities. This is due to a combination of bigotry against children with intellectual or emotional disabilities in police agencies, and the absence of specific school abuse investigation and enforcement authority in any of the state agencies that govern education or social services. This is such an emotional issue that a well-conducted publicity and lobbying campaign might produce good results. However, families of abused children must come forward in significant numbers, and stay the course despite likely intimidation by school officials.
The pollsters report that people with disabilities supported Bush over Kerry by 52.5% to 46%. While the margin for error on those numbers is 2.5%, it's still the first presidential election in which more people with disabilities voted Republican than Democrat since people started tracking the disability vote. Further analysis shows that most of the people with disabilities who voted had upper-middle-class incomes. Turnout was low among low-income people with disabilities. These facts speak for themselves.
Now we must assess the situation and decide where our attention and resources most need to be focused.
Let's first consider civil rights.
Over the last decade, the US Supreme Court's radical "states' rights" agenda has severely weakened the Americans with Disabilities Act (ADA). President Bush will likely appoint two or three new Supreme Court justices in his second term. Chief Justice Rehnquist, a conservative, is very ill and probably will resign soon. Justice Ruth Bader Ginsburg, a liberal, has had cancer and is said to be considering resigning. Questions have also been raised about "swing vote" Justice Sandra Day O'Connor's age and health. Bush has pledged to appoint only conservative judges. The US Senate, now with a 55 to 45 Republican majority, will be more friendly to such appointments than it was. While Democrats say that the Republicans still don't have the votes to stop a filibuster, that assumes that no Democrats will cross over and support the Republicans. Several Democrats did exactly that on many occasions during Bush's first term. And Republican Senate Majority Leader Bill Frist has said he'd like to change Senate rules to prohibit filibusters on federal court appointees. Replacing Rehnquist with another conservative won't alter the balance on the Court, but if Ginsburg or O'Connor resigns, the moderate coalition that limited the damage of the Garrett decision and brought us victory in Tennessee v Lane will no longer exist. We can probably look forward to the destruction of ADA's Title II in coming years.
With larger Republican majorities in both the House and Senate, it's unlikely that any bill to repair the damage to the ADA will pass, and Bush probably wouldn't sign one anyway. As a result of this election, our brief era of federal civil rights protections for people with disabilities will likely end soon. It is now critical for the New York State Legislature to pass, and Governor Pataki to sign, the Public Entities bill to adopt the ADA's Title II requirements into state law.
What about deinstitutionalization and personal assistance services?
If Title II dies, the Supreme Court's Olmstead decision that deemed unnecessary segregation to be illegal will be gone. If no Public Entities bill is enacted in New York, what will remain are economic and political facts. It's an economic fact that keeping a person in a nursing home costs, on average, about 5 times as much as it costs to support that same person in the community. You might think that this reality would force lawmakers to divert most long-term care dollars to community based supports and away from institutions. But this assumes that lawmakers always respond rationally to economic issues. They don't. It's a political fact that lawmakers respond rationally to the people who pay for their campaigns. Many politicians are beholden to nursing home, group home and/or public employee union lobbyists. Every year in New York elected officials make a big public fuss about long-term care costs, and then pass budgets that continue the institutional bias and thereby inflate those costs. On the national level, MiCASSA, the bill to let people who are eligible for nursing homes or ICFs choose community-based services instead, has gone nowhere for nearly a decade.
President Bush will continue his don't-tax/still-spend policies. "National security comes first!" will be presented as the reason why most of the money the government doesn't really have will go to the military and "homeland security", while all federal spending on health care, education, housing, and virtually everything else will be continuously cut back. Bush's "New Freedom Initiative" proposals, including "Money Follows the Person", which require new spending, probably will be quietly retired. Bush himself has never actually fought for them.
Much more dangerous will be the huge pressure on states to cut medical service costs. Bush will come to their "rescue" with plans to deregulate greatly-reduced Medicaid appropriations. The National Governors' Association, currently led by Democrats, opposed Bush's last such proposal because it would have bankrupted the states over the long term. But in the new political climate, governors of both parties may grasp at any straw that staves off disaster even for a few years. A proposal to provide a short-term infusion of new money, and greater flexibility in spending it, to states that agree to a permanent end to guaranteed levels of federal health care funding may get more takers now. Such a plan will probably pass in Congress, though perhaps not easily.
In New York, a few Senate and Assembly seats flipped from Republican to Democrat. However, this did not change the balance of power in either house, and our Governor will still resist expanding Medicaid-funded integrated services. If the federal share of Medicaid declines and is deregulated, we can expect most long-term care funds to go to increasingly under-regulated nursing and group homes in our state.
We may also see managed care nominally extended to all Medicaid recipients with disabilities. I say "nominally" because managed care requires private providers willing to participate. In most parts of the state, there are no providers offering plans to people with disabilities for what Medicaid will pay. The state's "Managed Care Bill of Rights" requires that any person in Medicaid managed care have a choice of at least two plans that meet their needs, so most people with disabilities outside New York City are not in managed care now. If big federal cuts produce pressure to cut state Medicaid spending while keeping group- and nursing-home operators and public employee unions happy, this will change. The Managed Care Bill of Rights will likely be weakened or repealed, and Medicaid services will be available only "on paper" to many people with disabilities--unless they enter nursing homes, group homes, or other institutions.
People with disabilities will need to start playing political hard ball, by investigating and publicizing abuses and crimes committed by nursing- and group-home operators and their political cronies, and by organizing PACs and making big contributions to incumbents in order to make the corrupt system work in our favor. Centers for Independent Living like STIC cannot endorse or oppose political candidates or make political contributions to them without losing not-for-profit status (and, therefore, government funding), so it's going to be up to you now.
And what of Medicare?
We can probably forget about any federal legislation to soften the blow that the Medicare Modernization Act will deal to people who are "dually eligible" for Medicaid and Medicare (see "Medicare 'Modernization': Fight for Your Lives"). Such action was a long shot in the old Congress, with a presidential veto as the last move. Now it's unlikely that any such bills will even get out of committee.
Education
The House-Senate conferees produced a compromise IDEA bill that is more like the Senate version than the House's (see "A New IDEA"). It's not a good law, but it's good that they got it done. Most likely, starting from scratch in the new Congress would have produced a much worse result. In any case, don't look for either IDEA or No Child Left Behind to be funded adequately any time soon.
New York's State Education Department has no stomach for effective enforcement of existing IDEA requirements in school districts. The new, weaker IDEA won't change this. An emerging issue in our state is the lack of effective ways to hold schools accountable for physical or sexual abuse of students with disabilities. This is due to a combination of bigotry against children with intellectual or emotional disabilities in police agencies, and the absence of specific school abuse investigation and enforcement authority in any of the state agencies that govern education or social services. This is such an emotional issue that a well-conducted publicity and lobbying campaign might produce good results. However, families of abused children must come forward in significant numbers, and stay the course despite likely intimidation by school officials.
Housing Battle Rages On
The battle for federal Section 8 housing subsidies continued in Washington in the fall. Section 8 provides vouchers to enable low-income people with and without disabilities to rent or buy decent housing.
Federal Department of Housing and Urban Development (HUD) Secretary Alphonso Jackson met with disability advocates, including representatives of the National Council on Independent Living (NCIL), to hear their concerns. Although he promised "prompt answers" to their questions, as of press time, NCIL had not reported any of his responses.
Nonetheless, advocates won another small victory. In order to determine how much to pay for housing, HUD sets "fair market rent" (FMR) rates for apartments of various sizes in different locations. Landlords who participate in Section 8 agree to accept the monthly FMR amount. Section 8 tenants contribute 30% of their income, and HUD pays the rest. In September, HUD announced changes to its method for computing FMR. These included using 2000 census data and changing the geographic boundaries of many urban "markets". Advocates quickly saw that the latter change, by including lower-cost outlying suburbs, reduced FMR well below real-life costs in large cities. The result would be that many big-city landlords would opt out of Section 8, leaving tens of thousands of people homeless. Republican Congressman Christopher Shays of CT spearheaded a protest on this issue, and HUD quickly backtracked.
However, the other changes to FMR calculations are in HUD's 2004-05 operating procedures. There is still a tendency to overestimate housing cost declines in some large cities; for example, in Boston, which has seen a 1.3% decline in housing costs over the last couple of years, HUD's new formula cuts FMR by 10%.
During Congress's November "lame duck" session we heard that some conference committee delegates working to reconcile budget bills tried to put some HUD proposals that both houses had already rejected back in, including converting the program to a block grant that would not always target the lowest-income people or provide permanent guarantees of assistance. At press time we didn't know if this effort succeeded.
In the Greater Binghamton Region the waiting list for Section 8 vouchers hasn't moved for years, and the option to use Section 8 to buy a home isn't available. Binghamton landlords have little interest in marketing vacancies to tenants with disabilities, and availability of accessible low-income housing ranges between adequate and inadequate from year to year. The federal Fair Housing Act requires most landlords to let tenants with disabilities modify apartments for access as long as the modifications can be removed if the tenant moves out. However, there is no source of funds to pay for such modifications for most people with disabilities. The new Nursing Home Transition/Diversion Waiver may address that problem, once it takes effect in a year or two.
Federal Department of Housing and Urban Development (HUD) Secretary Alphonso Jackson met with disability advocates, including representatives of the National Council on Independent Living (NCIL), to hear their concerns. Although he promised "prompt answers" to their questions, as of press time, NCIL had not reported any of his responses.
Nonetheless, advocates won another small victory. In order to determine how much to pay for housing, HUD sets "fair market rent" (FMR) rates for apartments of various sizes in different locations. Landlords who participate in Section 8 agree to accept the monthly FMR amount. Section 8 tenants contribute 30% of their income, and HUD pays the rest. In September, HUD announced changes to its method for computing FMR. These included using 2000 census data and changing the geographic boundaries of many urban "markets". Advocates quickly saw that the latter change, by including lower-cost outlying suburbs, reduced FMR well below real-life costs in large cities. The result would be that many big-city landlords would opt out of Section 8, leaving tens of thousands of people homeless. Republican Congressman Christopher Shays of CT spearheaded a protest on this issue, and HUD quickly backtracked.
However, the other changes to FMR calculations are in HUD's 2004-05 operating procedures. There is still a tendency to overestimate housing cost declines in some large cities; for example, in Boston, which has seen a 1.3% decline in housing costs over the last couple of years, HUD's new formula cuts FMR by 10%.
During Congress's November "lame duck" session we heard that some conference committee delegates working to reconcile budget bills tried to put some HUD proposals that both houses had already rejected back in, including converting the program to a block grant that would not always target the lowest-income people or provide permanent guarantees of assistance. At press time we didn't know if this effort succeeded.
In the Greater Binghamton Region the waiting list for Section 8 vouchers hasn't moved for years, and the option to use Section 8 to buy a home isn't available. Binghamton landlords have little interest in marketing vacancies to tenants with disabilities, and availability of accessible low-income housing ranges between adequate and inadequate from year to year. The federal Fair Housing Act requires most landlords to let tenants with disabilities modify apartments for access as long as the modifications can be removed if the tenant moves out. However, there is no source of funds to pay for such modifications for most people with disabilities. The new Nursing Home Transition/Diversion Waiver may address that problem, once it takes effect in a year or two.
Join ADAPT in Washington
by Amber George
On February 25, 2005 the National ADAPT (American Disabled for Attendant Programs Today) movement will awaken from its winter sleep to converge in Washington, DC for the National Governors Association (NGA) meeting. This year ADAPT will stay in DC for five days to build upon the victory gained from the summer protests at the NGA meeting in Seattle. After three days of intense protesting in Seattle, activists got ADAPT's long-term care resolution introduced to the NGA membership. The resolution would express NGA support for reforming the Medicaid long-term care system to enable community based services for Americans with disabilities. It is time for this country to uphold its promise to change the long-term care system, get people out of institutions, and provide attendant services in the community. It's been close to 6 months since the summer meeting and we are ready to tell them again, "NGA, Pass the resolution!"
Rallying in the nation's capital will involve a number of activities supporting passage of ADAPT's resolution. Typically nationwide demonstrations are done after the attempts at diplomacy fail or go unrecognized. Although there are numerous ADAPT chapters throughout the county, the overall body coordinates its efforts nationally. "ADAPTers" from each chapter and from each state will certainly be there.
The activities planned for the DC meeting are not limited to simply passing the resolution. We will address other key issues related to ending the institutional bias. Disability rights activists will insist on individual empowerment and collective control over necessities of life such as freedom, affordable accessible housing, transportation, personal care, respect, independence and so on. It is probable that we will address passage of MiCASSA (Medicaid Community Attendant Services and Supports Act), protest Medicaid block grants, and oppose cuts to Section 8 and other related issues.
For far too long people with disabilities have been locked away in the closets, tombs, and institutions of this "enlightened" society. But another kind of society is growing. It is one that is politically active. This new understanding has affected its aspirations and responsibilities. ADAPT activism has to do with being proud and having a culture that expands and says that there is a new definition of disability and it includes power. ADAPT means liberation and human rights, education and organization, integration and independence, dignity and self-determination. While we know that the barriers to progress are intricate, the weight of history is immense, and the outcome of it all is uncertain, one thing remains true. The number of advocates involved in this movement continues to increase. Growth promises that people with disabilities will gain more and more control.
It is crucial that we keep this momentum going. In order to be successful our presence must be powerful and prepared. At each ADAPT action there are opportunities for new people to learn more about ADAPT's philosophy, activist tactics, strategies, leadership, and disability history. The ADAPT group welcomes new recruits and strives to ensure that everyone is included!
If you would like more information about ADAPT and the upcoming DC action please call Amber George at (607) 724-2111 (voice/TTY) or email: advocate@stic-cil.org.
Rallying in the nation's capital will involve a number of activities supporting passage of ADAPT's resolution. Typically nationwide demonstrations are done after the attempts at diplomacy fail or go unrecognized. Although there are numerous ADAPT chapters throughout the county, the overall body coordinates its efforts nationally. "ADAPTers" from each chapter and from each state will certainly be there.
The activities planned for the DC meeting are not limited to simply passing the resolution. We will address other key issues related to ending the institutional bias. Disability rights activists will insist on individual empowerment and collective control over necessities of life such as freedom, affordable accessible housing, transportation, personal care, respect, independence and so on. It is probable that we will address passage of MiCASSA (Medicaid Community Attendant Services and Supports Act), protest Medicaid block grants, and oppose cuts to Section 8 and other related issues.
For far too long people with disabilities have been locked away in the closets, tombs, and institutions of this "enlightened" society. But another kind of society is growing. It is one that is politically active. This new understanding has affected its aspirations and responsibilities. ADAPT activism has to do with being proud and having a culture that expands and says that there is a new definition of disability and it includes power. ADAPT means liberation and human rights, education and organization, integration and independence, dignity and self-determination. While we know that the barriers to progress are intricate, the weight of history is immense, and the outcome of it all is uncertain, one thing remains true. The number of advocates involved in this movement continues to increase. Growth promises that people with disabilities will gain more and more control.
It is crucial that we keep this momentum going. In order to be successful our presence must be powerful and prepared. At each ADAPT action there are opportunities for new people to learn more about ADAPT's philosophy, activist tactics, strategies, leadership, and disability history. The ADAPT group welcomes new recruits and strives to ensure that everyone is included!
If you would like more information about ADAPT and the upcoming DC action please call Amber George at (607) 724-2111 (voice/TTY) or email: advocate@stic-cil.org.
Medicare "Modernization":
Fight for Your Lives!
The most important parts of the new federal Medicare Modernization Act (MMA) don't take effect until 2006, so you may think there's lots of time to prepare. However, there are potentially catastrophic problems with that law and advocates are working hard to try to minimize them.
One strategy involves trying to amend or repeal the law in Congress. The 2004 election results suggest that nothing positive will result from this strategy, over the next couple of years at least. President Bush has said he will veto anything that expands coverage or lets the feds cut costs by buying drugs in bulk, and this Congress is not going to override any Bush vetoes. It's possible that an amendment to shrink the alleged drug "benefit" could go through, as pressure to cut all non-military spending grows under Bush's don't-tax/still-spend policies. It might be smarter for activists not to open the door to that by pushing too hard to revisit the law.
So the struggle moves to the regulatory arena and state government.
It's bad enough that the law will end Medicaid prescription drug coverage for "dual eligibles"--mostly people with congenital disabilities who are eligible for Medicaid because their low incomes qualify for SSI, and for Medicare because they have a work history. The really scary part is that these folks will lose Medicaid drug coverage on January 1, 2006, but won't be automatically enrolled in a Medicare drug plan until after May 15, 2006. This raises the specter of hundreds of thousands of people literally dying due to a gap in their drug coverage.
In fairness, we must report that these folks will be able to voluntarily enroll in a Medicare drug plan before January 2006. And they ought to look into it, because it may be possible that they'll find a plan that meets most of their needs, whereas if they wait, they'll be dumped into a catch-all plan that may not meet their needs at all. The law allows plan providers to change the coverage without notice but does not let plan participants switch plans more than once a year.
We must also say that we see no evidence for the rumor that the MMA affects eligibility for the Medicaid Buy-In. The MMA dual-eligible exclusion affects prescription coverage only, not general Medicaid eligibility. It prohibits the state from using Medicaid to pay Medicare prescription deductibles and co-pays for Buy-In eligible people, but it doesn't affect availability of Medicaid-funded personal assistance or other non-prescription services to Buy-In participants.
People in the dual eligible group tend to be the poorest, least educated, and least-informed people with disabilities; many have intellectual or cognitive disabilities. It's unrealistic to expect most of them to follow the news and come forward to enroll in plans. It would take a massive door-to-door outreach project to get to them, and we can safely assume that the feds won't pay for that. Advocates have been warning the Centers for Medicare and Medicaid Services (CMS) about this impending disaster, and CMS officials say they are "aware" of it and there "won't be a gap" in the final regulations. However, CMS doesn't have the authority to rewrite the law.
That brings us to state government. Since states will no longer pay a share of Medicaid for drugs for over 6 million "dual eligibles", they should reap a grisly "windfall" beginning in mid-2006. It will come at the price of broken health for millions of low-income people with disabilities who won't be able to get essential drugs, because they can't find a plan that covers them or because they can't afford the Medicare deductibles and co-pays, which can cost thousands of dollars a year and can't be covered by Medicaid. New York's leaders must step in with 100% state dollars to save these people. At minimum, they'll need to pay for all medications for dual-eligibles who are victimized by the 6-month gap. We also need NY's Elderly Pharmaceutical Insurance Coverage program (EPIC) to serve people with disabilities of any age who can't get adequate drug coverage under Medicaid or Medicare, or who can't afford the co-pays. EPIC should see a windfall too, as many of the people it serves will now get their drugs through Medicare.
How likely are these things to happen? It depends. New York lawmakers have a long history of using "windfalls" intended to improve the health and well-being of citizens (including money gained from closing psychiatric centers, tobacco lawsuits, and non-profit-to-for-profit health insurance company conversions) to finance tax cuts for the wealthy. Most likely they'll try it again. We can only remind you that this time, people will die in huge numbers--more even than those with mental disabilities who have died homeless on the streets or in the state's wretched adult "homes"--if we don't win. Fortunately, we've also seen that if the disability community makes the fight ugly and public, these people will back down and do the right thing. Watch these pages, our website, and your email for information on how you can fight for your lives.
One strategy involves trying to amend or repeal the law in Congress. The 2004 election results suggest that nothing positive will result from this strategy, over the next couple of years at least. President Bush has said he will veto anything that expands coverage or lets the feds cut costs by buying drugs in bulk, and this Congress is not going to override any Bush vetoes. It's possible that an amendment to shrink the alleged drug "benefit" could go through, as pressure to cut all non-military spending grows under Bush's don't-tax/still-spend policies. It might be smarter for activists not to open the door to that by pushing too hard to revisit the law.
So the struggle moves to the regulatory arena and state government.
It's bad enough that the law will end Medicaid prescription drug coverage for "dual eligibles"--mostly people with congenital disabilities who are eligible for Medicaid because their low incomes qualify for SSI, and for Medicare because they have a work history. The really scary part is that these folks will lose Medicaid drug coverage on January 1, 2006, but won't be automatically enrolled in a Medicare drug plan until after May 15, 2006. This raises the specter of hundreds of thousands of people literally dying due to a gap in their drug coverage.
In fairness, we must report that these folks will be able to voluntarily enroll in a Medicare drug plan before January 2006. And they ought to look into it, because it may be possible that they'll find a plan that meets most of their needs, whereas if they wait, they'll be dumped into a catch-all plan that may not meet their needs at all. The law allows plan providers to change the coverage without notice but does not let plan participants switch plans more than once a year.
We must also say that we see no evidence for the rumor that the MMA affects eligibility for the Medicaid Buy-In. The MMA dual-eligible exclusion affects prescription coverage only, not general Medicaid eligibility. It prohibits the state from using Medicaid to pay Medicare prescription deductibles and co-pays for Buy-In eligible people, but it doesn't affect availability of Medicaid-funded personal assistance or other non-prescription services to Buy-In participants.
People in the dual eligible group tend to be the poorest, least educated, and least-informed people with disabilities; many have intellectual or cognitive disabilities. It's unrealistic to expect most of them to follow the news and come forward to enroll in plans. It would take a massive door-to-door outreach project to get to them, and we can safely assume that the feds won't pay for that. Advocates have been warning the Centers for Medicare and Medicaid Services (CMS) about this impending disaster, and CMS officials say they are "aware" of it and there "won't be a gap" in the final regulations. However, CMS doesn't have the authority to rewrite the law.
That brings us to state government. Since states will no longer pay a share of Medicaid for drugs for over 6 million "dual eligibles", they should reap a grisly "windfall" beginning in mid-2006. It will come at the price of broken health for millions of low-income people with disabilities who won't be able to get essential drugs, because they can't find a plan that covers them or because they can't afford the Medicare deductibles and co-pays, which can cost thousands of dollars a year and can't be covered by Medicaid. New York's leaders must step in with 100% state dollars to save these people. At minimum, they'll need to pay for all medications for dual-eligibles who are victimized by the 6-month gap. We also need NY's Elderly Pharmaceutical Insurance Coverage program (EPIC) to serve people with disabilities of any age who can't get adequate drug coverage under Medicaid or Medicare, or who can't afford the co-pays. EPIC should see a windfall too, as many of the people it serves will now get their drugs through Medicare.
How likely are these things to happen? It depends. New York lawmakers have a long history of using "windfalls" intended to improve the health and well-being of citizens (including money gained from closing psychiatric centers, tobacco lawsuits, and non-profit-to-for-profit health insurance company conversions) to finance tax cuts for the wealthy. Most likely they'll try it again. We can only remind you that this time, people will die in huge numbers--more even than those with mental disabilities who have died homeless on the streets or in the state's wretched adult "homes"--if we don't win. Fortunately, we've also seen that if the disability community makes the fight ugly and public, these people will back down and do the right thing. Watch these pages, our website, and your email for information on how you can fight for your lives.
A New IDEA
Just before we went to press, Congress passed a compromise IDEA bill. President Bush was expected to sign it.
We did not receive enough information about the new law in time to provide a detailed summary here; we hope to do so in the next issue. However, advocates scored a minor victory; their heroic efforts ensured that the final product was much closer to the Senate's version than to the House's. The key points are these:
The House plan to require state Governors to cap IDEA litigation attorneys' fees was removed. However, the information we have so far isn't clear on whether families filing formal complaints will have to face a full IEP team meeting before the hearing/litigation process begins.
The House's ignorant approach to discipline, which would have let schools suspend or expel students with disabilities for bad behavior regardless of whether the behavior was disability-related or resulted from the school's failure to develop or follow an appropriate behavior plan, was dropped. However, the new law provides that children can be moved to a different placement during the investigation and fair hearing process for proposed suspensions or expulsions, eliminating the "stay put" provision in the current law.
Most of the changes will take effect on July 1, 2005; new, stronger requirements regarding qualifications of special education teachers will take effect on the day the President signs the bill. In any case, the federal Education Department will have to draft new regulations and put them out for public comment, after which the NYS Education Department will have to do the same, before the law can fully come into force. We'll keep you posted.
We did not receive enough information about the new law in time to provide a detailed summary here; we hope to do so in the next issue. However, advocates scored a minor victory; their heroic efforts ensured that the final product was much closer to the Senate's version than to the House's. The key points are these:
The House plan to require state Governors to cap IDEA litigation attorneys' fees was removed. However, the information we have so far isn't clear on whether families filing formal complaints will have to face a full IEP team meeting before the hearing/litigation process begins.
The House's ignorant approach to discipline, which would have let schools suspend or expel students with disabilities for bad behavior regardless of whether the behavior was disability-related or resulted from the school's failure to develop or follow an appropriate behavior plan, was dropped. However, the new law provides that children can be moved to a different placement during the investigation and fair hearing process for proposed suspensions or expulsions, eliminating the "stay put" provision in the current law.
Most of the changes will take effect on July 1, 2005; new, stronger requirements regarding qualifications of special education teachers will take effect on the day the President signs the bill. In any case, the federal Education Department will have to draft new regulations and put them out for public comment, after which the NYS Education Department will have to do the same, before the law can fully come into force. We'll keep you posted.
Report Voter Discrimination!
by Amber George
This year record numbers of citizens turned out to vote in what many deem the most influential election in America's history. People with disabilities were out in full force on this day as well. However many people ran into problems at their polling sites due to inaccessible machines and polling sites, and/or poll-worker insensitivity. New York State's elected officials have shown us that they are unable to reach consensus on how to meet the disability access requirements in the Help America Vote Act (HAVA). So, it is now up to us to help move this process along.
The New York State Independent Living Council (NYSILC) and the Catskill Center for Independence are gathering information about instances where people with disabilities have been discriminated against while voting.
Could you get into your polling site? Did you vote by absentee ballot? If so, why? If you went out to vote, were you able to get inside your polling place without assistance? Could you read the signs directing you to the appropriate district line? Were you able to pull the lever to close the curtain? Did you find the full-face ballot confusing? Could you see the party names, races, and candidates on the ballot without assistance? Were you able to reach up and pull the candidate levers to make your choices? Were you able to cast your vote without taking a person or two poll-workers into the booth with you?
If you answered "No" to any of these questions, you have experienced voter discrimination. New Yorkers with disabilities have waited for more than 200 years to vote privately and independently. We want New York State to repeal the full-face ballot law. The full-face ballot is the biggest obstacle in the way of full voting access for New Yorkers with disabilities.
We won't stand by and let the politicians deny people their civil rights. Advocates at STIC have been diligently working on this problem. We've gone to Albany and attended the joint HAVA meetings between the Assembly and the Senate, we've published articles in the press, written testimony for the government, and protested publicly. Now we are collecting data about the inability of some individuals to cast a secret and private vote.
While Broome County seems to have 100% polling site accessibility in terms of architectural barriers, there are no fully accessible voting machines in the county. And there are many other NY counties where architectural as well as technological barriers impede the ability of people with disabilities to vote. This is also true for the nation at large. A recent National Organization on Disability poll found that 21% of adults with disabilities--more than 8 million potential voters--couldn't cast ballots in past presidential and congressional elections due to barriers they faced at the polls or in getting there. Many people with disabilities have personally told me that in order to avoid polling site problems and humiliation they simply cast an absentee ballot. This is problematic because absentee ballots are counted last, often after a candidate has conceded defeat, even if the absentee votes could have changed the outcome. Also, politicians need to see people with disabilities voting publicly to understand that they must respond to their issues.
That is why it is important that you take a moment or two and fill out a Voter Discrimination Complaint form. We need to spread the word that people with disabilities must be able to cast an independent vote just like any other American citizen.
The information from the voting discrimination forms will be confidentially compiled into a comprehensive report. It will be presented to the NYS Legislature and Governor to urge them to take action. Down the road, if we don't see results, the information may be used for a class-action lawsuit against NYS. You'll have the option to decide if you want to take part in the suit.
Getting as many people as we can to fill out this form is crucial for making NYS amend the election law to provide full access to voting machines, the ballot, and polling places. Change is only going to happen if our state leaders see that we are serious about our voting rights! You can review the process on the Catskill Center For Independence website, www.ccfi.us. There you can download the complaint form or submit it online in an electronic format. Here's the page where you can electronically submit the complaint form:
www.ccfi.us/Votercomplaintform.htm
If you or someone you know had problems with physically accessing the lever machines, understanding and/or seeing the full-face ballot, or could not physically enter the polling site, please fill out this form.
Paper copies of the Voter Discrimination Form can be obtained from Amber George at STIC (607) 724-2111 (voice/TTY).
The New York State Independent Living Council (NYSILC) and the Catskill Center for Independence are gathering information about instances where people with disabilities have been discriminated against while voting.
Could you get into your polling site? Did you vote by absentee ballot? If so, why? If you went out to vote, were you able to get inside your polling place without assistance? Could you read the signs directing you to the appropriate district line? Were you able to pull the lever to close the curtain? Did you find the full-face ballot confusing? Could you see the party names, races, and candidates on the ballot without assistance? Were you able to reach up and pull the candidate levers to make your choices? Were you able to cast your vote without taking a person or two poll-workers into the booth with you?
If you answered "No" to any of these questions, you have experienced voter discrimination. New Yorkers with disabilities have waited for more than 200 years to vote privately and independently. We want New York State to repeal the full-face ballot law. The full-face ballot is the biggest obstacle in the way of full voting access for New Yorkers with disabilities.
We won't stand by and let the politicians deny people their civil rights. Advocates at STIC have been diligently working on this problem. We've gone to Albany and attended the joint HAVA meetings between the Assembly and the Senate, we've published articles in the press, written testimony for the government, and protested publicly. Now we are collecting data about the inability of some individuals to cast a secret and private vote.
While Broome County seems to have 100% polling site accessibility in terms of architectural barriers, there are no fully accessible voting machines in the county. And there are many other NY counties where architectural as well as technological barriers impede the ability of people with disabilities to vote. This is also true for the nation at large. A recent National Organization on Disability poll found that 21% of adults with disabilities--more than 8 million potential voters--couldn't cast ballots in past presidential and congressional elections due to barriers they faced at the polls or in getting there. Many people with disabilities have personally told me that in order to avoid polling site problems and humiliation they simply cast an absentee ballot. This is problematic because absentee ballots are counted last, often after a candidate has conceded defeat, even if the absentee votes could have changed the outcome. Also, politicians need to see people with disabilities voting publicly to understand that they must respond to their issues.
That is why it is important that you take a moment or two and fill out a Voter Discrimination Complaint form. We need to spread the word that people with disabilities must be able to cast an independent vote just like any other American citizen.
The information from the voting discrimination forms will be confidentially compiled into a comprehensive report. It will be presented to the NYS Legislature and Governor to urge them to take action. Down the road, if we don't see results, the information may be used for a class-action lawsuit against NYS. You'll have the option to decide if you want to take part in the suit.
Getting as many people as we can to fill out this form is crucial for making NYS amend the election law to provide full access to voting machines, the ballot, and polling places. Change is only going to happen if our state leaders see that we are serious about our voting rights! You can review the process on the Catskill Center For Independence website, www.ccfi.us. There you can download the complaint form or submit it online in an electronic format. Here's the page where you can electronically submit the complaint form:
www.ccfi.us/Votercomplaintform.htm
If you or someone you know had problems with physically accessing the lever machines, understanding and/or seeing the full-face ballot, or could not physically enter the polling site, please fill out this form.
Paper copies of the Voter Discrimination Form can be obtained from Amber George at STIC (607) 724-2111 (voice/TTY).
State Budget Update
In a surprising turn of events, the NYS Assembly failed to muster the votes to override Governor Pataki's budget vetoes as Assembly Speaker Sheldon Silver had promised. (See the previous issue of AccessAbility for whose oxen remain gored.) Although rumors had been circulating that Pataki and Senate Majority Leader Bruno might yet negotiate some individual restorations, at press time we had heard nothing notable from the Legislature's post-election session. With the Democrats picking up a seat or two in the Assembly, Silver might stand a better chance the next time he calls for veto overrides, but that won't affect the 2004-05 budget.
Sweating the Most Integrated Setting
After the media reported that OMRDD Commissioner and NYS Most Integrated Setting Coordinating Council (MISCC) Chairman Tom Maul said he didn't know what was in the Most Integrated Setting law, the September MISCC meeting seems to have focused remarkably clearly on the law's mandates. The Council's future meeting schedule also appears to have tightened up. However, at press time there was no sign that the provision that the MISCC chair must rotate to other state agencies will be enforced.
Here's our analysis of what went on at the September MISCC meeting, according to a brief unofficial summary prepared by an observer.
The Data committee has been assembling the required statistics on institutional and community-based services, and finds that all the relevant state agencies have been increasing "community based services". The committee recommended emphasizing "local solution oriented thinking".
OMRDD and OMH label even large group homes with 12 or more residents "community based", even if those who live there spend all their time in them and/or in segregated day or recreation programs. The disability community doesn't accept this definition of "community based". We suggest that the MISCC look at the definition of "integrated community-based settings" that the VESID/CIL Deinstitutionalization Cost Savings reporting system uses. The Data committee report could greatly over-represent the true extent of community based services in the state, resulting in a final plan that does not enjoy legitimacy in the disability community. And "local solution oriented thinking" sounds like an excuse for the MISCC not to create uniform statewide mandates to systematically reduce segregation and increase integration. Our state has clearly shown over the last 15 years that "encouraging" local authorities to be "creative" in the absence of effective centrally-administered measures to weed out incompetents and foot-draggers results in wildly uneven results across the state. New York must turn decisively away from that model.
The Assessment committee has finally shown that it understands that the MISCC is required by law to devise a uniform needs assessment to be used by a single entity in each county. The summary reports that the Committee has proposed "Principles of Community Assessment" and emphasizes that the single entity must carry out the "full scope of the MISCC charge". The committee has not yet defined "single entity", though. And the Community Services committee doesn't seem to have grasped the legal requirements; their report called for requiring all service systems and programs to "adopt MISCC principles for assessment". In fact, the law requires that all service systems and programs stop doing their own assessments and defer to a single entity.
The summary, though brief, provides hope that the uniform assessment system may be strong enough to remove the endemic problem of service providers who "assess" people in such a way as to ensure that they "qualify" for the services they provide, and who refuse to tell consumers about other services available from different providers. We understand the difficulty of defining "single entity", especially in densely-populated urban areas. STIC's response to the joint NYS Department of Health/Office for Aging Request for Information on this issue suggested that the only fair and effective way to end such abuses is to create a new state agency whose only job is to conduct such assessments, and put state-operated branch offices in every county. Failing this, the only acceptable alternative would be for the state to contract with local, independent not-for-profit agencies that are prohibited from providing any of the services for which need will be assessed. Any other arrangement will perpetuate mischief. Regulations that forbid abuses where the potential for them exists will not solve the problem. Similar regulations exist now in many service systems, but providers routinely ignore them and the state refuses to enforce them.
The Quality Assurance Committee has looked at many existing process-oriented methodologies and tried to condense them. However, there is no mention of success measures in the summary.
STIC believes that the MISCC must measure the usage rates of properly-defined community-based and segregated services, and that success hinges on steady increases in the former coupled with steady decreases in the latter. Process-based quality assurance measures cannot substitute for this all-important outcome measure.
The Transportation Committee has correctly identified a number of specific impediments to better access to transportation for people with disabilities.
Unfortunately, several of them relate to federal issues, such as Section 5310 programs and ADA paratransit regulations, that the MISCC cannot affect. Others, such as putting more people with disabilities on public transit decision-making bodies and training more people to use fixed-route buses, only address the tip of the iceberg. The fact is that, outside of New York City and perhaps Buffalo, mass transit is not a viable way to get large numbers of people with disabilities to and from work every day or to other places when they need to be there. In most parts of New York, personal transportation is how nondisabled people manage this, and it's the only way to do it for most people with disabilities. The huge expansion of mass transit and paratransit that would be required to address this issue effectively is simply not going to happen; the money is not there, and will never be there. It would actually be less expensive, and much more do-able, to give people with disabilities vouchers to enable them to buy their own vehicles or hire drivers.
The summary also reports that much public comment, both at the August public forums and at this meeting, focused on the need for the MISCC to systematically address housing issues. There was no indication that the MISCC has taken any steps to do so, however.
Advocates remained very concerned that there is a "hidden agenda" to ensure that the MISCC final plan relies extensively on segregated group-living models to address housing needs. Such a plan would be unacceptable in the disability community and would destroy the credibility of the MISCC as a legitimate tool for carrying out the Supreme Court Olmstead decision in New York.
The summary indicated that two meetings were scheduled for October. At press time we had not received any information about them. As of December 15, the MISCC final plan is one year late.
Here's our analysis of what went on at the September MISCC meeting, according to a brief unofficial summary prepared by an observer.
The Data committee has been assembling the required statistics on institutional and community-based services, and finds that all the relevant state agencies have been increasing "community based services". The committee recommended emphasizing "local solution oriented thinking".
OMRDD and OMH label even large group homes with 12 or more residents "community based", even if those who live there spend all their time in them and/or in segregated day or recreation programs. The disability community doesn't accept this definition of "community based". We suggest that the MISCC look at the definition of "integrated community-based settings" that the VESID/CIL Deinstitutionalization Cost Savings reporting system uses. The Data committee report could greatly over-represent the true extent of community based services in the state, resulting in a final plan that does not enjoy legitimacy in the disability community. And "local solution oriented thinking" sounds like an excuse for the MISCC not to create uniform statewide mandates to systematically reduce segregation and increase integration. Our state has clearly shown over the last 15 years that "encouraging" local authorities to be "creative" in the absence of effective centrally-administered measures to weed out incompetents and foot-draggers results in wildly uneven results across the state. New York must turn decisively away from that model.
The Assessment committee has finally shown that it understands that the MISCC is required by law to devise a uniform needs assessment to be used by a single entity in each county. The summary reports that the Committee has proposed "Principles of Community Assessment" and emphasizes that the single entity must carry out the "full scope of the MISCC charge". The committee has not yet defined "single entity", though. And the Community Services committee doesn't seem to have grasped the legal requirements; their report called for requiring all service systems and programs to "adopt MISCC principles for assessment". In fact, the law requires that all service systems and programs stop doing their own assessments and defer to a single entity.
The summary, though brief, provides hope that the uniform assessment system may be strong enough to remove the endemic problem of service providers who "assess" people in such a way as to ensure that they "qualify" for the services they provide, and who refuse to tell consumers about other services available from different providers. We understand the difficulty of defining "single entity", especially in densely-populated urban areas. STIC's response to the joint NYS Department of Health/Office for Aging Request for Information on this issue suggested that the only fair and effective way to end such abuses is to create a new state agency whose only job is to conduct such assessments, and put state-operated branch offices in every county. Failing this, the only acceptable alternative would be for the state to contract with local, independent not-for-profit agencies that are prohibited from providing any of the services for which need will be assessed. Any other arrangement will perpetuate mischief. Regulations that forbid abuses where the potential for them exists will not solve the problem. Similar regulations exist now in many service systems, but providers routinely ignore them and the state refuses to enforce them.
The Quality Assurance Committee has looked at many existing process-oriented methodologies and tried to condense them. However, there is no mention of success measures in the summary.
STIC believes that the MISCC must measure the usage rates of properly-defined community-based and segregated services, and that success hinges on steady increases in the former coupled with steady decreases in the latter. Process-based quality assurance measures cannot substitute for this all-important outcome measure.
The Transportation Committee has correctly identified a number of specific impediments to better access to transportation for people with disabilities.
Unfortunately, several of them relate to federal issues, such as Section 5310 programs and ADA paratransit regulations, that the MISCC cannot affect. Others, such as putting more people with disabilities on public transit decision-making bodies and training more people to use fixed-route buses, only address the tip of the iceberg. The fact is that, outside of New York City and perhaps Buffalo, mass transit is not a viable way to get large numbers of people with disabilities to and from work every day or to other places when they need to be there. In most parts of New York, personal transportation is how nondisabled people manage this, and it's the only way to do it for most people with disabilities. The huge expansion of mass transit and paratransit that would be required to address this issue effectively is simply not going to happen; the money is not there, and will never be there. It would actually be less expensive, and much more do-able, to give people with disabilities vouchers to enable them to buy their own vehicles or hire drivers.
The summary also reports that much public comment, both at the August public forums and at this meeting, focused on the need for the MISCC to systematically address housing issues. There was no indication that the MISCC has taken any steps to do so, however.
Advocates remained very concerned that there is a "hidden agenda" to ensure that the MISCC final plan relies extensively on segregated group-living models to address housing needs. Such a plan would be unacceptable in the disability community and would destroy the credibility of the MISCC as a legitimate tool for carrying out the Supreme Court Olmstead decision in New York.
The summary indicated that two meetings were scheduled for October. At press time we had not received any information about them. As of December 15, the MISCC final plan is one year late.
Tech Act Becomes Fact
People with disabilities scored an important federal victory this fall. Congress passed, and President Bush signed, the Assistive Technology Act of 2004. This law updates and replaces the Technology Related Assistance Act of 1988. The most important change is that the old law's "sunset" provision, which required Congress to reauthorize it every several years, is gone. Federal technology assistance programs for people with disabilities are now permanent.
That is, as long as they are funded. The original bill's language concerning funding was considerably watered down before final passage. Advocates were pushing Congress to actually appropriate funds for the Act during the autumn "lame duck" session.
The law governs STIC's TRAID Center under the auspices of the NYS Office of Advocate for People with Disabilities and the NYS Department of Health. This program partially supports our equipment Loan Closet, and most of our technology demonstration, selection, and consulting services. Funding is secure for the 2005-06 project year, but will depend in future years on what Congress does. The new law is a bit more specific on the activities a state's TRAID program must carry out, but it's too early to say if there will be changes in STIC's program as a result.
That is, as long as they are funded. The original bill's language concerning funding was considerably watered down before final passage. Advocates were pushing Congress to actually appropriate funds for the Act during the autumn "lame duck" session.
The law governs STIC's TRAID Center under the auspices of the NYS Office of Advocate for People with Disabilities and the NYS Department of Health. This program partially supports our equipment Loan Closet, and most of our technology demonstration, selection, and consulting services. Funding is secure for the 2005-06 project year, but will depend in future years on what Congress does. The new law is a bit more specific on the activities a state's TRAID program must carry out, but it's too early to say if there will be changes in STIC's program as a result.
SELF HELP ISSUES & ANSWERS
Lessons on Fear and Independence
by AnnMarie Reynolds
I was pretty sure that having a child with cerebral palsy was no blessing, for me or for her. At least, that was how I felt when she was six months old and did nothing but cry all day. The only thing that soothed her was being held and kept in constant motion. Unfortunately that was slowly killing me! My back was breaking, I was beyond sleep-deprivation and had been in a mode of intensive-care parenting since the day she first came home. She wouldn't and mostly couldn't eat, she couldn't crawl, roll over or hardly even smile back at me. What she did extremely well was cry, all day and all night long. Oh yes, and throw up almost every time she did manage to drink a bottle.
Of course, looking back, that seems like a distant memory. Today I feel incredibly blessed for every moment we've spent together and I look forward to our future times together. I remember vividly the moment that I realized that God wasn't punishing me by making me watch my child struggle through life, but that God had given me a chance. He had chosen to let her live, and to allow me to help her make a difference in the world! That was the day that I realized my purpose in life! I was strong, intelligent, independent. I could raise a child with a disability and I was determined to do it as well as I possibly could. Now I will tell you about my search to discover what that meant: raising a child with a disability.
Over the past eight years I have developed a philosophy based on three basic principles: the value of Independence, Great Expectations and Living with Fear.
Independence: I was always so proud of it, able to say I did it myself! And yet, I spent a lot of my time depriving my child of this joy. I felt it necessary to follow her around like a hawk, anticipating her every need, offering assistance for the smallest task, and yet I refused to accept the offers of help from any friends or family. Suddenly, a revelation! First of all, Independence was not as important as I thought for myself; it was ok to accept help when I needed it! But frankly it is rude to impose it upon those who don't need it. I realized my daughter needed a lot less than I thought, and the more I let her achieve on her own the more her self-esteem grew!
Great Expectations: Children love to please, and when we expect them to follow the rules or learn the lesson plan they have this amazing ability to do it! And sadly, when we expect them to fail, they often do. Every new teacher I tell the same thing: Expect! Expect her to keep up with the other students, expect her to follow the same rules, expect her to grow up to be a contributing, productive adult! Obviously, accommodate the limitations she has, make the necessary adaptations for her to succeed without becoming so frustrated that she eventually gives up.
Fear, the enemy of most parents and disabled children: fear of failure, of injury, even worse of mockery. I decided early on to live with fear. Every day that my children, even the "typical" ones, leave my home and my sight, I am afraid. But I refuse to let that turn me into an overprotective parent who doesn't give my children the opportunity to stretch their wings! To challenge themselves! To sometimes fall down but learn to get back up and persevere! And oh, the reward is so grand! The look on their faces, the pride in their eyes, and the amazement of their peers when the little girl who couldn't sit up when she was one year old, and learned to crawl just before turning two, and began walking at age three, walks the balance beam or finishes her math test on time and with a perfect score! The little girl who had to use sign language and a computerized talker to communicate now talks everyone's ear off!
So, after having said all that, I want everyone to know that while I get constant praise for my daughter's success, I deserve none of it; the credit is all to her! God opened my eyes to her abilities and blinded me to her disability, and she has touched my soul with her strength and determination. And I have watched her touch the hearts of so many others. In the words of Natalie Merchant, "With love, with patience and with faith, she'll make her way!" I firmly believe that spirit lives inside everyone, we just need to give it the room to grow.
Of course, looking back, that seems like a distant memory. Today I feel incredibly blessed for every moment we've spent together and I look forward to our future times together. I remember vividly the moment that I realized that God wasn't punishing me by making me watch my child struggle through life, but that God had given me a chance. He had chosen to let her live, and to allow me to help her make a difference in the world! That was the day that I realized my purpose in life! I was strong, intelligent, independent. I could raise a child with a disability and I was determined to do it as well as I possibly could. Now I will tell you about my search to discover what that meant: raising a child with a disability.
Over the past eight years I have developed a philosophy based on three basic principles: the value of Independence, Great Expectations and Living with Fear.
Independence: I was always so proud of it, able to say I did it myself! And yet, I spent a lot of my time depriving my child of this joy. I felt it necessary to follow her around like a hawk, anticipating her every need, offering assistance for the smallest task, and yet I refused to accept the offers of help from any friends or family. Suddenly, a revelation! First of all, Independence was not as important as I thought for myself; it was ok to accept help when I needed it! But frankly it is rude to impose it upon those who don't need it. I realized my daughter needed a lot less than I thought, and the more I let her achieve on her own the more her self-esteem grew!
Great Expectations: Children love to please, and when we expect them to follow the rules or learn the lesson plan they have this amazing ability to do it! And sadly, when we expect them to fail, they often do. Every new teacher I tell the same thing: Expect! Expect her to keep up with the other students, expect her to follow the same rules, expect her to grow up to be a contributing, productive adult! Obviously, accommodate the limitations she has, make the necessary adaptations for her to succeed without becoming so frustrated that she eventually gives up.
Fear, the enemy of most parents and disabled children: fear of failure, of injury, even worse of mockery. I decided early on to live with fear. Every day that my children, even the "typical" ones, leave my home and my sight, I am afraid. But I refuse to let that turn me into an overprotective parent who doesn't give my children the opportunity to stretch their wings! To challenge themselves! To sometimes fall down but learn to get back up and persevere! And oh, the reward is so grand! The look on their faces, the pride in their eyes, and the amazement of their peers when the little girl who couldn't sit up when she was one year old, and learned to crawl just before turning two, and began walking at age three, walks the balance beam or finishes her math test on time and with a perfect score! The little girl who had to use sign language and a computerized talker to communicate now talks everyone's ear off!
So, after having said all that, I want everyone to know that while I get constant praise for my daughter's success, I deserve none of it; the credit is all to her! God opened my eyes to her abilities and blinded me to her disability, and she has touched my soul with her strength and determination. And I have watched her touch the hearts of so many others. In the words of Natalie Merchant, "With love, with patience and with faith, she'll make her way!" I firmly believe that spirit lives inside everyone, we just need to give it the room to grow.
Shrink Rap
by Amber George
Help me, I'm melting...Why are we melting?? This past fall STIC staff and consumers melted away excess pounds as a result of their involvement in the first series of the Mission Meltaway program. Mission Meltaway's goal is to reduce the prevalence of diabetes, obesity, asthma, and other chronic illnesses associated with unhealthy lifestyles. This program was held at many community organizations throughout Broome County, including STIC. The Broome County Health Department spearheaded this initiative as a part of their Steps to a Healthier NY program. STIC worked in conjunction with the Steps to a Healthier NY consortium to make full participation for people with disabilities possible.
Mission Meltaway is an eight-week program designed for people to learn about the benefits of eating healthfully and increasing their physical activity. Participants were given nutritional and physical activity information, meal recording logs, various menu plans and recipes, and social support. Because this was the first time Mission Meltaway involved a large number of people with varying disabilities, the program had to be slightly tailored to ensure full accessibility. The Broome County Steps program coordinator Mary McFadden was integral to adapting the program to meet the needs of the participants. She assisted in obtaining the materials in Braille, coordinating interpreter services for each meeting, and brainstorming ways to improve the overall accessibility of the program.
Each week the group welcomed presenters from various Broome County community organizations to discuss several health and lifestyle topics. Colleen Coddington from the Broome County Department of Health WIC program answered many questions the group had about sensible food and dietary choices. A diabetes public health educator from United Health Services shared diabetes prevention and meal suggestions. Alenna McDonald of "Yoga, Enjoy the Journey" shared the benefits of yoga for spiritual and mental health. She also discussed yoga techniques that can be used by people of all ages and abilities. Sherrie Bishop from the YMCA of Binghamton gave the group a personalized tour of their facility as well as an in-depth presentation about fitness activities. In addition to the guest lecturers, participants received a free 8-week membership to the YMCA, a pedometer, a $10.00 gift card from Giant Markets to purchase fruits and vegetables, enrollment in the BC Walks program and the "Give me Five" fruits and vegetables campaign, and several small gifts that encourage healthy living.
The benefits of having STIC as a community site for this program were many. Hosting Mission Meltaway for our consumers and staff gave us the opportunity to have fun and share some approaches for living a healthier life. It also meant some people gathering the tools needed to maintain a good quality of life in the community. People with disabilities can use the education and prevention offered by Mission Meltaway to reduce the likelihood that they will require a higher level of care in the near future. Maintaining a healthy weight and activity level can not only improve one's health, it can also increase independence and self-esteem. Being in good health both physically and mentally is equally important for everyone.
Participants from the first series of Mission Meltaway gave some important and insightful closing remarks about the program. The words they used to describe their experience of the program included "supportive", "consciousness raising", "inspiration", "motivation", "focus", "an awakening", "educational", "reality", and "tremendously useful". One hundred percent of the participants said that they plan on continuing the program and using the information they obtained. The Mission Meltaway group at STIC approached the task at hand as an informal team working together to achieve the steps to good health. It was a great success!
Keep your bananas peeled for the next series of the Mission Meltaway program in 2005!
Mission Meltaway is an eight-week program designed for people to learn about the benefits of eating healthfully and increasing their physical activity. Participants were given nutritional and physical activity information, meal recording logs, various menu plans and recipes, and social support. Because this was the first time Mission Meltaway involved a large number of people with varying disabilities, the program had to be slightly tailored to ensure full accessibility. The Broome County Steps program coordinator Mary McFadden was integral to adapting the program to meet the needs of the participants. She assisted in obtaining the materials in Braille, coordinating interpreter services for each meeting, and brainstorming ways to improve the overall accessibility of the program.
Each week the group welcomed presenters from various Broome County community organizations to discuss several health and lifestyle topics. Colleen Coddington from the Broome County Department of Health WIC program answered many questions the group had about sensible food and dietary choices. A diabetes public health educator from United Health Services shared diabetes prevention and meal suggestions. Alenna McDonald of "Yoga, Enjoy the Journey" shared the benefits of yoga for spiritual and mental health. She also discussed yoga techniques that can be used by people of all ages and abilities. Sherrie Bishop from the YMCA of Binghamton gave the group a personalized tour of their facility as well as an in-depth presentation about fitness activities. In addition to the guest lecturers, participants received a free 8-week membership to the YMCA, a pedometer, a $10.00 gift card from Giant Markets to purchase fruits and vegetables, enrollment in the BC Walks program and the "Give me Five" fruits and vegetables campaign, and several small gifts that encourage healthy living.
The benefits of having STIC as a community site for this program were many. Hosting Mission Meltaway for our consumers and staff gave us the opportunity to have fun and share some approaches for living a healthier life. It also meant some people gathering the tools needed to maintain a good quality of life in the community. People with disabilities can use the education and prevention offered by Mission Meltaway to reduce the likelihood that they will require a higher level of care in the near future. Maintaining a healthy weight and activity level can not only improve one's health, it can also increase independence and self-esteem. Being in good health both physically and mentally is equally important for everyone.
Participants from the first series of Mission Meltaway gave some important and insightful closing remarks about the program. The words they used to describe their experience of the program included "supportive", "consciousness raising", "inspiration", "motivation", "focus", "an awakening", "educational", "reality", and "tremendously useful". One hundred percent of the participants said that they plan on continuing the program and using the information they obtained. The Mission Meltaway group at STIC approached the task at hand as an informal team working together to achieve the steps to good health. It was a great success!
Keep your bananas peeled for the next series of the Mission Meltaway program in 2005!
STIC News
Annual Campaign
Folks, we're making progress. Our Capital Campaign has raised over $466,000 in cash and in-kind gifts, grants, and pledges so far. That's 21% of our $2.2 million goal. Thanks very much to the Hoyt Foundation and Ahearn Foundation for two major grants this fall, and thanks also to the Sons of Italy and the Spiedie and Balloon Festival for their generous contributions.
As you can see, we have more work to do. We set a goal for our 15th. Annual Campaign to raise $6,000 from folks like you who use our services or work with us in the community. That money will be folded into the Capital Campaign. So far those letters we sent you have brought in $3,990. We know that many of you like to make your contributions at the end of the year. That time is now. Remember, every $15 you send is matched by one dollar from the Decker Foundation, up to $100,000 Decker Dollars! If you still have the form and envelope we sent you, please use them to make your donation. If not, please write "Annual Campaign" on the memo line of your check. If you give us permission, we'll print your name here, as we've done with the kind folks below.
You can also support our Capital Campaign by buying a memorial dove at STIC, and by attending our Hometown Holiday Light Festival. So come on out, play in the snow, help STIC's great new building grow!
As you can see, we have more work to do. We set a goal for our 15th. Annual Campaign to raise $6,000 from folks like you who use our services or work with us in the community. That money will be folded into the Capital Campaign. So far those letters we sent you have brought in $3,990. We know that many of you like to make your contributions at the end of the year. That time is now. Remember, every $15 you send is matched by one dollar from the Decker Foundation, up to $100,000 Decker Dollars! If you still have the form and envelope we sent you, please use them to make your donation. If not, please write "Annual Campaign" on the memo line of your check. If you give us permission, we'll print your name here, as we've done with the kind folks below.
You can also support our Capital Campaign by buying a memorial dove at STIC, and by attending our Hometown Holiday Light Festival. So come on out, play in the snow, help STIC's great new building grow!
THANK YOU!
Lillian Boesch
Ken & Maria Dibble
Mary & John Kolodzej
Richard Miller
(in memory of Assemblyman Richard H. Miller)
Lillian Boesch
Ken & Maria Dibble
Mary & John Kolodzej
Richard Miller
(in memory of Assemblyman Richard H. Miller)
Mark Your Calendar!!!
4th Annual
Drive-Through Theme Park
Otsiningo Park, Binghamton, NY
Open every night
(weather permitting)
from
November 24, 2004 - January 2, 2005
5:30 pm - 9:30 pm
This Year With
More Nights
Fun and Romantic Horse & Wagon rides
every Thursday through Saturday,
just $2 per person
Hot chocolate, coffee, & more at
our Concession Stand
Renowned Deaf Choir of the Southern Tier
Performs Christmas Carols:
December 17, 22 at 7:00 pm
Tickets at the Gate:
$8.00 per car
$10.00 per van/SUV
4th Annual
Hometown Holiday Light Festival
Drive-Through Theme ParkOtsiningo Park, Binghamton, NY
Open every night
(weather permitting)
from
November 24, 2004 - January 2, 2005
5:30 pm - 9:30 pm
This Year With
More Nights
Fun and Romantic Horse & Wagon rides
every Thursday through Saturday,
just $2 per person
Hot chocolate, coffee, & more at
our Concession Stand
Renowned Deaf Choir of the Southern Tier
Performs Christmas Carols:
December 17, 22 at 7:00 pm
Tickets at the Gate:
$8.00 per car
$10.00 per van/SUV
Kudos and Congrats to STIC's 2004 Award Recipients!
by Darlene Dickenson
On September 29, 2004, STIC held our annual awards luncheon at our new building on East Frederick Street. This year, STIC handed out a total of 41 awards. Congratulations to the following individuals, agencies, organizations and foundations for your achievements and support! And now, the envelopes please!
Broome County Parks and Recreation for their wonderful support of the Hometown Holiday Light Festival. BC Parks has worked closely with STIC to assist with the logistics of operating the light festival at Otsiningo Park. They have helped us determine when to close the park in bad weather and provided a tremendous amount of support for this important fund-raiser.
Amy Castle, Tioga County Department of Mental Hygiene, has brought great energy and enthusiasm to the Tioga County ACTION Coalition, which was formed to address gaps in services and other barriers to community living faced by people with disabilities in rural areas. Thank you, Amy, for your ideas and hard work!
TASAP determines eligibility for Medicaid homecare services in Tioga County. Tina Lounsbury, Director of TASAP, initiated a dialogue with STIC's Community Integration Advocates to discuss forming a coalition to address barriers to community integration in a rural county with limited programs and funding. The Tioga County ACTION Coalition was created and has taken on the challenge to fill gaps in the services currently available to people with disabilities. In addition, TASAP is to be commended for its long-standing partnership with the Consumer Directed Personal Assistance program, being the first county to contract with us for this service.
Dana Rose, Stafkings, for providing Home and Community Support Services to people receiving services under the Traumatic Brain Injury Waiver. Dana has demonstrated her commitment to the TBI Waiver and to the Independent Living Philosophy.
George Akel, Giant Food Markets
Frank Berrish, Visions Federal Credit Union
Matthew Salanger, United Health Services, for actively volunteering to help connect STIC with businesses that became donors.
We also thank Rich Gilbert of Wegmans Food & Pharmacy for his generous support of the Hometown Holiday Light Festival. Wegmans has given support in many ways, by sponsoring one of the light displays, supplying food and beverages for the concession stand at this year's festival and for receptions, and with in-store ads and promotions.
Steve Brozost
Joyce Matias
Barbara Starchok
Thomas Miller became disabled when a diving accident caused a spinal cord injury that left him paralyzed from the chest down. Tom has been in and out of nursing homes since his accident and in 2003 found himself in the hospital facing the prospect of nursing home placement yet again. With STIC's help, Tom organized himself, found an apartment that would meet his needs and hired his own aides through the CDPA program. Tom has flourished in his own home. He is an artist, a poet, an optimist and a model of independence for others.
Brian Bauer is an amazing teacher who promotes the inclusion of all students, regardless of disability. He works in a BOCES program at Maine-Endwell Middle School.
The Board of Realtors held a wonderful Trivia Night to raise funds for children with disabilities in need of adaptive equipment. All proceeds from the event were used to purchase specific items that would help each child be more independent at home, at school and/or in the community.
Joe Croteau is actively involved with the Deaf community and a staunch supporter of the Independent Living Philosophy.
George Funnell is a Community Integration Counselor who assists people with traumatic brain injuries with problem solving, overcoming fear and anxiety and achieving their personal goals. He has demonstrated his commitment to independent living and his belief in each person's ability to reach for his/her dreams.
Laura Kotsubka is the parent of a 21-year-old son with MS. She is actively involved with STIC as a board member and participant in the Systems Advocates for Independent Living (SAIL) group. In addition, Laura has started a support group for young adults who use wheelchairs to help build self-esteem and promote independence. Laura is truly passionate about Independent Living and uses her passion to support people with disabilities currently living in nursing homes.
STIC salutes the New York AgrAbility Project/Business Development Team for innovative work in assisting people with disabilities to develop their own home-based businesses, especially in the agricultural field, and for creating adaptive solutions that enable each person to perform the necessary tasks associated with his/her chosen home business.
Olums Warehouse donates furniture such as couches, loveseats, chairs and bedding to STIC's give-away program specifically for people with disabilities who are moving out of institutions into their own homes in the community. Many of the people we assist have lost all of their belongings upon entering institutions. Without the generous donations made by Olums, it would be extremely difficult for people returning to the community to furnish their homes.
Tina Pratt, Manager of Marian Apartments, has been very understanding of the issues faced by people with disabilities who are coming out of institutions and has repeatedly demonstrated willingness to make accommodations that support each individual who moves into an apartment from a nursing home or other institutional setting.
Ron Romain is the owner and manager of the Landmark Apartments on Chenango Street in Binghamton. As a landlord, Ron has proven to be very flexible and willing to work with STIC to provide affordable housing for people with disabilities who are leaving institutions.
Greg Veech is an energetic, tireless teacher in the Johnson City School District who is dedicated to all of his students and believes in full participation for those with and without disabilities. He is a strong proponent of the Independent Living Philosophy and inclusive education.
Jody Weidemann has been extremely supportive of the Deaf community for many years and she remains very involved. She is a dedicated ASL interpreter who gives a lot of her time to assist both deaf individuals and the Deaf community as a whole.
Binghamton Rotary Charities Fund
Dr. G. Clifford & Florence B. Decker Foundation
The Conrad and Virginia Klee Foundation, Inc.
Senator Raymond Meier played an instrumental role in developing the Nursing Home Transition and Diversion Medicaid Waiver bill and supported its passage through the state Senate. This legislation, signed into law by Governor Pataki in October, will allow people with disabilities who are not covered under existing waivers to use Medicaid funds for home modifications and other support services necessary to live in the community.
We also want to say thank you to the volunteers who donated their time and labor to help us build an emergency exit ramp on our new building at East Frederick Street. Without their help it would have cost STIC $20,000 to build this essential exit ramp. Because the following individuals donated their time and labor the ramp only cost STIC a few hundred dollars.
Gaenett Bolan
Roger Brown
Lane Hartman
Dr. Nathan Massey
A big thank you to Leroy French for helping us pick up adaptive equipment donated by people who no longer need it but can't transport it to STIC. His efforts have helped us increase our supply of equipment in both the loan and give-away closets.
Thanks to Duane Saunders for helping people who have no other means to move their belongings when they move to another location. Nice job!
We also salute Jeremy Watson, who works at Southern Tier Medi-Van, for helping us clean floors at our new building on East Frederick Street. Jeremy has a positive attitude and is always willing to help others.
OUTSTANDING AGENCY SUPPORT
Broome County CASA determines eligibility for Medicaid homecare services and assesses each person's needs in the home. We applaud their commitment to consumer choice and participation in home care, as well as their steadfast belief in the "dignity of risk", a philosophy that lets a person accept responsibility for any reasonable risk involved in living independently in the community. CASA has been instrumental in the success of STIC's Consumer Directed Personal Assistance program, a partnership that has made a big difference in the lives of many people with disabilities living in their own homes.Broome County Parks and Recreation for their wonderful support of the Hometown Holiday Light Festival. BC Parks has worked closely with STIC to assist with the logistics of operating the light festival at Otsiningo Park. They have helped us determine when to close the park in bad weather and provided a tremendous amount of support for this important fund-raiser.
Amy Castle, Tioga County Department of Mental Hygiene, has brought great energy and enthusiasm to the Tioga County ACTION Coalition, which was formed to address gaps in services and other barriers to community living faced by people with disabilities in rural areas. Thank you, Amy, for your ideas and hard work!
TASAP determines eligibility for Medicaid homecare services in Tioga County. Tina Lounsbury, Director of TASAP, initiated a dialogue with STIC's Community Integration Advocates to discuss forming a coalition to address barriers to community integration in a rural county with limited programs and funding. The Tioga County ACTION Coalition was created and has taken on the challenge to fill gaps in the services currently available to people with disabilities. In addition, TASAP is to be commended for its long-standing partnership with the Consumer Directed Personal Assistance program, being the first county to contract with us for this service.
Dana Rose, Stafkings, for providing Home and Community Support Services to people receiving services under the Traumatic Brain Injury Waiver. Dana has demonstrated her commitment to the TBI Waiver and to the Independent Living Philosophy.
OUTSTANDING BUSINESS SUPPORT
STIC thanks each of the following businesses for their generous support of our Capital Campaign, which will fund renovations to our new building on East Frederick Street.George Akel, Giant Food Markets
Frank Berrish, Visions Federal Credit Union
Matthew Salanger, United Health Services, for actively volunteering to help connect STIC with businesses that became donors.
We also thank Rich Gilbert of Wegmans Food & Pharmacy for his generous support of the Hometown Holiday Light Festival. Wegmans has given support in many ways, by sponsoring one of the light displays, supplying food and beverages for the concession stand at this year's festival and for receptions, and with in-store ads and promotions.
OUTSTANDING COMMUNITY INTEGRATION EFFORT
The awards go to each of these three individuals for providing peer counseling, moving assistance and other supports to people at risk of institutional placement and/or those who recently returned to the community from institutions. Congratulations and well done!Steve Brozost
Joyce Matias
Barbara Starchok
OUTSTANDING CONSUMER ACHIEVEMENT
Devon Campbell has become very independent. She has learned to use public transportation, do her own banking and be successful at her job. Devon has become a role model for other people with disabilities seeking independence and self-reliance.Thomas Miller became disabled when a diving accident caused a spinal cord injury that left him paralyzed from the chest down. Tom has been in and out of nursing homes since his accident and in 2003 found himself in the hospital facing the prospect of nursing home placement yet again. With STIC's help, Tom organized himself, found an apartment that would meet his needs and hired his own aides through the CDPA program. Tom has flourished in his own home. He is an artist, a poet, an optimist and a model of independence for others.
OUTSTANDING CONSUMER SUPPORT
Dee Arnold is a dedicated American Sign Language (ASL) interpreter and long-time friend of the Deaf community. Dee donates a great deal of interpreting time and is very involved in the Deaf community. In addition, Dee assists STIC's Interpreter Services program whenever necessary.Brian Bauer is an amazing teacher who promotes the inclusion of all students, regardless of disability. He works in a BOCES program at Maine-Endwell Middle School.
The Board of Realtors held a wonderful Trivia Night to raise funds for children with disabilities in need of adaptive equipment. All proceeds from the event were used to purchase specific items that would help each child be more independent at home, at school and/or in the community.
Joe Croteau is actively involved with the Deaf community and a staunch supporter of the Independent Living Philosophy.
George Funnell is a Community Integration Counselor who assists people with traumatic brain injuries with problem solving, overcoming fear and anxiety and achieving their personal goals. He has demonstrated his commitment to independent living and his belief in each person's ability to reach for his/her dreams.
Laura Kotsubka is the parent of a 21-year-old son with MS. She is actively involved with STIC as a board member and participant in the Systems Advocates for Independent Living (SAIL) group. In addition, Laura has started a support group for young adults who use wheelchairs to help build self-esteem and promote independence. Laura is truly passionate about Independent Living and uses her passion to support people with disabilities currently living in nursing homes.
STIC salutes the New York AgrAbility Project/Business Development Team for innovative work in assisting people with disabilities to develop their own home-based businesses, especially in the agricultural field, and for creating adaptive solutions that enable each person to perform the necessary tasks associated with his/her chosen home business.
Olums Warehouse donates furniture such as couches, loveseats, chairs and bedding to STIC's give-away program specifically for people with disabilities who are moving out of institutions into their own homes in the community. Many of the people we assist have lost all of their belongings upon entering institutions. Without the generous donations made by Olums, it would be extremely difficult for people returning to the community to furnish their homes.
Tina Pratt, Manager of Marian Apartments, has been very understanding of the issues faced by people with disabilities who are coming out of institutions and has repeatedly demonstrated willingness to make accommodations that support each individual who moves into an apartment from a nursing home or other institutional setting.
Ron Romain is the owner and manager of the Landmark Apartments on Chenango Street in Binghamton. As a landlord, Ron has proven to be very flexible and willing to work with STIC to provide affordable housing for people with disabilities who are leaving institutions.
Greg Veech is an energetic, tireless teacher in the Johnson City School District who is dedicated to all of his students and believes in full participation for those with and without disabilities. He is a strong proponent of the Independent Living Philosophy and inclusive education.
Jody Weidemann has been extremely supportive of the Deaf community for many years and she remains very involved. She is a dedicated ASL interpreter who gives a lot of her time to assist both deaf individuals and the Deaf community as a whole.
OUTSTANDING EMPLOYMENT ASSISTANCE
Kris Miller, Burger King. Kris is a supportive, accommodating, understanding, flexible employer who works hard to ensure that employees succeed.OUTSTANDING FOUNDATION SUPPORT
Kudos to the following foundations for their generous donations to our Capital Campaign:Binghamton Rotary Charities Fund
Dr. G. Clifford & Florence B. Decker Foundation
The Conrad and Virginia Klee Foundation, Inc.
OUTSTANDING LEGISLATIVE SUPPORT
Senator Thomas W. Libous supported the Public Entities bill in the NYS Senate this year. This important piece of legislation, if passed, will safeguard the rights defined under Title II of the Americans with Disabilities Act into New York State law. We also thank Senator Libous for his support of the EPIC bill and the Nursing Home Transition and Diversion Medicaid Waiver bill.Senator Raymond Meier played an instrumental role in developing the Nursing Home Transition and Diversion Medicaid Waiver bill and supported its passage through the state Senate. This legislation, signed into law by Governor Pataki in October, will allow people with disabilities who are not covered under existing waivers to use Medicaid funds for home modifications and other support services necessary to live in the community.
OUTSTANDING (STIC) BOARD EFFORT
Beth Ann Pedersen for her enthusiasm, eagerness to learn and her willingness to advocate for the rights of people with disabilities. Beth is an active member of SAIL (Systems Advocates for Independent Living) and she serves on the Mayor's Code Enforcement Committee in the city of Norwich. Beth embraces the Independent Living Philosophy and she is truly a role model for other people with disabilities.OUTSTANDING VOLUNTEER SUPPORT
Electricians Local #325, International Brotherhood of Electrical Workers. For their incredible assistance with our Hometown Holiday Light Festival. Not only did they wire Otsiningo Park so we could display more lights around the path, they also set up the displays and took them down for us! Awesome work guys!We also want to say thank you to the volunteers who donated their time and labor to help us build an emergency exit ramp on our new building at East Frederick Street. Without their help it would have cost STIC $20,000 to build this essential exit ramp. Because the following individuals donated their time and labor the ramp only cost STIC a few hundred dollars.
Gaenett Bolan
Roger Brown
Lane Hartman
Dr. Nathan Massey
A big thank you to Leroy French for helping us pick up adaptive equipment donated by people who no longer need it but can't transport it to STIC. His efforts have helped us increase our supply of equipment in both the loan and give-away closets.
Thanks to Duane Saunders for helping people who have no other means to move their belongings when they move to another location. Nice job!
We also salute Jeremy Watson, who works at Southern Tier Medi-Van, for helping us clean floors at our new building on East Frederick Street. Jeremy has a positive attitude and is always willing to help others.
`Tis The Season To Be Giving...
Help Support Community Living
by Darlene Dickenson
Last year STIC started a give-away program for people coming out of nursing homes and other institutions who do not qualify for funding under the TBI Waiver or the OMRDD Home and Community Based Waiver. This service provides much-needed items for individuals who have lost most of their personal and household belongings when they were placed in nursing homes.
Remember your first apartment? If so, you know how expensive it is to buy all the items you need to stock an empty household. Even the simplest things like cleaning products, paper towels, mop and bucket, broom and dustpan, dishcloths, washcloths, hand towels and the like quickly add up. Because people with disabilities living in institutions forfeit most of their benefits, they have little or no money of their own to buy these essential items. What's more, the amount of benefits they will receive in the community is barely enough to pay rent and meet their other monthly expenses.
Donations for the give-away room have come in from many generous sources, including Olums and STIC employees. To date, eight individuals now living in the community have accessed the give-away program to outfit their new abodes with everything from toiletries to kitchenware to couches, beds and dressers. The demand for this service is tremendous and we now find that our stock of give-away items is very depleted. If you or your company/organization would like to help us replenish our supply of any items on the wish list below please contact Amber or Darlene at (607) 724-2111 (voice/TTY).
Are you looking for a community service project for your youth group, scouting troop, church group, service club, family or group of friends? Creating "Welcome Home Baskets" is a great way to give people coming out of institutions a few basic essentials that will save them some money and make them feel welcome in the community. Here are some items that you can put together in a basket. Your group can either purchase items individually and combine them to make the baskets or solicit donations of money or merchandise from local area businesses. You may add additional items to those listed below if you wish. Each basket should contain:
Shampoo and conditioner, disposable razors, liquid hand soap, 1-2 bars of bath soap, 1-2 rolls of toilet paper, paper towels, deodorant, notepad and pen, hand/body lotion, Band-Aids
Please note: Some people may not be able to take aspirin, ibuprofen or Tylenol products so these should not be included.
Our Wish List
Bedding:
Please note: we CAN NOT accept used mattresses/beds or hospital beds.
Sheets:
Hospital bed sheets are most needed, also queen sheets, alarm clocks, blankets, comforters, mattress pads, pillows and pillow cases, cordless or regular phones
Kitchen and Bath:
Baking dishes, casserole dishes, pots and pans, kitchen trash cans, small trash cans, bath towels, coffee makers, colanders, jar openers, cheese graters, hand and dish towels, dish cloths, electric and/or manual can openers, tea kettles, toasters, toaster ovens, pot holders, toothbrush holders, soap dishes, wash cloths, microwave ovens, microwave dishes, measuring cups, measuring spoons, cutting boards, silverware: adapted and regular, cheese graters, mixing bowls, sharp knives: adapted and regular, pitchers, silverware drawer tray, plates, cups/mugs, drinking glasses, notepads and pens, room fresheners, salt and pepper shakers, cooking utensils: spoons, tongs, etc.
Cleaning Supplies:
Brooms and dustpans, mops and buckets, scrubbers, sponges, liquid floor, glass, all-purpose cleaners, paper towels, laundry detergent, dish washing detergent, tub and tile cleaner, chlorine bleach, stain remover, vacuum cleaners, vacuum cleaner bags (for donated models), toilet brushes, garbage bags, dusters or dust cloths, rubber or latex gloves
Toiletries/Personal Hygiene:
Hand soap, bath and body wash, Loofa sponges or scrubs, shampoo and conditioner, hand lotion, body lotion, nail care products, tooth brushes, tooth paste, shaving cream or gel, disposable razors, hair brushes, hair combs, tweezers, Q-tips, antibiotic ointment
Furniture:
We will gladly accept used furniture donations, provided that the furniture is CLEAN and in GOOD CONDITION.
Couches, Armchairs, End Tables, Recliners, Rocking Chairs, Night Stands, Loveseats, Coffee Tables, Dressers, Kitchen/Dining Tables & Chairs, Lamps: table/floor
Remember your first apartment? If so, you know how expensive it is to buy all the items you need to stock an empty household. Even the simplest things like cleaning products, paper towels, mop and bucket, broom and dustpan, dishcloths, washcloths, hand towels and the like quickly add up. Because people with disabilities living in institutions forfeit most of their benefits, they have little or no money of their own to buy these essential items. What's more, the amount of benefits they will receive in the community is barely enough to pay rent and meet their other monthly expenses.
Donations for the give-away room have come in from many generous sources, including Olums and STIC employees. To date, eight individuals now living in the community have accessed the give-away program to outfit their new abodes with everything from toiletries to kitchenware to couches, beds and dressers. The demand for this service is tremendous and we now find that our stock of give-away items is very depleted. If you or your company/organization would like to help us replenish our supply of any items on the wish list below please contact Amber or Darlene at (607) 724-2111 (voice/TTY).
Are you looking for a community service project for your youth group, scouting troop, church group, service club, family or group of friends? Creating "Welcome Home Baskets" is a great way to give people coming out of institutions a few basic essentials that will save them some money and make them feel welcome in the community. Here are some items that you can put together in a basket. Your group can either purchase items individually and combine them to make the baskets or solicit donations of money or merchandise from local area businesses. You may add additional items to those listed below if you wish. Each basket should contain:
Shampoo and conditioner, disposable razors, liquid hand soap, 1-2 bars of bath soap, 1-2 rolls of toilet paper, paper towels, deodorant, notepad and pen, hand/body lotion, Band-Aids
Please note: Some people may not be able to take aspirin, ibuprofen or Tylenol products so these should not be included.
Our Wish List
Bedding:
Please note: we CAN NOT accept used mattresses/beds or hospital beds.
Sheets:
Hospital bed sheets are most needed, also queen sheets, alarm clocks, blankets, comforters, mattress pads, pillows and pillow cases, cordless or regular phones
Kitchen and Bath:
Baking dishes, casserole dishes, pots and pans, kitchen trash cans, small trash cans, bath towels, coffee makers, colanders, jar openers, cheese graters, hand and dish towels, dish cloths, electric and/or manual can openers, tea kettles, toasters, toaster ovens, pot holders, toothbrush holders, soap dishes, wash cloths, microwave ovens, microwave dishes, measuring cups, measuring spoons, cutting boards, silverware: adapted and regular, cheese graters, mixing bowls, sharp knives: adapted and regular, pitchers, silverware drawer tray, plates, cups/mugs, drinking glasses, notepads and pens, room fresheners, salt and pepper shakers, cooking utensils: spoons, tongs, etc.
Cleaning Supplies:
Brooms and dustpans, mops and buckets, scrubbers, sponges, liquid floor, glass, all-purpose cleaners, paper towels, laundry detergent, dish washing detergent, tub and tile cleaner, chlorine bleach, stain remover, vacuum cleaners, vacuum cleaner bags (for donated models), toilet brushes, garbage bags, dusters or dust cloths, rubber or latex gloves
Toiletries/Personal Hygiene:
Hand soap, bath and body wash, Loofa sponges or scrubs, shampoo and conditioner, hand lotion, body lotion, nail care products, tooth brushes, tooth paste, shaving cream or gel, disposable razors, hair brushes, hair combs, tweezers, Q-tips, antibiotic ointment
Furniture:
We will gladly accept used furniture donations, provided that the furniture is CLEAN and in GOOD CONDITION.
Couches, Armchairs, End Tables, Recliners, Rocking Chairs, Night Stands, Loveseats, Coffee Tables, Dressers, Kitchen/Dining Tables & Chairs, Lamps: table/floor
Winter 2004-05
Issue No. 77
- Nursing Home Transition and Diversion:
Long May It Waive! - Who Protects Our Children from the Schools?
- AccessAbilityMasthead
- Bad Weather?
- News & Analysis
- Children's Mental Health Task Force Moves Forward
- Courts Watch
- Election Analysis: We're in Big Trouble
- Housing Battle Rages On
- Join ADAPT in Washington
- Medicare "Modernization": Fight for Your Lives!
- A New IDEA
- Report Voter Discrimination!
- State Budget Update
- Sweating the Most Integrated Setting
- Tech Act Becomes Fact
- SELF HELP ISSUES & ANSWERS
- Lessons on Fear and Independence
- Shrink Rap
- STIC NEWS
- Annual Campaign
- Hometown Holiday Light Festival
- Kudos and Congrats to STIC's 2004 Award Recipients!
- `Tis The Season To Be Giving...
Help Support Community Living