The reason this blog came to be is because of a friend of mine who died. I’m not at liberty to go into much detail about the situation at this time, because I’ve filed a grievance against Oregon Advocacy Center, and don’t want to give them an out. OAC is the federally funded “Protection and Advocacy” entity in our state that is charged with ensuring that people with disabilities rights are provided for. What I will say, is that something inside told me that I needed to become more involved in the struggle than ever before, and immerse myself in the disability community. I have done that. The blogs I’ve spent time in and the people who have shared with me thus far have been a godsend during this difficult time. I’m sticking around.
I filed the grievance on my deceased friend’s behalf on 1/10/07 with the understanding that I would hear from the Executive Director within 15 working days. According to my calculations that makes tomorrow day #15. I’d say there’s a 50-50 chance I won’t even hear from the ED by the end of business tomorrow. In their grievance policy it says that if I disagree with the ED’s findings, I can take my grievance to the Board of Directors for further review. These folks know me well enough to realize that is exactly what I will do. They also realize that public opinion within the disability community would back up my assertions 100%. I have lots of evidence that unequivocally supports my position.
The troubling part of all this is that it never had to happen. In the past I’ve told some truths about the way the P&A has made some costly (29 million) mistakes and that has certainly not sat well with them. I had a friend who used to say “The truth will make you sick BEFORE it sets you free”, and I think that’s what caused all this to come down. I believe anger, ego, and vengefulness were the driving factors in some of the decisions that were made in this situation. Of course motive is not what I’m concerned with, it’s about outcome.
Do me a favor… send out some positive vibe-energy-prayer at me. This is a very tough situation even for the brave capTAin. My friend meant a LOT to me, and it’s in her memory that I do what I’m doing.
Wednesday, January 31, 2007
Tuesday, January 30, 2007
What's Up With Disability Awareness?
What’s up with disability “awareness” demonstrations anyway? I’m talking about those exercises designed for school kids to “experience” what it’s like to live with a disability. For example, kids are encouraged to put two-sided tape between their fingers to see how their fingers stick together and how hard it is to pick up objects or to write. Or they are made to put a rubber ball between their knees then try to walk or run to “experience” a physical disability. Then they are asked to read a page of words that are printed backwards or with the letters jumbled around to “simulate” dyslexia. Probably the most insulting, they take turns putting on funny-looking masks and “experience” what it’s like to be laughed at. And my all-time favorite, they stuff marshmallows into their mouths and try to say a sentence to “simulate” a speech impairment.
All of this is supposed to create better understanding and empathy for their schoolmates who have disabilities. These exercises are so short-sighted and insulting that I believe they do more harm than good. The obvious is that they are designed to highlight differences, not similarities. In highlighting these differences, they sum up the experience of disability as performance deficits in areas where people struggle, but give no opportunity to see people with disabilities as individuals who possess a broad range of unique talents and abilities beyond these areas. Besides, what about the myriad of assistive technologies, equipment and adaptations to the environment that people use to accomplish these tasks at performance levels at or above what people without disabilities can do? These demonstrations also give kids the impression that all people with disabilities can be lumped into one group that experiences these things in the same way. They focus on the disability as the problem, but do nothing to show the unnecessary environmental barriers and prejudice in society that people with disabilities encounter daily. They actually involve “real” people with disabilities who take others through these degrading and misleading exercises. And they are focused on the wrong audience.
What’s needed is a demonstration for ADULTS without disabilities where they are forced to sit through a meeting with a case manager they’ve never met before asking for details about the likely peculiar “behaviors” they exhibit. They would experience the indignity of this 3-hour meeting during which every idea they present for assistive devices, adaptations or personal support services is met with a “No, it's not on our funded priority list.” They would be joined by a “vocational specialist” who would respond to every idea they present for appropriate workplace supports with “I don’t think ‘CARF’ will allow that goal” or “none of the other 'participants' are doing that, so we don’t want the others to think we’re giving any ‘special’ favors.” They would be told that a performance goal that targets 90 or 100% is not allowed, since it’s outside the standard “guidelines” that expect that the majority of people with disabilities won’t perform at that level. After the meeting they would be asked to sit and wait for their ride to pick them up. It will be at least a 30-minute wait, and it will arrive 10 minutes late. They would board the van and experience being driven around for 2 hours on a circuitous route that picks up several other people before arriving at their destination, which would normally be a 15 minute drive. Their destination? A dinner with their family, which was planned for 5 PM, but of course they don’t arrive until well after 6.
Now that’s disability “awareness.”
All of this is supposed to create better understanding and empathy for their schoolmates who have disabilities. These exercises are so short-sighted and insulting that I believe they do more harm than good. The obvious is that they are designed to highlight differences, not similarities. In highlighting these differences, they sum up the experience of disability as performance deficits in areas where people struggle, but give no opportunity to see people with disabilities as individuals who possess a broad range of unique talents and abilities beyond these areas. Besides, what about the myriad of assistive technologies, equipment and adaptations to the environment that people use to accomplish these tasks at performance levels at or above what people without disabilities can do? These demonstrations also give kids the impression that all people with disabilities can be lumped into one group that experiences these things in the same way. They focus on the disability as the problem, but do nothing to show the unnecessary environmental barriers and prejudice in society that people with disabilities encounter daily. They actually involve “real” people with disabilities who take others through these degrading and misleading exercises. And they are focused on the wrong audience.
What’s needed is a demonstration for ADULTS without disabilities where they are forced to sit through a meeting with a case manager they’ve never met before asking for details about the likely peculiar “behaviors” they exhibit. They would experience the indignity of this 3-hour meeting during which every idea they present for assistive devices, adaptations or personal support services is met with a “No, it's not on our funded priority list.” They would be joined by a “vocational specialist” who would respond to every idea they present for appropriate workplace supports with “I don’t think ‘CARF’ will allow that goal” or “none of the other 'participants' are doing that, so we don’t want the others to think we’re giving any ‘special’ favors.” They would be told that a performance goal that targets 90 or 100% is not allowed, since it’s outside the standard “guidelines” that expect that the majority of people with disabilities won’t perform at that level. After the meeting they would be asked to sit and wait for their ride to pick them up. It will be at least a 30-minute wait, and it will arrive 10 minutes late. They would board the van and experience being driven around for 2 hours on a circuitous route that picks up several other people before arriving at their destination, which would normally be a 15 minute drive. Their destination? A dinner with their family, which was planned for 5 PM, but of course they don’t arrive until well after 6.
Now that’s disability “awareness.”
Sunday, January 28, 2007
The Restraint Game
Much of what state-funded advocates focus on is workshops for people with developmental disabilities and their families about how to navigate within the very system that is often responsible for the discrimination that people seek to end. Activities center on things like “how a bill becomes a law,” registering people to vote, town halls and presentations for legislators who “require more information” on the issues and the wish lists, and exercises in non-binding legislation, such as “respectful language” bills based on the premise that educational campaigns and requests for polite labels will convert the majority to the cause. Through these activities, people are schooled very carefully on acceptable and unacceptable communication styles and on the rules of order for “civil discourse.” They are cautioned to follow the wise direction of the governor’s appointed experts in patience and restraint and the paid “legislative liaisons” who always know when the timing isn’t right to push harder and ask for more. We know of a case during a local ballot measure to raise taxes for human services when more than one respected “advocate” advised that the people lay low during the campaign for fear of too much attention to the issues that might bring people to the polls to vote against supporting the measure. Extraordinary effort is made to distribute information about a scarcity of resources that makes people fearful that if they “ask for too much” in order to expand access to more of their brothers, then they will be forced to give up some of what they count on in exchange.
A small group of people with developmental disabilities is often called upon to participate on numerous boards and commissions advocating this kind of restraint and legislative nuancing. The state-funded advocates call upon the same individuals over and over and do not make much effort to reach out to a broader community. Some may mistake this to mean that those who are repeatedly called are the only ones who are capable or willing to participate. I take it to mean that this is the best way to keep some people so busy that they don’t have the time or energy to engage in direct action and resistance that may, in fact, have more impact. We know of one woman who belonged to so many of these boards and committees that she openly told us that she was personally worn out from it and didn’t have time to attend to other aspects of her own life, let alone get involved in direct action on behalf of the broader community of people with developmental disabilities.
What people need to keep in mind is that those who have been historically excluded and victimized have never made progress through “patient” and “reasonable” measures, but through resistance and sustained struggle. They didn’t close the institutions, in Oregon or anywhere else, because of the people’s diplomacy, or through voting. Of course, I'm not advocating that people shouldn't get out and vote or participate in the legislative process. But, we didn’t achieve the Olmstead decision by voting or by being reasonable, but through litigation. Women didn’t get the vote through voting. Blacks didn’t defeat Jim Crowe through voting. And we didn’t create US democracy by politely placating the salaried ambassadors of the power personified in the King of England. How long will we listen to the counsel of patience and restraint? As demonstrated in all human and civil rights movements throughout history, this is not a situation in which we have been impatient. The neglect has gone on for centuries. We have a responsibility in the face of an obstinacy that threatens our very survival to show resolve and the belief in our own worth to end the negotiations and diplomacy. This is a situation that calls for direct action with a commitment to the difficult and sustained struggle that will ultimately free us.
A small group of people with developmental disabilities is often called upon to participate on numerous boards and commissions advocating this kind of restraint and legislative nuancing. The state-funded advocates call upon the same individuals over and over and do not make much effort to reach out to a broader community. Some may mistake this to mean that those who are repeatedly called are the only ones who are capable or willing to participate. I take it to mean that this is the best way to keep some people so busy that they don’t have the time or energy to engage in direct action and resistance that may, in fact, have more impact. We know of one woman who belonged to so many of these boards and committees that she openly told us that she was personally worn out from it and didn’t have time to attend to other aspects of her own life, let alone get involved in direct action on behalf of the broader community of people with developmental disabilities.
What people need to keep in mind is that those who have been historically excluded and victimized have never made progress through “patient” and “reasonable” measures, but through resistance and sustained struggle. They didn’t close the institutions, in Oregon or anywhere else, because of the people’s diplomacy, or through voting. Of course, I'm not advocating that people shouldn't get out and vote or participate in the legislative process. But, we didn’t achieve the Olmstead decision by voting or by being reasonable, but through litigation. Women didn’t get the vote through voting. Blacks didn’t defeat Jim Crowe through voting. And we didn’t create US democracy by politely placating the salaried ambassadors of the power personified in the King of England. How long will we listen to the counsel of patience and restraint? As demonstrated in all human and civil rights movements throughout history, this is not a situation in which we have been impatient. The neglect has gone on for centuries. We have a responsibility in the face of an obstinacy that threatens our very survival to show resolve and the belief in our own worth to end the negotiations and diplomacy. This is a situation that calls for direct action with a commitment to the difficult and sustained struggle that will ultimately free us.
Saturday, January 27, 2007
"Bad Activists!"
This morning Magenta and I tuned in to C-Span to watch coverage of the war protest in Washington D.C. It was 9:00 A.M. our time and noon in the country's capitol. We were very much taken with the passion and conviction shown by speakers such as Jesse Jackson, Susan Sarandon, and Jane Fonda. They each made their points, speaking on behalf of Black people, veterans, women, poor folk, etc. We agreed with almost all of what was said, and also believe this is an unjust war based on imperialistic fantasy and corporate greed. However; we noted that the cost of this debacle for people with disabilities beyond wounded vets wasn't mentioned by any of the featured speakers, and this troubled us.
By 10:20 we went online to see if there was anything going on locally that we might be able to participate in. We wanted to make sure that a perspective regarding people with non war- related disabilities would be included in the discussion. We went to Portland Indy Media and found a protest scheduled for noon in Vancouver Washington in support of the D.C. march. Although we knew that a peace march would totally wipe us out, since we had contagious insomnia last night, both waking up at 2:00AM, we decided to go.
The next hour was extremely energizing. We turned up the volume on the T.V. and ran around the house getting ready. Magenta painted a sign that on one side read "WAR $UCK$", and on the other "MANDATE (big peace sign)". I gathered up all the pertinent buttons I could find. "Question Authority", "No War!", "Be Vigilant... Watch the Right Wing Like a Hawk", "Healthcare For All", "Choose", and a few white dove pins. We affixed these to our outer shirts. We grabbed the camcorder and made sure it was good to go. It was. I located an African shaker instrument, a Tibeten prayer drum, and took the mouth piece off my recorder. We were fully loaded. The final touch was our wildly colorful activist hats which we had yet to wear in public. Out the door we went at 11:20.
Living near the I-5 bridge that connects Oregon and Washington, we made it to the designated protest site by 11:35, in plenty of time to find a descent parking spot and join the fray. Only one small problem... nobody else was there. I commented that it seemed strange that organizers wouldn't be there already and we decided to drive around the area, thinking that possibly there was a staging area in a different place. We canvassed the neighborhood completely; up and down every street within a mile. No luck. At 11:50 we took one more spin past where this event was supposed to take place. Uh-uh. At that point we got back on the freeway to head home.
As we drove along in silence, totally bummed out, Magenta finally muttered, “We’re the worst activists on the planet – like we held a protest and nobody came.” By this point we were laughing, feeling stupid, and wondering how this had happened. “Yes, a job well done." I immediately came back with "Mission accomplished. Now take off that stupid hat." By the time we pulled into the driveway it was 12:10; just in time to share a turkey bologna sandwich and take a long overdue nap.
By 10:20 we went online to see if there was anything going on locally that we might be able to participate in. We wanted to make sure that a perspective regarding people with non war- related disabilities would be included in the discussion. We went to Portland Indy Media and found a protest scheduled for noon in Vancouver Washington in support of the D.C. march. Although we knew that a peace march would totally wipe us out, since we had contagious insomnia last night, both waking up at 2:00AM, we decided to go.
The next hour was extremely energizing. We turned up the volume on the T.V. and ran around the house getting ready. Magenta painted a sign that on one side read "WAR $UCK$", and on the other "MANDATE (big peace sign)". I gathered up all the pertinent buttons I could find. "Question Authority", "No War!", "Be Vigilant... Watch the Right Wing Like a Hawk", "Healthcare For All", "Choose", and a few white dove pins. We affixed these to our outer shirts. We grabbed the camcorder and made sure it was good to go. It was. I located an African shaker instrument, a Tibeten prayer drum, and took the mouth piece off my recorder. We were fully loaded. The final touch was our wildly colorful activist hats which we had yet to wear in public. Out the door we went at 11:20.
Living near the I-5 bridge that connects Oregon and Washington, we made it to the designated protest site by 11:35, in plenty of time to find a descent parking spot and join the fray. Only one small problem... nobody else was there. I commented that it seemed strange that organizers wouldn't be there already and we decided to drive around the area, thinking that possibly there was a staging area in a different place. We canvassed the neighborhood completely; up and down every street within a mile. No luck. At 11:50 we took one more spin past where this event was supposed to take place. Uh-uh. At that point we got back on the freeway to head home.
As we drove along in silence, totally bummed out, Magenta finally muttered, “We’re the worst activists on the planet – like we held a protest and nobody came.” By this point we were laughing, feeling stupid, and wondering how this had happened. “Yes, a job well done." I immediately came back with "Mission accomplished. Now take off that stupid hat." By the time we pulled into the driveway it was 12:10; just in time to share a turkey bologna sandwich and take a long overdue nap.
Tuesday, January 23, 2007
What If I Was Quiet?
When I was 14 years old and the Viet Nam war was raging my 2 older brothers were considering what they should do to avoid being drafted. One of them was 19, fresh out of high school. The eldest was 21, he’d quit college and was working on becoming an actor. My father who had been a sergeant in the army during WWII was opposed to the war, and had stepped away from an active political life he’d had during the Kennedy years. I heard about a protest that was to take place in the middle of the week at the college. Kids were going to walk out of the high school at a given time and march to the college for a rally. I joined them, chanting “Hell no, we won’t go!” and “1-2-3-4, we don’t want your fucking war!” I was the only freshman who walked out. I got suspended from school. The war ended 2 years later and neither of my brothers had to go.
When I was 22 I was off picking apples in Vermont in the autumn. Somehow I heard about a non violent protest that was to take place on Long Island at the Shoreham Nuclear facility. The reactor was about 50 miles between where my mother lived and New York City. If it had melted down, she would have been trapped on Eastern Long Island with no means to escape. I joined a few hundred people in the middle of the night hiding in the woods along a long stretch of road leading to the plant. When the workers began to arrive at day break, we went out one group at a time and laid down in the road until the police carried us to waiting vans for arrest. This went on for several hours, one group after the other, singing and chanting as we came from out of the woods and on to the road. Eventually a plant manager gave up, sending the workers home. It was amazing… all this cheering from inside locked vans. Within a year the Shoreham Nuclear Plant was closed for good and my mother ultimately died of natural causes.
I began working in social services here in Oregon when I was 28. I’ve never been accused of being too ambivalent on the job, and have butted heads with superiors and
Employers when I didn’t think things were fair or just regarding the people I’ve served. I know its cost me a good chunk of change and opportunity, but I’ve always figured it’s about the “people” not me.
My only sister died when I was 42. She left behind a 16 year old son who has autism. He moved here from California on 12/23/99. Working with Joe was initially a difficult task. Working with Portland Public Schools was even harder. Before he’d been enrolled in PPS for 2 full school years he’d attended 4 different high schools in our attempts to get him a real education instead of what “special” education was offering him. Finally we took the district to court in due process. Without a lawyer (they had 2) we litigated, shamed, and proved them negligent in providing him a free appropriate public education.. For the next 1 ½ years Joe attended Sylvan Learning Center on their dime. We’ve since had to battle on his behalf regarding questionable “supports”, diagnosis, housing choice, employment, and social opportunities. It’s ongoing, and I suspect that to continue, but he’s family and now lives a happy and productive adult life.
When I was 45 I went to work for a brokerage set up through a lawsuit settlement (see “State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services”) to provide long awaited supports for people who had been denied the help they needed for many years. After paying close attention to the “shell game” the state was playing I began to speak up. When I refused to stop telling the truth I was threatened with termination, and was compelled to resign from my job rather than being fired for doing the right thing on behalf of the people I love. That was truly a very painful part of my life, but 2 great things came from out of the pain. The Disability Activists Work group (DAWG) took off, and the state committed to stop its practice of shifting the savings from the brokerage system to elsewhere in the budget. No matter what you may hear or believe, DAWG was the catalyst which caused that commitment to be made.
What’s next? That remains to be seen, but it will be seen. Do I believe that I stopped the Viet Nam war, shut down a nuclear plant, defeated a school district, or altered the Oregon Legislature? Am I saying that I’m a saint and perpetually in the right? HELL NO! The mistakes I’ve made in my life are at least equal the good I’ve done. However; I do believe that one voice refusing to be quieted by the risk of "trouble" CAN make a difference in this world. Is that not why we’re here?
When I was 22 I was off picking apples in Vermont in the autumn. Somehow I heard about a non violent protest that was to take place on Long Island at the Shoreham Nuclear facility. The reactor was about 50 miles between where my mother lived and New York City. If it had melted down, she would have been trapped on Eastern Long Island with no means to escape. I joined a few hundred people in the middle of the night hiding in the woods along a long stretch of road leading to the plant. When the workers began to arrive at day break, we went out one group at a time and laid down in the road until the police carried us to waiting vans for arrest. This went on for several hours, one group after the other, singing and chanting as we came from out of the woods and on to the road. Eventually a plant manager gave up, sending the workers home. It was amazing… all this cheering from inside locked vans. Within a year the Shoreham Nuclear Plant was closed for good and my mother ultimately died of natural causes.
I began working in social services here in Oregon when I was 28. I’ve never been accused of being too ambivalent on the job, and have butted heads with superiors and
Employers when I didn’t think things were fair or just regarding the people I’ve served. I know its cost me a good chunk of change and opportunity, but I’ve always figured it’s about the “people” not me.
My only sister died when I was 42. She left behind a 16 year old son who has autism. He moved here from California on 12/23/99. Working with Joe was initially a difficult task. Working with Portland Public Schools was even harder. Before he’d been enrolled in PPS for 2 full school years he’d attended 4 different high schools in our attempts to get him a real education instead of what “special” education was offering him. Finally we took the district to court in due process. Without a lawyer (they had 2) we litigated, shamed, and proved them negligent in providing him a free appropriate public education.. For the next 1 ½ years Joe attended Sylvan Learning Center on their dime. We’ve since had to battle on his behalf regarding questionable “supports”, diagnosis, housing choice, employment, and social opportunities. It’s ongoing, and I suspect that to continue, but he’s family and now lives a happy and productive adult life.
When I was 45 I went to work for a brokerage set up through a lawsuit settlement (see “State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services”) to provide long awaited supports for people who had been denied the help they needed for many years. After paying close attention to the “shell game” the state was playing I began to speak up. When I refused to stop telling the truth I was threatened with termination, and was compelled to resign from my job rather than being fired for doing the right thing on behalf of the people I love. That was truly a very painful part of my life, but 2 great things came from out of the pain. The Disability Activists Work group (DAWG) took off, and the state committed to stop its practice of shifting the savings from the brokerage system to elsewhere in the budget. No matter what you may hear or believe, DAWG was the catalyst which caused that commitment to be made.
What’s next? That remains to be seen, but it will be seen. Do I believe that I stopped the Viet Nam war, shut down a nuclear plant, defeated a school district, or altered the Oregon Legislature? Am I saying that I’m a saint and perpetually in the right? HELL NO! The mistakes I’ve made in my life are at least equal the good I’ve done. However; I do believe that one voice refusing to be quieted by the risk of "trouble" CAN make a difference in this world. Is that not why we’re here?
Sunday, January 21, 2007
Protection & Advocacy Agencies and Class Actions: The Example of the Staley Lawsuit in Oregon
Let’s talk about “class actions.” They say the Staley lawsuit in Oregon was a class action. Although the case wasn't originally presented as a class action, there was a reason that the lawyers at Oregon Advocacy Center (Oregon’s protection and advocacy agency) worked with the lawyers for the state of Oregon to quickly convert it to one. We could criticize the Staley Settlement as just another “coupon settlement” – a favored legal maneuver that protects the defendant by binding everyone in the “class” with an unreasonably low settlement or a minimal benefit, such as a small check or a coupon for future services from the defendant -- in this case, the State of Oregon. This allows the defendant to forestall major liability by preventing a large number of people from litigating their claims separately and possibly winning larger individual awards. But, the Staley Settlement is unique in that it discriminates against certain members of its own defined class. It provides some members with immediate, comprehensive relief regardless of how long they’ve waited, and for the rest, a “coupon” for services available only on a timeline that is still unreasonable and still determined by the defendant.
The definition of a “reasonable” wait for relief is defined in the settlement itself: “thereafter, all individuals who become eligible to receive support services will receive the services contained in the agreed-upon ISP within 90 days after they become eligible.” This definition of reasonable is also reflected in the period of time between September and December (90 days), in which the original plaintiffs received their services. Yet, 6 years later 2,000 other members of this “equal” class are still waiting to cash in their coupons!
Then there’s the fact that in the Staley case,” the class was defined as “all similarly-situated individuals with developmental disabilities who are or may be eligible to receive services under the federal Medicaid program.” Where is the common wrong that these individuals have suffered as a result of the actions of the defendant? Just being eligible for services doesn’t distinguish someone as a member of a “class” for the purposes of a class action. Similarly-situated would be that you’ve been denied services and you’ve waited an unreasonable length of time, just as the original plaintiffs had complained. It’s shocking that the court even accepted this definition of the class. Could be that this demonstrates the judge’s own bias about developmental disabilities, that it’s really the disability itself that causes the suffering, not any action of the defendant. But, we know that being denied services is unique to some and not to others – the similar wrong they’ve suffered that warranted a lawsuit in the first place.
A common argument is that the requirement of court approval of a settlement and the ability of class members to opt out of settlements provide sufficient protections from these kinds of negative results of class action settlements. The argument goes no member of the so-called “class” has contested the settlement or the modification, so it must be OK with them, right? That would depend on whether they ever received a notice or that they understood it if they did. What a cruel irony! In the case of the Staley Settlement, in order for the members of this “class” to participate effectively in the legal process, they require exactly the kind of assistive services they are waiting for: assistance with interpretation of information, communication aids and accommodations, transportation to get to the court house, the state Capitol or to the implementation planning group meeting (assuming they were ever invited), and advocates to accompany them there to speak up for their rights. It’s doubtful that a class action could ever be an appropriate legal tool to be used by protection and advocacy agencies in a case like this.
The benefit of the Staley Agreement for the State is clear: “During the life of the Agreement, the Advocates [Oregon Advocacy Center] and The Arc of Oregon shall forebear from commencing any action on behalf of adults with developmental disabilities eligible for ICF/MR services on the basis of claims that are substantially the same as the claims asserted by plaintiffs in the Lawsuit.” But, wait a minute. The “Advocates” in this case are the publicly funded legal resource established by the DD Act because it was recognized that people with developmental disabilities are less likely to have access to lawyers! No kidding. Now more than ever.
The only thing the Staley Settlement accomplished was to take the teeth out of the P&A agency, so that people who are still waiting don't have the option to bring lawyers to argue that the state is investing too little and taking too long, and that they are being discriminated against because they’re still waiting for the Medicaid services they are already eligible for. Class action settlements are always designed to make things easier on the defendant. All you have to do is read the settlement and compare it to the state’s “Six Year Plan.” It’s always been in the plan to delay services for the waiting list while they shifted those already in services into cheaper (for the state) slots. Either Oregon’s P&A “advocates” did some very poor lawyering in this case (but they wouldn’t admit to that, would they?) or they were complicit with the governor’s lawyers to protect the state’s interests first and foremost (not likely they’ll cop to that one, either).
The definition of a “reasonable” wait for relief is defined in the settlement itself: “thereafter, all individuals who become eligible to receive support services will receive the services contained in the agreed-upon ISP within 90 days after they become eligible.” This definition of reasonable is also reflected in the period of time between September and December (90 days), in which the original plaintiffs received their services. Yet, 6 years later 2,000 other members of this “equal” class are still waiting to cash in their coupons!
Then there’s the fact that in the Staley case,” the class was defined as “all similarly-situated individuals with developmental disabilities who are or may be eligible to receive services under the federal Medicaid program.” Where is the common wrong that these individuals have suffered as a result of the actions of the defendant? Just being eligible for services doesn’t distinguish someone as a member of a “class” for the purposes of a class action. Similarly-situated would be that you’ve been denied services and you’ve waited an unreasonable length of time, just as the original plaintiffs had complained. It’s shocking that the court even accepted this definition of the class. Could be that this demonstrates the judge’s own bias about developmental disabilities, that it’s really the disability itself that causes the suffering, not any action of the defendant. But, we know that being denied services is unique to some and not to others – the similar wrong they’ve suffered that warranted a lawsuit in the first place.
A common argument is that the requirement of court approval of a settlement and the ability of class members to opt out of settlements provide sufficient protections from these kinds of negative results of class action settlements. The argument goes no member of the so-called “class” has contested the settlement or the modification, so it must be OK with them, right? That would depend on whether they ever received a notice or that they understood it if they did. What a cruel irony! In the case of the Staley Settlement, in order for the members of this “class” to participate effectively in the legal process, they require exactly the kind of assistive services they are waiting for: assistance with interpretation of information, communication aids and accommodations, transportation to get to the court house, the state Capitol or to the implementation planning group meeting (assuming they were ever invited), and advocates to accompany them there to speak up for their rights. It’s doubtful that a class action could ever be an appropriate legal tool to be used by protection and advocacy agencies in a case like this.
The benefit of the Staley Agreement for the State is clear: “During the life of the Agreement, the Advocates [Oregon Advocacy Center] and The Arc of Oregon shall forebear from commencing any action on behalf of adults with developmental disabilities eligible for ICF/MR services on the basis of claims that are substantially the same as the claims asserted by plaintiffs in the Lawsuit.” But, wait a minute. The “Advocates” in this case are the publicly funded legal resource established by the DD Act because it was recognized that people with developmental disabilities are less likely to have access to lawyers! No kidding. Now more than ever.
The only thing the Staley Settlement accomplished was to take the teeth out of the P&A agency, so that people who are still waiting don't have the option to bring lawyers to argue that the state is investing too little and taking too long, and that they are being discriminated against because they’re still waiting for the Medicaid services they are already eligible for. Class action settlements are always designed to make things easier on the defendant. All you have to do is read the settlement and compare it to the state’s “Six Year Plan.” It’s always been in the plan to delay services for the waiting list while they shifted those already in services into cheaper (for the state) slots. Either Oregon’s P&A “advocates” did some very poor lawyering in this case (but they wouldn’t admit to that, would they?) or they were complicit with the governor’s lawyers to protect the state’s interests first and foremost (not likely they’ll cop to that one, either).
Wednesday, January 17, 2007
"Special Needs"
As individuals on this planet, we’re all different from each other which makes us all the same. I know this makes sense if and when you’re able to slow your brain down enough to think about it. The people who know and care about us will generally strive to understand HOW we are different so they can be supportive of who we are. I believe everyone does this for their loved ones. It’s related to interdependence and innate survival.
I realize that I’m pretty complex, and feel fortunate that a handful of people value me enough that they’ve learned how to support and love me in spite of my differences. In turn there are a handful of people that I’ve gone out of my way to understand their differences so that they know someone “gets” them. There’s real beauty in this.
Why then, does society put the label of “special needs” on some people, when we all have individualized needs? Is it because some people have needs that society refuses to understand and accept as natural? Is it because some people are less valued by society because their differences are more obvious or blatant? Are anyone’s needs really more special than anyone else’s? I don’t believe they are.
The thought underlying what I’m writing here (in case you haven’t already figured it out) is that I believe it’s time to stop labeling people who have different needs than the vast majority as “special”. It only serves to set them apart from their peers and community, limiting and marginalizing them. I believe that true inclusion in society can only happen when we see each other as individuals who are all the same. Ya know??
I realize that I’m pretty complex, and feel fortunate that a handful of people value me enough that they’ve learned how to support and love me in spite of my differences. In turn there are a handful of people that I’ve gone out of my way to understand their differences so that they know someone “gets” them. There’s real beauty in this.
Why then, does society put the label of “special needs” on some people, when we all have individualized needs? Is it because some people have needs that society refuses to understand and accept as natural? Is it because some people are less valued by society because their differences are more obvious or blatant? Are anyone’s needs really more special than anyone else’s? I don’t believe they are.
The thought underlying what I’m writing here (in case you haven’t already figured it out) is that I believe it’s time to stop labeling people who have different needs than the vast majority as “special”. It only serves to set them apart from their peers and community, limiting and marginalizing them. I believe that true inclusion in society can only happen when we see each other as individuals who are all the same. Ya know??
Sunday, January 14, 2007
What Would Dr. King Say?
Being relatively new to the blog universe, I’m trying to figure out how this all works. Thankfully, I’m honored to be associated with the multi-talented Magenta who set this up. Left to my own devices I’d probably either flounder eternally in cyber space or throw this computer through a window. I’ve never been know for patience.
This leads me to the reason I’m posting today. I’ve been thinking about the Reverend Dr. Martin Luther King Jr. more than usual the last few days. With the celebration of his birth and all the accompanying activities upon us, I’ve been doing a lot of reflecting and sharing with Magenta on what he was all about. His vision for this country and his “Dream” for all people will be the topic of many public events tomorrow. I wonder how much we’ll be hearing about his patience.
I have heard far too often that people with developmental and physical disabilities have come a long way in society over the years. Some of the examples cited are along the lines of “most of the state run institutions that once housed folks are no longer in operation”. That saves those states a good amount of money. People tell you “self direction is much more prevalent than it used to be”. You’ll also hear "children with disabilities are now more included at school than ever before”. Without available resources, it really doesn’t mean much does it?. I’d say these are questionable signs of progress, and not nearly good enough
75% of people having disabilities are poor in this country. That sucks!
35% of people with disabilities are employed. 78% of people without disabilities are employed. That sucks!
46% of people with disabilities in the U.S. report having to go without needed medical equipment. That sucks too!
If Dr. King had focused on ideas such as “at least we’re no longer slaves” in 1963 or had written a speech where he proclaimed “I have a wish list!” the Black civil rights movement would have gone nowhere. He made demands. He made some people very angry. He raised his voice and shook his fist. He was impatient. It’s my hope that readers of this blog will get in touch with their own impatience and refuse to settle any longer.
This leads me to the reason I’m posting today. I’ve been thinking about the Reverend Dr. Martin Luther King Jr. more than usual the last few days. With the celebration of his birth and all the accompanying activities upon us, I’ve been doing a lot of reflecting and sharing with Magenta on what he was all about. His vision for this country and his “Dream” for all people will be the topic of many public events tomorrow. I wonder how much we’ll be hearing about his patience.
I have heard far too often that people with developmental and physical disabilities have come a long way in society over the years. Some of the examples cited are along the lines of “most of the state run institutions that once housed folks are no longer in operation”. That saves those states a good amount of money. People tell you “self direction is much more prevalent than it used to be”. You’ll also hear "children with disabilities are now more included at school than ever before”. Without available resources, it really doesn’t mean much does it?. I’d say these are questionable signs of progress, and not nearly good enough
75% of people having disabilities are poor in this country. That sucks!
35% of people with disabilities are employed. 78% of people without disabilities are employed. That sucks!
46% of people with disabilities in the U.S. report having to go without needed medical equipment. That sucks too!
If Dr. King had focused on ideas such as “at least we’re no longer slaves” in 1963 or had written a speech where he proclaimed “I have a wish list!” the Black civil rights movement would have gone nowhere. He made demands. He made some people very angry. He raised his voice and shook his fist. He was impatient. It’s my hope that readers of this blog will get in touch with their own impatience and refuse to settle any longer.
Friday, January 12, 2007
State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services
From 2001 to 2005, the State of Oregon saved over 29 million dollars through nine community based "brokerages" operating to connect adults with developmental disabilities with services in the community. More than 2,000 people are still waiting for services and currently receiving nothing more than a yearly visit with a county case manager. It's important to note that these are people who have already qualified for Medicaid funded services, but have been placed on a "waiting list" because it's said that services are not available. But, instead of making services available, the legislature has chosen to use the savings to help balance the State's budget.
UNLOCK THE WAITLIST! Staley Settlement November 2001
Most of you are probably unaware of a lawsuit brought by Oregon Advocacy Center back in 2000 on behalf of five Medicaid eligible adults with developmental disabilities. Oregon Advocacy Center is the federally funded Protection and Advocacy agency charged with providing legal assistance and investigating and resolving abuse and neglect cases involving people with mental and developmental disabilities. In this case, the neglect charges were brought against then Governor Kitzhaber and the state of Oregon. How were they neglecting people with developmental disabilities? By denying equal access to Medicaid funded support services to all people with developmental disabilities who already qualified for them. According to Medicaid rules, services are supposed to be in place within 90 days of eligibility.
Immediately the governor’s lawyers got together with the lawyers at OAC to arrange a settlement. Although there was plenty of evidence of the state’s long term neglect, the lawyers decided on a settlement known as the Staley Settlement. According to the agreement, appropriate support services were to be made available to ALL adults eligible for developmental disability services by 2005.
The disability advocacy community was all over the media - from the ARC to the Oregon Council on Developmental Disabilities (OCDD), the "Unlock the Waitlist" campaign was a success! Brokerages were created with the mission statement: “Universal access to services for all!”
But, from the beginning, the state was enrolling into brokerages more people who already had been receiving state-funded services and young people straight out of high school than people who had been on the original waiting list. In retrospect, it appeared that the plan from the beginning was to transfer people to the brokerages at a lower cost and return the savings to the general fund to use elsewhere, rather than reinvesting it in services for people with developmental disabilities who were waiting. By late 2003, only 1,000 of the original 3,100 had been enrolled from the waiting list. A freeze on new enrollments was put in place.
Resettlement signed by governor September 22 2003
No one from the advocacy community including the ARC of Oregon, Oregon Council on Developmental Disabilities (OCDD), or the brokerages appeared at a hearing on Jan 14, 2004 to contest the September 22, 2003 "modification" of the agreement that extended the waitlist to 2009. By this time, the advocates had taken up the mantra of "protect what we have" rather than insisting on getting services to the 2,000 people who were still waiting. This time the media was absent, too. According to the questions and answers document prepared by DHS and posted on the ARC website, "the modification saves the State money and prevents cuts in existing services by extending the pace and timelines in which people will eventually get services."
Disability Activists Work Group (DAWG)
At the ARC's 50 year anniversary convention May 8, 2004, Mike Maley, one of the DHS employees responsible for overseeing the implementation of the brokerages, announced that 50% of the people from the waitlist were now enrolled in the brokerages. At the time, David was a Personal Agent (case manager) working at Inclusion, Inc, one of the brokerages located in Portland. He knew the truth was that of the original 3,100 on the waiting list, only 1/3 had been enrolled. On May 9, the day following this deliberate confusion of the facts regarding enrollment numbers, the Disability Activists Work Group (DAWG) was formed.
The Unified Response: Stonewalling and Silence
On May 25 DAWG attended a DHS budget Hearing where we made it clear that what was going on would not be done quietly or without protest. When David was done with his testimony calling into question the shell game that DHS was playing with the Staley budget, Gary Weeks, director of DHS at the time, stated that he couldn't argue with any of the points David had made.
On August 2, at another DHS budget hearing, Mr. Weeks gave a presentation in which he said that community based brokerage services were less expensive for the state. On August 26, DAWG sent James Toewes, director of Seniors and People with Disabilities (SPD), four specific questions identifying several "pots" of money where it appeared that millions of dollars must have already been saved -- either through individual service plan dollars that were budgeted but never used, or lower administrative and service costs from those they had transferred to the brokerages. He replied on 9/30/04, but only after some "urging" from us to Gary Weeks. His reply was that he didn't have the staff resources to answer our questions, and suggested that we contact Jim Wrigley of the Oregon Advocacy Center (OAC) or Bill Lynch, the chair of the Staley Implementation Group to get the answers.
We knew that Mr. Toewes was just stonewalling us, but we wrote to Mr. Wrigley anyway. On October 20, 2004 Jim Wrigley responded that he didn't know the answers to any of our questions about the budget. We wondered how or why the attorney for the litigants would resettle without having this kind of detail on the budget for implementing the program outlined in the agreement. (NOTE: This was a full year after the resettlement.) In any event, he wouldn't have time to look into it until after the Emergency Board meeting in November, 2004.
By January 6, 2005 we still hadn’t heard from Mr. Wrigley at OAC responding to our questions from 3 months earlier, so DAWG contacted Senator Avel Gordley asking for help in getting the answers to our questions regarding the vast savings the State has seen through the misuse of the Staley Settlement funding. On January 24, 2005, Senator Gordley wrote a pointed email to Mr. Weeks at DHS telling him to get us the numbers we had been requesting since August.
We finally received the numbers from Jim Wrigley of OAC on 2/28/05. (NOTE the confidentiality warning regarding public information.) Mr. Wrigley’s calculation was a little more than $20.5 million, which doesn’t include the savings in operating costs at the brokerages. This adds another 8.5 million in savings. It’s easy to chalk up lower operating costs if you need fewer personal agents (case managers) to handle a lower caseload due to keeping people on the waiting list. Our calculation from the information we finally received from DHS is that over 29 million of the legislatively adopted budget was saved through the brokerages and returned to the state's general fund. Note that in his email Mr. Wrigley acknowledges that this program was cut by 50%.
For almost two years, DAWG (Disability Activists Work Group) has sought to call for accountability on how and why this could happen to such a vulnerable population. We have contacted several of our legislators, but no one in the legislature has seen fit to answer any question regarding what happened to the 29 million.
As it turns out, the November Emergency Board meeting that Mr. Wrigley referred to was an opportunity for DHS to present yet another “rebalancing” of their budget, in which they shifted $14.2 million of the previously established funding from the Staley program to the general fund to be used for other programs.
On one of the last days of the 2005 legislative session on the Oregon Public Affairs Network, Senator Kurt Schrader spoke on the floor about HB 2797, which won’t allow the State to continue its practice of using the Staley savings to fund other state programs. He thanked “the Staley folks for ONCE AGAIN stepping up to the plate in light of the difficulties within the budget” and recommended that the bill be passed.
We wrote to the Staley Implementation Group (SIG) early in the morning on August 10 asking four questions related to Senator Schrader’s comment. Since the Staley Implementation Group is supposed to be the oversight committee in charge of the decision making around implementation of the settlement, we assumed they must be the “Staley folks” the senator mentioned and that they would know what he was referring to in his commendation about “stepping up.”
DAWG later received a forwarded copy of an interesting email from Kathryn Weit to the SIG members, who is the legislative liaison (paid lobbyist) for the Oregon Council on Developmental Disabilities and a Staley Implementation Group member, urging the rest of the group to stay on message and not respond directly to our questions. (NOTE that our email to SIG was also sent to the legislators, but Ms. Weit chose to take them out of the loop in her message.) It’s interesting that while the SIG is supposed to be the oversight committee, Ms. Weit is obviously educating them about something they had no knowledge of. To this date, we have not received the “unified response” she refers to. This unified response to DAWG(S) was also mentioned in the minutes of the SIG committee in September. We have requested a copy of the unified response that was discussed during the September meeting, but have so far been stonewalled on this, too.
DAWG believes that the protection and advocacy system lawyers and the Staley Implementation Group should have stepped up to insist that any savings be returned to the program to expand services to more people. This is especially true since there was a lawsuit settlement that intended just that. If a settlement is going to create a special fund for a special purpose, we have a reasonable expectation that the money in that fund will be spent for that purpose, and not be used as a slush fund to provide backup financing for other programs.
Over 2,000 people continue to wait
The Staley agreement has never been fully funded or executed in good faith according to the court order. The governor’s “principles” budget for 2005-2007 continues the trend to underfund the program. There are still over 2,000 people with a developmental disability whose civil rights are violated daily by remaining on the waitlist for Medicaid Home and Community Based Waiver Services for which they have already been found eligible. Some of these people have been waiting for more than 30 years. For too long, state policy makers, politicians and the public have ignored that which is plainly stated in the ADD Act of 2000, that "a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support ... and remain unserved or underserved."
UNLOCK THE WAITLIST! Staley Settlement November 2001
Most of you are probably unaware of a lawsuit brought by Oregon Advocacy Center back in 2000 on behalf of five Medicaid eligible adults with developmental disabilities. Oregon Advocacy Center is the federally funded Protection and Advocacy agency charged with providing legal assistance and investigating and resolving abuse and neglect cases involving people with mental and developmental disabilities. In this case, the neglect charges were brought against then Governor Kitzhaber and the state of Oregon. How were they neglecting people with developmental disabilities? By denying equal access to Medicaid funded support services to all people with developmental disabilities who already qualified for them. According to Medicaid rules, services are supposed to be in place within 90 days of eligibility.
Immediately the governor’s lawyers got together with the lawyers at OAC to arrange a settlement. Although there was plenty of evidence of the state’s long term neglect, the lawyers decided on a settlement known as the Staley Settlement. According to the agreement, appropriate support services were to be made available to ALL adults eligible for developmental disability services by 2005.
The disability advocacy community was all over the media - from the ARC to the Oregon Council on Developmental Disabilities (OCDD), the "Unlock the Waitlist" campaign was a success! Brokerages were created with the mission statement: “Universal access to services for all!”
But, from the beginning, the state was enrolling into brokerages more people who already had been receiving state-funded services and young people straight out of high school than people who had been on the original waiting list. In retrospect, it appeared that the plan from the beginning was to transfer people to the brokerages at a lower cost and return the savings to the general fund to use elsewhere, rather than reinvesting it in services for people with developmental disabilities who were waiting. By late 2003, only 1,000 of the original 3,100 had been enrolled from the waiting list. A freeze on new enrollments was put in place.
Resettlement signed by governor September 22 2003
No one from the advocacy community including the ARC of Oregon, Oregon Council on Developmental Disabilities (OCDD), or the brokerages appeared at a hearing on Jan 14, 2004 to contest the September 22, 2003 "modification" of the agreement that extended the waitlist to 2009. By this time, the advocates had taken up the mantra of "protect what we have" rather than insisting on getting services to the 2,000 people who were still waiting. This time the media was absent, too. According to the questions and answers document prepared by DHS and posted on the ARC website, "the modification saves the State money and prevents cuts in existing services by extending the pace and timelines in which people will eventually get services."
Disability Activists Work Group (DAWG)
At the ARC's 50 year anniversary convention May 8, 2004, Mike Maley, one of the DHS employees responsible for overseeing the implementation of the brokerages, announced that 50% of the people from the waitlist were now enrolled in the brokerages. At the time, David was a Personal Agent (case manager) working at Inclusion, Inc, one of the brokerages located in Portland. He knew the truth was that of the original 3,100 on the waiting list, only 1/3 had been enrolled. On May 9, the day following this deliberate confusion of the facts regarding enrollment numbers, the Disability Activists Work Group (DAWG) was formed.
The Unified Response: Stonewalling and Silence
On May 25 DAWG attended a DHS budget Hearing where we made it clear that what was going on would not be done quietly or without protest. When David was done with his testimony calling into question the shell game that DHS was playing with the Staley budget, Gary Weeks, director of DHS at the time, stated that he couldn't argue with any of the points David had made.
On August 2, at another DHS budget hearing, Mr. Weeks gave a presentation in which he said that community based brokerage services were less expensive for the state. On August 26, DAWG sent James Toewes, director of Seniors and People with Disabilities (SPD), four specific questions identifying several "pots" of money where it appeared that millions of dollars must have already been saved -- either through individual service plan dollars that were budgeted but never used, or lower administrative and service costs from those they had transferred to the brokerages. He replied on 9/30/04, but only after some "urging" from us to Gary Weeks. His reply was that he didn't have the staff resources to answer our questions, and suggested that we contact Jim Wrigley of the Oregon Advocacy Center (OAC) or Bill Lynch, the chair of the Staley Implementation Group to get the answers.
We knew that Mr. Toewes was just stonewalling us, but we wrote to Mr. Wrigley anyway. On October 20, 2004 Jim Wrigley responded that he didn't know the answers to any of our questions about the budget. We wondered how or why the attorney for the litigants would resettle without having this kind of detail on the budget for implementing the program outlined in the agreement. (NOTE: This was a full year after the resettlement.) In any event, he wouldn't have time to look into it until after the Emergency Board meeting in November, 2004.
By January 6, 2005 we still hadn’t heard from Mr. Wrigley at OAC responding to our questions from 3 months earlier, so DAWG contacted Senator Avel Gordley asking for help in getting the answers to our questions regarding the vast savings the State has seen through the misuse of the Staley Settlement funding. On January 24, 2005, Senator Gordley wrote a pointed email to Mr. Weeks at DHS telling him to get us the numbers we had been requesting since August.
We finally received the numbers from Jim Wrigley of OAC on 2/28/05. (NOTE the confidentiality warning regarding public information.) Mr. Wrigley’s calculation was a little more than $20.5 million, which doesn’t include the savings in operating costs at the brokerages. This adds another 8.5 million in savings. It’s easy to chalk up lower operating costs if you need fewer personal agents (case managers) to handle a lower caseload due to keeping people on the waiting list. Our calculation from the information we finally received from DHS is that over 29 million of the legislatively adopted budget was saved through the brokerages and returned to the state's general fund. Note that in his email Mr. Wrigley acknowledges that this program was cut by 50%.
For almost two years, DAWG (Disability Activists Work Group) has sought to call for accountability on how and why this could happen to such a vulnerable population. We have contacted several of our legislators, but no one in the legislature has seen fit to answer any question regarding what happened to the 29 million.
As it turns out, the November Emergency Board meeting that Mr. Wrigley referred to was an opportunity for DHS to present yet another “rebalancing” of their budget, in which they shifted $14.2 million of the previously established funding from the Staley program to the general fund to be used for other programs.
On one of the last days of the 2005 legislative session on the Oregon Public Affairs Network, Senator Kurt Schrader spoke on the floor about HB 2797, which won’t allow the State to continue its practice of using the Staley savings to fund other state programs. He thanked “the Staley folks for ONCE AGAIN stepping up to the plate in light of the difficulties within the budget” and recommended that the bill be passed.
We wrote to the Staley Implementation Group (SIG) early in the morning on August 10 asking four questions related to Senator Schrader’s comment. Since the Staley Implementation Group is supposed to be the oversight committee in charge of the decision making around implementation of the settlement, we assumed they must be the “Staley folks” the senator mentioned and that they would know what he was referring to in his commendation about “stepping up.”
DAWG later received a forwarded copy of an interesting email from Kathryn Weit to the SIG members, who is the legislative liaison (paid lobbyist) for the Oregon Council on Developmental Disabilities and a Staley Implementation Group member, urging the rest of the group to stay on message and not respond directly to our questions. (NOTE that our email to SIG was also sent to the legislators, but Ms. Weit chose to take them out of the loop in her message.) It’s interesting that while the SIG is supposed to be the oversight committee, Ms. Weit is obviously educating them about something they had no knowledge of. To this date, we have not received the “unified response” she refers to. This unified response to DAWG(S) was also mentioned in the minutes of the SIG committee in September. We have requested a copy of the unified response that was discussed during the September meeting, but have so far been stonewalled on this, too.
DAWG believes that the protection and advocacy system lawyers and the Staley Implementation Group should have stepped up to insist that any savings be returned to the program to expand services to more people. This is especially true since there was a lawsuit settlement that intended just that. If a settlement is going to create a special fund for a special purpose, we have a reasonable expectation that the money in that fund will be spent for that purpose, and not be used as a slush fund to provide backup financing for other programs.
Over 2,000 people continue to wait
The Staley agreement has never been fully funded or executed in good faith according to the court order. The governor’s “principles” budget for 2005-2007 continues the trend to underfund the program. There are still over 2,000 people with a developmental disability whose civil rights are violated daily by remaining on the waitlist for Medicaid Home and Community Based Waiver Services for which they have already been found eligible. Some of these people have been waiting for more than 30 years. For too long, state policy makers, politicians and the public have ignored that which is plainly stated in the ADD Act of 2000, that "a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support ... and remain unserved or underserved."
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