The DRO Blog
Dec 19, 2010
We will have to set priorities in the state budget. Those disability programs and services that promote recovery, choice, self-determination and integration should be at the top.
When it comes to Oregon State Hospital, everyone's talking about culture change. If you listen to government officials, state hospital management and personnel, advocates and the media, they all talk about this thing called "culture" and the need to change it. And it's not just the hospital. Last week, I was at a meeting of "stakeholders" discussing a state initiative to change how group homes are used. Most everyone agreed that the "culture" of this service must change. This is one of those very useful phrases that everyone can agree with as long as the details remain murky.
The two words "culture change" describe a process and destination. The destination is "recovery." The process is how the state hospital and group homes can change their thinking and actions to better promote recovery.
Changing habits of thought and action can be difficult. A reformer might think that getting an new idea announced as a federal policy will lead to quick implementation. Such a policy was announced for "recovery" in the report of The President's New Freedom Commission on Mental Health. It's Vision Statement reads:
We envision a future when everyone with a mental illness will recover, a future when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any stage of life has access to effective treatment and supports — essentials for living, working, learning, and participating fully in the community.
This report was released in 2003. It's ideas were not new to leaders in Oregon's mental health system. But we are still trying to get some traction on the ground level where people with psychiatric disabilities are housed and treated.
In the worlds of physical and intellectual disability services where I also advocate, there are certainly lingering prejudices, paternalism and the imposition of external limitations on individual development. People are still inappropriately stashed in nursing homes, sheltered workshops and self-contained classrooms. But you don't hear too much about culture change. More frequently, you hear concern that people from outside the services systems will not properly understand the existing culture.
As Oregon's new Governor and legislature start to tackle our very severe budget crisis, there will be a lot of talk about what and how much to cut. We must make sure that we always ask whether a program, a service or a facility will help to change the cultures that need to change and expand the cultures that need protecting. Every dollar spent should promote recovery, choice, self-determination and maximum integration.
Nov 27, 2010
Send a letter to Southern Oregon University and be part of a movement for peace and justice.
According to news reports, a young man from Corvallis decided it was a good idea to blow up a bunch of adults and children at the Christmas tree lighting event at Pioneer Square in Portland. The reports say that he planned to leave the country after detonating his bomb.
The stories indicate that this was not some grand conspiracy directed from someplace like Yemen or Pakistan. It appears to be, instead, the idea of a 19 year old graduate of Westview High School and former OSU student.
The news also tells us that a father and son stand accused of deciding it was a good idea to plant a bomb at a bank in Wilsonville to protest either the bank, the federal government or both. They are now being tried for aggravated murder in the death of a policeman who was trying to disarm the bomb.
And then there is the news story about Eliza Schaaf. She is a 20 year old woman with intellectual disabilities who enrolled in a ceramics class at Southern Oregon University. After regularly attending class, Eliza was thrown out of school with just three classes to go. SOU decided that a person with intellectual disabilities could not be allowed to audit one of its classes even though Eliza was not seeking college credit.
Eliza and her family are very disappointed. So are her fellow students who have protested the university’s actions. So are many citizens, newspapers and elected officials who have urged SOU to change its mind. The university is not moved by these appeals and, just yesterday, turned down Eliza’s appeal of its decision.
Eliza has not planted a bomb, except metaphorically. For details, visit her web site at http://www.elizaschaaf.com/.
You will see that Eliza is a direct victim of disability discrimination. She has been treated with ignorance by a university and with disregard by a publicly-funded and supposedly accountable institution. Her grievance is not abstract or theoretical in the slightest. In response, she has chosen to courageously take on this institution using the tools of communication, developing community support, following appeals procedures and working to educate decision-makers.
We need to support Eliza not just because she has been the victim of an injustice but because of how she has chosen to respond. She speaks not just for herself, but for the disability community and for all Americans who believe that we can find justice by reaching out to the hearts and minds of fellow citizens.
I’ve sent my letter to SOU officials decrying their actions. Please join with me with more letters and protest.
The Department of Justice is widening its investigation of Oregon State Hospital to see if Oregon honors patients' Olmstead rights.
The U.S. Supreme Count case, L.C. vs. Olmstead, has been around for over ten years but its full meaning as yet to be realized. The case basically says that the ADA gives people with disabilities the right not to be unnecessarily segregated. Just as the government cannot tell all people of a race or religion that they have to live in one place, it can't require people with disabilities to all live together (say, in a nursing home or state training center) in order to receive services.
Just to clear it up right away, the "Olmstead Act" was passed by Congress in 1909 and addressed the authority of the U.S. President over the affairs of Puerto Rico. Many people use "Olmstead Act" to refer to L.C. vs. Olmstead. In fact, so many do it that a Google search using "Olmstead Act" results almost entirely in stuff about the ADA case. This drives me to distraction. But I digress....
In the last two years, the U.S. Department of Justice (USDOJ) has taken a much more active role in enforcing Olmstead. One result is a recent Settlement Agreement between the U.S. and Georgia. In the agreement, Georgia agreed to stop putting people with developmental disabilities in its state hospitals and, instead, create a system of community services to assist them. It also agreed to build a more comprehensive community mental health system including new 'Assertive Community Treatment Teams," "Community Support Teams," "Intensive Case Management Teams," "Crisis Service Centers," housing, employment, peer services and more.
Fairly soon after completing the settlement in Georgia, USDOJ sent a letter to Oregon saying that it was starting an investigation of how our state is complying with Olmstead. DRO has asserted for years that Oregon does not do a good job on Olmstead. We have sued the state a number of times on behalf of state hospital patients who are not discharged for months and years even though the hospital says the patients are no longer needing hospital-level care. We continue to monitor patients who are stuck in the hospital while a convoluted placement process in which there is no ultimate authority bumbles along.
Oregon has just - just - started a effort to reform how it uses its community residential beds. They call it "Aim High." Oregon still does not have an "Olmstead Plan" which many states have to show how they are working to get people out of state hospitals. DRO has had to use court action and the threat of court action in local communities that fight to keep people with mental disabilities from living in their neighborhoods. The state has never asserted these rights for patients.
Lastly, in the midst of severe budget cuts, Oregon plans to build a new, large state hospital in Junction City. The cost of operating this "big box" in the middle of a field in the Willamette Valley has to come from somewhere. Will it come from school budgets? State police? Corrections? Or, maybe, the desperately strapped community mental health budget? If community mental health is cut to staff Junction City, Oregon will be the anti-Olmstead state: it will create a structure of unnecessary segregation of individuals with mental disabilities.
In sum, Oregon has been and remains content to leave people in expensive, unnecessary state hospital beds. It is planning for an even greater emphasis on segregated care. This is why USDOJ is back for more investigation.
Nov 04, 2010
It's time to look for opportunities for positive change in the year ahead.
Now that most of the votes have been counted, it's time to start planning for the year ahead. In January, Oregon will have a new governor, John Kitzhaber, a House of Representatives that is evenly split between Republicans and Democrats, and a Senate that (as of this writing) will have a narrow Democratic majority.
By far, the biggest issue the new government will face is the state budget. Present projections predict a $3.2 Billion difference between state revenue and the cost of continuing existing state services through the 2011 to 2013 budget cycle. Cuts will need to come from an already slimmed-down budget that took 9% across-the-board reductions this year and may require more downward adjustment if revenue forecasts do not pick up.
What can we expect from the new legislature? If we are fortunate, the even balance of parties will encourage cooperation and moderation. A spirit of common purpose and compromise should include the Governor who will have to be a part of deal-making. With equal participation, neither party should be able to blame the other for the effect of unavoidable service cuts.
If we are not fortunate, there could be chaos, where the more strident voices jockey for advantage and seek to position themselves to tar the other party with accusations of all sorts. This would be a disservice both to the people of Oregon and the institution of the legislature. Hopefully, we Oregonians can avoid what seems to be a trend elsewhere.
Oregon's disability community is now faced with some difficult choices. Legislators will be looking to us for suggestions about where to cut and how to cut. If we refuse to engage, the decisions will be made without us.
As in any difficult decision making process, advocacy groups need to start with defining their core values and envisioning the services that they would like to see down the road. How can we build toward the world we want to see with the least damage to recipients?
To begin with, we need to assure that safety of our most vulnerable, but in doing so we should not underestimate what individuals and their families can accomplish with adequate community supports. We must move away from services that default to institutional settings and expand brokerage and managed care models of community residential and support services.
In tight budget times, supported employment services are often on the chopping board. But in these harsh economic times, does it make sense to keep people in positions of economic dependence and isolation?
This is the time for advocates to put their values to the test. If we don't, other interests will prevail.
Oct 12, 2010
And then ask your candidate how Oregon will care for the 80,000 seniors and people with disabilities who will need help with long-term care by 2030.
Today is the last day to register to vote in the Oregon fall elections. I hope you registered and I hope you vote when the ballot arrives. Why? You are entitled to real answers to real problems. Your vote is your entitlement.
Politics. For me, the word summons up both fascination and frustration, anticipation and aggravation, hope and hostility. I work in the state legislative process as an advocate. I've seen a lot about how it functions. No, it hasn't made me cynical. It's just people trying to work stuff out. As I like to say, things would work more smoothly without people, but I still like to have them around.
Fact is, people with disabilities rely upon Medicare and Medicaid. They are able to get into buildings and go to school and stay on the job because of civil rights laws. Most lawmakers understand that regardless of party. Some candidates pretend that these factors are just dollars on a spreadsheet, not people's lives. One state representative told me that, to him, the ADA meant that the best parking spots at Walmart are always empty and he can't use them.
So what I'm getting at is that voting matters for people with disabilities. Look at candidates' track records, not their promises. Ignore the TV advertising. It's money being thrown at you to upset you in the way that pollsters say will upset you. And as for money, the true question is not whether too much cash is being spent by the government but who gets to decide how to spend it.
Consider this: In June, 2009, almost 19,000 Oregon seniors, 8,750 Oregonians with physical disabilities and 13,700 people with developmental disabilities received long-term care services paid by Medicaid. Thanks to us aging baby-boomers, the need for long-term care is predicted to double within the next 20 years. As your candidate his or her plan for Oregon to handle this reality. Just saying that we should all "sit down at the table" and discuss it is not a real answer.
Sep 22, 2010
While attending a hearing at the legislature, I look to Ben Franklin and Lou Reed for advice and wisdom.
I’m sitting in the peanut gallery of the Interim House Human Service Committee. This is one of the weeks between regular legislative sessions when House and Senate committees meet to hear about important issues and adjust the state budget. The budget news hangs in the air like an impolite odor. Advocates for human services are trying to figure out how to save services in an era of higher demand and much less money. I give my opinion by quoting Ben Franklin: "We must all hang together or, assuredly, we shall all hang separately."
Yesterday, DRO attorney Jim Wrigley testified at the House Education Committee about the need for state law to require schools to have the “burden of proof” in special education hearings. Now, if a parent wants to challenge a school’s failure to provide adequate services for their child, the parent must first present enough information to show that the school is not meeting its legal duties. The school, however, holds all of the relevant information and assessments. It has all the professionals. It has the money and the lawyers.
DRO, parents and advocates believe the present requirements are not fair. Schools should have the duty to show that a student is receiving a legally adequate education program rather than forcing the parent to prove inadequacies. We believe that this change would promote more communication between schools and parents and encourage resolution of problems short of formal hearings.
While Jim was talking to the committee, I was down the hall at the Senate Health Committee talking about the need to change how people with mental and cognitive disabilities are held and treated when they are involved with the criminal justice system. DRO and other advocacy groups are urging changes in how the Psychiatric Security Review Board works with the state hospital. We are also asking the state to stop plans to build a new, expensive state hospital in Junction City. Our message is that this planned hospital is both too expensive and a step in the wrong direction is creating an effective and humane mental health system.
Right now, James Toews from the state Seniors and People with Disabilities Department is talking about how budget cuts are threatening services for these populations. Case loads are going up as the population ages. Federal funding agencies will not allow Oregon to change its eligibility standards and must approve reimbursement rate cuts for services. These factors limit how the state can adjust to the double whammy of increased demand and less money.
Next up are Richard Harris, Greg Roberts and Nina Strickland to talk, once more, about Oregon State Hospital. Greg is the new superintendent of OSH, Nina was the acting superintendent and Richard is the head of the state additions and mental health agency.
Greg just said that some of the problems of the hospital can be solved quickly and all problems can be solved eventually. Rep. Ron Maurer from Grants Pass says he wants to be optimistic but many attempts to fix OSH have not worked. When should the state cut bait? Greg says that OSH is a lot like Greystone Hospital in New Jersey where he was able to turn things around. The biggest problem is the hospital losing its sense of mission. This, he feels, can be quickly addressed.
I think I share Rep. Maurer’s skepticism and hope. Can the guy from New Jersey get it done? We shall see. I feel the need for another quote and so I turn to Lou Reed: "You need a boat full of faith to get by."
Sep 10, 2010
Sen. Wyden proposes that Oregonians be allowed to sidestep the requirement to buy health insurance. I agree, if we can demonstrate other ways to significantly increase coverage and bring down costs.
Health care reform. OK, I said it. If you are like most Americans, you have reacted with either hope or horror. That is because, in my view, millions of dollars have been spent to turn this phrase into a symbol of everything you like or don't like about modern life.
One thing most Americans don't like is being told what to do. If doing that thing also costs money, it will be downright disgusting. Telling an American that s/he HAS to buy health insurance fits this description to a tee.
A very small minority of Americans are health policy nerds. These folks understand that Americans spend more on health care and get less for their money than any other citizenry. They also understand that costs are escalating at an alarming rate and this not only affects the health of Americans but also the competitiveness of American business in the world economy. Not only do Americans not want nerds to run their lives, the don't think nerds HAVE lives.
I mention all this because on August 26, Oregon Senator Ron Wyden sent a letter to Bruce Goldberg who is the director of the Oregon Health Authority. Ron (I can call him "Ron" not only because everyone else does but we used to play basketball together a few centuries ago), said that he wants to help Oregon get a waiver from the federal health care reform law. For any nerds reading this, that law is the "Patient Protection and Affordable Care Act (PPACA). The waiver would allow Oregon move forward with an insurance exchange and minimum benefit package without requiring people to buy insurance.
Ron states: "the heart of real health reform is affordability and not mandates." Not, apparently, being one to dawdle, Dr. Goldberg (I usually call him Bruce because this is Oregon and everyone does) replied two days later. He agreed! He says that Oregon is a perfect place to test the idea that families will choose to purchase insurance policies if they are affordable. Oregon, he states, is well underway in creating a "value based benefit package" and a health insurance exchange that can provide an excellent testing ground for the nation.
Is this a good idea? Some national critics think not. If Oregon is allowed to sidestep the individual mandate, they say, other states that are less well-intentioned will follow. Insurance companies may throw huge resources into lobbying future (less progressive) administrations for waivers that undermine the expansion of health care coverage for Americans.
I'm inclined, however, to side with Ron and Bruce (they can just call me Bob). I'm totally convinced that we must have health care reform in order to improve America's health, eliminate injustice against those with disabilities and other pre-existing conditions and "bend the cost curve" of medical coverage. But I recognize that, as Americans, we don't like being told what to do. We don't mind, however, being shown what works.
The laws governing Medicaid are still based on outdated preferences for institutional care. But waivers have allowed progressive reforms to move forward that improve people's lives, honor their civil and human rights and save money. Waivers do not allow (in most cases) states to "throw grandma under the bus" even though it may seem that way at times.
Lastly, in order to bend that curve, some tough decisions will need to be made. Oregon has worked hard to get public participation at all levels of decision-making. This will continue to be essential and may provide a model for other states. (Even I have sat with the nerds to explain why disability rights must be factored in.)
In this grown-up game of show and tell, the special interests have done a lot of telling. Now it's time to let Oregon show how it's done.
Aug 20, 2010
I was on vacation, but the state's budget woes were not. In considering cuts, the state should 1. Protect the most vulnerable, 2. Get people out of institutions, and 3. Keep people out of institutions and other segregated settings.
In case you didn't notice, I took a summer vacation from my blog.
It all started with a long vacation that my wife and I took to celebrate my 60th birthday and the graduation of our youngest kid from college. That's right, the parents got a gift for the son's graduation. And it was great!
When we planned our vacation six months ago, it seemed like late June and early July would be a period of relative calm. But, of course, it wasn't. The state budget went further in the tank and the Governor was preparing to take 9% off the top of all state budgets. On the list of cuts (all painful) were some items that we at DRO felt were particularly harmful and potentially illegal. These were the provision of in-home support services to seniors and people with mental, physical and developmental disabilities.
As I watched from afar via email, DRO staff geared up to challenge these cuts. Legal research and writing proceeded at a fever pitch. We sent out the word to people who were receiving these services to let us know if they wanted to contest cuts. As our litigation director, Kathy Wilde, was putting together this legal package, the legislature's Emergency Board announced that it was considering the restoration of in-home supports by using some reserve funds and re-allocated money in human services budget. Kathy did not slack off. On the day of the E Board's meeting, she was ready to file suit.
But, to everyone's relief, the legislature followed through and restored funding. When I got back to the office a couple of days later, Kathy presented me with the legal brief and pleadings and I thought to myself that I should take vacations more often.
As you probably know, the state budget has not gotten any better since then. This week, the state announced that its present budget is another $200 to $500 million in the hole. For the next budget cycle, the Governor is asking agencies to present him with proposals for 30% cuts. The final budget for July 2011 to June 2013 will be determined by a new governor and a new legislature, but it's clear that there won't be as much money to go around as we are accustomed.
While it's tempting under these circumstances to just plan my next vacation, I know that the next ten months will require all of us in the human services community to pull together to come up with the best approach to resource development and allocation. We at DRO are committed to to working with our partners to assure that the legal rights and safety of Oregonians with disabilities are honored in this process. In our minds, this means that we must first:
1. Assure the safety of our most vulnerable citizens;
2. Prioritize services that allow people with disabilities who live in segregated facilities to return to the communities, and
3. Prioritize community services and supports that allow individuals with disabilities to maintain independent or family living without having to be educated or served in segregated settings.
The next regular legislative session begins in January. It will be no vacation.
May 27, 2010
Oregon State Hospital is still a mess despite five DRO lawsuits since 1992 trying to fix it. With massive budget cuts on the way, advocates tell the legislature what should be done to change things.
On Tuesday, the Oregon House Human Services Committee held a four hour hearing about Oregon State Hospital. Witnesses included administrators, workers, a resident, a former resident, a family member, the state's lawyer and a panel of advocates including Beckie Child from Mental Health America of Oregon, Chris Bouneff from NAMI and me. Our panel recommended three things that the state should do:
- Agree to a court-enforceable agreement to fix OSH.
- Stop all efforts to build a new state hospital in Junction City.
- Reform how people go into the hospital and get out, particularly from the criminal courts.
We pointed out that we cannot afford the money to run a new hospital (about $220 million per year) and have not been able to fix OSH on our own. We said that Oregon must learn how to use precious state hospital beds more effectively and stop asking administrators and staff to be both a hospital and a prison (two incompatible tasks).
I testified that I wanted to be hopeful that Oregon could fix OSH without outside oversight, but experience told us otherwise. I noted that DRO has sued OSH five times since 1992 in order to force improvements, but the problems don't go away.
Committee Chair Carolyn Tomei asked me to send her a written summary of those cases. I did, and now I'm sharing it with you.
Charles B. vs. Concannon: A Class Action filed in 1992 on behalf of forensic patients and patients with developmental disabilities. A Settlement Agreement was reached in 1994 which required that all patients have an individual treatment plan, a baseline assessment, a comprehensive assessment, appropriate referrals, education programs, psychosocial rehabilitation, sex offender treatment, and vocational services. Staff were to receive 80 hours of core curriculum training. Professional staffing levels were to be adequate, movement restriction and seclusion & restraint policies were to be changed, and patients with cognitive disabilities were to be assessed and placed in appropriate alternative settings.
Miranda B. vs. Kulongoski: A Class Action filed in 2000 on behalf of civilly committed patients in Oregon’s state hospitals. A Settlement Agreement was reached in 2004 which required DHS to develop 75 new licensed placements and/or supported housing, discharge at least 31 class members, begin discharge planning upon hospital admission, refer any patient who was not placed within 90 of being ready-to-place to an Extended Care Management Unit for assistance in placing, develop a fund to assist with exceptional barriers to placement which would start with $1,500,000, and develop a process to monitor vacancies in community facilities.
Bartow and Oregon Advocacy Center vs. DHS: A Wrongful Death action filed in 2002 on behalf of a patient who died during a take-down and an unsafe conditions claim on behalf of all OSH patients. The case was settled in 2004 for $200,000 in damages plus an agreement to place defibrillators on wards and update restraint training to include information on positional asphyxia and de-escalation techniques.
Oregon Advocacy Center vs. Mink: A Class Action filed in 2002 on behalf of defendants who had been found unable to aid and assist in defense of criminal charges who languished in local jails awaiting transfer to OSH. Following trial and appeal, OSH was ordered to admit defendants from jail who are found unable to aid and assist in their defense within seven days of such finding.
Harmon vs. Fickle: 2004 Class Action on behalf of forensic patients at OSH. A Settlement Agreement was reached in 2006 that required OSH to hire 30 new professional staff, DHS to hire 4 new community placement developers, OSH to increase the staff to patient ratio from under 1.10 to 1.82, and DHS to create 71 new community placements (at least 30 being intensive case management slots) in addition to 128 planned placements for forensic patients.
May 14, 2010
Have you had a good or bad experience with a summer program serving your special education child?
A question that comes up at this time of year for many parents of special education students is: are there any good summer programs for my child?
We hear from parents who are able and willing to pay, but can't find a good summer program that meets their child's special needs. We also hear from parents who are owed compensatory education and are looking for something positive for their child during the summer.
Please add a comment to this blog post by clicking on the blue add comment button below and share the following information with us and other parents:
- The type of program
- Your child's age & disability
- Whether your child's experience was good or bad
- The name, location & cost of the program
- Dates & hours that the program runs
(For example, is it 2 hours/day for 3 weeks in August or 5 days/week from 8a-2p all summer?)
How to add a comment
Please register on our website in order to add a comment to this blog post. You will be asked to enter the following information in order to complete your registration:
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Enter a user name. No spaces or special characters. User names and passwords are case sensitive, so make sure the caps lock key isn't on. This is the name you will use to log in on the DRO website.
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A URL will be generated and e-mailed to you; follow the link to reach a page where you can change your password and complete the registration process.
Then return to this blog post and click on the blue add comment button.
If you would prefer to submit your comments by e-mail we will add your comments anonymously. Please click here and enter Summer Programs for Special Education Students in the subject line of the contact form.
If we receive a large response, we will look into developing the information into a resource that contains updated and relevant information about summer programs for special education students.
We hope to hear from a lot of you! Thanks for your help!
May 11, 2010
Vote on May 18 and taste the freedom.
It’s voting season here in Oregon, the vote by mail state. Ballots must be received by May 18 in order to be counted.
DRO encourages all Oregonians – and especially Oregonians with disabilities – to fully participate in this election and in our governmental systems. Voting is a precious right for all citizens and a particularly hard-won right for people with disabilities.
To help make voting easier, DRO works with the League of Women Voters and other groups to produce a Nonpartisan Easy Voting Guide for most elections.
Why should you vote? Because elected officials make important decisions about how the government collects and spends money. Medicare, Medicaid, Social Security, Vocational Rehabilitation, Community Mental Health Services, Developmental Disability Services, Senior and Disabled Services, Schools, Police, Courts are all funded by the government. This is your chance to have a say in how they operate.
How should you vote? That, of course, is up to you. Some people vote for candidates who they think will help them the most. Some people vote based on principles that might not help them personally. Some think government can effectively address social problems; some disagree. But in order to have your voice heard, you must vote.
If you are a person who has been denied the right to vote by inaccessible voting sites, by family members or facility operators who think you should not be participate, by lack of transportation, or by lack of understandable or readable voting materials, you may particularly enjoy filling out your ballot. There is nothing like a taste of freedom.
Oregon’s Secretary of State Brown predicted today that only 37% of registered voters will cast a ballot in this election. Maybe Oregonians with disabilities should be reminding their friends and neighbors “how sweet it is” to vote.
Apr 04, 2010
In blaming the victim of police shooting for enjoying civil rights, Oregonian columnist Jack Hart is fighting the last war. Our challenge now is to realize the opportunities in health care reform to build a new community mental health system.
In today's Oregonian, former managing editor Jack Hart comments about the recent police shooting of Jack Collins by Portland police. He concludes his article by puting himself in the position of the armed police officer and asks his readers to do the same. He says he knows what he would do if he were in Officer Walters’ place. Hart does not ask his reader to put themselves in Mr. Collins’ shoes. Since he has spent most of his article dehumanizing Collins as one of those deranged alcoholic, drug addicted, mentally ill creatures who defecate in our parks, scare our children and threaten our enjoyment of life, it is not surprising that he would find him alien.
To Mr. Hart, Jack Collins is a nuisance. He asks us not to blame the police but to blame the homeless and those who would allow them to experience choice and civil rights. He does not blame Oregonians who refuse to pay taxes to support adequate community mental health services. He does not blame Oregonians who fight the placement of group homes and halfway houses in their neighborhoods. He does not blame state leaders who push money into building huge new state institutions (and state jobs) when mental health professionals know that strong investment in local services and housing can head off the type of tragedy that occurred in Hoyt Arboretum.
In sum, Mr. Hart chooses the traditional route: blame the victim. I’d suggest another approach. With the coming of health care reform, we must transform our mental health system with a surge of funds into the community. We must not turn away from the data that shows that 20% of Americans experience a serious mental health disorder every year and that the devastating social cost of substance abuse is not limited to men who toilet in the park.
I will use this moment to make a bold statement. The public mental health system should be primarily designed to treat mental illness and chemical dependency. It should provide treatment, education, housing, employment opportunities and social supports to allow people to have lives in recovery. It should not be designed to create public employment opportunities, placate local public officials, reinforce social prejudices and enhance electoral popularity. Although, the popularity part might just work out if effective community services were ever put in place.
Let’s stop the old thinking and politics as usual and take advantage of this unique moment in history to make health care reform work for our common good. Transformation, not retrenchment!
Mar 25, 2010
CLASS, the health care reform bill's little-known long-term care insurance option, could easily be mistaken for just another (y-a-w-n) government program. Yet Vice President Biden is excited enough to have called it “a big f-ing deal.” Read on to find out why I think it's pretty darn exciting, too.
As I mentioned in my last blog entry, the health care reform bill signed by President Obama includes something called Community Living Assistance Services and Supports (CLASS). CLASS is a voluntary, self-funded insurance program for long-term care services. People who are working will be able to pay into a fund that will provide ongoing cash benefits should they lose their ability to perform multiple activities of daily living. A person who receives these benefits gets to decide which nonmedical services and supports he or she needs to maintain independence at home or in another residential setting.
Why do we need CLASS?
We’re not getting any younger. Long-term supports and services are expensive and most of us don’t have insurance to cover them. Medicare and most private insurance only pay for a short period of long-term care. Those who need long-term care often must spend all of their assets until they are eligible for Medicaid (that is, until they are officially poor).
Today, about five million Americans under age 65 who live in the community have long-term care needs. More than 70,000 workers with severe disabilities need daily assistance to maintain their jobs. About 65 percent of people over 65 will need some amount of long-term care services in their homes. There are now one-and-a-half million Americans in nursing homes, and about nine million seniors who need assistance with activities of daily living. These numbers are all on the rise.
How does CLASS work?
Anyone who is working can choose to enroll or opt out. Those who participate pay a monthly premium. You must pay premiums for five years and work for three years in order to qualify for benefits. If you come to need help with activities of daily living you will be assessed and, if eligible, begin receiving benefits. The amount of the benefits depends on your level of need. CLASS anticipates that the average case benefit will be about $75 per day. Counseling, coordination and advocacy services to assure receipt of high-quality support services will also be available.
Does CLASS respect disability rights?
Absolutely. CLASS is designed to support choice and independence. Participation is voluntary. Benefits may be used as the person sees fit to support and maintain community living (home modifications, assistive technology, accessible transportation, homemaker services, respite care, personal assistance services, home care aides, nursing support, etc). They may even be used to help a person with disabilities stay on the job. For those with greater needs, benefits can also be used to offset the costs of assisted living and nursing home care.
How can the government afford this program?
All CLASS benefits and administrative costs come from premiums, not taxpayer money. To assure this, the law requires that premiums be set at a level that actuaries certify as self-sustaining. In addition, CLASS will save public money by reducing Medicaid costs. Allowing people to hire their own help and make their own choices lowers the need for expensive, publicly-funded nursing home beds.
So? (And what about that Keep Rockin' reference in the title?)
As a member of the Baby Boom generation, Biden's language does not shock me. Nor (as is likely true of many Boomers) have I fully embraced fact that old age approacheth. I've never bought long-term care insurance because it's expensive, it has terms and limitations that are hard to evaluate, and -- to be honest -- I simply don't like thinking about it.
But now, like Joe Biden, I am excited. With a touch of this CLASS, my fellow Boomers and I could have the chance to keep on "rockin' in the free world."
Mar 22, 2010
Health Care Reform brings promise of more freedom for individuals with disabilities. Here's a summary.
Last night, the U.S. House of Representatives passed health care reform legislation. While I understand the political divide surrounding this bill, I am convinced that it will prove to be the most important step forward for individuals with disabilities since passage of the ADA. It may, in fact, be even more important in freeing our people to “live in the world.”
The Status Quo
People with disabilities who are ready and able to work have an unemployment rate that is consistently twice as high as the rate for the non-disabled. It is not only harder to find a job, but it’s harder to keep one, leaving employer-provided health insurance always at risk. And when changing jobs, denial of coverage due to “pre-existing condition” exclusions becomes a major obstacle to good health and job readiness for anyone who depends upon health services.
For parents of children with disabilities, maintaining health insurance without risking new pre-existing condition limitations causes parents to stay in jobs rather than follow new opportunities. And yet, even in those jobs, parents find themselves paying more and more of the cost of insurance, even to the point where they are choosing between health care coverage and daily necessities of life.
For those on Medicare, inadequate reimbursement rates have made it almost impossible for some people to find a provider. The infamous “donut hole” continues to put the cost of prescriptions out of reach for many. And because of rising health costs, those of low-to-moderate income are frozen out of the market, causing them to get unavoidable health services at the emergency room -- at high costs that often lead to unpaid bills and bankruptcies.
What the House did yesterday finally starts a reasonable approach to addressing these critical needs. Here’s what it does:
- Expands coverage to 32 million uninsured Americans.
- Coverage for uninsured and self-employed will be available for purchase insurance through state-based exchanges with subsidies for those with income up to 400 percent of the federal poverty level ($22,050 for a family of four).
- Separate exchanges for small businesses to purchase coverage will be available beginning in 2014.
- Closes the Medicare prescription drug "donut hole" by 2020. Those in the donut hole by 2010 will receive a $250 rebate.
- Beginning in 2011, those in the donut hole will receive a 50 percent discount on brand name drugs.
- Expands Medicaid to include 133 percent of federal poverty level
- Requires states to expand Medicaid to include childless adults starting in 2014.
- The Federal Government will pay 100 percent of costs for covering newly eligible individuals through 2016.
- Undocumented immigrants are not eligible for Medicaid.
- Six months after enactment, insurance companies can no longer deny children coverage based on preexisting conditions.
- Starting in 2014, insurance companies cannot deny coverage to anyone with a preexisting condition.
- Insurance companies must allow children to stay on their parent's insurance plans through age 26.
- Segregates private insurance premium funds from taxpayer funds. Individuals will have to pay for abortion coverage by making two separate payments. Private funds will have to be kept in a separate account from federal and taxpayer funds.
- No health care plan will be required to offer abortion coverage. States may pass legislation choosing to opt out of offering abortion coverage through the exchange.
- An executive order states that no federal funds can be used to pay for abortions except in the case of rape, incest or health of the mother.
- In 2014, everyone must purchase health insurance or face a $695 annual fine. There are some exceptions for low-income people.
- Employers with more than 50 employees must provide health insurance or pay a fine of $2,000 per worker each year if any worker receives federal subsidies to purchase health insurance.
- Undocumented immigrants will not be allowed to buy health insurance in the exchanges -- even if they pay completely with their own money.
- According to federal estimates, the bill will reduce the deficit by $143 billion over the first 10 years and by $1.2 billion dollars in the second ten years.
- Starting in 2012, the Medicare Payroll Tax will be expanded to include unearned income. That will be a 3.8 percent tax on investment income for families making more than $250,000 per year ($200,000 for individuals).
- Excise Tax -- Beginning in 2018, insurance companies will pay a 40 percent excise tax on so-called "Cadillac" high-end insurance plans worth over $27,500 for families ($10,200 for individuals). Dental and vision plans are exempt and will not be counted in the total cost of a family's plan.
- Tanning Tax -- 10 percent excise tax on indoor tanning
services. (No kidding!)
The bill also includes the Community Living Assistance Services and Supports Act "CLASS ACT" that the national disability community has pushed for years. It establishes a national voluntary insurance program for purchasing community living assistance services and supports. I will write more about it in a separate post.
This legislation is filled with compromises which reflect our nation's diverse interests and concerns. For those who feel that their financial and political interests are put at risk, the battle is far from over. We will see legal and media attacks for months and years to come. But for now, the disability community has much to celebrate.
Feb 27, 2010
Oregon has now closed all of its DD institutions. At the Capitol, this remarkable achievement was celebrated with joy and modesty.
It was Wednesday and I knew that I had to be at the state Capitol before 9:00 am. At about that time, I was supposed to give a half hour presentation to the House Human Services Committee about my organization, Disability Rights Oregon. I also had the task of bringing three boxes of materials to place on a table in the Capitol Galleria where folks could look at them. These were booklets about special education law, guardianship law, rules governing seclusion and restraint of school children and a stack of our brochures. It was, you see, an event entitled: Developmental Disabilities Celebration - A Decade of Accomplishments.
I got to Salem with plenty of time to spare. But rather than unpack the boxes, I decided to head into the Capitol to do some last minute preparation. I sat at the back of the hearing room while State Epidemiologist Mel Kohn gave a PowerPoint presentation about the state's smoking cessation program. While sitting there, I decided to talk about the ambitious goal of disability rights to reconfigure the world so that everyone can participate in it. I chose three phrases as vehicles for this idea: 1. "Nothing about me without me." 2. "Want, get, keep." and 3. "Opportunity, Access and Choice." The half hour flew by.
Then, I needed to get back to the car, take out the dolly, and wheel the three boxes of materials into the Capitol. As I did this, I reflected on this aspect of my employment: moving boxes while dressed in a business suit to deliver information to a crowd of developmentally disabled individuals in a state capitol. I don't recall seeing that in the job announcement back in 1986.
While I was setting out the booklets, a guy who advocates at the legislature for seniors and people with traumatic brain injury asked if I would meet with him to chat. I agreed because someone was able to watch my table and the speeches and awards that always accompany events like this would not happen until noon. So I went down to the lunch room to talk to Bill.
We started with small talk and were just about to launch into the topic at hand when over to our table comes Ralph, a union lobbyist. Ralph is a very outgoing guy with one of those short social distances. He put his face about six inches from mine and said: "Did you know Bill was an All-American college baseball player?" The next twenty minutes were given over to teasing out of a very modest Bill that he was indeed an All-American in 1957 at USC, hitting over .360 for his senior year and playing with and for some of the greats of the college game. Ralph said: "I love this. You can take all this lobbying stuff and chuck it. I just love this stuff." Turns out Ralph had a brother who was a pretty good ball player in his day. Modest, too. Just like Bill.
Bill and I finally got down to our conversation about various disability groups working together toward common goals, and then I went off to the noon event. The big accomplishments noted in the title of this event were that Fairview Training Center has been closed for 10 years and Oregon is now the only state that does not have a developmental disability facility or send its citizen to out-of-state facilities. James Toews and Marylee Fay from the Department of Human Services were among those honored. All awards are richly deserved. A former resident of Fairview spoke as did a state legislator and the head of DHS, Bruce Goldberg.
This event happened in a basement hearing room at the Capitol. There are no windows. Lighting is all florescent. For this event, there were not enough chairs and so some folks sat on tables or stood. There were no refreshments. The majority of attendees were individuals with developmental disabilities, family members and providers. The things we celebrated have made a profound difference in the lives of people who have suffered great hardships. Many people have contributed to these achievements and many of them have demonstrated remarkable skill, patience and dedication to the task.
As I stood and watched, I thought back to Bill and his achievements on the baseball field. I thought about his modesty. I thought about the people in a basement room who have brought so much heart, brain and energy to their modest but compelling task. To quote Ralph: I just love this stuff.
Feb 18, 2010
How one community's grieving is another community's threat.
I was at the Maranatha Church in NE Portland last night to see Jesse Jackson and hear what he had to say about the recent killing of Aaron Campbell. I walked in wearing a business suit, snagged the last name tag, and headed to the front area that was reserved for “community leaders.”
As a representative of DRO, I watched the press conference in a side room and then had a front pew seat for the speeches. Sitting next to me was the family of Mr. Campbell. Behind me was a standing room only audience.
Security was light. The mood was a combination of reverence, excitement and solidarity. The music was great. The church leaders provided gentle and amused direction for those who parked their cars in the wrong place or might be tempted to bring in some food. It felt like a welcoming community.
Meanwhile, I didn’t forget about the politics and I know that Jesse didn’t either. There were no elected officials in the audience. Today’s papers made it clear why: Jesse’s most controversial-sounding words were captured in the headlines. This was no mistake. The press and Jackson know the rules of the game. Attention needs to be gotten and this is how you get it.
In the church though, the topic was not controversy. It was community. Reverend Jackson was surrounded on the stage by his fellow senior ministers. They clearly enjoyed and appreciated each other. Jackson seemed remarkably cool and serene during most of the proceedings. That is until an elderly preacher followed Jackson’s speech with an explosion of passionate rhetoric that electrified the crowd and put an animated smile on Jesse’s face.
When Jackson spoke to the press and to the crowd, his first words were to offer comfort and support to the Campbell family. He then spoke about the killing and also about the general condition of black Oregonians. He held a recently issued report, The State of Black Oregon, which documents, in Jackson’s words, that African American Oregonians are “free but not equal.” The statistics in the report bear him out.
Jesse spoke about the killing mainly in the context of respect and dignity. He didn’t speak about whether the shooting was justified but dwelled on reports that the body was left on the ground, in handcuffs for a half hour while dogs sniffed it. He spoke to the desire of every person in the audience to be treated like a human being.
I heard Jackson extol the virtues of compassion, peace, strength in adversity and perseverance. He did not agitate. He supported a grieving community and to suggested positive action for change. He asked individuals to demand justice and an “even playing field,” and also urged people to take responsibility for themselves and their community.
Jackson suggested a path for action: the community, he said, should demand at the officer who killed Mr. Campbell be kept off the job until the police internal investigation was complete. This is hardly the stuff of a firebrand zealot.
But check out the response from Portland Police Sgt. Scott Westerman, president of the Portland Police Association. He said: "… for the Rev. Jesse Jackson to come in last night and to divide the community again and to vilify the officer is a disgrace. I think Rev. Jackson is either ill-informed or has an alternate agenda."
Westerman’s response sums up the problem in this city. What I saw last night was a community coming together with the guidance of respected leaders to grieve and formulate a peaceful and constructive plan of action. What our official police spokesman saw was an outside agitator.
Westerman says that the community should leave the shooter alone and, instead, ask for change in police policies. Westerman’s belated call for policy changes may have merit, but it is buried under yet another insult to the black community. The people I was with last night know who they are and know what their experience is. They also know who is on their side.
Feb 09, 2010
Ds and Rs square off on bill that would extend workers compensation coverage to personal support workers.
Good morning! It’s 8:30 am and we’re back in the House Human Services Committee.
We’ve already heard consideration of bills affecting the sharing of mental health and physical health records among providers and a proposed traumatic brain injury commission. Now, James Toews and Richard Harris from the state Department of Human Services are testifying about the financial cost of implementing HB 3618. This bill would provide workers compensation coverage to personal support workers who serve individuals with developmental disabilities (DD) and with mental illness (MI). Representative Freeman is leading the charge by Republicans who are concerned about the cost of enacting the bill.
Toews testifies that this bill would add about 8,000 new workers to WC coverage who serve about 10,000 individuals. Democratic lawmakers ask if home care is less expensive than institutional care. (Yes) They also ask why this group of workers isn’t covered by the Home Care Commission that provides WC to home care workers for seniors and people with physical disabilities. Toews responds that the DD brokerage system was put together as a result of the Staley law suit settlement which occurred after enactment of the state ballot measure that created the Home Care Commission. The duties of workers who are mandated by Staley have different duties than traditional home care workers.
Rep. Olson is concerned about public access to the names of registered home care workers. Toews says that names are controlled by existing public records law which means that most names must be released to the public. Olson asks if the state does a criminal records check on anyone who asks for worker names. Toews says no. Olson asks if the state feels vulnerable as a result. Toews says it is a matter of general concern. Rep. Dembrow says that the question of problems with Oregon’s public records law is a matter that goes beyond this bill. He asks Toews if he is aware of a person being victimized as a result of having his or her name released. Toews is unaware of such an instance.
Rep. Olson asks how this bill will interact with HB 2442 from last session. This bill beefed up Oregon’s protective services laws and requires exclusion of workers with certain offenses on their criminal record. Toews says more people will be excluded under the combined effects of these bills.
Doug Riggs from Oregon Alliance of Children’s Programs testifies. His providers will suffer a cost impact from this bill and they are already suffering financially. He says the legislature must increase reimbursement for his programs (present funding only covers 60% of cost) if they are to survive. OACP does not oppose the bill’s intent but does not want to absorb additional unfunded requirements. Rep. Tomei says this is a matter for the Ways and Means Committee. Rep. Freeman says that while the Human Services Committee is a policy committee and not a fiscal committee, it should still be concerned about costs.
Next up is a representative from SAIF, the workers compensation provider who is asked about costs of providing coverage to the new population. Representative Maurer takes the lead in questioning about how costs can be controlled. Maurer notes that the state budget is $182 million in the hole according to an upcoming state revenue report. He is concerned about “creating a monster” that will cost the state more than anticipated. Maurer notes the difficulty of assessing claims that occur in family homes when family members are providing services. How, he asks, does SAIF determine when an injury happens on the job or off the job?
Questions continue about who bears the additional costs. Toews notes that provider agencies will not bear the fiscal risk of worker comp claims. Rep. Freeman asks if a disabled child could end up with less services if costs are taken out of money available for those services. The answer is yes.
The committee adjourns for ten minutes to review the bill’s fiscal impact statement. I go plug my meter. When I come back, the committee approves the bill on a party-line vote. The bill will now go to the Ways and Means Committee which will determine if the state can afford to pay for it.
Feb 05, 2010
Testimony is heard on two important bills affecting people with disabilities.
I'm sitting in the House Human Services Committee where the committee just heard testimony on a bill that I can't easily explain but have worked on for the last month. If House Bill 3618 is passed, people who are hired by folks with developmental disabilities or mental illness to provide assistance in the home or community would be registered with the Home Care Commission, receive workers compensation coverage and be allowed to vote to unionize.
My job in the hearing was to explain the latest set of amendments to the bill. I tried to make is as simple as possible but legislative eyes were glazing over. The upshot seemed to be that the Democrats like it and the Republicans don't. It looks like the biggest issue will be the cost of providing workers compensation coverage to the workers.
The committee is now hearing a bill that would set up the Traumatic Brain Injury Strategic Partnership Advisory Council. Senator Morrisette and Sherry Stock from the Brain Injury Association of Oregon are leading the testimony. Additional testimony from General Mike Caldwell of the Oregon Military Department centers on the epidemic of brain injury that has been experienced by service members coming back from Iraq and Afghanistan. General Caldwell notes that early identification and treatment is essential. He adds that the military has ignored the problem of TBI until recently. Things are now changing but the number of affected veterans has overwhelmed VA services.
HB 3692 creates information and referral services and an advisory committee that reaches across all departments of state government. Sherry notes that 80% of homeless individuals have TBI, particularly homeless veterans. Inmates in Oregon prisons are also affected in large numbers. About half of those with TBI acquire their injury through auto accidents. This is why the Advisory Council would be funded from fees charged on traffic violations.
Feb 04, 2010
Are annual legislative sessions all that they're cracked up to be?
The legislature is back in action, meeting for its second "supplemental session." Oregon, as we know, has a biennial legislature: it officially meets every two years. Legislative leaders feel that the state would be better served if we have annual sessions. To test this belief, a short, 2008 session was conducted to handle matters that needed immediate action. Most folks thought it was successful. We are now in the middle of the second trial run.
My initial hit is: so far, not so good. If either Ballot Measure 66 or 67 had failed, this session would have been dedicated to cutting school and human services budgets. Having dodged that bullet, much of the effort is directed to providing relief to those badly hurt by the continuing recession and to pushing through legislation that does not appear to need immediate action, has not had thorough stakeholder participation in its development and are products of insider interests.
Other than actions being taken to provide economic relief, much of this session seems to be given over to paying off political debts and moving pet projects of powerful interests. Legislators seem to be willing to look the other way in this rush to judgment while a large number of bills with emergency clauses (this means they become law immediately upon enactment rather than waiting the usual six month period) get pushed through. Some say: "If there's a problem, we'll fix it in 2011."
I remember that the original argument in favor of annual sessions was that the legislature needed more time to carefully deliberate about important policy matters and proposed legislation. This 2010 session is proving just the opposite. I'm seeing less deliberation and more insider dealing.
Jan 25, 2010
If you are among the thousands of Oregonians who cannot fill out a paper ballot independently, there are several options still available to you. Julie Anderson, who leads Disability Rights Oregon's Voting Access Project, explains.
Yard-signs. Endless commercials. Door-to-door-canvassers. Yes, it is election time again in Oregon. Tomorrow, January 26th, is election day to vote on Ballot Measures 66 and 67. If you have not yet turned in your ballot do not mail it, because it will not arrive in time to be counted. But it is NOT too late to vote.
If you are among the thousands of Oregonians who cannot fill out a paper ballot independently, there are several options available to you.
Every county now provides your ballot in large print (18 point font), upon request. Or, if you'd like to use your computer to fill out your ballot, you can get your ballot via e-mail or on a CD. The ballots are compatible with accessibility equipment, like screen readers. Of course, you will still need to print out your ballot and return it in the official secrecy and signature envelopes provided to you by the county.
If you do not have a computer, you can go to your county elections office and use an accessible computer station to fill out your ballot. These computers can enlarge the text, read the text (at different speeds and volumes) and have a variety of devices to use, including:
- a custom keypad with large buttons
- a set of switches
- a large roller ball, and
- a joystick.
The computers have a scanner so that after you print out your ballot you can verify that it is marked correctly before you turn it in.
Every county has elections staff that have received training in providing assistance to voters with disabilities. It is best to go as early in the election cycle as possible because the last few days before an election are typically busy and there may be a longer wait.
Also, if you are someone who has difficulty understanding the ballot measures (who doesn't?), there is an Easy Voting Guide (EVG) that DRO helps create. The EVG is non-partisan and simply puts the election information into more accessible language. The EVG is available in large print or audio (CD or mp3 on-line). You can get an EVG by checking out DRO's Voting Access page or by calling Julie Anderson at 1-800-880-1931.
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