The DRO Blog
Mar 20, 2012
A recent $3M jury award begs the question: does Oregon promote disability discrimination?
Earlier this month, a Portland jury awarded nearly $3 million to a couple who claimed that they were damaged by the negligence of Legacy's Center for Maternal-Fetal Medicine. The couple, who were expecting a baby, had gone to Legacy for a prenatal test called chorionic villus sampling (CVS). CVS is supposed to determine if a fetus has a normal chromosomal profile. The test results showed that all was "normal" and yet, months later, the couple gave birth to a baby with Down syndrome. According to the Oregonian newspaper, the couple sued to recover the "estimated extra lifetime costs of caring for a child with Down syndrome."
The legal argument went like this: the couple had depended upon Legacy to perform competent testing. If they had known the fetus had Down syndrome, they would have chosen to abort (like 89% of other pregnant women who receive this information.) Having foregone abortion in reliance upon the test results, the couple had the baby and now expected a significantly greater financial burden to raise and care for their child.
For many parents of children with Down syndrome, this verdict was a slap in the face. It is bad enough that so many expectant parents choose to abort when learning that they will have a child with disabilities. But for society, a court and a jury to award damages to a couple who have given birth to a child who is entitled to the same love, support and opportunity to reach his or her potential as any other person, seems insulting and nonsensical.
Viewed from a public policy perspective, this case says that a parent who chooses not to have prenatal screening or chooses to have a child with Down syndrome is expected to carry most of the additional financial load of raising the child with, in certain cases, meager public assistance offered by the state of Oregon. A parent, however, who chooses to have testing and is willing to abort upon receipt of the results, shall be held financially harmless.
Ten years ago, in a ceremony at the Oregon state capitol, Gov. John Kitzhaber apologized for the state's past policy of forcibly sterilizing people who were in state care. He was the second governor in the nation to formally recognize that this practice was wrong. (Oregon had been one of 33 states with forced sterilization laws.) Kitzhaber told a packed room of about 80 survivors and their supporters: “The time has come to apologize for misdeeds that resulted from widespread misconceptions, from ignorance and from bigotry. To those who suffered, I say the people of Oregon are sorry, and our hearts are heavy for the pain that you endured.”
At least 2,648 people were sterilized in Oregon between 1917 and 1981, under the banner of "eugenics" which sought to breed a better human race by preventing those with traits they deemed undesirable from having children. The practice targeted a broad range of people including individuals with disabilities, criminals, promiscuous girls and homosexuals.
Sterilizations were legally authorized at Fairview Training Center, then called the State Institution for the Feeble-Minded, under a law passed by the Oregon Legislature which created the State Board of Eugenics in 1923. The Board of Eugenics was abolished in 1983. That's right, less than 30 years ago.
Today, we do not summarily castrate people with Down syndrome. Our policies, instead, encourage couples to forestall these individuals' existence altogether.
I am not writing this to challenge a woman's constitutional right to control her own body. But Disability Rights Oregon is dedicated to protecting the civil and human rights of individuals with disabilities. We must ask these profound questions: Who can legitimately place a higher value on one human life over another? What assumptions does a person make when deciding that a life is inferior? What role does the government (including the courts) have in encouraging, discouraging or even just recognizing the practice of disability discrimination, particularly when life is at stake?
Governor Kitzhaber is now back in office. He has put a halt to state executions of those convicted of aggravated murder. Perhaps it's time to re-evaluate how Oregon values the lives of individuals with disabilities.
Mar 10, 2012
The world didn't stop while DRO relocated two blocks to the west.
It’s March and in Portland and that can mean sheets of cold winter rain or brilliant blue skies that say spring is tantalizingly close. Both, really: sometimes one or the other every ten minutes.
Here at DRO, we are settling into new digs. After 18 years at our former location, we moved two blocks west to the corner of Broadway and Alder in downtown Portland. Our move was prompted by the need to find less expensive rent. Like many other publicly-funded programs, budgets are strapped.
Moving is always a challenge, especially after collecting 18 years worth of, uh, junk. It can be especially interesting for a program like ours that likes to settle into older office buildings which must be thoroughly accessible for clients, staff and visitors with disabilities. I’ve joked that we should move more often just to bring more old buildings into ADA compliance.
When we signed our last lease five years ago, we had no way of knowing that the Oregon legislature would decide to hold yearly sessions and it’s 2012 session would meet in February. We didn’t know that we would be in the midst of a major lawsuit seeking to enforce the rights of individuals with intellectual and developmental disabilities who want integrated employment. We also didn’t know that a few staff members would be grappling with serious health or family issues. We did know that the lease ended on February 29, 2012, Leap Day. Back in 2007, that date sounded peaceful enough.
But we did it! The phones, computers, servers, desks, chairs, books, files, bookcases, file cabinets, printers, plants, pictures, tables, lamps, appliances, and just plain, uh, stuff, made it with hardly any disruption in service. We’ve changed our stationery, business cards, and shortened our web address. The building has installed power door openers, a new elevator and is still making modifications to suit our needs. All the boxes aren’t empty but we’re getting there.
Meanwhile, the legislative session completed its work on major reforms to health care, education and early childhood services, passed a budget that avoided additional cuts to human services and declined to pass a few bills that would have eroded the rights of Oregonians with disabilities. DRO’s casework, litigation, outreach, training, benefits planning and information/referral services have continued unabated.
This is all to say that February presented DRO with many challenges. Our incredible staff, however, rose to the occasion. Long hours, a flurry of details and a variety of major stressors have been endured and overcome. What also endures is the skill of our staff, commitment to our clients and passion for DRO’s mission.
I say it often: it is a privilege to do this important work with our incredible crew of employees, volunteers and partners. Thank you.
Jan 16, 2012
What does being a person mean?
As part of my job here at DRO, I’m sometimes asked to speak to groups about the disability rights movement and how it got started. This is a much larger topic than I want to get into right now, but since I am sitting at home because it is a federal holiday honoring the birth of Martin Luther King, Jr., it seems important to note that the idea of disability rights is inseparable from the broader quest for human rights.
MLK is honored with a national holiday because he is a hero of the nation. He was a leader of a movement that spoke and continues to speak to the very nature of human experience. What is a person? What does being a person mean? MLK asked Americans to think about those questions and answer them honestly.
MLK’s invitation is still open. Today, you can ask yourself these questions. You can ask others to think about them.
We can also think about segregation and institutionalization. What fears or desires lead someone to demand the incapacity and impotence of others? Are those urges different when applied to affordable housing, the nation’s borders or the institutions of matrimony?
Looking back to April 16, 1963, we know what MLK had to say:
All segregation statutes are unjust because segregation
distorts the soul and damages the personality. It gives the segregator a false
sense of superiority and the segregated a false sense of inferiority. Segregation … ends up relegating persons to
the status of things. Hence segregation is not only politically, economically
and sociologically unsound, it is morally wrong and awful.
Letter From A Birmingham Jail
Freedom of religion trumps protection against discrimination. The lesson? Teach and promote disability rights in your congregation.
The US Supreme Count just decided that a teacher in a religious school may not sue the school for disability-based employment discrimination.
In Hosanna-Tabor Evangelical Lutheran Church and School v. Equal Employment Opportunity Commission, a long-time teacher experienced health problems that were diagnosed as narcolepsy. The disorder caused her to take a health-related leave of absence. When her doctor determined that she was ready to return to work, the school told her that her services were no longer needed. When she threatened to sue, the school issued a formal termination for doing so, stating that her actions violated the school’s religious doctrine of working out disputes internally.
The Supreme Court applied its “ministerial exception” which says the First Amendment’s freedom of religion provisions limit legal claims against religious organizations and their personnel. The question in this case was whether the teacher, Cheryl Perich, should come within the exception. She argued that even though she had the status of a “called” teacher who had some religious duties and provided some religious instruction, most of her duties were not religious and all of her job duties were performed by other teachers who are deemed “lay” and not considered ministerial by the school. She also argued that the school’s stated reason for firing her – her failure to resolve disputes internally - was a pretext for their real reason: disability-based discrimination.
The Court, in a 9-0 decision, did not agree with Ms. Perich. The decision said that it would not create a test for deciding when a person is a “minister” and can be discriminated against without interference by the courts. It was convinced, however, that Ms. Perich did fall into this category.
Since it appears clear that Ms. Perich was the victim of disability-based discrimination, does this decision allow religions to run roughshod over people’s human rights? No.
First, the decision notes that this decision does not say that religions are exempt from the criminal law.
Second, the Court discusses a case from Oregon in which the state denied unemployment benefits to a Native American who had been fired for ingesting peyote in a religious ceremony. In that case, the Supreme Court upheld the denial because the state law was a “valid and neutral law of general applicability” that “involved government regulation of only outward physical acts.” The case of Ms. Perich, “in contrast, concerns government interference with an internal church decision that affects the faith and mission of the church itself.”
Third, Ms. Perich’s claim that the reason for her firing was pretextual, “misses the point of the ministerial exception. The purpose of the exception is not to safeguard a church’s decision to fire a minister only when it is made for a religious reason. The exception instead ensures that the authority to select and control who will minister to the faithful—a matter “strictly ecclesiastical.”
Finally, the opinion wraps up by stating that it holds only that the ministerial exception bars a suit “brought on behalf of a minister, challenging her church’s decision to fire her.” It concludes: “We express no view on whether the exception bars other types of suits, including actions by employees alleging breach of contract or tortious conduct by their religious employers.”
In an interesting concurring opinion, jointly penned by a Catholic and a Jewish justice, it is noted that many religions do not have “ministers” and that many religious figures are not formally “ordained” or appointed. What matters to them is not, for example, Ms. Perich’s title, but whether she “played an important role as an instrument of her church’s religious message and as a leader of its worship activities.” If so, a religious body has the right to decide for itself whether an employee is religiously qualified to remain in office.
The lesson for disability rights advocates who are affiliated with religious groups is to become active within your congregation and religious organization to teach and promote the tenants of disability rights. Justice is not a matter for only the secular courts.
Dec 15, 2011
I'm not here for the politics but to help get the nuts and bolts of our work done.
I'm in Washington, DC, sitting in a meeting of the Organizational Development & Capacity Committee (ODC) of the National Disability Rights Network (NDRN). Yes, that's a long name and , yes, I'm paying attention.
NDRN is the national trade organization for Protection and Advocacy (P&A) organizations like DRO. Federal dollars pay for P&A services in 57 states, territories and reservations. Those dollars also pay for training and support services that are primarily provided by NDRN. The committee I'm on provides advice and input to NDRN on the type and content of training that P&As need.
I'm always impressed by the knowledge, skill and experience that the staff at NDRN and my fellow P&A people bring to the table. And did I mention passion and dedication? This is a group of people who have lived and breathed disability rights in their communities for years. Many have disabilities or are family members. They are tied into networks of other advocates across the nation.
At this meeting, we've talked about how to use a newly developed P&A standards manual, how to implement training needs, how to help information and referral specialists, cultivating middle managers, training on fundraising and communication, and how to develop new leadership. It may sound bureaucratic but this is stuff that is important for healthy, effective advocacy organizations.
For DRO to be effective in the legislature, in court, in state and federal agencies, with the press, volunteers, customers and other groups and organizations, we must have experience, training, skill and leadership development. And as a nonprofit organization we must be able stewards of our finances and provide a supportive and efficient working environment. It's great to know that NDRN is here to support us in getting it done.
Dec 11, 2011
Our December appeal letter.
Dear Friend of DRO:
Carlos, the 6 year-old son of non-English speaking parents in rural Oregon, has autism. After a promising start in public school, he began to cry and resist when it was time to leave for school in the morning. When his parents noted facial bruising and a large increase in the frequency and intensity of Carlos' self-biting behaviors, they contacted his school. The school did not respond.
A friend referred them to DRO. Our first step was to review Carlos' school records. We discovered that Carlos' fear of school began after the school adopted a "zero-tolerance" behavior approach. From that point forward, whenever Carlos was considered to be acting inappropriately, he was immediately removed from class, often physically.
His file revealed that during the past month, Carlos had been locked in a room for at least 70 minutes and had been repeatedly restrained for up to 30 minutes per day. Five incident reports had been sent to his parents, all in English, which they could not understand. Nothing else was being done to prevent the behavior.
DRO entered into negotiations on behalf of Carlos and his parents. Their school district agreed to create a behavior plan for Carlos and provide school staff with extensive training by a skilled psychologist. The zero-tolerance policy was altered so that only unsafe touching triggered class removal, and then only for a 2-3 minute timeout.
The number and duration of Carlos' seclusions were cut in half within two months. The frequency and intensity of his self-biting were greatly reduced and restraints were no longer necessary. Carlos is now progressing with his education.
Because DRO had seen many cases like Carlos', we worked with the Oregon Department of Education to create administrative rules to regulate the use of seclusion and restraint of school students. But complaints from parents continued to pour in. We then conducted a survey of Oregon public schools and found that the rules were being regularly ignored. Our findings were included in a publication, Keep Schools Safe for Everyone that is available on our web site.
DRO then drafted a bill for the 2011 legislative session to regulate the use of seclusion and restraint to prevent violence before it happened, require parental notification of incidents and provide a mechanism for complaint resolution. The bill was sponsored by Representative Gelser, Senator Edwards and six other legislators. On August 2, 2011, Governor Kitzhaber signed House Bill 2939 into law.
This story is just one example of the broad-based advocacy that DRO provides for Oregonians with disabilities. We help thousands of people every year with our information, referral, training and publications. Hundreds more receive direct legal representation and the investigations that are necessary to develop their cases. DRO conducts outreach and monitoring at institutions such as Oregon State Hospital, state correctional facilities and sheltered workshops. And, with your help, we advocate for safety, rights and improved services in state and local agencies and the legislature.
In this weak economy, however, DRO is struggling for resources. We rely primarily upon federal funding that is presently under attack. DRO receives no state general funds. Our modest support from local foundations has been cut drastically. This year, in response, we have closed our two small rural offices and are moving to smaller space in Portland. Our staff took an average of five furlough days and salaries are frozen. Since 2006, we have gone from 28.75 staff positions to 25.5 while demand for our services increased.
This is why we need your help. When you contribute to DRO, you help:
- Keep children with disabilities in school and safe
- Keep adults with disabilities employed and in housing
- Keep supports and services for families and caregivers
- Avoid unnecessary institutionalization
- Enforce voting rights
- Assure access to health care and assistive equipment
- Make buildings, streets, housing, services and transportation usable by everyone
- Fight discrimination and victimization
We at DRO believe that disability rights benefit everyone in our society. Clearing away barriers that prevent a person from being independent, productive and engaged with her or his family and community prevents dependency, isolation and hopelessness. It's not just Carlos and his family who benefit by education, vocational training and by avoiding trauma. Greater skills and independence translate into greater productivity and less need for public intervention.
Please join us in our quest for an Oregon that promoted independence, safety and dignity for all citizens. Your donation in these difficult fiscal times will make a tremendous difference in our ability to make a difference. Thank you.
DRO is a
corporation. All donations
deductible. You can donate here on our web site or send donations to:
Disability Rights Oregon
620 SW Fifth Ave., Ste 500
Portland, OR 97204
Nov 12, 2011
Events at Penn State sound all too familiar.
Penn State University is a huge institution. Its total enrollment hovers just below 100,000 students. It hires almost 9000 instructors. Thousands of others rely upon PSU for employment or economic livelihood through providing goods and services to the university, students and faculty. It is widely beloved by students, alumni and community members. It is, in many ways, a world unto itself.
In the New York Times this morning, I read an article about other types of institutions: those serving individuals with intellectual and developmental disabilities. It seems that the State of New York officially guarantees “whistleblowers,” that is, staff who report abuse or neglect, with anonymity. In practice, however, the names of those who reported have been routinely turned over to their employers. The employees who followed state law and reported abuse where generally disciplined for not first going up “the chain of command” in the institution. State officials claim that these practices, having been revealed, will now stop and whistleblowers will receive protection. We shall see.
Many people have wondered why a college president, a revered football coach and many other highly-regarded individuals would allow accusations of child rape to go uninvestigated at PSU. While I don’t know the answer, I think it has something to do with the nature of institutions. Like those working at New York’s disability institutions, a person’s responsibility appears to end when he or she reports an incident up the “chain of command.” By doing so, the institution can regulate itself within its own rules. Questions of employment relationships, union contract obligations, statistical reporting and organizational reputation can be effectively managed. Outside interference, be it through mandatory abuse reporting laws, whistleblower protections, media investigation or licensing and regulatory activity, is viewed as something else to be internally managed, not welcomed.
DRO, along with our 56 sister agencies across America, have authority to enter any facility providing care or treatment to individuals with disabilities in order to investigate complaints of abuse or neglect. Many facilities fight to keep their doors closed to avoid scrutiny. Like other P&As, DRO has had to go to federal court to gain entry to facilities so we could investigate reports of physical and sexual abuse. During the past two years, the Social Security Administration has provided funding for P&As to visit facilities and providers who act as representative payees for their clients. This initiative was prompted by confirmed reports of exploitation and abuse by some payees who operate institutions.
Oregon is poised to build another large, centralized mental institution in Junction City. Long term care providers have flexed their muscle in the legislature to be “carved out” of health transformation in order to maintain an economically privileged position in the state budget. There are clearly forces that promote, desire and love institutions. Discussions about how to overcome the incentives to place institutional interests above those they are supposed to serve are much quieter. Like at PSU, they can go up the chain of command and never be heard of again.
Oct 02, 2011
When DRO enforces legal and human rights for individuals, we are helping to preserve American freedoms. This why we need governmental support as well as your donations. Just ask an old French guy.
In the mid-1800s a French aristocrat, Alexis de Tocqueville, traveled across America in order to study the largest democracy the world had known. He produced a two volume collection of his observations and analysis, Democracy in America, which is still a primary source for keen insights into the American character and political system. As an aristocrat who held an inherently privileged place in French society, de Tocqueville was sensitive to the potential dangers of majority rule. In fact, one section of the first volume is entitled “Tyranny of the Majority," a term he is credited with coining.
In doing so, de Tocqueville put his finger on a core tension in the American consciousness: faith in, and fear of, democracy. In today’s politically polarized environment, one side’s profession of majority will is viewed by the other side as oppression. The proper uses of collective action – say, going to war or bringing down the cost of health care – are open to ongoing, fierce debate. As fantastic amounts of time, energy and money are marshaled to gain political control through democratic elections, adversaries use the de Tocqueville template to warn voters of the dangers of majority rule; rule, that is, by a majority led by the other side.
Civil rights laws and the ability to enforce those laws are one way to push back against majority oppression. Democracy in America cites the essential role that our legal system plays in protecting individual and minority group rights against the tyranny of the majority. From the Bill of Rights to the ADA and Olmstead, there must be counter-balance in order for all Americans to preserve their freedoms.
But legal protections are not enough. In order to work, they must be enforceable. Organizations like DRO and legal aid receive public money to provide meaningful protection for individuals who could not otherwise enforce their rights. Yes, ensuring rights enforcement protects poor people and people with disabilities. It also protects our country and our system of government.
Both DRO and Oregon’s legal aid programs are faced with ongoing cuts in federal funding. DRO has recently closed its two rural offices and cut 1.5 positions. Legal aid programs are laying off many attorneys and other staff. Some in the political debate may think legal services for disadvantaged people are not important or somehow impinge on others’ freedoms. This would be a misreading of the American way of life. Ask de Tocqueville.
Sep 26, 2011
By Guest Columnist Bob Joondeph, Executive Director of Disability Rights Oregon
Published: Sunday, September 25, 2011
The insanity defense has been part of Anglo-American law for centuries. An English legal treatise from 1581 noted that if "a madman or a natural fool, or a lunatic in the time of his lunacy [commits a crime] this is no felonious act for they cannot be said to have any understanding will." While the diagnosis and treatment of mental illness has changed tremendously over the years, our sense of justice has consistently recognized that punishing a person for actions she cannot control is wrong.
When a defendant is found "guilty except for insanity" in Oregon, she is usually committed to the state hospital for custody, care and treatment for a period of time that is necessary to control the person's symptoms and return her safely to society. The maximum period allowed for this commitment is the longest a defendant could have been put in prison if she had been convicted. The vast majority of successful insanity defenses are agreed to by the district attorney handling the case.
The state hospital hires psychiatrists, psychologists, nurses and a variety of other professionals and skilled workers to restore the mental health of patients. The hospital has security staff to assure that treatment can be provided in a manner that is safe for patients, staff and the community. Patients are not in the state hospital to "do time." They are there to get well.
Recently, one patient ran away from a supervised walk on hospital grounds and jumped into a waiting car to make his getaway. He was captured 17 days later in Sandy, the same town where his 2009 auto wreck caused the tragic death of two people and resulted in his commitment for two counts of second-degree manslaughter.
Some have questioned whether patients at the state hospital should be allowed to walk outside the facility walls and whether they should be permitted to have uncensored communication with others. If the goal of the hospital is to return its patients to health, the answer is a resounding "yes!" This is, in fact, what the hospital is licensed and staffed to do and what it is asked to do by the criminal justice system.
Mental illness can be effectively treated and the majority of patients in the state hospital will recover and be reintegrated into society. Punishing them with long years of languishing behind high walls is bad for the patients, bad for the hospital environment and financially wasteful. It also violates patients' civil and legal rights to safe and effective treatment that is not unduly isolated from society, and it undermines hope for patients and staff alike.
We at DRO think the hospital has taken appropriate steps to review the individual security assessments of other patients to assure that they are up-to-date and accurate. The actions of one patient should not harm the treatment of others. A thorough investigation should be completed to determine if criminal prosecution is appropriate for those who planned and executed the escape.
Bob Joondeph is Executive Director of Disability Rights Oregon.
Jul 26, 2011
The ADA is 21 years old. Here's a short history of its young life.
The roots of the ADA are imbedded in the civil rights struggles of the 1960s.
Martin Luther King wrote in his Letter From A Birmingham Jail on April 16, 1963:
All segregation statutes are unjust because segregation distorts the soul and damages the personality. It gives the segregator a false sense of superiority and the segregated a false sense of inferiority. Segregation … ends up relegating persons to the status of things. Hence segregation is not only politically, economically and sociologically unsound, it is morally wrong and awful.
Overcoming disability-based discrimination has required, and continues to require, "struggle." Every step toward equality has been hard-fought against entrenched interests and attitudes. Each victory has needed to be defended. This experience is common to all civil rights movements. Disability rights may, however, demand a particularly large change in thinking, both about disabilities and about society. This new way of thinking is imbedded in the ADA.
The first major step toward the ADA occurred in 1973 with the passage of Section 504 of the 1973 Rehabilitation Act. Section 504 banned discrimination on the basis of disability by recipients of federal funds. It was modeled after other civil rights laws that banned discrimination based upon race, ethnic origin and sex by federal fund recipients.
This represented the first time federal law recognized the exclusion and segregation of people with disabilities as "discrimination," and the first time people with disabilities were legally recognized as a class, in effect a minority group.
In 1973 the State of Oregon also passed its first law prohibiting discrimination against people with disabilities.
The Federal Department of Health, Education and Welfare was tasked with developing regulations to implement Section 504. Only after numerous demonstrations and political actions did that job get done: four years later. The regulations enacted on May 4, 1977 formed the basis of the ADA. Disability advocates fought successfully to keep the regulations from being revoked in the early 1980s when business interests wanted to be free from federal interference.
During the 1980s, there was also resistance from the US Supreme Court. Disability rights advocates joined in the effort to pass the Civil Rights Restoration Act which overturned a Supreme Court decision that had severely limited the reach of all statutes prohibiting discrimination by recipients of federal funds. (Grove City College v. Bell).
Legislation was also enacted to overturn Supreme Court decisions and reinstate prohibitions against disability-based discrimination by airlines, reinstate the right to sue states for violations of Section 504, and reinstate the right of parents to recover attorney fees under the Education for Handicapped Children's Act (now called IDEA).
In 1988, the Fair Housing Act was amended to prohibit discrimination against individuals with disabilities and the first version of the ADA was introduced in Congress.
The version of the ADA that passed on July 26, 1990 was introduced Senators Harkin and Durrenberger and Representatives Coelho and Fish (father of City Commissioner Nick Fish). Justin Dart, Chair of the Congressional Task Force on the Rights and Empowerment of People with Disabilities, traversed the country holding public hearings which were attended by thousands of people with disabilities, friends, and families documenting the injustice of discrimination in the lives of people with disabilities.
The ADA has five sections, or "titles" which are regulated by different federal agencies:
- Title I - Employment - directed by the U.S. Equal Employment Opportunity Commission (EEOC); and the U.S. Department of Labor (DOL).
- Title II - Public Services - (and public transportation) directed by the Federal Transit Administration (FTA); U.S. Department of Health and Human Services (HHS); U.S. Department of Education (ED); U.S. Department of Housing and Urban Development (HUD).
- Title III - Public Accommodations - directed by U.S. Department of the Interior (DOI); U.S. Department of Agriculture (USDA).
- Title IV - Telecommunications - directed by the Federal Communications Commission (FCC).
- Title V - Miscellaneous Provisions.
Some of the key Findings and Purposes set out in Section 2 of the ADA are:
- Some 43,000,000 Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older;
- Historically, society has tended to isolate and segregate individuals with disabilities, and, this continues to be a serious and pervasive social problem;
- Discrimination against individuals with disabilities persists in employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;
- Individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination;
- Individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities;
- People with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally;
- Individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypical assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society;
- The Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals; and
- The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities and costs the United States billions of dollars in unnecessary expenses resulting from dependency and non-productivity.
It is the purpose of this Act--
- to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities;
- to provide clear, strong, consistent, enforceable standards addressing discrimination against individuals with disabilities;
- to ensure that the Federal Government plays a central role in enforcing the standards established in this Act on behalf of individuals with disabilities; and
- to invoke the sweep of congressional authority to address the major areas of discrimination faced day-to-day by people with disabilities.
With passage of the ADA, Americans with disabilities had a new civil rights law and regulations, but again the US Supreme Court, in a series of cases, began to chip away at their protections. And again, disability rights activists fought back and were able to obtain passage of the ADA Amendments Act of 2008.
The ADAAA makes four major adjustments to how the ADA is to be applied:
- The term “disability” is to be construed in favor of broad coverage of individuals protected by the Act;
- An impairment that substantially limits one major life activity need not limit other major life activities in order to be a disability;
- An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active; and
- The determination of whether an impairment substantially limits a major life activity is to be made without regard to the positive effects of mitigating measures.
Not to be overly negative about the US Supreme Court, it has made some positive decisions for disability rights over the years. One was the case of Olmstead v. L.C. and E.W. in 1999. By a 6-3 vote, the Court found that the 'integration mandate' of the ADA requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." In this instance, the Court told Georgia's department of human resources that it could not segregate two women with mental disabilities in a state psychiatric hospital long after the agency's own treatment professionals had recommended their transfer to community care.
At the beginning of this short history, I said that a new way of thinking about disabilities and society are imbedded in the ADA. In short, the ADA recognizes that:
Disability is a natural and normal part of the human experience that does not limit the right to:
- Live independently
- Enjoy self-determination
- Make choices
- Contribute to society
- Pursue meaningful careers and
- Enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society.
Rather than focusing on “fixing” the individual, actions must be taken to “fix” or modify the natural, constructed, cultural, and social environment.
Attitudinal and institutional barriers that preclude persons with disabilities from participating fully in society’s mainstream must be changed.
Jul 07, 2011
The Governor and legislature show that compromise is not a naughty word.
The 2011 version of the Oregon legislature has closed to rave reviews. All of the major news outlets and commentators have congratulated the Governor and legislative leadership for their cooperation, willingness to compromise and progress on many important issues. Oregon, we are told, is once more leading the way by demonstrating that, even in tough economic times, representative democracy can work and government can solve problems. So how did we get here? Masterfully.
When the legislative session opened, the general understanding among lobbyists was that the budget process would be a bloodbath and that very few bills would pass. On the budget side, fiscal projections had us in a $5 billion hole. As for bills, the House of Representatives was evenly split between Republicans and Democrats who would therefore have to agree for any bill to pass. Given the partisan resentments of past years, few thought that cooperation would be forthcoming. But it was. Here are some possible reasons.
1. Lowered expectations: The legislature always engages in the psychological tactic of getting people ready for something awful and then delivering, to everyone's relief, something that is merely bad. Even in the richest of years, we are always told that there is not any money. This, of course, was not one of those years.
2. Unsustainability: Most policy makers realize that our aging demographics have made the structure and financing of government services unworkable for the next twenty years or so.
3. Willingness to innovate: When cuts in services are inevitable, it encourages new ways to doing things. For example, a person may insist that having a cappuccino every day is essential until the money to pay for it must come out of his beer budget.
4. Forging new commonality: Many have observed that all three legislative leaders come from rural Oregon and share a small town willingness to get along. Whatever the merits of this suggestion, the urban/rural divide is as traditional in politics as the liberal/conservative one.
5. Taxes off the table: Ballot measures that increased tax rates for businesses and the more wealthy were behind this legislature. This assured that tax reform would not be on the agenda, creating opportunities for discord. With only so much money, even big campaign contributors could be told that their interests would have to wait. Most would understand that Grandma should not be thrown under the bus to maintain the status quo.
6. Shared reasons to gamble: Despite all the highly charged national rhetoric on health care reform, it's well understood that the driver of reform is cost. The balanced budget passed by the legislature is gambling that publicly-funded heath care costs can be dramatically lowered in the years ahead. Most folks can agree to this because it delays big cuts throughout the budget and the reform strategy is to bring down high-expense care by keeping people healthier, rather than throwing them off insurance. To go back to the beer analogy, this approach has something for both sides: tastes great (healthy), less filling (costly).
At the end of the session, legislators were willing to hold hands and jump off the cliff. They began a number of reforms that will have to be implemented and tested. Business as usual was not a winning formula. Doing this required veteran leadership and, fortunately, it was there. Oregon has chosen not to go down the road of Wisconsin or Minnesota which have opted for confrontation rather than innovation.
We are nowhere near being out of the economic woods, and more needs to be done to correct some misguided policy directions, but Oregonians should be proud of what their government accomplished in this legislative session.
Jun 02, 2011
The Supreme Court found California prison overcrowding to be unconstitutional. But what the justices argued about was states' rights.
Each country has its own history, customs and internal arguments. Americans have argued about the proper balance between states’ rights and individual rights since colonial times. The first sentence of the US Constitution begins: “We the People of the United States.” It does not say “We the States.” The Constitution is an agreement among individuals, not states, to form a federal government with limited powers. A Bill of Rights was added to protect individuals from unrestrained governmental power. Some would have preferred the pact be more like the Articles of Confederation that had come before. It was basically a written alliance of independent states. It isn’t a coincidence that in 1861, when those who promoted states’ rights chose to secede from the Union, they named their new country “The Confederacy.”
Things didn’t go so well for The Confederacy but their argument for states’ rights is carried on today in politics, including the courts. And so the big question in a recent Supreme Court case is whether a federal court should have the power to change a state policy which is causing a large number of citizens to be denied constitutional rights. In other words, what prevails: the rights of the individual or the power of the state?
Last week, the US Supreme Court decided that California is operating a prison system that is cruel and unusual. But it was a close decision. Following its well known ideological divide, the four liberals voted yes, the four staunch conservatives voted no and the moderate conservative (wait for it) voted…..yes!
Why? 1. Because the 8th Amendment of the US Constitution outlaws cruel and unusual punishment. 2. Because California prisons don’t provide health and mental health care for many inmates due to severe overcrowding. 3. It is cruel and unusual to withhold health and mental health care from prisoners.
So, the five yes votes – "The Yeses” – agreed that California should bring down the population of its prison system from 200% of its designed capacity to 137.5% of that capacity. The four no votes – "The Nos” – were not happy.
Were they unhappy because California had been taken by surprise? No. The California prison population has been double the size that its buildings are designed to hold for over 11 years. The state has been under court orders to improve mental health services for 12 years and to improve health services for 5 years. Instead, the Nos were fuming because they believe the standards of a federal law were not met. That federal law forbids local courts from ordering states to reduce prison populations without convening a three judge panel and meeting very high standards. This law, the Prison Ligation Reform Act of 1995 (PLRA), was not followed, say the Nos. The Yeses said it was.
There was no disagreement about overcrowding or lack of health and mental health services. After all, in 2006, former Governor Schwarzenegger declared a state of emergency in the prisons, stating that “immediate action is necessary to prevent death and harm caused by California’s severe prison overcrowding.” The Governor was concerned about the “increased, substantial risk for transmission of infectious illness” and a suicide rate “approaching an average of one per week.”
The three judge panel heard evidence that, because of a shortage of treatment beds, suicidal inmates may be held for prolonged periods in telephone-booth sized cages without toilets. Other inmates are held for months in administrative segregation waiting for limited mental health services. Wait times for mental health care can be as high as 12 months. In 2006, the suicide rate in California’s prisons was nearly 80% higher than the national average for prison populations, and 72.1% of suicides involved “some measure of inadequate assessment, treatment, or intervention, and were therefore most probably foreseeable and/or preventable.”
Prisoners with physical illness don’t fare better. California’s prisons have only half the clinical space needed to treat the current population. A correctional officer testified that, in one prison, up to 50 sick inmates may be held together in a 12- by 20-foot cage for up to five hours awaiting treatment. The number and competence of staff is inadequate, and prisoners face significant delays in access to care. Adequate housing for the disabled and aged does not exist. The medical facilities, when they exist at all, are in disrepair. Basic medical equipment is often not available or used. Medications and other treatment options are often not available.
Prisons have backlogs of up to 700 prisoners waiting to see a doctor. A review of referrals for urgent specialty care at one prison revealed that only 105 of 316 pending referrals had a scheduled appointment, and only 2 had an appointment scheduled to occur within 14 days. Urgent specialty referrals at one prison had been pending for six months to a year.
The Nos didn’t deny these facts but choose not to mention them. Instead, they challenged the idea that overcrowding results in lack of care for all inmates. The Yeses set out lots of expert testimony that crowding is the primary cause of the constitutional violations. For example, the former warden of San Quentin and former acting secretary of the California prisons testified that crowding “makes it virtually impossible for the organization to develop, much less implement, a plan to provide prisoners with adequate care.” The Nos were not impressed. They also doubted the three judge findings that many prisoners can be safely released and that imprisonment in overcrowded conditions can increase the risk of prison violence and re-offending upon release.
The Yeses stressed the misery of the inmates, the years of failed attempts to address that misery and the integrity of the legal process that brought three judges together to consider how to responsibly address the problem. They supported the judges’ decision to allow California to decide the best way to bring down the prison population so inmates will have a chance to get at least minimally adequate health and mental health services.
The Nos think that prison overpopulation should not be linked to the constitutional violations. In their view, if a physically or mentally ill individual is subjected to cruel and unusual punishment due to lack of proper care, that inmate can go to federal court to request services. The federal courts, the Nos contend, should only order a remedy for the harsh consequences of severe overcrowding if every inmate cannot show that the overcrowding makes his or her punishment cruel and unusual.
They give the example of a prison that is too cold. In that case, the federal court would be justified in ordering the heat to be turned up. In sum, they believe that running an inherently unsafe institution is a state policy option that the courts should not presume to overrule. They also find that releasing any prisoner before his or her sentence is completed will always result in unreasonable jeopardy of public safety. The Nos seem to not trust state officials in only this one area: deciding how to make safe release decisions.
From my perspective, the Nos have an almost cartoonish view of prison inmates and are either totally unconcerned with the quality of their confinement or ignorant about the realities of administering a state institution. Their primary concern seems to be the age old debate about states’ rights as it manifests itself in constitutional jurisprudence. In aid of that argument, they are not afraid to throw in some fear and prejudice to spice things up. As the director of an agency that promotes and defends individual rights, I find this all, shall we say, a bit academic.
May 10, 2011
Waiting between meetings, I reflect on (and worry about) the legislative process.
I'm sitting in a basement room of the state capitol building called the Lobby Message Center. Somehow, I was scheduled for an 8:00 am meeting with a senator to discuss our bill to regulate seclusion and restraint of school students and then a 3:30 meeting with the Co-Speakers office to talk about our opposition to building a new state hospital in Junction City. With seven hours in-between, I thank heavens for the internet!
The legislative session is starting to lean toward the finish line. Key legislators met in private with the Governor yesterday to hammer out a budget deal. Rumor has it that they succeeded. The next month will be filled with attempts to get surviving bills heard by committees and to get the big deals done. The last two weeks of the session are when the amateurs stay home and the powerful converse and resolve.
On the state budget front, everyone knows there will be major cuts in services and benefits. Oregon is slated to have the shortest period of public assistance in the nation, to make deep cuts in senior and disabled care, eliminate support for the families of people with intellectual disabilities, cut in-home supports for all populations, and more. Schools are already laying off teachers and some have announced cuts to special education services.
Meanwhile, on the federal level, the Speaker of the House is demanding "trillions" of cuts to the federal budget. This apparently includes shifting the costs of many human services programs to states. It isn't hard to do the math on that one. Bottom line: elimination of human services because states can't afford to provide what they are now.
Are we witnessing the break down of the social compact? Will we go back to the 1930s when 80% of the elderly were poor and only the children of the well-to-do get a decent education? I think very few people in this building would like to see that. It should be interesting to see how we can avoid it.
Apr 10, 2011
A bill about special education hearing procedures provides a forum for legislators to debate the merits of public education and trial lawyers.
So there I was: sitting in the audience at the Oregon House Committee on
Education, watching all the action. The last item on the agenda was a
bill that would establish who has the “burden of proof” in special
education administrative hearings.
When a family thinks a school district is not properly serving its child
and the district does not agree, the family can ask an administrative
law judge to decide if the district has met its legal responsibilities
under the Individuals with Disabilities Education Act (IDEA). This bill
will decide whether the family must prove that the district is out of
compliance or, instead, the district has to prove that it is following
the law. Who, that is, has the “burden” of proving their case?
The bill, House Bill 2296, would place the burden of proof on school
districts. It was given a public hearing a few weeks ago but most of us
advocates thought the committee would take no further action. Two
years ago, there was a similar bill that died in committee because of
opposition by school districts. Although some changes were made to
address those concerns, the districts opposed the bill this time as
well, saying that if schools were required to prove that a child with
disabilities is receiving proper services, it would encourage parents to
file more complaints and ask for more hearings.
But, to our surprise, the bill was being given further consideration and
so I stopped in to see what would happen. The hearing opened with an
explanation of what the bill does. Rep. Sara Gelser, who sponsored the
bill, said that it would not make a big difference in terms of how the
hearings are decided but would “send a message” of support for parents
who are unhappy with the special education services being offered their
child. Rep. Gelser has a child with disabilities and relates a few
instances in which her child did not receive proper services.
Rep. Jason Conger said that he is concerned that parents will “lawyer
up” if the burden of proof is changed. He said that a plaintiff’s
attorney can “come in and shake down a defendant.” He likened this to
employment cases where lawyers make frivolous demands on businesses
which settle in order to avoid the costs of litigation. He said
opportunistic attorneys do “shakedowns,” and that this bill won’t affect
schools that are “bad actors.” Needless to say, he is opposed.
Rep. Gelser responded, saying that there are bad actors on all sides of
education hearings. But, she continued, money is not at stake here, it
is educational placements. She gave examples of hearings that resulted
in no relief or minor relief and says she likes the bill but hasn’t
prioritized it. She then talked about closure of school for the blind
and how this bill can send a message to those parents who feel the
legislature has ignored their needs.
Rep. Julie Parrish then spoke, saying that kids need better options.
She was troubled that parents have to sue schools to have schools do the
right thing. She thought this demonstrates the need for choice of
schools. She said that a parent has to sue because the local school is
the only option. The parent should be able to shop for someplace
better. She thought this bill will cost schools more and she does not
want to put a burden schools to spend more and thereby take away
services from others. But, she said, this bill is not really about
disabled children. It’s about school districts having too much power
because they have a monopoly. She concluded, saying that this is why
she “may be a yes vote. Something’s got to change!”
The next speaker was Rep. John Huffman who said he wants to send a
message of affirmation to parents but wants to do it like they did it
for the School for the Blind. He said the legislature expects districts
to listen to parents and do the best they can. “Every child is a TAG
child. We pay teachers good money to find how to stimulate children.
Parents shouldn’t be forced into the situation of filing a lawsuit.”
Rep. Betty Komp then spoke, saying that this is a highly charged topic
on which she “goes back and forth.” She said that she believes in
public school education and that the best way to support it is to pass a
decent budget. This bill, she said, is contradictory to this
message. She will be a no vote.
Rep. Michael Dembrow was then recognized to speak. He thought that most
districts are trying to do the right thing but problems do arise. He
wished there could be a neutral 3rd party or ombudsman that parents
could go to and hoped this is something that will be pursued. He will
support bill because he respects Gelser and his belief that a strong
message needs to be sent. The legislature, he said, wants school boards
to protect all children. Rep. Lew Frederick appeared to agree with
Rep. Dembrow, but chose not to speak.
Committee co-chair Matt Wingard had the last word. He said that the
kind of frustration that parents experience drive this type of bill. He
had heard many stories from parents of special needs children. It
“breaks my heart,” he says, “that parents can’t get the sense they are
being listened to.” He is proud to support bill.
Then came the very interesting vote. Republicans Huffman and Conger
vote no. Democrat Komp voted no. Republicans Wingard and Parrish voted
aye. Democrats Gelser, Dembrow and Frederick voted aye. HB 2296 is
moved out of the committee with a “do pass” recommendation by a 5-3
My analysis, for what it’s worth, is that since the bill was viewed as being largely symbolic, many legislators looked at it exactly that way and chose to make their own symbolic points. Wingard and Parrish promoted their view that parents should have more choice in schools. Conger used the opportunity to slap trial lawyers. Komp spoke to the issue of adequate funding for public schools, thereby countering the Wingard and Parrish position that the problem is not lack of funding but lack of choice. The remaining committee members pretty much addressed the merits of the bill itself. If only they had counted, HB 2296 would still have passed, but by a 3-1 vote.
Mar 14, 2011
For advocates, it's our values that count. They must inform the decisions that legislators make in Salem and DC.
I’m on a flight from Portland to DC to meet with other P&A directors from around the country to discuss issues of mutual concern.
Oddly enough, while I’m doing this, Congress is trying to decide if and how our funding will continue for the next six months. P&As are not slated for elimination in any of the proposed budgets, but if a budget is not agreed upon soon, DRO may run out of reserves and be forced to temporarily close our doors. I don’t expect that to happen, but it does get one’s attention.
Imagine that. Even though all legislators agree that we should continue to receive federal funding, the overall budget battles may mean that we are unable to pay our staff and provide some services to our clients and potential clients. I say “some” because, as a law office, we have an ethical obligation to continue to serve our existing clients whether we are paid or not.
Perhaps this trip is a costly excess right now. I know that if I didn’t take the trip, it would solve less than 1% of next month’s payroll cost and I really do need to know what’s happening in Washington. So here I am in my cramped seat thinking back to yesterday at the state capitol where I had yet another discussion about the budget and service cuts that are looming. Which programs will be eliminated? Which services will be scaled back? Whose salaries and provider rates will take a hit? Is this trip taking me from the frying pan to the fire, or the reverse?
Troubling questions, indeed. But I remind myself that we in the disability rights movement are warriors. We have seen tough times before and have learned that though we may face hardships, we can never give ground on our values. More than ever, this is a time emphasize support of integrated, community-based services that promote choice, independence and self-direction. It is clearly a time to put aside old institutional models because they are expensive, ineffective and repressive.
In DC, I will be hearing about the many exciting initiatives happening around the country to further our values. From this comes energy and inspiration, things that some would discourage us from expecting in our capitols.
Feb 20, 2011
Why Oregon needs to keep its schools healthy, safe and inclusive.
DRO regularly receives call from parents who have just learned that their son or daughter has been involved in a physical incident in school. Sometimes this involves a teacher or teacher’s aide who has locked a child in a room or closet. Sometimes the child has been tied or handcuffed to a chair. Sometimes the police have been called. Sometimes the child has been tasered.
When we receive these calls, we first investigate to find out what happened. We look to see if the child has been deemed eligible for special education services and whether the child as an IEP (individualized education program.) If so, we see if the program includes a behavioral plan. For special ed students, we often find that there is no behavioral plan or the plan in place is inadequate. We also find that school personnel have not been trained to understand and apply behavioral plans. This is not true in all cases, but in many.
Our view is that no-one benefits from physical conflicts in schools. School budgets may benefit in the short run from skimping on training or keeping a child locked in a room rather than providing an adequate level of staffing, but this undermines the quality and trust placed in a school. We also think that a school that fails to inform a parent of such an incident is harming the student, the parents and the community. If, for example, your child was tazered in school and the school didn’t tell you, how would you and other parents feel about it?
DRO worked with the Oregon Department of Education to create administrative rules that set standards for the use of seclusion and restrain of students. But four years later, we found that most schools were not complying with the rules. So we have now suggested legislation to require schools to have written policies, provide training, keep data and inform parents of incidents.
This past Wednesday, the House Education Committee held a public hearing on House Bill 2939. This followed the release of a study by DRO which sets out the problem and proposed solutions, and a press conference on Tuesday featuring the parents of a child who has been secluded and restrained.
At the hearing, DRO attorney Chris Shank testified about the need for the bill and how the McMinnville School District achieved a dramatic reduction in use of seclusion and restraint by implementing best practices. Committee Co-Chair Sara Gelser asked why the bill forbids use of “prone restraint.” Chris said that this practice restricts breathing and has resulted in deaths. This concern as confirmed by another witness whose company trains teachers in appropriate intervention techniques. This witness also noted that forbidding the use of prone restraint does not penalize a teacher if a student ends up in prone position temporarily.
A union representative testified that staff need training and injuries need to be documented. She seemed to blame all problems on school administrators and lack of funding and be concerned that staff may be scapegoated.
Dr. Jeff Sprague from the University of Oregon testified about the success of using positive behavioral interventions and supports to keep students and teachers safe. The parent of a child who had been strapped to a chair for full school days in order to keep her from wandering (without informing her parents) gave articulate and affecting testimony.
There were very few questions from the committee members. The politics of this bill are that nobody wants to embarrass school districts and districts do not want to publicly state that restraining and secluding students is alright. However, the quiet lobbying that occurs out of the public eye will emphasize that districts face tough financial pressures and do not want to be regulated by the state. There will also be push-back from those who do not want children with disabilities in regular schools. Yes, there are plenty of those folks still around.
The bottom line for me is that yes, we do ask a lot of our schools and, as we see playing out in Wisconsin, some citizens believe that we should get everything we want without having to pay for it. But what our schools have been able to do for people with disabilities has been truly revolutionary. We have been able to put aside expensive institutions, expand employment and social participation and bring down the costs of social dependence by educating and integrating children with disabilities as early as possible.
Education benefits all students and their families as well as our broader economic and social well-being. Applying what we have learned through experience and research to keep schools safe is a win-win. And providing schools with adequate resources to do the job is, um, a no-brainer.
Jan 24, 2011
Oregonians with disabilities should keep a careful eye on both how government works and on their medical files.
Last week, I heard a radio report about the transfer of Rep. Gabrielle Giffords from the hospital to a rehab facilty. The reporter noted that Giffords' family would not release all of her medical records to the press and then explained, somewhat grudgingly, why they are allowed to withhold this information. This reminded me of an article I had just read about Apple CEO Steve Jobs who is taking time off to deal with health problems. This report had also grumbled about Jobs' desire to keep his medical records private.
The very next day, I read an editorial in the Oregonian that suggested that public safety would improve if police had access to the mental health records of homeless people. Then, I went to a meeting with members of the Oregon Parole Board where we discussed if it was good practice for the Board to release mental health evaluations of inmates who are being considered for parole, to the victims of their crimes. This is now the practice of the Board, making Oregon unique among the states. At a legislative hearing on this issue, I heard a crime victim advocate say that he kept a file of all the psychological evaluations of inmates. He said he enjoyed reading them. No harm, one supposes, since there is no penalty for releasing this information to the general public.
It seems that in this Facebook age, everyone wants to see everybody else's junk. But don't touch mine and definitely do not mess with my privacy settings. So from airport patrons to medical patients, from abuse victims to gun owners, from big-time political donors to ballot measure signers, everyone wants to be able to keep their own profile low, low, low. Another example: the Oregon Attorney General is campaigning that he will make it easier for folks to get public records while, at last count, there are 41 bills filed in this year's legislature that affect public records: most seeking more protection from disclosure.
It's fair to ask if privacy is just another commodity that the powerful or politically sympathetic get to enjoy, or are there underlying principles that we can apply to measure when privacy is a reasonable expectation? The U.S. Constitution has been found to guarantee some level of privacy from government intrusion as a protection for the politically disadvantaged. But what about when the state sanctions private intrusion by a favored group into the normally private affairs of a less popular population (for example, the Oregon parole board policy on psychiatric evaluations of inmates)?
The importance of confidentiality for people with disabilities is closely tied to the discrimination that people experience, particularly those with "hidden" disabilities of the mental, cognitive and intellectual kind. Many people with mental illness are not comfortable with police evaluating their clinical records because of their experiences of being automatically considered erratic and unpredictable by officers. Chronic illnesses of all sorts are of great interest to others, not only to insurance companies but to employers and, indeed, investors.
Do stockholders in Apple feel able to sort through Steve Jobs' medical information and decide if he is a good investment based upon their own medical knowledge? In many cases, yes. Are Rep. Giffords' political opponents ready to assess her likely level of recovery? I suspect they are at it already with the information at hand. Is the general public wary of individuals with brain injury, mental illness or intellectual disabilities? Check out the local newspaper or cinema for an easy answer.
Privacy is a topic that appeals to human impulses of self-protection and curiosity. Oregon's interest in open government and protection of its citizens must be balanced. The choice is not between being Wikileaks-West or East Germany on the Willamette.
Jan 12, 2011
Let's not draw the wrong conclusions from these tragic shootings.
We are very saddened by the shootings in Tucson. To Representative Gabrielle Giffords, her staff and other victims of this vicious attack, we wish you comfort and courage in the difficult process of healing and recovery.
We know from experience that tragic events of this kind spawn a variety of political opportunists who try to exploit people’s sympathies and fears. On issues concerning the tone of political discourse and the wisdom of gun regulation, various forces will fight it out in the public arena. One group, however, will be targeted as scapegoats and is not well equipped to fight back: individuals with mental illness.
These horrible shootings have already been used by a D.C.-based organization that is urging state legislatures to lock up and forcibly medicate any individual who has a diagnosis of serious mental illness. This group is also attempting to silence people and organizations who advocate for humane and respectful treatment and supports for those individuals. The forced treatment group seems to believe that legislators, judges and policy makers should not hear the concerns of individuals with mental illness before making decisions that directly affect their lives. Its strategy mirrors its underlying principles: legislators should not hear all sides of the issue because there is only one way to correctly think.
The facts are that having mental illness, in itself, does not increase one’s chances of committing serious violence. However, failing to offer assistance to people struggling to find housing and employment, and turning away from those who need help to resist fear and substance abuse can have awful results for them, their families and their community. Laws that make it easier to commit people or forcibly medicate them are not effective in improving mental health conditions or in decreasing social violence. Evidence-based treatments and supports that are known to help continue to be in short supply even though, to quote Gary Roberts, the new superintendent of the Oregon State Hospital, “Recovery is not only possible, it is more than likely.”
But don’t take my word for it. The two major federal policy papers in the field: The President’s New Freedom Commission on Mental Health and The Federal Action Agenda encourage a focus on outcomes of mental health care that are desired by the individual, “which are to attain each individual’s maximum level of employment, self-care, interpersonal relationships, and community participation.” None of the 20 goals set forth in the New Freedom Report recommend forced treatment. Instead, evidence-based practices and rights protection are emphasized.
In Oregon, we have some very tough choices to make about funding state services. Continuing the present level of services would cost $3.5 billion more than the state expects to have. This is why we must make sure that legislators know the facts and do not make decisions based upon unfounded fears and hasty, unproven “solutions.”
We understand that Representative Giffords has a long, distinguished record of advocating at the state and federal levels for community mental health services and cautioning against the stigma and discrimination that burden people who have mental illnesses. Let her inspiration and courage guide us through these difficult times.
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.
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