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Dec 15, 2011

Note From DC

by Bob Joondeph — last modified Dec 15, 2011 11:00 AM

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

THANK YOU FOR YOUR SUPPORT

by Bob Joondeph — last modified Dec 11, 2011 09:35 PM

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 501(c)(3) corporation.  All donations are tax 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

Institutions: Who Do They Protect?

by Bob Joondeph — last modified Nov 12, 2011 05:29 PM

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

Enforcing Rights for America

by Bob Joondeph — last modified Oct 02, 2011 08:55 PM

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

A hospital, not a prison | OregonLive.com

by mckenna — last modified Sep 26, 2011 01:15 PM

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.

© 2011 OregonLive.com. All rights reserved.

Jul 26, 2011

Happy Birthday, ADA

by Bob Joondeph — last modified Jul 26, 2011 08:15 PM

The ADA is 21 years old. Here's a short history of its young life.

THE STRUGGLE

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 ACT

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:

  1. 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;
  2. Historically, society has tended to isolate and segregate individuals with disabilities, and, this continues to be a serious and pervasive social problem;
  3. Discrimination against individuals with disabilities persists in employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;
  4. Individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination;
  5. 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;
  6. People with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally;
  7. 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;
  8. 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
  9. 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--

  1. to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities;
  2. to provide clear, strong, consistent, enforceable standards addressing discrimination against individuals with disabilities;
  3. 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
  4. to invoke the sweep of congressional authority to address the major areas of discrimination faced day-to-day by people with disabilities.

THE ADAAA

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.

OLMSTEAD

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.

THE PRINCIPLES

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.

For more information about the ADA, go to: http://www.ada.gov.

Jul 07, 2011

Oregon: Where Democracy Works

by Bob Joondeph — last modified Jul 07, 2011 06:35 PM
Filed Under:

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

Brown v. Plata

by Bob Joondeph — last modified Jun 02, 2011 03:15 PM

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

Musings in the Capitol Basement

by Bob Joondeph — last modified May 10, 2011 02:24 PM

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

Issues Large and Small

by Bob Joondeph — last modified Apr 10, 2011 09:35 PM

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 vote.

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

Up in the Air with Funding

by Bob Joondeph — last modified Mar 14, 2011 11:30 AM

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

Regulating Seclusion & Restraint of Students

by Bob Joondeph — last modified Feb 20, 2011 02:45 PM

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

Privacy and Openness: Where is the Balance?

by Bob Joondeph — last modified Jan 24, 2011 07:35 PM

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

Looking for Answers in the Wake of Tucson

by Bob Joondeph — last modified Jan 12, 2011 08:25 PM
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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

Budgeting to Promote "Culture Change"

by Bob Joondeph — last modified Dec 19, 2010 01:55 PM

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

Support Eliza Schaaf

by Bob Joondeph — last modified Nov 27, 2010 08:40 PM

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 ADA, USDOJ and OSH

by Bob Joondeph — last modified Nov 27, 2010 08:35 PM

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

Now That The Election is Over

by Bob Joondeph — last modified Nov 04, 2010 02:20 PM
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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

Register to Vote! Today is Your Last Chance.

by Bob Joondeph — last modified Oct 12, 2010 02:35 PM

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

Back at the State Capitol

by Bob Joondeph — last modified Sep 22, 2010 08:10 PM

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." 

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