I've just observed the 37th anniversary of my arrival in Oregon.  It was a sunny June day in 1976 when we pulled our pickup truck into The Dalles, having driven all the way from the East Coast.  After a night in a cheap motel, it was on the Portland where I would study for the Oregon Bar Exam and prepare for my first law job as a VISTA volunteer attorney in the Klamath Falls Legal Aid office.

I was thinking back to my native soil of New Jersey this week as I examined the still-developing Oregon mental health budget for 2013-15.  As a teen, I would take the bus into New York and just hang out.  Manhattan hadn't been neatened up back then and the streets offered lots of entertainment including the guys enticing you to play three card monte.  A key to that game, for those who don't know, is the art of misdirection.  The dealer gets you to pay attention to one hand while assuring your doom with the other.

So what does this have to do with Oregon and our mental health budget?  Well, here in the land of "transparency," there is still a need for hard-ball politics.  And here in the land of socially progressive policy, there is still a need for, well, hard-ball politics.

Consider all the hoopla that accompanied the Governor's recommendation that the coming budget include a large increase for community mental health services.  Add to that the additional hoopla that surrounded a bill from the Senate President to add even more money to the community mental health coffers.  Now, all this noise may have been for the benefit of the US Department of Justice that has been investigating why Oregon spends so much on its state mental hospitals compared to its community system.  Or perhaps it was trading on the public's fears and remorse about the shootings in Connecticut and at Clackamas Town Center.  Maybe the death of James Chasse and other death-by-police situations had caught lawmakers' attention.  But whatever it was, the legislature seemed to have discovered a new enthusiasm for community mental health services.

What we haven't heard much about, either through press releases, hearings or public discussion is the legislature's quiet march to build a new state mental hospital in Junction City and to fund a new pod of group homes near the old Blue Mountain Recovery Center in Pendleton.  As one long-time mental health administrator told me, no other state in the country is building new, large state hospitals.  In this, Oregon appears to be unique.  Other states are certainly not moving in-patient services away from their major population centers.  Oregon is.  Most states are working to lessen the segregation of its mental health services by moving away from the 20th century model of building big hospitals next to prisons on the outskirts of town or in rural areas where there is less public resistance.  Not Oregon.

Take, for example, the plans in Pendleton.  Creating a pod of group homes that are physically isolated from the town (in fact, these would be located on the site of the old Eastern Oregon Training Center) achieves the goal of segregation of mentally ill persons while cleverly leveraging federal Medicaid money by pretending that these are "community-based services."  It's a perfect solution for Oregon: it avoids community resistance to having "those people" within sight, it brings a federal match for state expenditures, and it allows the state to claim that it is offering community-based residential services rather than continuing segregated institutional care.

Now that we are in the late stages of legislative budget formation, we will see whether the promises of increased funding holds up.  But, at the same time, the very quiet process of approving the release of bond funding for Junction City Hospital and paying for the debt load for Oregon's new institutions is moving steadily forward.  Oh, and did you know that it will cost close to $200 million dollars, vastly more than either the Governor or legislators have proposed for improved community mental health services?  I bet you didn't. 

So while Oregon makes lots of noise about how it wants to expand community services, the real money goes to perpetuating the segregation of people with mental health needs while paying for the jobs to build and staff new institutions.  And in years ahead, those buildings will need to be maintained and there will be a strong and ongoing constituency from labor and local communities demanding that those jobs be protected and well compensated.  Meanwhile, funding for community services will be subject to all the inconsistency that history has shown to plague them.  It is the lack of dependability for community services that has been bemoaned for over 40 year and is generally blamed for the failings of what some call "deinstitutionalization." 

But as the guy on the New York street corner of my youth would tell you, you shouldn't be looking over there.  Just give me your money.

On April 10, 2013, the Governor of Oregon issued an Executive Order on employment services for persons with intellectual and developmental disabilities.  The Order comes just two weeks after the United States moved to intervene in a federal lawsuit, Lane v. Kitzhaber, that seeks to end the unnecessary segregation of persons with disabilities in sheltered workshops.    While the Order tacitly acknowledges the state’s failure to provide adequate employment services over the past two decades, it also expresses a desire to have more coordinated activities between state agencies.  It does little, however, to ensure that individuals with disabilities will ever be able to secure real jobs in the community or earn at least a minimum wage in an integrated employment setting.

Under the Executive Order, only 1/3 of all persons who are segregated in sheltered workshops will be provided employment services.  This means that at least 1,600 individuals will have to remain in the workshops.  And even for those who do receive employment services, there is no assurance that these services will be designed to enable them to ever leave the workshops, let alone to access real jobs in competitive employment settings.  In fact, given Oregon’s past practice of counting individuals in sheltered workshop who receive even 1 hour a month of job counseling as getting “supported employment services”, it is possible that nine years from now, the order could result in no one leaving sheltered workshops. 

The Executive Order includes no commitments about the quality, quantity, or outcomes of the employment services.  Consequently, it appears unlikely to result in people with disabilities having access to typical employment settings, integrated services, or real wages.  The Order also fails to address the service needs of the overwhelming majority of individuals served by the State’s system.  It plans to administer employment services to only approximately 10% of the total number of people with intellectual or developmental disabilities served by the State’s day services. 

Although the Order provides for “a significant reduction over time of state support of sheltered work,” it mentions no adequate or effective commitment to benchmarks, system outcomes, or re-allocating or re-distributing resources to provide individuals with disabilities access to employment services in integrated settings.  In sum, the plan all but assures that the goals for delivering services to individuals in the community are advisory goals and not commitments.

The Order also considers group enclaves and mobile work crews to be “integrated employment settings,” even though people in such settings frequently do not interact with non-disabled individuals and often earn sub-minimum wages.

The Lane v. Kitzhaber class action suit and the United States’ Complaint-in-Intervention ask that Oregonians with I/DD who can and want to work in integrated employment settings have a meaningful opportunity to do so.  The Governor's Executive Order stops short of giving that assurance.  Instead, it sets out a policy to provide only a small fraction of the people in Oregon's employment service system with the assistance they need to achieve their goal of a real job in the community.

The word “choice” has always been a cornerstone of disability rights consciousness.  Here at DRO, our three word motto, “Opportunity, Access, Choice,” recognizes this important concept.  But as the years go by, I find that the original vision expressed by the word "choice" has been co-opted by some people who tilt more toward protection than liberation and those who find it expedient and comfortable to perpetuate the status quo.

Add to that a raft of social science that has hit the best seller list demonstrating that choice can be easily manipulated.  Anyone who works in advertising is probably wondering where I have been.  But after quite a few government meetings discussing “opt-in” vs. “opt-out” enrollment strategies, I have gotten the message.  For most of us, choices can be engineered by how the options are presented.

Advocates of large state institutions suggest that such facilities offer people with disabilities “choice” of services.  In Oregon, some advocates are working to preserve the choice to live in a nursing home.  In publicly-funded sectors, the right to “choose” a service that is equally (or less) effective but costs more usually results in a decrease in the total number of people who can get services.  In that case, a choice is not personal, it directly affects others.  But even if resources were not an issue, does an objectively inferior option truly provide the type of “choice” that disability rights advocates want?

In Sunday’s New York Times Book Review, the cover story reviews “Lean In” by Sheryl Sandberg.  The book is written by a very successful businesswoman who promotes self-confidence and hard work for women who want to become powerful corporate leaders.  The review includes a quote from the book that seems to be relevant beyond the corporate establishment:

For decades, we have focused on giving women the choice to work inside or outside the home … But we have to ask ourselves if we have become so focused on supporting personal choices that we’re failing to encourage women to aspire to leadership.

When DRO started investigating Oregon’s sheltered workshops, some people told me that we needed to honor the choice of those who prefer segregated services to community-based jobs.  I learned that sheltered workshops are a good choice if what you want is dependability, stability and availability.  After all, supported employment services in Oregon have none of those qualities.   

This reminded me of the time when capable high school students of the wrong gender and color were encouraged to limit their aspirations to traditionally acceptable roles.  And if this discouragement was not enough, colleges and businesses had quotas and policies that assured that few, if any, of them moved up in the social hierarchy.

And so whether you are an aspiring CEO of Facebook or a high school kid with a disability who wants to follow her dream when she graduates, choice means more than having the right to select from available alternatives.  It requires encouragement, expectation, risk and real opportunity.  Call it “meaningful choice.” 

If a person is offered delayed access to unproven, sparsely available job training and supports, or services that may land a person in a sub-minimum wage job in an enclave for a couple of hours a week, the stability of a workshop looks pretty good.  I suppose you could call that choice, but it isn't meaningful choice.

I’m on a flight right now to Washington, DC for the annual meeting of directors of protection and advocacy agencies.  There is a “P&A” in every state and territory as well as one on the Navaho Nation in Arizona. 

It just so happens that this meeting coincides with the advent of “sequestration,” the federal government across-the-board cut in discretionary spending.  Sequestration has gotten a lot of press, but it is not the only cutback happening.  The federal government has been quietly tightening its belt for some time now.

For DRO, this has meant laying off six staff over the last year and not filling two vacant positions.  Our staff positions have now been cut by about 1/3 over the past few years.  We have had to adjust by serving less Oregonians with disabilities and focusing less on individual representation and more on individual advice and referral and legal work that may affect groups of people rather than individual cases.

DRO receives most of its funding from the federal government.  Since we often bring legal actions against state and local governments, they have not seen the wisdom of providing us with resources.  We do get some (much appreciated) support from the Oregon Law Foundation, but the lion’s share of state and foundation support for legal services (including court filing fees) goes to Legal Aid, which is large enough to have a well-staffed and sophisticated fundraising organization.

Despite these challenges, DRO has a very skilled and experienced staff that gets great results of our community.  Whether it is legal actions, accurate and useful information, advocacy with government agencies and the legislature or investigation and prevention of abuse and neglect, DRO’s existence assures that the voice of disability rights is heard and honored in Oregon.

The disability rights movement is about much, much more than rights enforcement.  It has a vision of a world that understands that people with disabilities are not "broken" and in need of fixing.  Instead, our environment and attitudes are the things that need to be fixed.  As a vital part of the disability community, DRO shares, communicates and applies this vision of a fully inclusive society.

There is much more to be done.  Change takes time.  Civil rights do not protect themselves.  DRO will be here for years to come to continue our work, as part of our Oregon disability community, to have a fully accessible, safe and just society.

The Oregon legislature is poised to begin its 2013 session.  Today, I am sitting in a hearing room listening to a full day training for legislators on mental health and the criminal justice system.  In the wake of the tragic shootings at Clackamas Town Center and Newtown, Connecticut, legislators are looking at better ways to keep individuals and the community safe as well as making the best use of our criminal justice and mental health resources.

DRO is participating in this discussion and is working on a number of other disability-related issues and bills.  In the weeks and months ahead, we will be working on legislation to:

1.  Improve communication between the state hospitals and district attorneys regarding patients who are mentally incapable to facing criminal charges,

2.  Limit the transfer of seriously mental ill patients from the state hospital to jail,

3.  Allow findings of guilty except for insanity for minor crimes to be expunged from a person's record,

4.  Extend the law regulating seclusion and restraint of school children beyond 2017,

5.  Direct schools to send seclusion and restraint reports to the state Department of Education,

6.  Clarify that a person cannot lose his or her parental rights solely because of their disability,

7.  Extend state law protection for the use of assistance animals to all people with disabilities,

8.  Strengthen the law limiting use of seclusion or restraint on individuals with intellectual disabilities.

DRO will be involved in monitoring and commenting on many other bills affecting Oregonians with disabilities as the session moves ahead.  As usual, we will send out a weekly Legislative Update during the session to our email list.  If you would like to be on that distribution list, send us a request with your email address, sit back and enjoy the action!

The Board and Staff of DRO Are Thankful for Your Belief that:

• Every Oregonian should have the opportunity to participate in society.

• No-one should be unnecessarily segregated in institutions, facilities or workshops.

• Jails and police should not be the primary social response to people in mental health crisis.

• Abuse, neglect, or victimization of vulnerable people must not be tolerated.

• A good public education should be available for all children.

• Employment at a fair wage should be attainable for all.

• Physical or mental disability should not condemn a person to poverty and dependence.

• Strong and persistent advocacy is necessary to realize these beliefs.

We Are Thankful for your support for Disability Rights Oregon!

Happy Thanksgiving!

Back in 2004, State Senator Avel Gordly sent a letter to the U.S. Department of Justice (USDOJ).  She asked that it investigate possible civil rights violations of past and current patients at the Oregon State Hospital (OSH) caused by "serious overcrowding and understaffing.”  Almost two years later, the USDOJ notified Governor Kulongoski that it was initiating an investigation of conditions and practices at OSH. 

Concerned about a federal take-over of the hospital, the state took major steps to improve OSH including legislative approval of $458.1 million to replace OSH with two new state hospitals, one in Salem and one in Junction City. 

In January 2008, USDOJ delivered its finding to the Governor.  It found that Oregon was violating the civil rights of OSH residents because of:

• Inadequate protection from harm
• Failure to provide adequate mental health care
• Inappropriate use of seclusion and restraint
• Inadequate nursing care
• Inadequate discharge planning and placement in the most integrated setting
  

To this day, the state and USDOJ have not come to terms on a settlement of all these findings.  State officials say that they have improved OSH without federal interference.  Since they released the findings, USDOJ has told the state about its concerns that OSH patients are not getting adequate physical health care.  It has also warned the state that building additional hospital beds at the expense of community services would be viewed as a problem.

Meanwhile, in 2009, President Obama launched “The Year of Community Living” in recognition of the tenth anniversary of the Supreme Court’s decision in Olmstead v. L.C.  He directed federal agencies to vigorously enforce the civil rights of Americans with disabilities.  The USDOJ responded by making enforcement of Olmstead a top priority.  In 2010, it announced a national initiative to investigate ADA complaints and enforce the Olmstead "integration mandate" of the ADA. 

Then, in early 2011, USDOJ lawyers met with Oregon officials and community partners to renew its investigation of whether Oregon was violating Olmstead.  Later that year, it also opened an investigation into the use of force by the Portland Police Bureau (PPB) against people living with mental illness.

This month, both of these investigations have been settled.  The Portland settlement contains over 100 changes in policies, practices and procedures that affect police use of force, police training, access to community mental health services, crisis intervention resources, officer accountability, and community oversight.  Police are to use more de-escalation techniques and less tazers, a new Crisis Intervention Team and more Mobile Crisis units will be created, and local CCOs are to create new “drop-off centers” for individuals in crisis, and new addictions and mental health-focused subcommittees to pursue long-term improvements to the behavioral health system in seven specified areas, including the expansion of peer services.  The settlement also mandates improved investigation and oversight of police use of force and swifter disciplinary procedures.

The USDOJ settlement with the state also addresses crisis intervention, but affects a wider scope of mental health services.  Remember that the Olmstead case says that individuals with disabilities have the right to receive public services in the least segregated setting that is appropriate to their care.  In a settlement that is as unique as Oregon’s health care transformation process, USDOJ agreed to work with the state “by embedding reform in the design of the State’s health care system.”

This agreement calls for Oregon to collect statewide behavioral health data about services currently being provided in order to assess the nature of those services and the outcomes they achieve.   A comprehensive list of data “metrics” are to be collected, reviewed and evaluated by the parties to identify gaps in services and how those gaps can be filled.  This process will continue through 2015.

The USDOJ settlements, together with Oregon Health Care Transformation and implementation of the Affordable Care Act, offer a rare opportunity to make major reforms to how the state funds and delivers behavioral health and police services.  Success will require full ongoing engagement of advocates, consumers, providers, and public officials as well as lawyers and the judiciary.  We need to keep at it over the long haul.  According to the agreements, if all goes well, their work will be fully completed in 2017, a mere 13 years after Senator Gordly sent her letter.

A week ago, last Friday morning, I was sitting in a meeting of the Oregon Health Plan's Metrics and Scoring Committee.  We were considering how to use data to create fiscal incentives for Community Care Organizations (CCOs) to improve public health.  This is, frankly, a bit over my head, but I'm sticking with it.  Oregonians with disabilities are depending on health care transformation to improve their access to medical services and to help them stay healthier in general.  Finding ways to reward CCOs for doing a good job seems like, well, a good job.

While I pondered all of this, I received a text message from a reporter at Oregon Public Broadcasting.  The message asked if I would be on the call-in show that day at noon.  The topic was whether more nurses are needed at Oregon State Hospital.  I agreed, thinking that I would say: "Yes!  More nurses would be very nice."

Two hours later, when the radio show got underway, a nurse from the hospital spoke about the need for more staff.  Fine.  But she went to say that the patients are dangerous and that staff are unfairly hamstrung by investigations of patient abuse and by limits on how often staff can tie down and lock up patients. 

I know that there are some patients that can be very challenging, and even dangerous, to staff.  But I also know that these are a very small percentage of the residents.  (I’ve got the data.)  It seems, however, that some hospital workers cannot resist the temptation to paint all the patients as dangerous and to use this claim to excuse unprofessional and sometimes bullying conduct. The hospital superintendent (i.e. "Management") was also on the show.  He sidestepped the abuse and restraint issues, saying that the hospital has enough staff but that they need more and better training.

Fast forward a few days to a report in The Oregonian (http://www.oregonlive.com/aloha/index.ssf/2012/09/oregon_state_bar_to_prosecute.html) that a district attorney and criminal defense attorney are being prosecuted for ethics violations by the Oregon State Bar.  They are accused of having a mentally ill man committed to the state hospital from his jail cell using a fictional law.  DRO had earlier investigated this situation because it appeared that the man had been discharged from the state hospital directly to jail where he languished for months without treatment.  We wanted to know why.  You can read our conclusions at: http://www.droregon.org/THE%20INCARCERATION%20OF%20DS%20-%20AN%20INVESTIGATIVE%20REPORT.pdf

It's common these days for newspaper stories to have a place for the public to comment.  After this article, I noticed that a number of people thought that the mentally ill man was not entitled to any rights, treatment or safety because he was accused of murder.  I also heard from a district attorney in another county who implied that it is unfair for lawyers to be held accountable for their actions when their intentions are good.  The intention here, he submitted, was to keep the public safe.

In today’s Oregonian, we have a third case involving a man with mental illness who gets caught in a dangerous custodial situation.  http://www.oregonlive.com/news/oregonian/steve_duin/index.ssf/2012/09/steve_duin_business_as_usual_a.html

This one involves a man who turned himself in to the authorities because there was a warrant for his arrest.  He had not appeared at a hearing because he was too disorganized to get there.  The authorities put him in jail and would not let him have his medications.  He went into crisis and was beaten and tazered.  Efforts by DRO to work with the county jail to find ways to avoid a recurrence were brushed aside.  It costs too much, they said.  Don’t blame us for a broken mental health system, they said.  You guys threatened to sue us, they said.

These recent events - as well as the recent US Department of Justice condemnation of Portland Police tactics - lead me to a modest (or so I think) suggestion.  Let’s all recognize that mental illness is, and always has been, a part of the human experience.  Let’s admit that this fact will not change by improving some “mental health system” that nobody can describe.  People will continue to have mental health needs and some will go into crisis for a variety of reasons.  So, I think, we must be prepared to respond in the most safe and humane way. 

What if health insurance and providers, public human services, schools, police, jails and unions consider how to modify their practices toward a common goal of heading off crisis and minimizing the risk of injury and trauma that comes with crisis?  Oregon’s health care reform efforts are, at least, talking about this.  If this conversation can expand beyond Medicaid to our public and private institutions, we could establish a coordinated approach that not only recognize the reality of mental illness but sees the human, community and fiscal benefits of minimizing the violence, trauma and stigma associated with crisis.

There is no doubt that working in a state hospital is a demanding job.  The responsibility that a district attorney has to maintain public safety is not an easy burden.  The same can be said for operating a county jail.  While these individuals must not avoid accountability for how they use their power over others, they must also be given the tools to use their authority wisely and safely.  Broad systemic reforms that reward outcomes, not defense of funding silos and special interests, are needed.  More money for the "same 'ol" just ain't gonna cut it.

I just read some remarks by Kathleen Sebelius, Secretary of Health and Human Services, that she gave to the Interagency Autism Coordinating Committee a couple of days ago.  This committee was created as part of an overall federal strategy to address autism and "create new opportunities for those living with autism and their families to reach their full potential."

While discussing the many initiatives that have been launched to address this goal, she also mentioned the effect of the Affordable Care Act (ACA).  She said:

"Now, thanks to the law, insurers can no longer deny coverage to children with pre-existing      conditions like autism and new plans must cover autism screening for children at no cost to parents.  The law will also ease the financial burden on treatment and care for people living with autism by allowing young adults to stay on their parent’s coverage until age 26 and putting an end to lifetime dollar limits on care."

This observation by Secretary Sebelius could apply to any health or disability condition.  Although the ACA has been so highly politicized that it is difficult to discuss without triggering intense emotion, it is important for individuals with disabilities to examine what it will mean for their "ability to reach their full potential."

The ACA, as we know, is Congress' attempt to reign in the spiraling cost of health care to individuals, businesses and government.  The US Supreme Court recently found that doing so is a proper role for the federal government as long as it is done in a constitutional way.  (The way of doing it, they said, could be by taxation but not by using the Congressional power to regulate commerce.)  But a secondary effect of the ACA will be to expand the civil rights of individuals with disabilities.

Of course, we have had the ADA for over twenty years and the Rehabilitation Act for almost twice as long.  But one huge exception under these laws has been discrimination in health insurance coverage.  Put simply, insurance companies have been allowed to discriminate against people with disabilities if they can show that it saves money to do so.  The only way to combat this discrimination has been through mandatory coverage laws such as mental health parity. 

The effect for people with disabilities has been to significantly add to their cost of living and create incentives for them to seek public support.  A person who could work may choose not to in order to keep health insurance.  DRO's Benefits Planning program (which Social Security just defunded) was designed to help people with disabilities find a way to work and maintain benefits.  Sadly,  the ADA did not touch this area of discrimination that has a major effect upon people's lives.

But now, the ACA says that insurance companies cannot deny coverage for people with pre-existing conditions.  They cannot throw a person off coverage because she gets too sick or costs too much.  They must fully cover preventive and diagnostic services.  They must provide coverage for mental health, chemical dependency, child vision and dental and "habilitation" services and devices. 

Habilitation is like rehabilitation except that the goal is not to return a person to a previous level of functioning but to help a person to maintain or achieve a higher level of functioning.  An example is speech therapy for a child with a communication disorder.

Contrary to the claim by some politicians that the ACA will give people stuff for free, health insurance will continue to cost money.  But policy costs will not be controlled by excluding people with disabilities and use of other discriminatory practices.  A fairer approach, seen here in Oregon, is the state's Health Care Transformation effort.  Oregon seeks to change the way health services are delivered in order to emphasize health maintenance rather than reward over-usage by some and exclusion of those who need services the most.

The ACA does not solve all problems for access to needed services but it points a way toward addressing the shared costs of our health care system in a fairer way.  Oregon is out front on these efforts.  This is good news. 

On Memorial Day, we give thanks to those who died while serving in the US military.  The holiday had its start during the Civil War and was originally known as Decoration Day, from the custom of decorating the graves of fallen soldiers.

On this day, I stop to recall the sacrifices made by our armed forces and I also think about others who have committed their lives to the pursuit of a more just society.   In the military, soldiers may be asked to put their lives on the line in pursuit of the "national interest" or some other seemingly abstract mission.  We honor them because their purpose was not to advance their individual desires but to further a collective, national interest. 

Similarly, those who work in publicly-funded nonprofits like DRO, deploy their skills to further a national interest for pay that does not approach the private market rate.  Usually, this does not require putting one's life on the line.  But as we learned this week of the death of Jennifer Warren, a mental health worker who was stabbed to death while delivering medication to a client, public service can have terrible risks.

That is why, this Memorial Day, I want to remember the sacrifices of Ms. Warren and all the publicly-funded workers who put it on the line every day to help their fellow men and women to live better lives.  I also want to acknowledge four Benefits Planners at DRO who are being laid off this month because the Social Security Administration couldn't get it together to reauthorize and refund the Work Incentives Planning and Assistance Program (WIPA). 

This is a program that helps people on Social Security return to work without unnecessarily risking their public benefits.  It has a great track record and nobody at Social Security or in Congress has voiced opposition to its continuation.  But they just can't get the reauthorization done in the present Washington climate.  And so our skilled, diligent and productive staff are out of jobs.  All are people with disabilities or family members who are uniquely suited to work with our clients.  But the national interest as defined above has seen fit to allow their sacrifice. 

For those in the military, this may sound familiar.  And so, this Memorial Day, I will keep all of our dedicated Americans in mind: those who have fallen in battle and those who have died or lost their livelihoods serving the public interest.

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.

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.

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

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.

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.

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

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.

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.

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.

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.