The 2009 version of the Oregon legislature finished business last night with a flurry of activity.  It was a characteristic end to a hard-working and productive session.  However, a quick glance at the newspapers reaffirmed my expectation that the big story would be increased taxes.  Despite the fact that the legislature made $2 billion in cuts from projected service levels, the lead stories in the Oregonian only mentioned the last-minute reduction of $11.5 million from higher education. 

The fact is, we will see significant cuts in services that Oregonians with disabilities and their families depend upon.  But it will be hard to tell that story amid the tumult of the tax debate and the inevitable ballot measures designed to wipe out the new revenue and bolster the political fortunes of their proponents.

Back in 2003, the legislature took a different approach.  It decided to decimate human services budgets in order to avoid tax reform or tax increases.  About 100,000 Oregonians lost their health insurance, the infrastructure for delivering mental health and addictions services was severely damaged, thousands of seniors lost their support services, schools went begging.  But there were no ballot measures to challenge the legislature back then. 

Although touted as the "people's voice," ballot measures cost money.  Instead, some organizations like Legal Aid and DRO filed law suits on behalf of vulnerable Oregonians to attempt to stop or slow some of the worst cuts.  While we had some small, technical victories, we were not able to stop the cuts.  Judges were hesitant to substitute their judgment for that of the legislature.  Close calls went to the elected officials.

This time around, we have three major tax increases.  They target corporations, high earners and hospitals/health insurers.  The first two are most likely to be challenged by ballot measure.  The other is really a fancy way to leverage more federal Medicaid funds and should not have a significant fiscal impact on those taxed.  You may hear differently when health insurers cite the tax as a reason to increase premiums and decrease reimbursement rates for providers.  My advice is to keep your eye on their profit margins rather than their justifications.

Overall, the legislature deserves high marks for its labors. Despite the difficult financial times, some excellent bills were sent on to the Governor and budgets were constructed in a fair and open manner.  DRO is particularly pleased that a bill to bring Oregon law up to date with the federal ADA Amendments Act has been signed into law.  We worked with the Bureau of Labor and Industries to craft and promote this legislation and received invaluable assistance from Senator Floyd Prozanski to get it through the process.

Now that the session is complete, we here at DRO are writing a summary of legislation passed this year that particularly affects Oregonians with disabilities.  We'll let you know when it is complete and is posted here on the Disability Rights Oregon website.

I attended a "friend-raising" breakfast this morning for United Cerebral Palsy Association of Oregon & SW Washington.  I've always been impressed by UCP and their director, Bud Thoune, for their high standards and dedication to the lives of the people they serve.

This event did not change my opinion.  On the ticket for the event are listed five principles: Be Visible, Be Independent, Be Involved, Have Friends, Make a Difference.  What a clear expression of how people with disabilities, families and advocates can act to achieve inclusion!  Disability will never be accepted as a normal part of life unless people with disabilities are visible, independent and involved.

We at DRO have been doing our part to be more visible in promoting the rights of our clients and communicating a disability rights perspective to a widening community.  In that spirit, I'm letting you know that Bud reminded us breakfasters that we just marked the tenth anniversary of the Supreme Court's Olmstead decision.  In Olmstead, the Court found that the ADA prohibits unnecessary segregation of people with disabilities in institutions.  That's right.  Congress said, and the Supreme Court agreed, that isolation, dependence and hopelessness must not be promoted by government policies. 

Everyone deserves the chance to lead a meaningful life.  With the love of his family and support from UCP, A.J. will have that opportunity.  But isn't it shameful that a school district would not do what it can to contribute to this simple, yet profound, goal?

Guest speaker Art Edwards brought home the message of inclusion.  Art is a new member of the UCP Board and a reporter for KOIN.  He told us about his family, including his teenage son A.J. who experiences CP and occasional seizures.  His family is about to move to Tigard because its schools have a more inclusive educational approach than their present school system in Beaverton.  Art talked about life with A.J. including A.J.'s strategic use of the horn on his power wheelchair, his love of baseball, and his delight in yelling "flugelhorn!"  The whole family -- Art, his wife and daughter -- are dedicated to A.J. and are willing to make the sacrifices required for him to thrive.  For example, Art's daughter is accepting the move to Tigard because "it will help A.J."

When DRO changed its name last year, we came up with three words that evoke our vision: Opportunity,  Access & Choice.  Above all, I think that Olmstead, the work of UCP and the hopes of A.J. and his family are about opportunity. 

Everyone deserves the chance to lead a meaningful life.  With the love of his family and support from UCP, A.J. will have that opportunity.  But isn't it shameful that a school district would not do what it can to contribute to this simple, yet profound, goal?

Congress enacted IDEA in 1970 to ensure that all children with disabilities are provided  a free appropriate public education [FAPE] which emphasizes special education and related services designed to meet their unique needs and to assure that the rights of such children and their parents or guardians are protected.

 A reading of the Act that left parents without an adequate remedy when a school district unreasonably failed to identify a child with disabilities would not comport with Congress’ acknowledgment of the paramount importance of properly identifying each child eligible for services.

 It would be particularly strange for the Act to provide a remedy, as all agree it does, when a school district offers a child inadequate special-education services but to leave parents without relief in the more egregious situation in which the school district unreasonably denies a child access to such services altogether.

 That IDEA affords parents substantial procedural safeguards, including the right to challenge a school district’s eligibility determination and obtain prospective relief is no answer. The review process is ponderous and therefore inadequate to ensure that a school’s failure to provide a FAPE is remedied with the speed necessary to avoid detriment to the child’s education.

 [T]his case vividly demonstrates the problem of delay, as respondent’s parents first sought a due process hearing in April 2003, and the District Court issued its decision in May 2005—almost a year after respondent graduated from high school.

 States expressly agree to provide a FAPE to all children with disabilities. An order awarding reimbursement of private-education costs when a school district fails to provide a FAPE merely requires the district “to belatedly pay expenses that it should have paid all along.”

 Parents are entitled to reimbursement only if a federal court concludes both that the public placement violated IDEA and the private school placement was proper under the Act.  And even then courts retain discretion to reduce the amount of a reimbursement award if the equities so warrant—for instance, if the parents failed to give the school district adequate notice of their intent to enroll the child in private school. In considering the equities, courts should generally presume that public-school officials are properly performing their obligations.  As a result … parents who “unilaterally change their child’s placement during the pendency of review proceedings, without the consent of state or local school officials, do so at their own financial risk.

 [W]e conclude that IDEA authorizes reimbursement for the cost of private special education services when a school district fails to provide a FAPE and the private-school placement is appropriate, regardless of whether the child previously received special education or related services through the public school.

 When a court or hearing officer concludes that a school district failed to provide a FAPE and the private placement was suitable, it must consider all relevant factors, including the notice provided by the parents and the school district’s opportunities for evaluating the child, in determining whether reimbursement for some or all of the cost of the child’s private education is warranted.

The headline in the June 14 Oregonian reads: "Prenatal testing goes to court."  The accompanying article describes a Portland couple suing a doctor for $14 million to cover the costs of raising their daughter, who was born in 2007 with Down syndrome.  The suit alleges that the doctor assured the couple their child would not have the disability. The couple says that had they known of the condition, they would have chosen abortion. Read more about the suit on OregonLive. 

Similar lawsuits -- called “wrongful birth” and “wrongful life” cases -- have raised complex legal, ethical and moral issues across the country.  Some would say that a botched prenatal test is like any other mishandled medical procedure and should be treated as medical malpractice.  Others would ask if a person can truly be damaged because she is alive.

One sentence in the article particularly grabbed my attention:  “Several studies show 90% or more of women who discover they’ll give birth to a baby with Down syndrome choose to have an abortion.”  Angela Jarvis-Holland of the Northwest Down Syndrome Association comments that this seems to reflect a “tyranny of perfection.”  As medical science advances, parents will be able to test for “virtually every conceivable disadvantage facing their fetus.”   Will parents of the future sue their doctors if their child does not have the desired height, athletic ability or IQ? 

 An approach to addressing these issues is contained in a section of the Pregnant Women Support Act (S.270), now pending in the U.S. Senate.   It would require health care providers to provide information to parents who receive a positive test result from a prenatal test for Down syndrome.  That information is to include written, up-to-date, scientific information about the syndrome and referral to support services including a hot-line, website, peer-supports and national registry of adoption options.

One’s view of this proposal is bound to be highly affected by one’s position in the larger abortion debate.  But if I can gingerly sidestep that issue, I would like to raise the relationship of  “wrongful life” cases to health care reform.

 I wonder: What if everyone had insurance that covered the additional costs of raising a child with disabilities?  What if there were no fiscal incentives to abort a child with Down syndrome? It would not affect the choice of a person who only wants to carry a child that has a good shot at Harvard or the Trail Blazers' roster; but it could save us from putting a negative price on life.

When Fairview Training Center was slated for closure, many parents spoke with me about their feelings of betrayal.  They had placed their child in the institution many years, sometimes decades, ago.  When they made that difficult choice, they had been assured by the state that Fairview would always be there for them.  Many parents had become very involved with the institution.  They knew the staff, the management and the residents.  They were part of a community that understood what it is like to be developmentally disabled.  Their child would be permanently protected from the ignorance, disinterest and, sometimes, hostility of the outside world.

The process of closing Fairview was slow and painstaking.  Highly detailed assessment and planning was completed for each resident.  Parents were introduced to community alternatives and were encouraged to visit sites, talk with staff and other parents and to participate in transition planning.  Parents and advocates participated in all stages of the transition including membership on a board that oversaw the process.  Over the years, trust was reconstructed in the step-by-step process of establishing new relationships and experiencing the benefits of community living.

Parents are now having similar experiences in the wake of the legislature's vote to close the Oregon School for the Blind. In his guest blog entry, "Welcome to the Real World of Special Education" Michael Bailey eloquently describes the impact.  Closing this venerable institution that promises to provide highly specialized services to children with vision impairments and co-occurring conditions feels like a betrayal.  Children who became students at OSB because their community failed to serve them adequately are now being told to go back to the scene of their neglect.  And, unlike Fairview, there will be no long, deliberate process for developing new relationships and establishing at least some tentative trust.  The school will close by September 1, 2009.  All transition plans must be completed by August 1.

My view is that people with disabilities are better served in their communities.  Institutions were created in the 19th century with the best intentions of shielding residents from the rigors of society.  But the ideal societies that were envisioned became insular dead-ends for lives that could have experienced and contributed much more.  I have seen, however, community services that fail to achieve their promise due to inadequate funding, lack of access to talented professionals, lack of experienced and well-trained personnel and lax oversight.  Just as no person is immune from failure, the same can be said for service systems.

Are we, as Michael suggests, hurting children in pursuit of a ideal that cannot be realized?  I can't adopt that viewpoint without conceding the futility of achieving a truly inclusive society. Defending both OSB students and our movement toward integration are not incompatible goals.  That is why transitioning OSB students must be provided the resources, expertise and advocacy that is necessary for their success.  Expecting them and their parents to make this abrupt change without a total commitment to success by school districts, the state Departments of Education and Human Services, and disability advocates would indeed be a betrayal.

The plan to close Oregon's School for the Blind illustrates the alternative worlds of Special Education in Oregon. One is an imaginary world populated  by the Oregon Department of Education and those advocating for closure. The other is the real world the rest of us live in.

All people with disabilities are better served and have happier lives in their own communities. No one  needs to live with institutional care. That said, it is not progress to move unwilling people from a setting deemed politically incorrect into a community setting unless real supports are in place. These are human beings we are dealing with. Not budgets, not strategic plan goals and not an empty box on a to-do list. And community education supports for hundreds of blind and visually impaired children are most definitely not in place. Nor are they going to be. To think otherwise is just wishful imaginings.

I know a young man who is blind and deaf. For years his able mother struggled with all of her considerable might to find appropriate services in a Washington County school district. That district, like all districts, could not begin to meet his complex needs. Finally he enrolled in the School for the Blind and blossomed into a healthy, happy and vigorous young man.

Tragically, his mother has since died.  Closure of Oregon's School for the Blind means he'll return to the same school district that failed him before, but without his mother to advocate for him.

It is easy to dismiss human tragedy as 'anecdotal' evidence. To me the human cost is the only cost.

I have been a volunteer advocate at literally hundreds of Individual Education Program meetings. These create written plans and placements for special education students. I can attest to the lack of classroom resources, educational assistants, related services personnel, assistive technology and vocational training. The results are stifling and restrictive placements in what my daughter with Down syndrome derisively calls "happy gatherings" -- a chaos of snacks, games and 'field trips' to the park. The only real outcome being the perpetuation of the social isolation suffered by Americans with disabilities of all ages.

In the imaginary world of politics and special education administration, there may be a belief that all of this can be somehow fixed in the short version 2010 legislative session. Or maybe the one after that. But for those families whose lives are uprooted, September looms near and large. And with that comes diminished services, overwhelmed districts with no resources or expertise and a nagging sense of loss.

A  year or two in political time may be short. In the life of a young person it is long.

To the families of the children formerly receiving good services at the School for the Blind all I can do is sadly welcome you to the real world of special education. None of us will ever know what happened to that money this closure was advertised as saving. But I assure you that it will not be available when your child actually needs a real education.

The opinions expressed here are those of the author and not of Disability Rights Oregon.

I sit again in the audience at the House Human Services Committee where the superintendent of Oregon State Hospital, Roy Orr, is discussing the state of the facility.

Roy notes that in Nov. 2006 the U.S. Department of Justice informed the state that it believed OSH was violating the civil rights of patients.  DOJ then brought a survey team to OSH and produced a report that was delivered to the Governor in January 2008.  The report criticized the hospital's old physical plant, poor quality of care, vacancies of key positions, extraordinary and chronic reliance on overtime, and heavy reliance on contract staff.  In response, OSH created a 250 page correction plan.  Roy says this plan is the hospital's "roadmap toward a different future."

Roy thinks OSH has made significant improvements since that time.  He notes that there have been ongoing settlement discussions with DOJ.  Drs. Geller and McLoughlin were hired by the state as consultants to help with changes.  The state does not want to lose control of the hospital to a judge, as occurred in Hawaii.  DOJ will be back here in late July to resurvey OSH.  Roy says he welcomes the visit.  He thinks they will find a very different hospital.

Roy says that as improvements move forward, they are guided by three major themes: need to improve quality of care, need to improve hiring, and building the new hospital.  He then moves through a variety of specific improvements including a 75% reduction in use of restraint and a 80% reduction in use of seclusion.  He says OSH is now "at or below" the national average for use of seclusion and restraint.  Also, he is proud to note that OSH received full accreditation from The Joint Commission in April, 2009.

 The committee clearly welcomes all this good news.  But I know that there have been a series of lock-downs at OSH during the past four weeks due to overcrowed conditions.  DRO has complained that these lock-downs are being used as group punishment to create peer pressure on those patients who have gotten out of line.  We think the staff on the ward are scared about losing control when they have too many patients to care for.  We surmise that patients have not been moved to other wards because the other wards are allowed to reject transfers.

To their credit, hospital administrators have been responsive to our concerns and are taking steps to review their entire lock-down and ward transfer procedures.  But, as I listen to Roy's encouraging testimony, I know that we are not yet out of the woods.

Many, many years ago.  Back when Vera Katz was Speaker of the House and the legislature decided to take a crack at setting new limits on gun ownership, a bill emerged that would prohibit people who had been civilly committed from buying, owning or possessing a firearm.  The country was still reeling from the acts of John Hinkley and politicians wanted to make folk feel safer, however illusory that safety might be.  I argued at the time that civil commitment was a a poor standard to use to judge ability: many people were committed who were not dangerous and the whole purpose of commitment was recovery.  To my amazement, legislators were willing to compromise the point.  A provision was added to the mental health commitment law that allowed a judge to bar gun ownership but such a prohibition would not be automatic.  A process was also put into place to allow those who had been barred to show, at a future point, that they were no longer a risk.

Four years later, I was not so persuasive (or lucky).  The legislature established a permanent ban on gun ownership in Oregon for those who are committed because of mental illness.  What most people in Oregon didn't know was that the federal government had outlawed gun possession by committed people long before any of these laws were enacted in our state.  Oregonians were not unique in this knowledge gap.  The feds had never done much to let people know.

But then came the Virginia Tech shootings and Congress decided to take stronger action.  It created a nation-wide, FBI registry for conviction and commitment information.  Law enforcement and firearm merchants will be able to use the registry to determine if a person is prohibited from having a gun.  But this won't work unless the information gets to the FBI.  And that's where House Bill 2853 and my deja vu moment come into play.

Governor Kulongoski learned that only two Oregon records were in the FBI registry and that the Oregon State Police would lose a bunch of federal grant money unless we got with the program.  This prompted a rush of work to put together a bill (sponsored by Rep. Galizio) that would require the collection and transmittal of the required data.  And when various stakeholders were brought together to discuss the bill, I was there saying the same things I had said back in the late 1980s.  Again, to my amazement, there was flexibility in the state's position and after many hurried compromises, amendments and hearings, a bill got out of the House Rules Committee.

I don't know how you feel about firearms.  They are not at the top of DRO's agenda.  But the US Supreme Court has found gun possession to be a a fundamental right and a bunch of folks in Congress have earmarked "persons adjudicated as a mental defective or those committed to mental institutions" as being unworthy of exercising this right.  The original Oregon bill would have gone further to include people who were in the state hospital for only evaluation and those found incapable of facing criminal charges due to their young age.  It did not provide a way for a person to demonstrate that he should no longer be barred, did not provide a way to expunge a commitment and did not require notice to those who might be affected.  When it came to people with mental illness or developmental disabilities, life-long incapacity and dangerousness was assumed and need not be proven. 

More will need to be done to balance public safety and individual rights in a manner that is not discriminatory. As is often the case, disability discrimination arose in Congress and in HB 2853 from unfounded assumptions about people's abilities.  Rep. Sara Gelser, a Rules Committee member, said it best: People who have never committed a crime or hurt anyone should not lose a constitutional right because they have a disability.