Representative Sara Gelser is giving a speech on the House floor in favor of House Bill 2834 which would close the Oregon School for the Blind.  "It's about holding on to the money that goes to the OSB that could be lost when OSB dies a natural death."  "Every student has a right to a free and appropriate public education. This is a very hard bill.  I wish I was not carrying this bill.  This has been discussed for two decades.  This bill contains the best plan developed."  She notes that the school does not provide an academic curriculum and its physical plant is in serious disrepair.  This bill will shift money that presently goes to OSB and put it in an account that will provide money to supplement services in local school districts.

Rep. Sprenger says she will vote yes but does not urge her fellow House members to vote one way or the other.  This is too personal an issue, in her opinion.

Rep. Boone reads a letter from a constituent who has a child at OSB and values it.  She will vote no.

Rep. Maurer speaks against the bill saying that the high cost per student at OSB is not as high as it appears when compared to some costs for students in regular school districts.  He says: "This is not over."

Rep. Clem speaks passionately against closure saying that the school was founded for use by disabled children.  It should remain so.  "I will not be an accomplice in closing this school."  He says that the state is at fault for letting the physical grounds deteriorate.  Equivalent services are not available in the community, he asserts.  He also claims, as did Rep. Boone, that OSB provides the least restrictive alternative for blind students because students in regular schools may receive services in a single school room.  He says that the bill's requirement that services in regular schools be "substantially equivalent" to OSB services is an "unfunded mandate."  Oregon, he notes, would be only one of four states that don't have a school for the blind if this bill passes.  Says that many OSB students may end up in foster care which will limit their ability to go home on weekends.  Rep. Clem agrees with Rep. Maurer that if the bill passes, "This is not over."

Rep. Barton speaks against the bill.  He says he disagrees with Rep. Gelser on this bill but he praises her for her work.  He says that signs were passed out that said "Vote no on Sara Gelser."  Rep. Barton says that this is an inappropriate personal attack.

Rep. Gelser closes, saying that funds will be available to assure that blind students will get the services they need.  She says that she has not received contact from anyone asking to buy the property.  Students, she says, should have the opportunity to learn in a fully accredited environment.  She notes that she is the parent of a child with disabilities and a special education advocate.  She knows the challenges but we must look to the future to provide the best services to blind students for years to come.  She urges a yes vote.

And now for the vote:  Wins 41 yea, 18 nay.

It's not my job to advocate on every bill affecting people with disabilities, that would be impossible.  Every bill affects folks in the disability community in some way because we are all citizens.  DRO only weighs in on legislation that directly affects people who are most likely to be our clients.  Yesterday, as most committees prepare to shut down, there was a lot to weigh in on.

At 8:00 am in Senate Judiciary, we had HB 2441 that would allow those who sexually abuse folks with developmental disabilities to be more easily prosecuted.  This bill is getting strong push-back from criminal defense and civil liberty groups.  Also on the docket was HB 2335, a bill that we don't care about except that it is being used as a possible vehicle for a variety of amendments that could be used to save the state some money.  The "-11 amendments" would eliminate client-requested hearings before the Psychiatric Security Review Board and extend a time limit for another type of hearing.  Both of these bill did not get a hearing because of time and were set over to today.

At 1:00 pm, the Ways and Means, Human Services Sub-committee heard SB 25 that would create an advisory board for Oregon State Hospital and HB 2442 that would create a Quality Care Fund to support training and technical assistance for group homes to achieve high standards of care.  Both bills were amended to remove fiscal problems and moved to the full Ways and Means Committee.

Then, at 3:00 pm, three separate committees were hearing bills that DRO has worked on.  In House Health, SB 16 was passed after last minute negotiations with the committee chair.  The original bill allowed advance health care directives to be used to authorize in-patient psychiatric care for people with dementia.  The committee chair wanted the bill to also allow any person to receive such care, not just folks with dementia (presently, the advance directive can't be used for this purpose - you have to use a "declaration for mental health treatment").  A compromise was struck to make the change only for people with dementia but to form a work group to explore other changes.

While that was going on, the House Rules Committee was hearing HB 2853, a bill that would require information about criminal convictions and civil and criminal commitments to be sent to the FBI for a national registry to prevent those convicted and committed from buying firearms anywhere in the country.  Many changes have been made to the original bill to address concerns of gun advocates and disability advocates (an interesting alliance).  Additional amendments will be needed before the committee will act on the bill.

Not to be outdone, the House Consumer Protection Committee heard SB 731.  It would assure that people who receive public benefits that are exempt from garnishment do not have to go to court to reclaim their exempt funds.  This bill would protect many of our vulnerable clients from losing access to money that they rely upon for food, housing and other essentials.  The committee adopted the bill's "-11 amendments" and passed the bill out.  [Careful readers will note the second occurrence of -11 amendments today.  Coincidence?]  This is one of those bills that will help many of our clients in a very direct way. Many thanks to Sybil Hebb from the Oregon Law Center for her skilled shepherding.

So that's enough, right?  Well, no.  Midway through the afternoon, we learned that our #1 priority, SB 874, had run into a technical problem.  This bill would conform state law to changes made by Congress to the ADA.  It has already passed the Senate and the House Judiciary Committee.  But the Legislative Council decided that the bill has to amended.  Another bill was recently signed by the Governor that changes a section of law that our bill affects.  If our bill is not amended, it will wipe out the other bill's changes.  So SB 874 is coming back to the Judiciary Committee today to be amended.  It will then go to the House floor for a vote and then go back to the Senate for concurrence (knock on wood).  Since the bill had a close vote in the Senate, we are not thrilled by this development.  But that's how things go here at the legislature.

If you don't know, DRO is part of a national network of Protection and Advocacy organizations.  Our national organization is appropriately called the National Disability Rights Network (NDRN) and is based in Washington, DC.  Every year, the directors of all 57 P&As are called to Washington for a conference.  We hear from federal officials, talk shop, and see colleagues who, in some cases, we have known for decades.

Since Washington is on eastern time, it always turns out that I continue to do my west coast job when it's east coast quitting time.  Today was no exception.

This morning, our group heard from Jeff Crowley who is the Senior Advisory on Disability Policy person in the White House. He said that part of his job is to create a new major AIDS policy and to assist in health care reform efforts.  When asked what it was like to work in the Obama White House, he said that the President does not dictate to staff.  He lets them grapple with issues.  "Great leadership does not eliminate politics and money problems but this president is willing to follow the science in our areas."

After some other issue briefing, I headed off for "the hill" where I met with staff from the offices of Senator Merkley, Senator Wyden and Representatives Schrader and Wu.  Besides talking health reform policy, my major points were the need for more P&A resources, Congressional action to address seclusion and restrain in schools, and blocking a bill that Barney Frank introduced to stop P&As from suing institutions to seek improved conditions.  (I know that last one seems hard to believe, but it's true.)

Then it was moonlighting time.  I went back to the hotel and wrote testimony for two bills that were heard today in the Oregon legislature.  I sent them off via email and then was able to watch part of the hearings on my computer via the legislature's video service.

Finally, I attended a fundraiser for NDRN.  The highlight of the evening was hearing remarks from special guest Lois Curtis.  Ms. Curtis was one of the plaintiffs in the landmark case of L.C. v. Omstead.  That's the case that found that the ADA provides a right to be free of unnecessary institutionalization.  Ms. Curtis was clearly thrilled to be here.

Tomorrow, I have a 7:00 am flight back to Portland where more fun awaits.

Greetings from Washington, DC!  I’m here to attend a conference and to visit some legislators. 

 It just so happens that today, the House Committee on Education and Labor held a hearing to examine abusive and deadly uses of seclusion and restraint in U.S. schools. Seclusion and restraint are physical interventions used by teachers and other school staff to prevent students from hurting themselves or others.  Here is some background.

 The General Accounting Office (GAO) recently testified before the Committee about allegations of death and abuse at residential programs for troubled teens.  About that same time, Oregon state officials initiated an investigation of such a program: Mount Bachelor Academy.  The results of that investigation are pending.

 DRO’s national organization, the National Disability Rights Network (NDRN) released a major report in January that exposed deaths and serious injuries resulting from the use of seclusion and restrain in schools.  It documented cases where students were pinned to the floor for hours at a time, handcuffed, locked in closets, and subjected to other acts of violence. In some of these cases, this type of abuse resulted in death.

 In response, the Committee asked GAO to (1) provide an overview of seclusions and restraint laws applicable to children in public and private schools, (2) verify whether allegations of student death and abuse from the use of these methods are widespread, and (3) examine the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained.

 In its testimony today, GAO found no federal laws restricting the use of seclusion and restraints in public and private schools and widely divergent laws at the state level. It found hundreds of cases of alleged abuse and death related to the use of these methods on school children during the past two decades. Examples of these cases include a 7 year old dying after being held face down for hours by school staff, 5 year olds being tied to chairs with bungee cords and duct tape by their teacher and suffering broken arms and bloody noses, and a 13 year old hanging himself in a seclusion room after prolonged confinement.

 Although GAO continues to receive new allegations from parents and advocacy groups, it could not find a single Web site, federal agency, or other entity that collects information on the use of these methods or the extent of their abuse.

 GAO also examined the details of 10 restraint and seclusion cases in which there was a criminal conviction, a finding of civil or administrative liability, or a large financial settlement. The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent; restraints that block air to the lungs can be deadly; teachers and staff in the cases were often not trained on the use of seclusions and restraints; and teachers and staff from at least 5 of the 10 cases continue to be employed as educators.

 The Committee heard from five witnesses who told tragic stories of death or injury related to restraint in school.  Committee Chair George Miller responded, noting that “approaches such as School Wide Positive Behavior Support can help establish a social culture and positive environment that uses data-driven decision-making to foster appropriate behavior and improve academic achievement.”

He concluded: "Congress must step in and fill the void that has resulted in scars that may never heal for these children and their families who have been victims of this abuse. I hope the next step will be to enact a federal policy to ensure the tragic stories we will hear today will never occur again."

 For more:  http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml

When Max Condradt was 17, he experienced a concussion during a high school football game.  His coach cleared him to play in a game the next week.  During that game he was tackled and, moments later, collapsed on the sidelines and slipped into a five month coma.  After he awoke, Max began a long period of rehabilitation.  Max's dad discovered that the helmet the school had provided was old and did not meet minimum standards.  He and Max decided to take action to help others avoid what Max has gone through.  Max, who now lives in a group home, and his dad worked with the The Brain Injury Association of Oregon (BIAOR) to bring a bill to the state legislature to assure that coaches are educated about brain injury and protect athletes from avoidable harm.

BIAOR has developed three bills for this legislative session:
1 – HB 2413  would add a $2 fee to the penalty paid for traffic violations.  The resulting funds would be placed in a brain injury fund to provide TBI support services
2 –  SB 381  would require all state-regulated group health insurance policies to cover cognitive rehabilitation.
3 – SB 348  would require all coaches at the elementary, middle and high school levels to have annual concussion identification training.

Yesterday, the House Education Committee held a public hearing on SB 348, dubbed “Max’s Law.”   I testified briefly before the committee, recalling an incident just last year in which a lawyer friend of mind fell and hit his head while we were playing basketball.  He was knocked out but soon revived and went to the sidelines to shake it off.  He then wanted to come back in the game.  He did, but after a few minutes of his wandering aimlessly around the court, we decided to take him to the hospital.  He had experienced a serious concussion.  My point was that even old coots like my friend (and I) don’t have the good sense to stop playing when we have our bell rung.

But as entertaining as I tried to be, the star of the hearing was Max.    Whatever deficits he may experience, it was clear that Max’s exuberance and sense of humor were not affected by his injury.  He inspired laughter and admiration in committee members who were at the end of a very demanding week of lawmaking.

 Max was a victim of “second-impact syndrome.”  After the brain sustains an injury it is highly vulnerable to more severe harm until it has had time to recover.  Experts note that "concussion produces an energy crisis in the brain. A second concussion will cause such an energy demand that it will overwhelm the survival capability of the brain."  Testimony at the hearing also noted that girl athletes now have a higher incidence of concussion than boys. Female players now experience about 29,000 concussions annually. Males have 21,000.

The committee passed SB 348 and sent it to the full House for a vote.  Since it has already been passed by the Senate, it will most likely become law.  Max, who was pumped by his legislative victory, gave me a hug as we left the hearing room.  I thought: Max was probably a good football player, he’s already a great advocate.

Here I am again at the legislature.  This time its the House Health Committee.  Senate Bill 16 concerns the question of whether an advance health care directive can be used to involuntarily hospitalize a person with dementia for the purpose of providing psychiatric treatment. 

Dr. Maureen Nash is the person who brought this issue to the legislature.  She says that there is a tsunami of people with dementia coming to Oregon as we age.  There will be a 90% increase in occurence of dementia in the first 25 years of this century.  Many may need psychiatric care.  She says that sometimes family members present health care proxies so that they can admit a loved one with dementia to Dr. Nash's hospital for psychiatric treatment.  But the lawyers for Dr. Nash's hospital (Tuality) say that the law does not allow a health care representative to place a person with dementia in the hospital for treatment.  The person with dementia is often unaware of the need for treatment.  This means a person must go through civil commitment or a guardianship proceeding.

Rep. Greenlick wants to know why the bill doesn't just eliminate the provision of the law that does not permit an advance directive to be used to commit a person to a psych hospital.  Dr. Nash says dementia is different from severe and persistent mental illness.

A citizen testifies that his wife appointed him to be her health care representative.  His wife had an early onset of dementia and he was unable to admit her to Tuality Hospital because of the exclusion of mental health treatment.  He finally obtained a guardianship so that he could make this type of decision.

Dr. Tina Kitchin from DHS testifies that she worked on the advance directive laws that were passed in 1993.  She notes that it is complicated and many different perspectives were involved.  She says that dementia was very much in mind to those who crafted the law.  The law was designed to be empowering for those who wanted some control over their lives.  She was surprised when she heard that some hospitals believe that they don't have the authority to admit someone with dementia for psychiatric care.  Recently raised concerns are being addressed by amendments.

 Oops!  I'm being called up to testify.

Well, I put in my two cents along with David Nebel who was representing the Elder Law Section of the Oregon State Bar.  Rep. Greenlick wants to get rid of the prohibition of using the health care directive to put a person in a psych hospital.  I said that this will be threatening to many people with mental illness but that if he tries to do it, he should make sure that the directive contains clear information that it may be used for that purpose.   More to come soon on this.

I'm sitting in the Oregon House Human Services Committee.  The committee is conducting an informational hearing about oversight of children's mental health programs.  Representatives Kennimer and Kotek have asked for the hearing. 

The programs are here to complain about redundant, burdensome and inefficient oversight.  Kim Thomas from Trillium is testifying right now.  He mentioned DRO as one of the ten or so agencies that oversee Trillium's activities.  He is now speaking directly to seclusion and restraint oversight.  Again, DRO is mentioned as one of the 4 agencies that Trillium must report to.

Janet Arenz from the Oregon Alliance of Children's Programs notes that Morrison Center has, in the past 6 months, spent 333 staff hours on audits and reviews.  Those reviews took 20.5 days.

Donna Keddy, Mike Morris and Janette Williams  from DHS are now speaking to the issue.  237 agencies are licensed by CAF.  After getting private health care agency license, AMH can certify psychiatric programs.  Oversight presently comes from CAF for health and safety, AMH for MH clinical services, SPD for seclusion and restraint, DD Services for health and safety and individual services plans, and OIT for protective services.

Psychiatric residential programs may have numerous contracts that have separate regulatory requirements.  Bruce Goldberg has asked for an efficiency review to eliminate duplication and redundancy.  An action plan is to be completed by July 31, 2009.  OYA and DHS consult with one another but it doesn't sound like duplication in oversight is addressed.  Rep. Kotek seems to be concerned about this.

Janette Williams notes that the state must fulfill requirements of multiple funding streams and multiple program requirements, e.g. DD does not allow restraint and OYA does not allow "hands on."  Mike Morris is testifying that he worked in hospitals for 20 years before coming to DHS.  He did not like the review processes when he was in that role.  Now, as a reviewer, he always seeks efficiencies.  He notes that very serious problems have come to AMH attention and they have had to close programs who had been certified by national accredidation organizations. 

Rep. Kotek asks if a waiver can be obtained from CMS to cut back on oversight requirements.  MIke Morris notes that some CHS requirements are not tied directly to funding.  He is not sure if CHS would allow streamlining of those requirments.  Rep. Kotek notes multiple reviews by state, county and MHO at Morrison Center.  She suggests that Medicaid funding structure should be reformed to cut down on duplication of required oversight.

Rep. Van Orman notes problem of staff turnover in these programs that can cause rule violations.  All agree.  Janet Arenz is now testifying again to push back a bit.  She says that her organizations' choice of business models is not as responsible for how oversight works as DHS might suggest.  Programs have just responded to what the state has sought to contract for.  Kim Thomas again testifies to the desire to have "a more consolidated approach" to review. 

My observation: Janet and Mike were the only ones to note the problems that have occurred in these programs despite the present oversight.  It would have been nice to discuss not only greater efficiency but also greater effectiveness.  I will make sure that this message is sent.

Recent news reports about the official sanction of, and guidelines for, torture (or, if you prefer, "enhanced interrogation techniques"), brought me back a couple of years to some work I did for the government.  I was on a monitoring team, checking out a Protection and Advocacy organization in the Midwest.  A member of the team had recently returned from Guantanamo where he had worked as a mental health therapist for prisoners.

Unable to resist, I asked him what it was like.  I had heard that many prisoners were attempting suicide or other self-harm.  He told me that all the prisoners received excellent care and that their psychiatric records were sent to Washington every day for review at the Pentagon.  He said that the prisoners were very scary, noting that having someone stare at you who you know would like to kill you was a chilling experience.

Recent documents that the government has released show that medical personnel were always present at water-boarding sessions in order to assure that the prisoner did not die in the process.  All treatment of the prisoners was under medical supervision.  This, according to defenders of the interrogation techniques, demonstrates that the interrogators were not truly engaged in "torture."

When I recently read that one of the prisoners who received a lot of "enhanced techniques" probably had a psychotic disorder, a number of thoughts came to mind.  These prisoners had been sent to a place that was out of the way where nobody could see what was happening.  They were often held in segregation even when known to be mentally ill.  While it is generally understood that segregation exacerbates mental illness, exacerbation seems to have been the purpose for all prisoners, not just those with mental illnesses.  The medical staff who were there to care for them were, at least in the case of the fellow I met, deathly afraid of them.  Those same medical personnel monitored enhanced techniques that were performed in order to protect society from harm. 

Defenders of the program seem to assume that inflicting mental and emotional pain cannot be categorized as torture.  Driving a person into psychosis and suicidal action is one of those items that does not seem to be considered as severe as causing organ failure.

Back here in Oregon, we put many hundreds of mentally ill people into jails, prisons and the state forensic hospital each year.  Many end up in segregation for behaviors associated with their mental illness.  The staff who oversee them are often scared of them.  Officials who are responsible for putting them in custody, often want them to stay behind high walls regardless of their mental condition or their risk of harm because the public is afraid of them.  All of these inmates and patients are under some form of medical care and supervision that is provided with the resources and in the environment at hand.

I am not suggesting that Oregon officials are engaging in torture.  But are we causing some of our fellow citizens unnecessary mental anguish in order to feel more secure?

The public is now turning to a debate of whether torture is justified if it can yield life-saving information.  How do we justify our treatment of Oregonians with mental illness?