Creating Oregon's advance directive for health care in1989 was one of the first issues I worked on in the Oregon legislature.  My role was to assure protection of people with disabilities and mental illness in "surrogate decision-making."  The bill finally passed after many, many hearings, some contentious and emotional. 

Talking about death in public, I learned, is not an easy thing.

Four years later, Disability Rights Oregon (then Oregon Advocacy Center) played a central role in drafting a bill to create an advance directive for psychiatric care.  This bill did not touch upon end-of-life decision-making, yet fears still ran high among many consumers of mental health services that an advance directive would be used to force them into treatment and institutionalization.  Many, many safeguards were put into place to allay those fears.

Since then, I've followed discussions and studies about advance directives.  In Oregon, psychiatric advance directives are hardly ever used because doctors won't accept them.  Nationally, doctors accept health care directives less than half the time.  Studies show that white, middle and upper-middle class people are far more likely to use advance directives.  One explanation is that minority and low-income individuals are less likely to trust doctors to treat them fairly and are more likely (particularly immigrants) to believe in miracle cures.

I'm sure you know where this is leading: to the present health insurance reform debate.  I'm not going to talk about the "death panel" thing.  What more can one say?  I'm more interested in the trust thing.  Why are so many people convinced that expanding health coverage through government action is a scary proposition?  Many of these folks must have had the experience of being turned down for coverage or payment by their private insurer.  Most must have had a friend or family member denied.  Why are they not upset about that?

Perhaps one answer hearkens back to those studies of advance directive usage.  Remember that minorities and low-income folks are less trusting of professionals who they feel may devalue them.  But what if the tables were turned?  What if the main proponent for changing how health decisions are funded is an African-American with a Harvard education?  Private insurance companies, in contrast, seem to have no ethnic identities or motives other than making money.  Does health insurance reform seem like just one more threat to people who are used to being in the majority but whose complacency is being eroded by increased national diversity?

People with disabilities have always been concerned that their lives are devalued by medical personnel.  The evidence to support this fear is plentiful.  In an earlier posting, I discussed the work of philosopher Peter Singer and his proposal to treat a quadriplegic's life as half as valuable as an able-bodied person's life.  (Consider the similarity with the US Constitution that originally designated slaves as 3/5 of a human being.)  The demand of any minority population is not to be judged according to standards that dismiss its equal value.  Perhaps the demand of a majority population is to retain its perceived  advantage.

Advance directives are specifically designed to give people more personal choice in how decisions are made about their health care.  But many people who came to the legislature back in the day thought that directives would do just the opposite.  In the health insurance debate, some people feel that having more choices of coverage will eventually take away their choices.  In both cases, some feel that being given a choice means that one's choice may be coerced.  They may feel that it is better to leave these decisions to some other realm.  But that is also a choice.

It took over 10 years to get a mental health parity bill through the Oregon legislature.  But it happened. 

In 2005, Gov. Kulongoski signed into law Senate Bill 1, which said that beginning on January 1, 2007 state-regulated group health insurance policies must cover mental health and chemical dependency treatment at the same level as physical health services.  

In the years leading up to the parity law, private insurers and business interests insisted that it would cause insurance rates to skyrocket, leaving business owners no choice but to drop all insurance coverage for their employees. Advocates countered that parity would in fact save money. 

How so? Because untreated mental illness and addictions result in physical health ailments, parity advocates predicted that providing treatment in a timely manner, before costly hospitalization became necessary, would be cost-effective.

Who was right?  Although it might be too soon to say for sure, a recent report from the Oregon Department of Consumer and Business Services is making the advocates look pretty good.

The report compares claims from 2006 (before parity) and 2008.  The data show that claims for outpatient mental health visits went up 17.9% while claims for inpatient mental health treatment went down 6.2% and claims for residential mental health went down 30%.  Claims for both outpatient and residential chemical dependency treatment went up but had very little impact on the overall cost of health insurance. 

According to the report, “there appears to be relatively little impact to total healthcare claims costs.  Mental health costs remained at a little over 3.1% of insurers’ total healthcare claims costs, and insureds actually saw a small decrease in the relative percentage of overall costs attributable to mental health claims.”

So the data show more outpatient visits, fewer hospitalizations and cost neutrality.  Yay, advocates!  The fears promoted by businesses and the insurance industry have, so far, proved baseless.  This is a good example for us as the broader health insurance reform debate rages on.

We are deeply saddened to hear of the death of Senator Edward M. Kennedy.

The importance of Senator Kennedy to the disability rights movement cannot be overstated.  He has been our champion for decades.  It will take volumes of scholarship to fully document his importance to our community and the nation as a whole, but let me give you a highly abbreviated taste of what he accomplished for us over the past 40 years.

1975:  Cosponsored the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities.

1975:  Cosponsored legislation to create a “bill of rights” for people with developmental disabilities, providing funding for services for people with this type of disability, supplementing funding for affiliated university facilities and creating state-based systems of protection and advocacy groups in all 50 states.

1978:  Cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability.

1978:  Strongly supported the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978 establishing a functional definition of developmental disability, creating the National Council on the Handicapped and the National Institute of Handicapped Research, setting a funding minimum for protection and advocacy services and authorizing a grant for independent living services.

1980:  Cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution.

1982:  Cosponsored the Job Training Partnership Act, designed to break down barriers facing “economically disadvantaged” individuals including people with disabilities and assuring that people could not be excluded from the training program based on a disability.

1982:  Cosponsored legislation allowing states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

1984:  Cosponsored legislation requiring polling stations to provide physical accessibility and registration and voting aids for people with disabilities.

1986:  Cosponsored the Air Carrier Access Act requiring facilities and services to be accessible to people with disabilities traveling by air.

1986: Cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act.

1986: Cosponsored the Handicapped Children's Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act.

1986:  Cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families and promoting preschool programs for children ages 3 to 5 with disabilities.

1988:  Introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children.

1990: Cosponsored a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology.

1990:  Introduced (with Senator Harkin) the Americans with Disabilities Act prohibiting discrimination against individuals with disabilities.

1990: Introduced the Ryan White CARE Act which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care.

1991:  Sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration.

1997:  Cosponsored amendments to IDEA directing inclusion of special education in state and district-wide assessments, promoting mediation as an option to disputes between teachers and parents of children with disabilities, providing that special education students be disciplined in the same way as other students, continuing services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and requiring charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

1998: Cosponsored the Crime Victims and Disabilities Awareness Act of 1998 directing the Attorney General to conduct a study of crimes against people with disabilities.

1999:  Cosponsored the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

2004:  Cosponsored the Assistive Technology Act which supports states in to sustain and strengthen the capacity to meet the assistive technology needs of individuals.

2004: Sponsored the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

2006:  Won a 5-year-long battle to pass the Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

2008:  Championed mental health parity legislation assuring individuals living with mental health and substance abuse issues that their mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements.

2009: Succeeded in having the CLASS Act included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide elderly and disabled individuals with a daily cash benefit to purchase services and supports they need to remain in and be a productive member of the community.

 These accomplishments amount to a virtual history of the disability rights movement.  For this and so much more, we salute and thank Senator Kennedy.

At about the same time I was writing about Singer's article, The Washington Times was accusing Congress and the President of seeking to emulate the Nazi extermination of people with disabilities by creating a system of mandatory euthanasia.

This characterization of voluntary end-of-life counseling is conceived, of course, as a way to defeat health insurance reform and, in doing so, the present administration.

Then came Bill O'Reilly, who told viewers that Oregon has one of those "government-run universal health plans" that denied a dying woman coverage for a treatment that would prolong her life, but would pay for her to kill herself.  This, he said, was an example of a heartless government that would rather save money than lives. 

Although O'Reilly got virtually every fact wrong in his story, he did inspire one viewer to send the Chair of the Oregon Health Services Commission a Jello box filled with a mixture of blood and excrement.  Other less creative souls have resorted to the more mundane email and web-posted threats.

In a letter printed in today's New York Times Magazine, F.M. Kamm -- professor of Philosophy and Public Policy at Harvard's Kennedy School -- criticized Singer's analysis of disability and the value of life. Kamm made the same (albeit more sophisticated) point about disability discrimination that I did right here on the DRO Blog.  In doing so, he cites the "discredited rationing plan in Oregon" as the product of "morally mistaken reasoning" that can lead to prioritizing the treatment of relatively minor health problems over those that are life threatening.

I did a bit of research and found that Kamm was referring to the Oregon Health Plan (OHP) before it altered its methodology in response to concerns by the first President Bush's administration that it violated the Americans with Disabilities Act. Kamm's letter, in fact, was not an attack on "rationing"; rather it was an appeal to "allocate scarce resources" in a way that is "morally better" than that suggested by Singer.

Herein, I think, lies the problem faced by proponents of health insurance reform: Those who support health care reform debate the finer points of philosophy, finances and moral nuance. Opponents of reform can simply yell that they should get what they want: immortality, or at least, to not be reminded that living forever is not on the menu.  Opponents capitalize on the same impulses that keep people from writing wills: fear and avoidance of the unpleasant. You see, if we don't write it down, it might not happen and if it does happen, surely someone else will do the right thing by us.  It reminds me of something Woody Allen said: "Death doesn't really worry me that much, I'm not frightened about it... I just don't want to be there when it happens."

The lady in the O'Reilly story really did have terminal cancer and wanted the OHP to pay for a treatment that had a five percent chance of extending her life for a modest period.  Her story reminded me of my step-mother who, some time ago, was diagnosed with end-stage lung cancer.  Her doctor said there was a medication that might extend her life, but it was still experimental.  She had very good private insurance and Medicare. Neither would pay for the treatment.  My father, who felt obligated to do whatever was possible, laid out about $20,000 for the medications, which had no effect.  September 12 will be the fifth anniversary of her death.

Unlike the OHP lady, my stepmom did want end-of-life counseling.  She didn't think that having the ability to make choices meant that she was being subjected to a "death panel".  My dad chose to use his money (he didn't ask for mine) on a long-shot that no objective viewer, public or private, would gamble on.  His money, his choice.

And so to my point: laws to prevent discrimination against people with disabilities must be fully enforced to achieve both legal and moral outcomes in health care reform.  Lies, distortions, threats and fear-mongering do not promote the opportunity, access and choice that are fundamental to disability rights.  Opponents say that people cannot be allowed to choose the type of health plan they want and cannot decide whether or not to receive end-of-life counseling, which leads me to my final celebrity quote for the day.  Perhaps opponents of health reform think like Jack Nicholson's character in this exchange with Tom Cruise from the 1992 film A Few Good Men:

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.