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:

As reported earlier this week, Richard Harris from the Addictions and Mental Health Division (AMH) emailed an open letter to the mental health community in answer to the question: Why Zero?  The Why Zero? Campaign wants to know why an Office of Consumer Affairs has not been funded.  Richard replied that AMH  has long supported a consumer office but its requests for money have never made it into the Governor's budget.

David Oaks from Mind Freedom now has his own response: Let's all ask the Governor, Why Zero?

For more, visit MindFreedom at:  http://mindfreedom.org/zero

Every Tuesday morning at DRO, all of our attorneys and advocates meet with our intake specialists to review the calls we received during the past week and decide what cases we can accept.  The volume of requests is so great that we only open cases for a very small percentage of those who ask for our services.  This is a difficult process for our staff because we hear so many problems but can only take action for a few individuals.  As you might expect, some problems take a lot of time, effort and money to address -- for example, through litigation.  Some problems can be solved fairly easily.  But sometimes it's hard to tell, at the outset, which is which.

A couple of weeks ago, our intake specialist George Schall told us that he had received a complaint that taxi cabs were regularly blocking access to curb cuts at the Portland train station during busy hours.  Our attorneys felt that this was a clear violation of the ADA but that addressing it with  formal legal legal action would be a very big undertaking.  Everyone's plates were  overflowing with cases, leaving little room initiate a major piece of federal litigation. 

Being a creative and resourceful group, however, they decided to make a few phone calls in hopes that the problem could be resolved without legal action.

In fact, it could. And it was. 

By the end of the day, authorities from the city and the train station had provided us with guarantees that they would police the sidewalks to assure that the curb cuts remained accessible and inform cab companies that they would be barred from the station area if they continued to block access.

Problem solved.

What I've just described triggered a few thoughts.  It was great that we could get this result so quickly for our client.  Being able to do so speaks well for our skill and reputation in the community.  But our lawyers were hesitant to take the case in the first place because of already heavy work loads. 

That's a shame.

I receive complaints from time to time that DRO does not handle enough cases or file enough lawsuits to "make a statement" even though the cases would have no chance of winning.  I respond that we offer a free service to every Oregonian with disabilities and, by golly, lots of folks with legal problems like the sound of a free service: they call us.  I note that we have not received a boost in our federal funding for five years and that the state has never provided us with support. I also share the fact that our staff members work here because they are dedicated to our mission. 

Attorney salaries in the Oregon Attorney General's office are twice (yes, twice) what we pay.  I will gladly put the skills and experience of our lawyers up against them at any time. 

So, I am glad we were able to get results for our client and for others who need to get to the train station.  I am glad that we have skilled intake specialists, advocates, attorneys and support staff.  And I am glad that we work to use our resources wisely to get the most results we can for our clients. 

But I also wish we could do more.

If, like me, you would like DRO to do more, remember that we gratefully accept donations.  And as the story above illustrates, we use our resources efficiently and effectively.  Donations in support of DRO's work are sound investments in promoting the rights of people with disabilities.

Thanks, in advance.

Yesterday, I received an email from the state Addictions and Mental Health (AMH) Division entitled: “Why Zero? Followup”.  Attached was a letter from Richard L. Harris, Interim Assistant Director. (Click here to read the letter.)  I was not the only recipient.  The email was sent to well over a hundred people, outside and inside government.

Here are some quotes:

"AMH has supported restoration of the Office of Consumer Affairs every budget cycle since the program was cut in the last round of budget cuts in 2003.  AMH fully supports this concept and we will continue to do so.  It is unfortunate that the proposal has not made it through the next steps of the process.  But the decision not to fund this program has not been made by AMH.  Others in the process have not made this a priority."

"AMH wants to work with the consumer movement to obtain the necessary support from key legislators, the Governor, stakeholders and other advocates in championing a new Office of Consumer Affairs.  Without champions in the legislature and the Governor, the possibility of getting this program restored is doubtful.  AMH cannot be the sole 'official' entity advocating for this concept."

Here is my commentary:

In a public world in which “transparency” and “accountability” are constantly touted as positive values, the state budget process is opaque and evasive.  Yes, I admit to knowing some of the basics.  The agencies (such as DHS) submit budget proposals to the Governor.  The Governor decides what to propose to the legislature.  The legislature then hears from agencies (that must support the Governor’s proposal) and citizens and makes the final decision.  Later on, agencies do things like “reshoots” and “rebalances” and money is shifted around to address bulges and gaps.  There are also things like “continuing service levels,” “essential budget levels,” “Christmas tree bills” and “roll-ups” whose workings seem to be understood only by people in capes and pointed hats.

In addition to state general funds that get the lion's share of attention, there are also federal match dollars, grant funding and, for AMH, block grant funding.  And there are probably a lot of things I have not mentioned or know about.  And that is the rub among advocates.

It can appear to a mere mortal that huge sums get allocated and spent (or not spent) mysteriously.  And there are often no fingerprints to show who made the critical decisions.  Note in the first paragraph that I quoted above, Richard is clear about who is NOT responsible (AMH) but vague about whom IS responsible.  This isn’t because Richard is hiding the ball; he’s just reporting how things work.

His advice is sound, at least for state general funds.  One must work tirelessly to move any proposal higher on the state's priority list.  Will AMH truly do that for consumers?  Will it demonstrate that effort through it's own prioritization and use of block grant funds?  Will it support consumer efforts to reach the key decision-makers?  Those who value transparency and accountability are curious to find out.