Jan 24, 2011
Oregonians with disabilities should keep a careful eye on both how government works and on their medical files.
Last week, I heard a radio report about the transfer of Rep. Gabrielle Giffords from the hospital to a rehab facilty. The reporter noted that Giffords' family would not release all of her medical records to the press and then explained, somewhat grudgingly, why they are allowed to withhold this information. This reminded me of an article I had just read about Apple CEO Steve Jobs who is taking time off to deal with health problems. This report had also grumbled about Jobs' desire to keep his medical records private.
The very next day, I read an editorial in the Oregonian that suggested that public safety would improve if police had access to the mental health records of homeless people. Then, I went to a meeting with members of the Oregon Parole Board where we discussed if it was good practice for the Board to release mental health evaluations of inmates who are being considered for parole, to the victims of their crimes. This is now the practice of the Board, making Oregon unique among the states. At a legislative hearing on this issue, I heard a crime victim advocate say that he kept a file of all the psychological evaluations of inmates. He said he enjoyed reading them. No harm, one supposes, since there is no penalty for releasing this information to the general public.
It seems that in this Facebook age, everyone wants to see everybody else's junk. But don't touch mine and definitely do not mess with my privacy settings. So from airport patrons to medical patients, from abuse victims to gun owners, from big-time political donors to ballot measure signers, everyone wants to be able to keep their own profile low, low, low. Another example: the Oregon Attorney General is campaigning that he will make it easier for folks to get public records while, at last count, there are 41 bills filed in this year's legislature that affect public records: most seeking more protection from disclosure.
It's fair to ask if privacy is just another commodity that the powerful or politically sympathetic get to enjoy, or are there underlying principles that we can apply to measure when privacy is a reasonable expectation? The U.S. Constitution has been found to guarantee some level of privacy from government intrusion as a protection for the politically disadvantaged. But what about when the state sanctions private intrusion by a favored group into the normally private affairs of a less popular population (for example, the Oregon parole board policy on psychiatric evaluations of inmates)?
The importance of confidentiality for people with disabilities is closely tied to the discrimination that people experience, particularly those with "hidden" disabilities of the mental, cognitive and intellectual kind. Many people with mental illness are not comfortable with police evaluating their clinical records because of their experiences of being automatically considered erratic and unpredictable by officers. Chronic illnesses of all sorts are of great interest to others, not only to insurance companies but to employers and, indeed, investors.
Do stockholders in Apple feel able to sort through Steve Jobs' medical information and decide if he is a good investment based upon their own medical knowledge? In many cases, yes. Are Rep. Giffords' political opponents ready to assess her likely level of recovery? I suspect they are at it already with the information at hand. Is the general public wary of individuals with brain injury, mental illness or intellectual disabilities? Check out the local newspaper or cinema for an easy answer.
Privacy is a topic that appeals to human impulses of self-protection and curiosity. Oregon's interest in open government and protection of its citizens must be balanced. The choice is not between being Wikileaks-West or East Germany on the Willamette.
Jan 12, 2011
Let's not draw the wrong conclusions from these tragic shootings.
We are very saddened by the shootings in Tucson. To Representative Gabrielle Giffords, her staff and other victims of this vicious attack, we wish you comfort and courage in the difficult process of healing and recovery.
We know from experience that tragic events of this kind spawn a variety of political opportunists who try to exploit people’s sympathies and fears. On issues concerning the tone of political discourse and the wisdom of gun regulation, various forces will fight it out in the public arena. One group, however, will be targeted as scapegoats and is not well equipped to fight back: individuals with mental illness.
These horrible shootings have already been used by a D.C.-based organization that is urging state legislatures to lock up and forcibly medicate any individual who has a diagnosis of serious mental illness. This group is also attempting to silence people and organizations who advocate for humane and respectful treatment and supports for those individuals. The forced treatment group seems to believe that legislators, judges and policy makers should not hear the concerns of individuals with mental illness before making decisions that directly affect their lives. Its strategy mirrors its underlying principles: legislators should not hear all sides of the issue because there is only one way to correctly think.
The facts are that having mental illness, in itself, does not increase one’s chances of committing serious violence. However, failing to offer assistance to people struggling to find housing and employment, and turning away from those who need help to resist fear and substance abuse can have awful results for them, their families and their community. Laws that make it easier to commit people or forcibly medicate them are not effective in improving mental health conditions or in decreasing social violence. Evidence-based treatments and supports that are known to help continue to be in short supply even though, to quote Gary Roberts, the new superintendent of the Oregon State Hospital, “Recovery is not only possible, it is more than likely.”
But don’t take my word for it. The two major federal policy papers in the field: The President’s New Freedom Commission on Mental Health and The Federal Action Agenda encourage a focus on outcomes of mental health care that are desired by the individual, “which are to attain each individual’s maximum level of employment, self-care, interpersonal relationships, and community participation.” None of the 20 goals set forth in the New Freedom Report recommend forced treatment. Instead, evidence-based practices and rights protection are emphasized.
In Oregon, we have some very tough choices to make about funding state services. Continuing the present level of services would cost $3.5 billion more than the state expects to have. This is why we must make sure that legislators know the facts and do not make decisions based upon unfounded fears and hasty, unproven “solutions.”
We understand that Representative Giffords has a long, distinguished record of advocating at the state and federal levels for community mental health services and cautioning against the stigma and discrimination that burden people who have mental illnesses. Let her inspiration and courage guide us through these difficult times.