But at least they are talking about them. They use phrases like “person-centered guardianship” and “supported decision-making.” They are making an earnest attempt to connect the dots between the murky, hidden and highly bureaucratic world of adult guardianships and the newly accepted broader social agenda of helping dependent people stay in their communities instead of being shuttled off to institutions.
And because this is Washington, D.C., the way talk turns to action is in creating a layer of government to prod society further along. Two years ago, the Department of Health and Human Services came up with something called the Administration for Community Living, putting money and a mouth toward the goal of giving America’s elderly and disabled access to what all of us say we want: the right to decide where and how we live.
Assistant Secretary of Aging Kathy Greenlee, who is administrator for this new federal agency, says it’s the first emergence on such a level in 20 years. The compelling numbers — 35 million people with dementia worldwide, expected to triple by 2050 — have certainly helped to drive the change. But Greenlee believes we have to stop framing that demographic phenomenon as some sort of apocalypse, as in the “silver tsunami.”
“I am on a one-woman campaign to get rid of this language,” she told the audience here. “A tsunami will drown you. Older people are not a threat.”
In a culture that worships youth and abilities, she said, it is time to challenge our assumptions with new questions.
“At 90, what you have more than anything else is your self,” she said. “Can you be yourself in a guardianship? It all starts with knowing more about the lives and the hopes and the goals and the self of that person.”
Supported decision-making is being discussed here as an alternative to the all-or-nothing powers that court-appointed guardians now have to act in the “best interests” of their adult wards. When it comes to people with dementia, Greenlee admitted, this is easier said than done.
“Supported decision-making becomes even more complicated when you try to reduce it to practice,” she said. “We have socially constructed negative images of the very people we want to help. How do we do this well? How do we provide the right support at the right time?”
A day after Greenlee spoke, her deputy made the announcement that the Administration for Community Living had just decided to establish a national center on supported decision-making, and fund pilot projects to see how the concept can work. Sharon Lewis, principal deputy administrator for the agency, said she knew it would be a tall order for existing guardianship programs.
“Our role is not just to protect people,” she said. “Now we are saying, ‘Oh, by the way, everyone has to be served on a person-centered basis, and you have to take into account what they want.’ We’re a long way from that ideal that I describe. But I also think we can get there.”
Kristin Glen, a former New York Supreme Court judge and law school dean and an advocate for guardianship reform, said recognizing the right of an elder with dementia to more autonomy is a “radical concept.” But she pointed out that this kind of mass paradigm shift has happened before.
“Half the people in this room,” she said, would have once had all major decisions made for them because they were considered “too delicate, too childlike, and they needed protection. Everybody understood that. Now we see things very differently. Of course, I’m talking about women.”
Source:
Putting Personal Autonomy Ahead of "Best Interests"
23 comments:
It's time for change.
It was an awesome conference.
But here on the ground in Virginia, I'd settle for the seemingly modest goal of guardianship programs and courts and heartless, shameless bureaucrats who actually do the unthinkable: obey existing law.
Did anybody happen to notice that, even though this important conference was in Arlington, Virginia, there was NO ONE there from the Virginia Department for Aging and Rehabilitative Services? That there was NO ONE there from Jewish Family Service of Tidewater, purportedly the largest guardianship program in the country? That there was NO ONE there from Catholic Charities of Eastern Virginia, the second largest guardianship program in the Commonwealth?
Together, these public guardianship programs have about 800 hapless souls in guardianship, many based on illegal, void court orders. Court orders rubber stamped by a particular judge without jurisdiction because of a lack of the required seven days notice. Court orders rubber stamped at the behest of a hand-picked guardian ad litem "for" the incapacitated person. A single unethical GAL who purports to "represent," or more accurately misrepresent, hundreds of incapacitated people, in case after five minute case, every single Thursday, almost always in front of the very same judge. A GAL who has a massive, obvious conflict of interest. A GAL who can't even be bothered to visit her "clients" after the hearing, who won't answer phone calls when things go awry, who misinforms the court when JFS or CCEVA messes up, who refuses to take cases back to court, who remains a big, fat obstacle to the well-being and safety of hundreds of people whose best interests she is charged with "protecting." A GAL who didn't even have MALPRACTICE INSURANCE for years until she was publicly shamed into getting it.
Shameful.
Everyone should have the right to decide where and how they want to live.
The words "best interests" have been used against families who truly have their loved one's best interests in mind for far too long.
This is good news.
I am glad to see the discussion focusing on the people in guardianship rather than the practitioners getting rich off of them.
World? It will be interesting to know how other countries are doing guardianship and I hope their good ideas were accepted by our country.
Greenlee and Sebellius have both written me, telling me to follow-up with the Elder Justice Coordinating Council and Advisory Board created by the Elder Justice Act. I have tried in vain, and I have asked both for their help in doing what they advised me to do. Neither has done anything ...
I disagree with Kathy Greenlee's disapproval of "silver tsunami"
I don't see that as a negative term at all. I just see it as a metaphor that the Boomers represent a wave of people and if we don't get our act together, the Boomers will be the ones getting the tsunami, not the citizens or taxpayers.
I am glad to hear NASGA represented victims at this conference. Thanks for being our voice and speaking up for families.
Very promising and thank you NASGA for all you do for this cause.
I attended the World Conference and I was happy to see NASGA's President Elaine was in the crowd. I note too that Marcia with BAEA was present albeit I did not run into her for any face time to meet and greet.
The event was held at the Marriot Hotel 'Crystal Cities" Towers. I sat in on a few individual sessions which I found interesting and I was fortunate enough to spend a fair amount of time speaking with law professors from Spain, Argentina, Canada, and the US. I had time to speak with judges from Texas, Florida and New York, and advocate(s)/NCG(s) from the states of Washington, Oregon, Indiana, Arizona and North Carolina, and from the countries of Canada, Australia, and New Zealand.
All told this event was nothing more than a 'professional trade conference' and 'continuing education program' for NGA certified guardians. It was not a public event and media coverage inside the event was prohibited. The World Congress on Adult Guardianship was not the only event taking place at 'Crystal Cities' and I did run into CBS's Harry Reasoner and three film crews covering the Korean War MIA who was only recently found and returned to the US for burial in Arlington Cemetery. 'Crystal Cities' is just a few blocks from the Pentagon and so there were plenty of defense contractors and military persons at the hotel/ conference center and for the Collier Awards Banquet. (Lockheed Martin was being honored for some new jet bomber - the AX47 - the Pentagon's latest favorite pet project)
Anyhow, I was intrigued by many of the conversations I found myself in and I am glad I took the time to attend. I note that there was a resounding sense of concern for the 'ward' in most of the discussions and yet still, I heard little about relief and remedy for the sufferings of the ward. In sum, the general consensus I heard in the crowd -- in practice, things are a mess all over.
There were no victims represented at the conference although horror stories were told by the Indiana Task Force on Guardianship. The Congress didn't allow impartial media coverage because the event was held to certify more professional guardians and keep the ball bouncing -- or rolling-- in the wrong direction: guardianships and care taking of the elderly and disabled is a multiple billion dollar service industry.
Actually Anonymous, victims were represented at the conference; NASGA had a booth and we were very well received.
Victims' voices were heard and appreciated.
That wasn't the point I took away at all, anon 7:17. In the sessions I attended, I heard more about supported decision-making as an alternative to guardianship.
The point I did NOT hear except from the Indiana Task Force was how to achieve BETTER guardianship.
I talked with the lady who founded that task force after the session. Indiana uses carefully screened volunteers, which is how they were able to keep their program going for three years with no funding.
This lady had a lot of good things to say about these dedicated volunteers.
And I will say, I am convinced that Virginia took a wrong turn on the volunteer versus "professional" guardian issue years ago. Recent experience just confirms that.
It is a very painful thing to see the public guardianship programs you helped to build and support fall apart amid budget cuts, abuse, neglect, mistreatment, illegal conduct, violation of court orders, narcissistic, greedy lawyers, a ubiquitous, callous guardian ad litem who cares more about her ginormous fees than her "clients," and well-paid public officials who sit on their duffs and sweep all negative information, including deaths and serious injuries, under the rug.
Some people just need guardianship. Supported decision-making won't cut it. They don't have any family members. They are indigent. They are subject to abuse, neglect, and financial exploitation.
That's why we desperately need good public guardianship. When the public guardianship programs and their attorneys and hand-picked GALS are the ones committing the abuse, neglect, and financial exploitation, it's just heart-breaking.
We have come full circle.
Anon 10:21,
I too spoke with Rebecca Pryor from the Indiana Task Force and I note for the sake of clarification that it is the "Task Force" which has survived the years with volunteers and no funding. As an Indiana citizen and an adult ward of the Indiana guardianship system I can assure you that there is little or no presence of 'volunteer' guardians in Indiana. Rebecca Pryor was once a child welfare caseworker who developed the GAL/CASA [court appointed special advocate] network for Indiana's child welfare system and she is working to set in place the same type of system for adult guardianships and Adult Protective Services. Rebecca is indeed a very nice lady and she had a lot of good things to say, but if you read the 2012 Report by the Indiana Adult Guardianship Task Force which was among the documents provided on the flash-drive given us in the registration packet you will see clearly that the Indiana guardianship system is actually a shambles of its own dismal lack of understanding and incompetence ... Please do not get me wrong, I applaud the Task Force for its work but in the same breath Indiana is not leading the way to a kindly gentler form of guardianship practice ... not yet anyhow.
Good news that NASGA attended this event. Thank you for your sacrifices and efforts to represent those who have and had a long list of grievances and complaints with no where to go to complain all by design.
One day at a time one event at a time NASGA is not going away we are getting stronger by the hour.
Go NASGA !!!
I made an error in an earlier post of mine .. it was Harry Smith with NBC and not Harry Reasoner with CBS who was filming the news story at Crystal Cities.
My bad --
Kathleen Greenlee made a good point and she hit both sides woman have forgotten they once did not have rights and now they are taking part in discriminating against those who are found vulnerable and she did not have to point out it was the men who discriminated against women and now have found a new group to exploit. There are a lot of women in this system who are social workers etc preying on the vulnerable ....with the guys.
Credentials are listened to so that is the Rabbit hole of men and women preying on the elderly and disabled for profit. All those non profits included.
I defer to your greater knowledge, Tim.
The order of priority for guardian should be family member, volunteer, and if none available, a so-called professional guardian.
That is the law in most states, but it is widely ignored. The legislators, policy makers, and judges are hearing only from the so-called professionals, and they set the priorities.
When complaints inevitably arise, the policy makers and "oversight" bodies sweep them under the rug and demand more public funds, instead of just doing their job and fixing things.
It does appear that the only steps that will change things are lawsuits for the damages incurred, and reporting these sleazy lawyers who run this much-needed system for their own benefit to the Bar, early and often, so that one day the Bar will finally sit up and take notice of the violations of the law and the fundamental rights of these people, those who love them, and those who stand up for them.
Anon 8:08,
I think that something we as victims loose sight of in our best understanding of guardianship is the fact that historically, and beginning in 1066 A.D. with the Norman Conquest, Old England, from where American jurisprudence finds its roots, had two separate and distinct systems of courts. The king had his courts (law and equity) and the "church" had theirs, the ecclesiastic courts (probate of wills/death estates, orphans, matters relating to marriage and divorce).
In this two court system the king [the sovereign state] never had interest in nor jurisdiction to ever appoint a guardian for an adult, and the jurisdiction of the ecclesiastic courts to appoint a guardian in probate was limited to appointing guardians for minor children who were heirs to a death estate already being administered by the church court sitting in the probate administration of a will.
What this all means to the modern state, and what we as victims are not being told, the king really does not want this task hence the reason the state legislatures are reluctant to delve deeply into reform and why the emphasis on 'volunteer programs' and professional guardians.
Ask yourself this question, if probate, guardianship, marriage, divorce and adoption, were once historically the business of the church courts --- can our state and federal governments perform the functions of these historical religious establishments without violating the Establishment Clause of the 1st Amendment? Never mind this is all taking place in the "state courts" -- for a number of reasons, as we know, adult guardianship, generally and in practice, is clearly unconstitutional and discriminatory and those in the crowd and in the know at the World Congress know it is unconstitutional, often over-reaching and highly capable of abuse.
In spite of all the above, the entire problem with guardianship and the practice of guardianship, not unlike the Holocaust of 1930's Germany, lays at the feet of the judges -- found on the website of the Holocaust Museum is the following:
"Judges were among those inside Germany who might have changed the course of history by challenging the legitimacy of the Nazi regime and the hundreds of laws that restricted political freedoms and civil rights.
And yet the overwhelming majority did not. Most not only upheld the law but interpreted it in far-reaching ways that helped the Nazis carry out their political agenda, ultimately resulting in the deaths of millions."
http://www.ushmm.org/professionals-and-student-leaders/judiciary
Sadly for us all the state of our judiciary in this country, the quality and competence of our judges, especially at the trial court level where the most damage is done, is simply dismal and according to the 2012 Report by the Indiana Adult Guardianship Task Force the state knows that our judges are, generally, ill-educated, ill-prepared and unsupervised in just what is going on in the practice of adult guardianship.
I agree Anon, it's going to take lawsuits to prompt reform.
I came away from the conference feeling that Germany, having been through the Holocaust, has a guardianship system that truly respects the rights of wards. 1) Guardianships are limited--no plenary guardianships. 2) Ward retains full legal capacity 3) Guardianships laws are federal 4)Reviews of guardianships established by a court of "first instance"can be reviewed by a court of "second instance." And wards can represent themselves. 5) Guardianship hearing are open. They do not occur in secret, and courts are not closed.
I'm glad NASGA attended and appreciate everyone's efforts, limited as they might seem. Especially worthwhile are Tim Larhman's comments on the state of guardianship reform because not only is he studious, he has the distinct opportunity to assess the problems from inside-out and outside-in. We know by now that the issues reside in our jaded judiciary and the public's ignorance and low expectations.
For more information see:
http://stopguardianabuse.org/3rd_world_congress_on_adult_guardianship.htm
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