More on Minna Mettinen-Kekalainen

action alert, advocacy, als, aspergers, neglect, Our News & Commentary Blog, palliative care

First, over the weekend, Minna’s denial of in-home support went from a regional story to a national one in Canada. The Canadian Press picked up her story and it is now being disseminated all over Canada. This is a link to the story on Metronews.ca.

Encouragingly, this story focuses on the consequences of Minna’s withdrawal of personal care, and on the determination of MPP France Gelinas, quoted in Friday’s blog entry, to see this through and also to determine how many other people are being affected similarly:

She hopes for a speedy resolution so Mettinen-Kekalainen can live out her life in dignity, but Gelinas said Mettinen-Kekalainen’s plight is symptomatic of a broken system.

Former Progressive Conservative premier Mike Harris brought in competitive bidding for home care in the 1990s in an effort to reduce the cost for taxpayers, Gelinas said.

Before, the Victorian Order of Nurses and other charitable organizations had government funding and provided excellent home care, Gelinas said. Now, the for-profit companies Gelinas is aware of pay low wages, no benefits and no pension plans, which does not attract top quality nurses, she said.

“Our home care system is broken,” Gelinas said. “And why is it broken? Because of the bidding system. This is not the way to provide care.”

I received email this morning from Minna and it looks like she’s reaching out to a disability rights lawyer who expressed interest in getting involved in some way.

And, oddly, I received email from Judy Wasylycia-Leis, and MP and self-described “NDP Health Critic.” Odd, because she thanks me for contacting her when I cannot for the life of me figure out when or how I did so.

No matter. What’s really important is the part of her email where she says that she has alerted others in government. Specifically, she writes that she has contacted Glenn Thibeualt, who she informs me, is Tudbury’s MP.

At the risk of sounding uncharacteristacally optimistic, things are looking up and Minna (and maybe others) can get the support she needs and is currently doing without.

Please refer to past posts on ways to keep up vigilance and pressure. –Stephen Drake

Canada: Updates on Minna Mettinen- Kekalainen

action alert, advocacy, als, aspergers, Canada, neglect, Our News & Commentary Blog, palliative care

Several new developments since yesterday – or some new aspects to ones already in the works.

First, as I’m writing this, students are staging a protest in Sudbury to raise awareness and keep the pressure up in regard to Minna Mettinen- Kekalainen and the total lack of care and support she is living with as she struggles with advanced ALS.

From yesterday’s Sudbury Star, is the story “Community to protest patient’s plight”:

Laurentian University social work students will stage a day-long protest Friday to keep attention focused on the plight of a Sudbury woman with ALS who says she is being denied home-care services she desperately needs.

The students will demonstrate in front of Sudbury MPP Rick Bartolucci’s office from 8 a. m. to noon, then march to the North East Community Care Access Centre in the Rainbow Centre for a demonstration until 4 p. m. to raise awareness about the case of Minna Mettinen- Kekalainen.

Bartolucci, mentioned in the article above, has responded in a way that has been less than satisfactory. Fortunately, another MPP (MPP = Member of Provincial Parliament) has decided that someone needs to step up to the plate:

New Democrat Health critic France Gelinas is determined to get to the bottom of a dispute between the North East Community Care Access Centre and a woman who says she is being denied home care.

Minna Mettinen-Kekalainen, 42, who has ALS, says the centre is refusing to provide her nursing and personal support care after she threatened to report nurses hired by a contract agency of the centre for failing to follow her doctor’s orders.

Why did it take her this long to get involved? Simple. Minna is actually represented by a different MPP – that would be Mr. Bartolucci, mentioned above.

Gelinas, the Nickel Belt MPP, says she can’t stand by and watch Mettinen-Kekalainen struggle on her own. She said she was reluctant to get involved at first because the woman lives in the Sudbury riding represented by Liberal MPP Rick Bartolucci.

The rookie MPP said she tread carefully when Mettinen- Kekalainen’s story first appeared in The Star two weeks ago, but Thursday she said she has waited long enough for a resolution.

For an example of unimpressive representation, here are some quotes from Mr. Bartolucci’s office:

When contacted in Toronto on Thursday, an aide to Bartolucci, who is also Community Safety and Correctional Services minister, said Bartolucci was not available for comment.

Laura Blondeau said while Bartolucci “cannot publicly discuss details of the case, Mr. Bartolucci is very confident that his constituency office staff has bent over backwards to help this individual. He has closely monitored the situation and is certain that everything that can be done by his office, is being done.

“This is consistent with the approach Mr. Bartolucci and his dedicated constituency staff demonstrate on a daily basis,” said Blondeau in a written statement. (emphasis added)

Was the irony in this official statement intentional, or is it just me?

More here from MPP Gelinas:

Gelinas said she does not blame the centre for denying care to the Sudbury woman, but is angry at the private nursing agency that is refusing to provide care.

Private agencies “have refused care to a whole bunch of people and now they feel entitled to do that,” said Gelinas, a harsh critic of for-profit nursing agencies being hired by community care access centres across the province.

“How can they do this? It feels like if a client is difficult, and if there is no money in it, they say, ‘The heck with her.’

“If a woman as outspoken as Mettinen-Kekalainen is being denied home care, “how many frail seniors are being denied care?” asked Gelinas.

To me, this is the most promising development to date. Gelinas is not only advocating for Minna, but treating her as the visible tip of a large iceberg – a large group of neglected people who aren’t prone to raise a fuss and just suffer in silence.

I’d also like to recommend this op-ed by Carol Mulligan, the reporter who has been writing the articles about Minna’s situation and her struggles. Here’s a sample:

ALS is eating away at Minna Mettinen-Kekalainen’s body, but it would not surprise me if she died of a broken heart. As I lace up my boots and leave her home, I cannot imagine leaving a sick dog alone in conditions like those in which I am leaving Minna.

If she were an animal, I could call animal welfare authorities to rescue her. It’s not that easy to find help for a desperately ill woman.

While I always get a little queasy when animal metaphors are used in relation to humans – especially old, ill and disabled humans – this is a refreshing change from the “we’d put a dog down if she were like this” that I am used to reading.

Not only that, but she’s right. There seems to be an explosion in “no-kill” shelters for abandoned, neglected and abused animals. Be nice to see a similar move in that direction for humans. –Stephen Drake

Canada: Woman Goes on Hunger Strike After Being Denied Basic Care – Help Needed

action alert, advocacy, als, aspergers, blog recommendations, bloggers, Canada, neglect, Our News & Commentary Blog, palliative care

Yesterday, I checked the blog ballastexistenz (which I do about once a week) and found an urgent plea from Amanda Baggs regarding a friend in dire straits.

The urgent plea dealt with a friend, living in Sudbury, Ontario. Minna Mettinen-Kekalainen is 42 years old. She has aspergers and ALS. She needs daily care and support for basic physical needs – such as bathing and getting her adult diapers changed. Minna isn’t getting that care.

Driven by sheer despair and exhaustion over living without needed support, she went on a hunger strike, refusing to let friends give her the nutritional supplements she needs to live.

Her story was told – badly, in places – in the Sudbury Star.

Obviously, I didn’t blog about this yesterday. Like many other individuals, I decided to heed Amanda’s plea:

But I have a request for anyone with any power to do anything about this:

Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.

You might not believe it can work, but it can — I’ve done it. This is someone’s life here and something can be done. I know because I’ve put pressure like this on agencies myself on behalf of others — and a hospital suddenly started providing appropriate care to one person, a home nursing agency started providing appropriate care to someone else. (This is a lot of what I do when I’m not on the Internet.) Often what they need to know is that you are watching and that the consequences for them of not providing appropriate care will be worse than the consequences of providing appropriate care. They won’t necessarily do this for any of the right reasons, but find a reason for them to do it and then put as much pressure on as you have to.

A lot has happened over in less than 24 hours. There has been increased pressure on the agencies involved to give Minna the support and care she needs and deserves. Some students have organized a protest on her behalf.

Importantly, for now, at least, Minna is encouraged enough to have ended her hunger strike. I have exchanged a few emails with her and so have others.

That doesn’t mean we can let this rest, though. Unless she gets the support she needs, she’ll surely be right back where she was. Some terrific folks have put together some tools and suggestions to help change this situation.

Andrea Shettle at ReunifyGally has put together a great list of suggestions and resources for helping in this effort. I am reproducing it here at her open invitation which is included at the end of her blog post:

We in the disability human rights community have an opportunity to save a life. A quick summary: a woman with disabilities in Sudsbury, Ontario, Canada (Minna Mettinen- Kekalainen) is SUPPOSED to be receiving home care services. The North East Community Care Access Center has been denying her these services. Minna says this is because she had complained about their nurses because they had failed to follow her doctor’s orders. Minna was on a prolonged hunger strike, starving herself to death in an attempt to pressure the CCAC to provide her the services she needs. She has started eating again, at least for now. But she is still being profoundly neglected. Please take a few minutes to support efforts among disability rights activists to save her life.

1. First, read more about the situation at the following two links. You will also want to read the comments that people have left, because people are using the comments area at this blog page to exchange more information and ideas on how people can help: http://ballastexistenz.autistics.org/?p=572 and http://ballastexistenz.autistics.org/?p=573

2. Send an email to the following people to urge them to intervene on Minna’s behalf so she can receive the home care services that she is asking for: Sudbury MPP Rick Bartolucci Constituency Office email: rbartolucci.mpp.co@liberal.ola.org

Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca

Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

Non-Canadians can use these email addresses, too. If enough individual people write to them, they may take notice.

3. Consider also communicating with the North East Community Care Access Center on Minna’s behalf. This is the center that is refusing care to Minna (unfortunately there seems to be no email contact for them):

North East Community Care Access Centre (the centre that is refusing care to Minna)
Head Office/Sudbury Branch
1760 Regent Street
Sudbury ON P3E 3Z8
(705) 522-3461 or 1 (800) 461-2919 (Sudbury

To access the Long-Term Care ACTION Line call: 1-866-876-7658 or TTY: 1-800-387-5559.

(More detail on their Complaints and Appeals Process at http://tinyurl.com/aeu6vt)

4. Also consider communicating with the Maison Vale Inco Hospice–this is a different place (NOT related to the North East Community Care Access Center), and Minna would like to be admitted there.

Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)
(705) 674-9252
1028 South Bay Rd. Sudbury, ON P3E 6J7
Website: http://www.maisonsudburyhospice.org/
Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.org
Executive Director is Léo Therrie

5. If you will be in Ontario on January 23, consider joining a protest and march on Minna’s behalf.

6. Join the Facebook group, “Minna’s Hunger Strike–Call to Action for an ALS Patient Denied Care” to learn the latest news on what is happening with Minna’s case and what people are doing to help. If you are not already a member of Facebook, it only takes a few minutes to sign up for a free account.

7. Please circulate this text further via your network of contacts in the disability and human rights communities, Facebook page, blog site, etc.

Thank you for taking action.

Finally, if you would like to hear from Minna in her own words, she has put up a nicely accessible section on YouTube, with the transcript of what she says included in a sidebar on the left of the screen. You can find it at the Sudbury CCAC exposed channel.

With your help, this woman can get the help she needs to live her life.

Please come back for updates as they become available. –Stephen Drake

Request to remove life-support from 6-Month-Old in Texas Withdrawn for Now – Texas NDY

abuse, crime and punishment, david coronado, futile care, haleigh poutre, Our News & Commentary Blog, Surrogate Decisions & Guardianship, texas

On Monday this week, NDY was contacted by Texas attorney Jerri Ward, who has worked extensively on behalf of families and patients in fighting the aggressive implementation of “futility” policies in Texas.

The subject of the call was an impending court hearing in Dallas County juvenile court to decide on a petition by a court-appointed guardian to allow withdrawal of life-support from six-month-old David Coronado. David was allegedly the victim of severe abuse at the hands of his parents.

Here’s a summary of the rationale for removing life support from this infant from the January 17th edition of the Dallas Morning News:

On Monday, the infant’s court-appointed guardian filed a motion in Dallas County juvenile court asking that doctors at Children’s be permitted to remove David Jr. from life support.

The motion, noting that the parents “have not consented to withdrawal of support,” argues it is in his best interest. Court records describe him as “neurologically devastated.”

If this sounds familiar, it should. This is even milder language than that used by the Department of Human Services in Massachusetts to justify the removal of life-support from Haleigh Poutre, who was also apparently abused and written off as “virtually brain-dead.” As anyone familiar with the case knows, the accused abuser challenged the removal of life-support, delaying the action long enough so that by the time Poutre was “granted” the “right” to die with “dignity” she had already shown signs of awareness and improvement.

(I wondered in the Poutre case – and in this one – if part of the dynamics relate to the desire to nail the accused abusers with murder charges. The only trouble with that is that you have to have the kid die to level a murder charge.)

Fortunately, in this case, we have a reprieve for David Coronado. Here’s part of the story, as related in today’s edition of the Dallas Morning News:

The fate of a brain-damaged 6-month-old Dallas boy is uncertain after his court-appointed attorney on Tuesday withdrew a motion to let doctors take the baby off life support.

But the fate of his parents, arrested last month on child abuse charges, may hinge on whether David Coronado Jr. survives his horrific injuries.

The baby’s attorney ad litem, Holly Schreier, told a juvenile district court judge that doctors at Children’s Medical Center Dallas had assessed a change in the baby’s condition. She did not say what the change was, and she did not return a call for comment.

A doctor reported in December that he expected David to suffer severe disabilities if he survived. It is unclear if doctors now expect the baby to remain in a vegetative or minimally conscious state.

Meanwhile, word of the possible hearing on withdrawing the child’s life support had spread over the weekend among right-to-life and disabilities-rights groups, at least one of which readied attorneys to intervene Tuesday morning.

“Brains are very resilient, and in a 6-month-old baby, to conclude that he’s neurologically devastated and is going to stay permanently that way I think is irresponsible,” said Jerri Lynn Ward, an attorney representing Not Dead Yet, a disabilities-rights group. (emphasis added)

Schreier’s motion to allow support to be withdrawn did not explain her reasoning, other than to say that it was in the baby’s best interest and that she had discussed the issue with doctors at Children’s.

As the article shows, the result of that call was to arrange for Jerri Ward to represent the Texas chapter of NDY as intervenors in the case.

Here’s the thing, though. The withdrawal of the motion by the attorney ad litem wasn’t unexpected.

The day before the hearing (which was cancelled), Bob Kafka (national ADAPT organizer and organizer of Not Dead Yet of Texas) emailed the following to the Executive Commissioner of Texas HHS (and cc’d to several activists/advocates concerned with futility issues):

Though we are still getting information our understanding is that CPS is going to court tomorrow to have life supports withdrawn. If as we have been told this is occurring because of severe cognitive involvement it raises major red flags. I know you have confidentiality requirements would appreciate any info you can provide.

By late that evening, Kafka and other recipients of the email were informed that “additional information” had been received, the motion had been withdrawn and that CPS hadn’t taken any action to remove life support.

Bob says there’s no way to tell if his email had anything to do with the withdrawal of the motion. OTOH, I am sure it didn’t hurt.

It also puts Child Protective Services and the hospital on notice – there are people who care very much how this child’s life is handled. –Stephen Drake

Addendum: Reporter Steve Thompson (who reported on the Coronado case) writes on the Dallas Morning News‘ “Crime Blog” and he has a little more on the motion that was withdrawn – turns out that the phrase “for now” was well-advised:

The attorney/guardian ad litem told the judge that the baby, David Coronado Jr., had had a change of condition. She did not say what the change was.

“Withdrawing” a motion, I’m told, doesn’t make it go away. It just means that it won’t be heard right then. So, since it may come into play again, I thought people might be interested in reading it.

He’s reproduced the motion from his notes on the blog, which you can read here.

Celebrating Benjamin Franklin’s Contributions to PWDs – Technology and Satire

adaptive technology, history, medical devices, Our News & Commentary Blog, satire

Portrait of Benjamin FranklinBenjamin Franklin was born on January 17th, 1706 (if you want to be picky, it was January 6, 1705 by the “Old Style” calendar system in effect when Franklin was born).

So this Saturday is the 303rd anniversary of his birth.

It’s a good excuse to devote a little time and space to one of the most brilliant men ever born on this continent.

Franklin’s accomplishments cover way too much territory to cover in a single blog entry – and I’m pretty sure that wouldn’t be the kind of thing people come here to read, anyway.

So I’ll share just a few things today that are pertinent to the lives of people with disabilities, illnesses and aging issues. After that, I’ll share his contribution to NDY concerns.

In response to a request from his seriously ill older brother, Franklin designed the first flexible urinary catheter ever used in the Colonies. As Franklin got older and experienced age-related limitations, he invented more useful devices. As his eyesight weakened, Franklin developed a need for two separate pairs of glasses – and grew tired of switching between them. This frustration led to his invention of bifocal glasses, simply cutting the tops and bottoms of his lenses from each pair and joining them together.

Franklin loved to read and had a large library. As he got older, climbing a ladder to get books on high shelves was no longer something he could do easily – or at all at times. He invented a mechanical reaching device for grabbing books off high shelves he referred to as the “long arm.”

Franklin was a talented and prolific writer. Much of what he wrote was published under pseudonyms for various reasons. In 1776, the Continental Congress sent Franklin to France as an ambassador – in an ultimately successful attempt to garner military and financial support for the war between the Colonies and England.

Franklin kept up his writing efforts while working in France. One of his most famous pieces, The Sale of the Hessians, was published in 1777. Here’s Walter Isaacson’s introduction to the piece in his book A Benjamin Franklin Reader (p.271):

Franklin also waged a propaganda campaign, and the device he often used, once again, was that of satire. Along the lines of his Edict from the King of Prussia, Franklin published anonymously what purported to be a letter to the commander of the Hessian troops in America from a German count who got paid a bounty for the death of each of the soldiers he sent over. Because Britain had decided not to pay for any wounded soldiers, only for those who died, the count encouraged his commander to make sure that as many died as possible.

Finally, at last, you might get an idea what Benjamin Franklin is doing here on the NDY blog. Below is the opening to Franklin’s “Sale of the Hessians”:

FROM THE COUNT DO SCHAUMBERGH TO THE BARON HOHENDORF,
COMMANDING THE HESSIAN TROUPS IN AMERICA

Rome, February 18, 1777
MONSIEUR LE BARON: — On my return from Naples, I received at Rome your letter of the 27th December of last year. I have learned with unspeakable pleasure the courage our troops exhibited at Trenton, and you cannot imagine my joy on being told that of the 1,950 Hessians engaged in the fight, but 345 escaped. There were just 1,605 men killed, and I cannot sufficiently commend your prudence in sending an exact list of the dead to my minister in London. This precaution was the more necessary, as the report sent to the English ministry does not give but 1,455 dead. This would make 483,450 florins instead of 643,500 which I am entitled to demand under our convention. You will comprehend the prejudice which such an error would work in my finances, and I do not doubt you will take the necessary pains to prove that Lord North’s list is false and yours correct.

The court of London objects that there were a hundred wounded who ought not to be included in the list, nor paid for as dead; but I trust you will not overlook my instructions to you on quitting Cassel, and that you will not have tried by human succor to recall the life of the unfortunates whose days could not be lengthened but by the loss of a leg or an arm. That would be making them a pernicious present, and I am sure they would rather die than live in a condition no longer fit for my service. I do not mean by this that you should assassinate them; we should be humane, my dear Baron, but you may insinuate to the surgeons with entire propriety that a crippled man is a reproach to their profession, and that there is no wiser course than to let every one of them die when he ceases to be fit to fight.

Anyone who is interested can read the rest of the letter here.

Franklin was a pragmatic man who was all too familiar with both the great potentials and equally great faults existing side by side within the human character. This piece worked because – even if no one believed the “Count” would actually write something like this – they could well believe that the letter could be an accurate reflection of his true sentiments. The idea that a person’s value or worth was limited to their ability to serve their state or ruler wasn’t exactly was probably more fact than fiction in Europe in those days.

Franklin was perhaps the only founding father with a well-developed sense of humor. A surprising amount of what he wrote is still readable, funny and relevant to our own world and changed language. Satire has been an important part of American cultural and political discourse. Any of us who use satire as an advocacy tool have a tie to Franklin and a debt of gratitude for showing us the way. –Stephen Drake