Zac sails home

Some readers may have noticed I've been following the voyage of 17 year old Zac Sunderland, who is returning home today after sailing around the world solo for 13 months. You can see a photo of Zac at sea above.

You can also find Zac's blog here, along with some great photos and stories about his journey.

Congratulations, Zac!

Delivering the best

There's another interesting post over at Rolling Around in My Head by Dave, called Stop. He writes about abuse in care systems and what it's like to work with those "who have suffered brutality and who look to see if it's in me. I am regularly in contact with those who expect the worst of me even as I struggle to deliver the best."

It's worth a read.

Laws changed in some states to protect restaurants donating food

As food pantries struggle to provide meals for increasing numbers, some states have recently passed laws to protect donor restaurants from civil liability, which makes "it easier for restaurants to donate leftover food to charities", according to USA Today.

Ross Fraser of Feeding America, a national association of food banks, says the demand for free meals rose by an average of 30% in 2008, but some areas saw an increase of up to 70%.

The article discusses changes in laws in Mississippi, Nevada, Massachusetts, California, and Florida. It is also noted by USA Today that

Food donors are protected from liability by the 1996 federal Bill Emerson Good Samaritan Food Donation Act, but it does not supersede state and local restrictions on food donations, says Maureen Ryan, spokesperson for the National Restaurant Association.

Why Is There a Menorah on the Altar? a new book by Meredith Gould

Those of you who read the blog from this page may notice that Meredith Gould's newest book Why Is There a Menorah on the Altar? Jewish Roots of Christian Worship is now on my sidebar. It is also available for pre-order.

Book description from amazon.com:

* Ecumenical, liturgical Christian audience -- particularly Episcopalians, Lutherans, and Roman Catholics
* Seeks to enhance Jewish-Christian reconciliation
* Excellent resource for interfaith couples, Christian formation, and sacramental preparation
A desire and demand to know more about the Jewish legacy of Christian identity is growing among laity. A desire to foster interfaith understanding and dialogue is growing among officials of local churches.

Meredith Gould's newest book meets these demands by providing information and delivering biblically and historically-based insights about Judaism's legacy as it's revealed in Christian rites, rituals, and traditions. She introduces Christians to Judaism's influence on the structure of liturgical worship; church sanctuary design and decoration; and the meaning and structure of baptism, Eucharist, and confirmation.

Why Is There a Menorah on the Altar? provides readers a deeper understanding of Judaism, one that will enrich their Christianity and deepen appreciation for their enduring Jewish legacy. Each chapter includes questions for reflection and discussion, plus practical exercises to illuminate key concepts. Questions and exercises can be used by groups as well as individuals.

About the Author
Meredith Gould, Ph.D. is the author of six books, including The Word Made Fresh: Communicating Church and Faith Today, (Morehouse Publishing).

Free wheelchair ramps available from Appalachia Service Project

via The Ridgefield Press:

Free modular, pre-fab wheelchair ramps are available to disabled individuals and non-profit organizations through the Appalachia Service Project (ASP), sponsored by Jesse Lee United Methodist Church in Ridgefield and the Danbury United Methodist Church.

ASP is a Christian ministry that sends about 15,000 volunteers from across the country each year to make homes warmer, safer and drier for 400-500 low-income families in Central Appalachia.

One hundred and thirty-five high school students and adults went to West Virginia and Tennessee with the Ridgefield/Danbury group this year.

Information and applications are available at jesseleeasp.org.

Petition for Jemma Saville

Over on Twitter, there's a petition being linked in support of a visually impaired junior doctor named Jemma Saville who has not been offered a training position on the basis of disability. After starting medical school in 2002, "Jemma's vision deteriorated and she was "registered as partially sighted in 2005". The petition reads:

The medical school supported her through her visual loss, and despite some obstacles, she completed her finals and graduated as a doctor in 2008.
In 2008 she was informed that there was no position for her to go to and took some time out from the profession to make some decisions.
By November 2008 the decision was clear: that there was a reason for all that studying and determination to succeed, and it wasn't just for a piece of paper, or the letters "Dr." She gained GMC provisional registration in March 2009: the General Medical Council believe that she poses no danger to patients on the grounds of her visual impairment.

Despite this, she has not yet been offered a training post within a hospital.

This petition is about showing her support, and proving to the sceptics out there, that (with very obvious limits) people with disabilities can be fantastic doctors.

"I want to be a psychiatrist. I am great with people, kind, empathetic, understanding. I don't want to be a surgeon, or perform clinical procedures which I am not competent to do, and I certainly would never put any patients at risk. I know what I can and can't do, and this is key to any doctor being safe. I believe that even with a visual impairment I can be a very successful, inspirational doctor. I just need to be given the opportunity to prove this."

If you support Jemma, and other partially sighted doctors in the future, please add your name to the list below. And thank you so much for your support.

You can find the petition here.

What empowerment is not

There's a list over at Disability Prejudice and Civil Rights Watch of what empowerment is not. I can relate to a number of things on it.

It includes:

when you ask [someone] a favor, having done them a favor yourself, being told it would be empowering to do it yourself

On the subject of favors, I've noticed how differently that works now since I've acquired my disability. I can help a friend with a resume or a ride or any number of things, but if I ask a favor back, I am often told that it's my aide's job. Or, as the writer says, my commitment to being independent is questioned. Needing a loaf of bread when you have the flu is no different for any of us. It is not empowering to go to the store sick.

It also includes:

Denying my physical or other disabilities and pretending I can do things I can not do

This happens at times. I'm astonished at the number of people who "get embarrassed" when I ask for help cutting up food, for example. The truth is if I pretend I can do it, I'm likely to wind up shooting my food across the room. (Once I landed a sticky cornish hen against a wall, but that's another story.)

What's behind this, however, is not funny. So often I see people with disabilities pretending to do things they can't. They fall or injure themselves. They deny their hidden disability and wind up with larger life problems. It is not empowering to deny who one is.

Great post. Hope more people comment on it or blog about it.

Dazzboard

Dazzboard is a free online media manager that supports all mobile devices, including cell phones, mp3 players and media players on a Windows PC). You can use it to

* Connect your portable device and PC
* Transfer your photos, music and videos
* Download content from the Web to your device
* Upload content from your portable device
* Connect your device and Social Networks

It's still in the beta stages and you have to request an invitation to use it. You can also view a video about how it works at its site here.

LA Times reports delays and lack of oversight in disciplining problem nurses leave public at risk

When fellow nurses reported Owen Murphy Jr. for behaviors such as twisting the jaw of a patient, slamming an elderly patient against a mattress and telling him "I said, Stay in bed", ignoringalarms on vital-sign monitors, hurling a thirsty patient's water jug against the wall and shouting at coworkers, they assumed the board would take action. Murphy resigned under pressure, but California's oversight board failed to take any disciplinary action for three years, the LA Times reports. The article says that the public is unaware of the risk due to delays of this kind, even for egregious misconduct, leaving nurses free to practice who have "histories of drug abuse, negligence, violence and incompetence".

Reporters examined the case of every nurse who faced disciplinary action from 2002 to 2008 -- more than 2,000 cases in all -- as well as hundreds of pages of court, personnel and regulatory reports. They interviewed scores of nurses, patients, families, hospital officials, regulators and experts.

Among the findings:

* The board took more than three years, on average, to investigate and discipline errant nurses, according to its own statistics. In at least six other large states, the process typically takes a year or less.

"It's really discouraging that when you do report people . . . they don't take action," said Joan Jessop, a retired chief nursing officer in Los Angeles who filed multiple complaints with the board during her 43-year career. "What is so frightening to me is that these people will go on and do it to somebody else."

* The board failed to act against nurses whose misconduct already had been thoroughly documented and sanctioned by others. Reporters identified more than 120 nurses who were suspended or fired by employers, disciplined by another California licensing board or restricted from practice by other states -- yet have blemish-free records with the nursing board.

* The board gave probation to hundreds of nurses -- ordering monitoring and work restrictions -- then failed to crack down as many landed in trouble again and again. One nurse given probation in 2005 missed 38 drug screens, tested positive for alcohol five times and was fired from a job before the board revoked his probation three years later.

* The board failed to use its authority to immediately stop potentially dangerous nurses from practicing. It obtained emergency suspensions of nurses' licenses just 29 times from 2002 to 2007. In contrast, Florida's nursing regulators, who oversee 40% fewer nurses, take such action more than 70 times each year.

UPDATE: Schwarzenegger sweeps out nursing board

Proposed change to Ohio's budget bill could threaten nursing home patients' access to complex wheelchairs

Those are the complex wheelchairs that are custom-made for patients such as paraplegics or those with multiple sclerosis who have moderate or severe physical challenges that can’t be met by standard wheelchairs. Industry members hear they could lose a direct reimbursement from Medicaid, see that amount cut and then diverted through nursing homes where many of their customers live.

Carol Gilligan, president of Health Aid of Ohio in Cleveland, spent the last two days in Columbus trying to find out about the behind-closed-doors addition to Ohio’s budget bill. Health Aid specializes in customizing, assembling and delivering the wheelchairs – a $15 million-a-year industry in Ohio, Gilligan said.

Under the proposed change, nursing homes would receive the Medicaid payments in a convoluted fee transaction with the state, Gilligan said. The wheelchairs would belong to the nursing homes, not the patients, she said. So if a patient left a nursing home, the wheelchair would stay behind.

Bundling these services for nursing home residents increases the expenses of the homes, enabling the state to qualify for more Medicaid dollars, Johnny Miller, homecare manager of Miller’s Sales & Rentals of Akron, told legislators during testimony on Tuesday.

Gilligan and others fear the change would make it next to impossible for nursing homes to afford the complex wheelchairs, which can range from $3,000 to $15,000.

What’s more, the change would devastate businesses in the industry. Gilligan said she would lay off 20 workers and Miller testified he would cut 25 to 35 of his 100 employees.


via medcitynews.com

Higher quality providers could be put out of business, legislators note, since the services would be bid on cost and failure to provide wheelchairs will leave people bedridden, resulting in costly medical complications.

Not to mention robbing them of any quality of life since people would have to leave their wheelchairs behind "if a patient changed providers or moved to PASSPORT or assisted living, their wheelchair would not move with them because it would belong to the nursing home.”

Ghana schoolchildren await historic visit of first African-American US President

This BBC article discusses Ghana's history and connection to slavery, as well as the significance of the president's visit there. Ghana, which was the first African county emancipated in 1957, has a democratic government showing what Obama has referred to as an "effective governance" despite some flaws, such as relying on international help despite having strong natural resources.

Related:Obama's Ghana visit will stress African self-reliance
US Hopes Obama's Ghana visit will spur others
Obama's Ghana trip sends message across Africa

Two news stories

Two articles forwarded to me via email this morning that I'm reading over a cup of coffee- talk about one extreme to the other!


Last week a high school cheerleader was accused of stealing money from a group of kids, including a girl in a wheelchair, who were selling t shirts and hats.

According to police, Steele approached the kids, started a conversation with the father of two of the children, then, when the man left, took the cash and ran. She then got into a car and drove off. Three other teenage girls were in that car with Steele. Police have not yet decided whether to charge the other teens.

Steele's mother, according to the article, offered to repay the stolen $147 if the charges were dropped, but the children's father hasn't responded, saying he wants a "lesson learned".

UPDATED: VIDEO

Visit msnbc.com for Breaking News, World News, and News about the Economy

**

Out in Utah, a TV viewer donated a lift and the labor to make the Small Smiles Bookmobile accessible for all children.

Until school starts, the bookmobile will be at Lindavista Park in Syracuse every Tuesday and Thursday mornings. All children are invited to come, and it's free.

The Pope receives President Obama

In their first private meeting today which lasted approximately twenty minutes, Pope Benedict XVI and President Obama spoke about "moral values in international politics, immigration and the Catholic Church’s contribution in developing countries", according to Press Office Director Fr. Federico Lombardi.

In addition, Fr. Lombardi said the they discussed inter-religious dialogue and Middle East peace, with both reaffirming the need for a two state solution. He said the US president “reiterated his commitment to reducing the incidence of abortion”.


President Obama’s parting words to Pope Benedict Friday were that he looked forward to future strong relations between the United States and the Holy See, Pope Benedict told the President: “I thank you for all your work! I’ll pray for you!”

via radiovaticana.org

Video coverage of the public portion of their meeting can be viewed here.

The Access - universal weight machine

The Access is a universally accessible weight machine, in the running for the James Dyson Award.

The Access was inspired by the difficulty, after the designer saw a man in a wheelchair arrive at a gym, with a bag full of homemade gadgets attached to the back of his chair. In the following hour and a half he spent more time fiddling with the equipment and getting in and out of the chair than he did working out. Surely, he wasn't alone: Almost no gyms have equipment for the handicapped.

The designer's still anonymous, because the design itself is competing for the James Dyson Award, a global competition to find the cleverest student-designed concepts (after the spirit of Sir James and his ubiquitous vacuum). The Access has two arms that extend laterally, and which can rotate up to 180 degrees, each independently. That allows anyone to configure it to their specific need:

via fastcompany.com

A video is shown below.



The entry is in second place and voting is still open - -entries are all now online, and by registering, you can vote for the best (and worst) until July 20th.

Keeping kids fed all year

The US Department of Agriculture's Summer Food Service Program "serves meals at supervised sites near where children live in the community." It helps bridge the gap for those children who receive meals during the school year, but may go hungry in the summer months.

The program can always use volunteers. If your community needs help, visit the link above to see how organizations can sponsor SFSP in your area.

To find your state agency that handles Child Nutrition programs, click here.

The Voices of Lupus

A NY Times feature - the Voices of Lupus featuring six people who have lupus.

from the article:

Lupus affects more women than men, and is more common among blacks and Asians. The inflammation associated with lupus affects everyone differently, attacking skin, joints, kidneys, the heart and lungs. Symptoms, which often flare and subside, can be vague, mysterious and frightening and show up in a variety of forms in different patients. They include, fever, fatigue, joint pain, anxiety and mental confusion. Others symptoms include a butterfly-shaped rash on the face, skin lesions, mouth sores and hair loss.

For questions about lupus, go to the Consults blog, “Ask an Expert: Understanding Lupus.” Dr. Richard Furie, chief of the division of rheumatology and allergy-clinical immunology at North Shore-Long Island Jewish Health System, is answering reader questions.

House of Lords defeats assisted dying bill

via BBC News:

A move to make it legal to help a terminally ill person to die has been defeated in the House of Lords.

The measure would have removed the threat of prosecution from those who go abroad to help an "assisted suicide".

...

The Care Not Killing Alliance, an umbrella group of doctors and organisations opposed to changing the law, labelled the amendment "dangerous".

They argued it runs the risk of vulnerable people being pushed into going to clinics like Dignitas against their will.

Free accessible software for computer users

There are many software resources out there that are available for free, which provide access to computers for those with disabilities. (For a great discussion of what's out there and how it's used - or not used- in the educational system, click here.)

My SmartNav stopped working this weekend. Gamers use them for hands free gaming, but I use it to move my cursor and click. Basically, you wear an adhesive dot - on your forehead, eyeglasses, the brim of a hat, your knee, etc. - and direct it at an attached external camera to control the cursor. The device is costly so it's not something I will replace immediately.

But I googled and found a program called Camera Mouse 2009, which is free and will help me out. You do need a webcam to use it, but it's easy to learn.

I was very grateful to find it and would like to pass it along to anyone else who would find such a program useful.

A short film on disability

This short film by Praveen K. raises the question of how we see what we choose to see as it follows a young man getting out of bed, riding to work on a scooter, seated at his desk working - and then shows him leaving work on crutches, followed, in part, by the message that we see what we choose to see and the words: "There is only one disability - the disability to accept".

Literacy program volunteer Leonardo Camargo talks about his work

Leonardo Camargo, a recent college graduate, is interviewed in this video by SCI-Peers.org about his volunteer work in literacy training. He describes how important literacy is to accessing health care, as well as his goal of obtaining employment as a result of his volunteer work.



In the next video, Leonardo talks about his college education and his accident and spinal cord injury.

Glucose testing a la Nintendo DS...and a Didget

BoingBoing reports about the pre-launch page for the Bayer Didget, a device that rewards users for consistent testing. It was invented by a parent who noticed his son would lose his blood glucose meter, but never his Gameboy. The Didget was designed by both of them and is

a blood glucose meter which plugs in to the DS / DS Lite's Slot-2. Consistent glucose testing by the diabetic child (or adult, presumably) is rewarded with points in a game that can be used to buy items or unlock levels. As with the the 'iPlayer' hardware video decoder for the DS which Cory recently posted, the downside is that the new DSi doesn't have a Slot-2.

The gadget provides two modes for users - a basic mode (L1) which requires inserting the test strip in and out and an advanced mode (L2) which includes the basic mode with personalized treatment goals.

I noticed the pre-launch page is UK - based, but that they are building a web community that will be called "Bayer Didget World" and mention late summer to check back. There is also a way to sign up for more information over there if you're interested and/or have a loved one, friend, family member, patient, etc. who might find this gadget motivating - or make treatment a bit less scary.

Wimbledon hosting inaugural women's wheelchair tennis doubles

Happy 4th of July to my readers.

Wimbledon, which began holding wheelchair tennis competition in 2005, is holding its first women's wheelchair doubles tennis event this year.

The History

Wheelchair tennis has proved highly popular with spectators at The Championships since the first men’s doubles exhibition was staged in 2001 and the popularity has only increased since the first Wimbledon Men’s Wheelchair Doubles in 2005. The sport is now firmly established at all four Grand Slams. This year’s first women’s event will follow the same format as the men’s doubles, with four of the world’s leading women’s doubles partnerships competing for the top tier of world ranking points in an event sanctioned by the ITF as part of the global NEC Wheelchair Tennis Tour. via paralympics.org


The Players

Dutch top seeds Korie Homan and Esther Vergeer will play Lucy Shuker (GBR) and Daniela di Toro (AUS) in Sunday’s Women’s Wheelchair Doubles final at The Championships after di Toro and Shuker beat the second seeded pairing of Florence Gravellier (FRA) and Jiske Griffioen (NED) 64 64 in Friday’s semifinals.

Di Toro and Shuker won the closest of Friday's two matches, the Anglo-Australian pairing gaining an immediate break of serve to go 2-0 ahead and only being taken to deuce once in the first nine games, that coming in Shuker’s opening service game.

via itftennis.com

The finals will be played Sunday.

[image description: Esther Vergeer is shown preparing to hit a tennis ball with her racket.]

Student invents escalator that can transport wheelchairs

It's also energy efficient. (A photo can be found at the link).

Moving plates form a platform to carry wheelchairs on the escalator, invented by Jesus Sanchez for his final graduate thesis at the Universitat Politècnica de Catalunya. Sanchez is looking for investors.

The most obviously clever part of the design is its steps. Normally, the escalator's steps are of a standard width. But at the push of a button, three steps come together, to create a platform that's perfectly sized for a wheelchair.

As Sánchez points out, such a dual-purpose escalator could present significant cost savings for builders who would otherwise have to install an elevator.

via FastCompany.com

Faith communities and disabiity

An article over at pbs.org discusses various faith communities and inclusion of people with disabilities.

Reverend Bill Gaventa of the Boggs Center on Developmental Disabilities:

In every faith community there is a scriptural basis for welcome and hospitality. But you’ve also got congregations who live in cultures where people with disabilities have been hidden and ostracized and devalued in lots of ways, and too often faith communities sanctify prejudices in the community rather than challenge them. It shouldn’t be easier to get into a bar than a church.


Rabbi Grossman of the Adath Israel Congregation in Lawrenceville, NJ, notes how his synagogue is known as a 'special needs community' when it makes up a small percentage of who attends, but says "I think it defines the synagogue because it simply doesn’t happen elsewhere." He adds that "you got to create the environment where everybody has a place, and if you start with that notion, then everything flows from there."

Skallagrigg

I'm reading Skallagrigg, a 1987 novel by William Horwood about what's been described as a "mythical protector of disabled people". The book tells the story of Arthur, a young disabled boy thought to lack intelligence because he can't speak, who is placed in an asylum in the 1920's and Esther, who lives in 1982. Esther, who has cerebral palsy, is institutionalized by her father, but eventually lives with him. She designs a computer game about Skallagrigg which is then deciphered by an able bodied computer gamer seeking answers, after her death, about her work and the Skallagrigg, who is only known to the disabled children who "look and keep on looking".

The book describes the dehumanization of life at the asylum, where Arthur is called by the wrong name, stripped of his few meager belongings and sadly neglected until he winds up in the infirmary, close to death, holding onto hope only through knowing about the Skallagrigg. In particularly touching prose, the author writes about Arthur "losing the sky" as he lays in a bed, reaching up to a window so high it hides his view from outside the institution.

The book also explores the issues facing Esther's father, although I haven't finished it yet so can't write about it at length, but the struggle of Esther and her father in their relationship is portrayed, when her father, after years of visiting her, brings her home.

A movie was also made by BBC and is available for viewing on YouTube since no DVD was released, but after watching a bit of it, I highly recommend reading the book as well, which is a completely different experience.

BBC reports "veterinary approach"used in Greek mental care facilities

A BBC reporter writes that twenty years after a scandal about care conditions in Greek mental care facilities, she witnessed patients tied up in a building in so much disrepair that it appeared to be abandoned.

Chloe Hadjimatheou went to the Women's Clinic at the Dromokraitio Psychiatric Hospital in Athens, which houses about 300 patients. When she saw wide leather straps and buckles next to the beds, the head nurse told her:


"We have to keep some patients tied at night to prevent them wandering around and waking the other patients," Head Nurse Maria Makraki explains.

Dr Astrinakis interrupts her: "Just like a dog you tie up to stop it wandering off… this could be considered the veterinary approach to psychiatry."

He points to buckets below the beds that act as make-shift toilets.

...

Nurse Makraki tells me that staff shortages mean that there are usually only two nurses caring for around 30 patients.

That is half of what is required to provide basic care.

Stella Galianos, a psychologist, estimates that in every clinic at Dromokraitio hospital there are around three to four people tied to their beds.

I ask her if the woman I saw could end up tied to her bed for years.

"Yes definitely."

And, although the Athina Residential Home was pointed out to the reporter as an example of reform, the staff there went unpaid for six months last year. In light of the issues, the European Union has told Greece that "if it does not come up with roadmap for psychiatric reform by next month, EU funding will be cut from social projects across the board."

WordQ SpeakQ software demo

I'm trying out a 30 day demo for the WordQ SpeakQ software , which includes a speech recognition feature along with word prediction . I found out about it at Pitt Rehab.

So far I'm very pleased with it and getting excellent results in every application. It works better with a headset microphone, but it has been working with the built in microphone on my laptop well enough to browse the web, use social media sites and blog. This is a big plus, since I don't like wearing headsets.

I tweaked the settings a bit.

1. The software has settings which allow you to leave the microphone on all of the time, although the default setting turns it off if you edit. I found the default to be annoying because I was constantly turning the microphone back on.
2. The program will read words and sentences back to you if you don't change the settings, which I did, but that's a useful feature at times and for many with other disabilities.

As Greg pointed out, the only issue is that the software costs more than dragon naturally speaking, but considering how many hours a day it would save me, it's really a no brainer decision to put it on my wish list - in front of the bath lift I need. That's how good it is.

Seniors' falls from walkers and canes studied

A study showing that over 47,000 seniors are treated for falls annually from walkers and canes stated that more need to be shown how to properly use the devices safely, suggesting doctors do so prior to prescribing the mobility devices.

I have another take on this issue. I can't tell you the number of times I've been out and seen folks using canes or walkers when they clearly appear to be in need of a wheelchair. They may lack balance or the stamina, causing them to veer or stumble in a crowd. I'm not questioning the selection of the device for them some of the time, but it's clearly not working out in public in crowds.

I know many of my friends with long term disabilities use more than one type of mobility device, so when I see this, it makes me wonder if doctors are suggesting to seniors that a scooter or wheelchair might be a good idea for longer distances, although a cane or walker works at home. Such an approach might not only prevent falls, but maximizes the mobility of the person. It may conserve their energy so that when they are home alone, they are less likely to fall.

In order for this approach to work, however, we need to get beyond the stigma of using certain devices and certainly have to stop treating their use as an indication of not trying hard enough or failing at recovery. Certainly maximizing function is a good thing, but it becomes counterproductive when someone suffers multiple falls and resultant injuries, as I often see.

In search of....curb cuts?

In this video, Wheelchair Kamikaze, our host of past NY tours, goes in search of the Spirit of Audrey Hepburn statue in New York. However, he winds up spending quite a bit of his ride through NY city looking for curb cuts and facing some mighty big trucks head on....

Netflix, prize economics and awarding innovation

I have to give Netflix a lot of credit. They do a good job of keeping a customer happy.

For example, on Friday night I discovered one of the DVD's they sent me was damaged. I reported it, but because of the timing, they couldn't send a replacement in time for the weekend. Yet when I checked my queue, two of the movies in it were ready for streaming under instant play. This is, of course, in addition to all the movies already available to stream.

So when I read in the NY Times about how Netflix is using prize economics to find ways to improve their business, I wasn't surprised. It seems that they're running a contest with a million dollar prize awarded to "the first contestant that could improve the predictions by at least 10 percent" of the movies they recommend to customers. After three years and more than 50,000 contestants,

[o]n Friday, a coalition of four teams calling itself BellKor’s Pragmatic Chaos — made up of statisticians, machine learning experts and computer engineers from America, Austria, Canada and Israel — declared that it has produced a program that improves the accuracy of the predictions by 10.05 percent. Under the rules of the contest, Netflix said that other contestants now have 30 days to try to do even better. If they cannot, BellKor’s Pragmatic Chaos will collect the $1 million.

Prize economics, according to the article, is a less expensive way to develop an innovation than in-house r&d. And that, of course, is a good thing for customers because it keeps prices down, while providing better services (in this case, improved movie recommendations).

I'll bet this same idea could be applied to some of the issues facing our government, like areas of health care reform. Imagine if this kind of innovative thinking and open ended approach toward improvement was applied to those areas where health care is costing consumers and insurers the most money. Perhaps those approaching the problem with a prize in mind would come up with innovations that might surprise Congress and the president. I'd be willing to bet that many Americans wouldn't mind awarding that kind of innovative thinking if it led to lowered costs and improved services.

Not that we can compare renting movies to health care - but, then again, in some aspects we can. Because there's no doubt from the discussions I'm hearing on health care that it's become a business in this country. The sooner everyone admits that, the faster we can get to solutions. Because the political discussions about health care aren't working - frequent allusions to party lines and repetitive, old arguments.

Prize economics and awarding innovative thinking. Gotta love corporate America. It's worth a try. Pass me one of those new wheelchair cushions for six hundred bucks - oh wait, let me buy half of one.

If only Buddy had opposable thumbs...

And so I get emails asking me when I'm going to write about the backup aide.

Forget it. I want to.

There are a few logistical problems going on. Nothing those of you who have aides haven't seen before. You know how when you hire people they fudge answers to questions - and don't tell you they need to smoke every fifteen minutes? That's a bit of a problem when you're a quadriplegic around second hand smoke, even when the person smokes outside, if the windows are open in the summer. Or that because they don't have a car they expect you to be their taxi cab? Or they run out of money and need x,y, or z and have to borrow some for this or that and forget to repay it? Heck, if I had extra money I'd be putting it toward hiring someone more experienced.

Sigh.

In the meantime, the good news is that around this aggravation, I've managed to stay productive , although I have lost sleep trying to juggle things. And I have a cough, but it's getting better the more the smoke dissipates. It comes and goes, like many other things.

I thank Meredith for her assistance in this process as we find backup help. And Buddy, my cat, who ultimately would be the best solution for backup help if only he had opposable thumbs.

Family caregiver contracts: a solution for some

The NY Times features an article about an arrangement some families are finding workable: when a son, daughter or other family member can be available for caregiving in the home, but can't afford to lose income, a caregiving contract can be drawn up between a parent who needs in-home care and that person.

Although the idea is somewhat new, it can make sense in a few ways, according to the article and elder law attorneys who were interviewed, since it is a legitimate way of providing in home care, while at the same time it allows the family member to continue to earn money for his or her own retirement.

Elder lawyers have been discussing care contracts or caregiver agreements for years, but interest has picked up since 2006, when Medicaid eligibility requirements tightened. As parents “spend down” their assets to qualify for Medicaid, which pays for most nursing home care, they face stiff penalties if they simply give family members money.

With a formal caregiving contract, however, elders can show that they were paying for services rendered, said Richard Kaplan, a University of Illinois law professor who has studied care contracts: “Money can be transferred to younger relatives without triggering a penalty.” Assuming, of course, that those relatives legitimately take on the task.

via newoldage.blogs.nytimes.com

Never Can Say Goodbye

I was working when the news broke about Michael Jackson's cardiac arrest and subsequent death yesterday. I remember Michael when he was very young and singing with the Jackson Five and when they had their TV show. But it's this song that I've always loved the most, one that was played over and over again in the quadrangles at Livingston College in Rutgers University. Livingston was an experiment in diversity back then, and the music that blared across campus was a mixture of folk, Motown, and rock. I spent a year there as an early admission prior to moving across the river to Rutgers College and never got over missing the music in the more sedate setting at Rutgers in New Brunswick.

RIP Michael.



[image description and credit: The photo above is of Livingston College in 1969 prior to its opening. Two male black students, a white female student and white administrator stand in the foreground, talking. Behind them are the dorms set in a quadrangle. A moving truck is shown toward the right as workmen unload mattresses. The photo comes from Rutgers Through the Years website at rutgers.edu and you can view a timeline here. ]

Check out Winners on Wheels- WOW!

This video shows activities kids in wheelchairs can do through the group Winners on Wheels, also known as WOW. A parent discusses the changes she sees in her daughter after participating in WOW activities.


You can learn more about WOW at their Oregon WOW site here.

US Department of Labor offers monthly statistics on employment of individuals with a disability

via US Department of Labor site:

In June 2008, questions were added to the Current Population Survey (CPS) to identify persons with a disability in the civilian noninstitutional population age 16 and older. The addition of these questions allowed BLS to begin releasing monthly labor force data from the CPS for persons with a disability. The collection of these data is sponsored by the Department of Labor’s Office of Disability Employment Policy. Publication of CPS disability data began in February 2009 with the issuance of labor force data for January 2009. Explanatory materials are available on the frequently asked questions page. These materials provide information on comparisons with other data sources, variability of the data, and the types of data available. Additionally, links to historical data and alternate formats are located below.

You can view the statistics here.

Nick Jonas testifies before Senate hearing on federal funding for diabetes research

Nick talks about living with Type I diabetes since the age of 13, when he was diagnosed with diabetes, and how he wishes to be a positive face for the disease, showing children they can live their dreams while living with diabetes. On a personal note, one of my nephews has had Type I diabetes since he was a toddler. He, too, is living his dreams as are many others.

Press release- EEOC site:

KMART SUED FOR DISABILITY DISCRIMINATION FOR FIRING GREETER WHO USED CANE

Retail Giant Punished Worker for Back Impairment, EEOC Charges

NORFOLK, Va. – National retail giant Kmart Corporation violated federal law by firing an employee because of his disability, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed yesterday under the Americans With Disabilities Act (ADA) on behalf of a former worker who uses an assistive walking device.

The EEOC’s suit, filed in he U.S. District Court for the Eastern District of Virginia (Equal Employment Opportunity Commission v. Kmart Corporation, Civil Action No. 2:09CV291), asserted that around September 2004 Alonzo McGlone was hired as a greeter at a Kmart Super Center in Norfolk, Va. McGlone, who has a debilitating back impairment, uses a cane to assist him in walking and standing. The EEOC’s suit charged that McGlone was successfully performing his duties as a greeter when he was observed using his cane. According to the EEOC, McGlone was fired because of the use of his cane.

The EEOC filed suit after first attempting to reach a voluntary settlement out of court. The EEOC's lawsuit seeks reinstatement of McGlone into his former position or an equivalent one, as well as back pay, compensatory damages, and punitive damages. The EEOC also seeks an injunction ordering Kmart to institute and carry out policies, practices, and training programs which provide equal employment opportunities for persons with disabilities, and a work environment free from disability discrimination.

“Mr. McGlone lost his job because he needed to use an assistive device to walk,” said Herbert Brown, director of the EEOC’s Norfolk Local Office. “It is unfortunate that many employers still deny people who are ready and able the opportunity to work simply because of a disability. The EEOC will continue to fight for the rights of people victimized by such prejudices.”

During Fiscal Year 2008, disability discrimination charge filings with the EEOC nationwide rose to 19,453 -- an increase of 10 percent from the prior fiscal year and the highest level in 14 years.

Lynette A. Barnes, regional attorney for the EEOC’s Charlotte District Office, which includes the Norfolk Local Office, added, “This lawsuit is a reminder that, although we have made great strides in educating employers and the public about disability discrimination, some employers still judge applicants and employees based on a disability rather than on their proven ability to do a job.”

According to its web site, www.kmart.com, Kmart is a wholly owned subsidiary of Sears Holdings Corporation. As of January 31, 2009, Holdings operated a total of 1,368 Kmart stores across 49 states, Guam, Puerto Rico, and the U.S. Virgin Islands.

The EEOC enforces federal laws prohibiting employment discrimination. Further information about the EEOC is available on its web site at www.eeoc.gov.

Press release via site

Comings and goings

So it's the Year of Independent Living and what better time to discuss - independent living and hiring aides?

I've spent the better part of the last week training a new backup aide. This is difficult to do around my work, but obviously when a new person comes on board, he or she doesn't know where anything is, what to do and, to some extent, how to do it, depending on the person.

Yesterday the new aide arrived and told me she had family issues which might mean she has to give up the job. Of course what she doesn't understand is that she hasn't even begun. She's still at the point where she thinks the job is about cleaning, not about personal care but we're getting there. It takes time. One thing I've learned is you can't show a person more than one or two things at a time when there is a complex care situation.

Of course I am sympathetic to her personal situation and do want her to feel free to go do what she has to. However, because it's time consuming I am not going to continue training her until she lets me know her plans.

I've written before about the relationship between a personal care assistant and a person with a disability. It's a two way street that requires good communication. One of the things I've learned is that with a good aide, there's a flow which allows me to go live my life and get my work done, which is the point of the whole thing. This takes time and doesn't always work. But it is possible with a commitment by both people to a few simple rules:

1. Honor each other's time constraints. Be clear about what hours the person is working. The aide needs to show up on time and, on the other hand, know she can leave at the scheduled time so she can deal with her other commitments. Unilateral schedule-setting doesn't work and creates resentment. On the other hand , after months of working together, more flexibility can work out, but that takes time. It's a bad sign if you find yourself canceling social plans or dealing with work commitments because your aide changes the schedule without communicating first- or even acknowledging that you have a schedule yourself.

2. Listen to each other's needs and wants. It doesn't matter if you agree all of the time on every detail, but it does matter that you listen to each other. It's about respect and if that's present, things will work out - usually.

3. Treat the relationship as an investment. Both people are investing time and energy into the relationship. For example, it's never good to take a job as an aide if you can't make a commitment to it since the training is involved and time consuming. On the other hand , it's not good to hire someone about whom you have a lot of doubts to begin with. Move on and interview more people. When you find someone you can work with, chances are the feeling is mutual and there's a better chance your investment will pay off.

4. Keep in mind that aides receive low pay and have other commitments and employment as a general rule. Act accordingly. Do not expect them to drive over at a moment's notice except in the most dire of emergencies. Make arrangements with neighbors and others to deal with unexpected needs. Allow them time off. Remember the golden rule. Being an employer carries responsibilities. Try this for a reality check and insert the situation you're facing:

How would I like to (be called at 3 am to come over?)
(be asked to do things in an unreasonable way because your mother did it that way?)
(have to cancel social/work plans and stay home because my aide changed the time?)
(have things picked on, be rushed when it's not necessary, etc.?)
This can, of course, happen with behavior from aide to employer or from employer to aide, so it's a good exercise sometimes to do- together.

When the relationship with a personal care assistant and a person with a disability does get fine tuned and work, it's a beautiful thing. Most personal care assistants are dedicated individuals who, let's face it, don't do this job for the money. But do make sure they get paid on time. Remember that you're also an employer and you have responsibilities too.

Year of Community Living Announced by President

Yesterday on the anniversary of the Olmstead decision, the president announced "The Year of Community Living" which will include measures to assist Americans with disabilities.
The president said "I am proud to launch this initiative to reaffirm my Administration's commitment to vigorous enforcement of civil rights for Americans with disabilities and to ensuring the fullest inclusion of all people in the life of our nation."

Specifically, the President has directed Health and Human Services Secretary Kathleen Sebelius and Housing and Urban Development Secretary Shaun Donovan to work together to identify ways to improve access to housing, community supports, and independent living arrangements. As part of this effort, later today, Secretaries Sebelius and Donovan will announce several new initiatives including details about increased numbers of Section 8 vouchers and enhanced interagency coordination to address this critical civil rights issue. The initiative also will include listening sessions conducted by HHS across the country to hear the voices and stories of Americans and to keep the President's pledge to be as open and transparent as possible.

via JF Activist, White House Press Release

Promise of lower costs for drugs for some Medicare recipients

The pharmaceutical industry promised to spend $80 billion toward "improving drug benefits for seniors on Medicare" yesterday.

....drug companies would pay half of the cost of brand-name drugs for seniors in the so-called doughnut hole — a gap in coverage that is a feature of many of the plans providing prescription coverage under Medicare. Other officials said wealthier Medicare beneficiaries would not receive the same break, but there was no mention of that in the statement.

In addition, the entire cost of the drug would count toward a patient's out-of-pocket costs, meaning their insurance coverage would cover more of their expenses than otherwise.
via msnbc.msn.com

RoughRoller.com : Rolling through rough terrain, through a desert?

The Rough Roller Off Road wheelchair device is shown in these videos on both manual and power chairs. The Rough Roller device is a large ball that is attached to the front of the wheelchair, lifting it off the ground.

Manual wheelchair in deep sand:



Power chair on rough terrain:

Different Kinds of Privacy

Before I acquired my disability, I took certain kinds of privacy for granted. Those were the days before I had a personal care assistant, who comes into my home and assists me with preparing meals, personal care and other tasks. This involves a certain loss of privacy. I've been fortunate that my personal care assistant, Meredith, guards my privacy vis a vis others.

This isn't such an easy trait to find in a personal care assistant and, yet, it's one of the most important. It's uncomfortable, awkward and inappropriate to have personal information about your disability or life, which someone would not know unless he or she was doing personal care, treated carelessly by someone who doesn't have a boundary.

When I was interviewing my new backup aide Friday, I saw a sheet in the application packet that spelled out the expectations of personal care assistants. I pointed it out to the new aide and mentioned also that she would be privy to certain information I expected to be kept private. I believe this is a person who can and will do that with most information or I wouldn't hire her, but the reality is I never know until someone starts to work for me if that's true.

Some might think I'd be more concerned about privacy issues involving care with someone new, but the truth is that I'm well used to some loss of privacy in that regard. What I'll never get used to is running into someone in town who happens to know some intimate detail of my life that only a personal care assistant would know and finding myself dealing with a loss of privacy on a level few may understand when confronted by an acquaintance having access to that information.

This doesn't just apply to paid helpers, but others. Privacy issues arise with volunteers and friends in the same way. Whenever we are privy to information we otherwise wouldn't have while helping someone, it is best not to talk about that information.

One of my friends underwent a transplant operation and had people dropping off meals for her while she was recuperating. She stopped opening the door, she told me, because one woman gossiped to others about how her usually immaculate house was dirty. The gossip got back to her at a time when she wasn't able to afford cleaning help and certainly couldn't clean herself.

This may not be the same as having someone broadcast details of your personal care around, but it certainly shows how unhelpful- and thoughtless- it is to spread information about someone whose privacy is somewhat compromised. It's best to think about what information should be kept private before speaking to others.

A good rule of thumb is to ask yourself if you would want the same information broadcast about yourself if you were in that position.

Images of Disability and Beauty

This slide show by Enable Scotland portrays photos of people with disabilities, coupled with titles such as future occupations (award winning actress), relationship (loving aunt, apple of her eye), etc. It is entitled "Enable Beauty" on the site.

At the beginning, there is a quote that says : "Everything has its beauty, but not everyone can see it."

Defending my life

I hate conversations, like I had yesterday, where I find myself defending my life as a person with quadriplegia. They usually include questions about how I "can stand" being unable to do so much, implying that what I can't do is what my life is comprised of.

And then this morning I was reading Bad Cripple, where Bill wrote about a conversation he had with a nurse about how decisions are made to end the lives of those with high spinal cord injuries, i.e. quadriplegics.

This is a bunch of nonsense. And, worse yet, these societal notions that some lives are not worth living still affect our health care, education and access to living in the community. As long as people with disabilities are classified into separate categories and deemed as having lives worth living - or not, depending on how disabled we are, we will continue to perpetuate the circular logic that such lives present no opportunity for quality of life.

Imagination is a cruel barometer in determining the fate of someone's life. Not being able to walk is something most people "can't imagine", they say. Having people feed or dress you must be mortifying, they add. And what about those bladder issues? Oh please. Let's grow up.

One of the reasons I played quad wheelchair tennis for years was because I wanted to maximize every bit of function I have. Make no mistake about the fact that most people work toward getting improvements in function and independence, if they survive the injury. I've seen so many people do better than doctors predict and do more than they are "supposed to do". In cases where the level stays the same, people adapt.

No one can convince me that those whose lives are ended out of the fear of others are better off not living. Using an able bodied standard to measure quality of life is ableism, plain and simple. It is rampant in a society that touts physical perfection and independence to a fault.

We need to take a good hard look at our core beliefs about the value and dignity of human life. I am tired of defending my life to others. I no longer list what I can do as if I have to prove that I have value. My life would have value even if I couldn't move anything but my nose - or even that. And don't think I'd necessarily learn to bowl with my nose either. Those days are over too.

I might, however, sneeze at anyone who said "If I were you, I'd kill myself."

Illinois allows online reporting of disability parking abuse

Those of us who use handicap placards and license plates legally to park know how many violators are out there. Now the State of Illinois is doing something about it. They have set up the Secretary of State's website to permit those seeing violations to report them.

via mariondaily.com:

People can now report able-bodied people parking in disability parking spaces or using disability placards without the disabled individual in the vehicle. People can make the report anonymously, but they must be able to report the license plate, disability placard, or disability plate number.

White also warns people never to confront the abuser.

To report abuse, go to www.cyberdriveillinois.com and on the home page click on the icon that says “Complaint Form Parking for Persons With Disabilities.”

Disability , negative medical attitudes and "near death" experiences

Terri tells her story How I DIDN'T Die about how the medical system responded when she had an accident and severed her spine.

She writes about how her family had to fight the medical system to get her the care she needed to survive while doctors told them she would have no quality of life.

It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”

My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.

The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook — to help break up the stuff in my lungs.

Only then did she begin to improve and, eventually, survive her injuries.

She also writes:

A new Website and TV series is looking for first-person stories from patients, their families, loved ones, and doctors about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The website is: http://how-we-die.org/HowWeDie

The series, tentatively titled “Stories,” is being developed by Marc N. Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a veteran network news and public affairs producer. The series will explore experiences that tested or challenged their values and beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions. Visit the site and submit your story! http://how-we-die.org/HowWeDie

If any of you have stories to tell, please visit the above site.

h/t Not Dead Yet

Blending in

I once told my mother that I couldn't wear white knee socks to my Catholic grammar school because everyone else was wearing dark green ones. She asked me if there was a rule prohibiting the white socks and I said no. I was new at the school and at my old Catholic school everyone wore white, so that was what I owned. My mother told me that when the white socks wore out, she would buy me green ones, but there wasn't money to replace perfectly good socks.

I remember slamming my sock drawer and angrily telling my mother that she didn't understand how I felt. She never went to parochial school, I said. She didn't understand what a big deal knee socks were when they were one of the few items you could coordinate differently.

She smiled and asked me why the girls would choose to wear the same color as everyone else if they could accessorize their socks. Then she held up a pair of pink socks and smiled.

So the next day I wore pink socks with my plaid blue and green jumper to school. A few girls came up to me and said they wanted to wear different colors too but everyone wore green. One asked if I was going to wear a different color the next day and I said sure, that I was never going to wear green. She decided that she wasn't going to wear green any more either, because she was bored by it.

Within a week, the playground was full of girls wearing socks of all different colors and my white socks looked as if I was making a fashion statement. My only disappointment was that everyone forgot I started the trend.

I often remember those green socks after I've been out and about and I get a reaction to the way I do things differently due to my disability. I often answer questions with a sense of humor. To this day, there are people convinced that the assistive fork/knife I use is called a camping knife, for example. I tell them that it's a time saver because you don't have to wash both a fork and a knife. Impressed, many ask where I bought mine.

It's clearly an item we all need. It should be sold on TV.

I believe that my mom did me a huge favor by not buying me those socks.

Mark Selvaka on the Mound

Mark Selvaka, who has cerebral palsy, made the varsity Manchester high school baseball team this year as a pitcher. Pitching scoreless innings, he now wears Jim Abbott's number 25.



Mark's interview brought to mind these words:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

Pres. Theodore Roosevelt
Paris, France
23 Apr 1910

Congratulations to Mark on making the team and his great season.

A transcript of this video can be found here.

What a burden: wrongful birth lawsuits

I was catching up on some blog posts from this weekend when I noticed a post over at Media dis&dat about Oregon parents who are suing over the cost of raising their child who has Down syndrome. They claim they would have aborted the baby had they known, but that tests failed to diagnose the condition and want $14 million.

The article states that there are fewer than ten such lawsuits a year, because of the awkward stance parents have to take in claiming that there was a wrongful birth and that the child is a burden. It also notes that some say, in order to preserve a right to damages from medical error, suing for "botched prenatal tests is no different than suing for botched knee surgery". The parents in this case are suing, among other things, for reimbursement from lost wages due to care issues as well as care for their daughter.

I am not going to comment directly on the couple involved in this lawsuit, but wish to discuss how our society responds to families with a member who has a disability. The reality is that there are a number of burdens involved here, but it's unfair to say that it's the child who is the burden.

Let's take a look at how our society fails to assist parents of children with disabilities. We offer prenatal testing and abortion, but we sure don't provide enough backup care or financial assistance.

The solution is not to have lawsuits where individual parents sue for 14 million dollars while a father has to sue Medicaid to provide diapers for his daughter - or faces having to institutionalize her .

Some disabilities are more expensive than others. This is a fact that has been swept under the carpet for years. We don't talk about it because we leave it up to individual families to somehow figure it all out, but as our country faces crises in health care, we need to address it swiftly and with a moral conscience. We also need to step up in our own communities to help each other. Government programs can't address every need these families face.

Those who value human life and believe in keeping families together need to consider questions such as these:

Are we going to continue to ignore the financial burden on families of having a child with a disability and therefore continue to label the child as a burden? What does that say about our belief that all human life is sacred?

When will we stop condoning the institutionalization of people with disabilities which separates family members and, although it is more expensive, has been part of our system for years? Does a child with a disability have less of a right to be part of a family out in the community?

When will we stop using a piecemeal approach to these issues through our legal and medical systems, resulting in large settlements for some and poverty for others?

How long can we continue to ignore our individual moral obligations toward families facing these issues in our communities? What can we do in our own parishes to assist these parents?

The important thing here is not to blame parents or the children, but to address their needs. That is our burden - together. Until we start doing that, we have no right to judge anyone.