WHEELIE CATHOLIC

"Keeping My Hands Free" from The Digital Awakening

rampracer@gmail.com (Wheelie Catholic) — Mon, 09 Nov 2009 14:59:00 +0000

Peter Tan has a great post up about how using a bluetooth headset and devices like it help him live more productively with his disability. It highlights how more and more mass produced items are being used by people with disabilities every day - depending on their features, such as ease of putting it on, as in Peter's case.

He writes:

A tiny device such as the bluetooth headset has done wonders to my freedom while I am out and about. It allows me to answer the phone while I am driving. I need both hand to drive – the right for the steering wheel and the left for the accelerator and brake.

He now uses a Jabra model that's easier for him to put on. You can read the entire post at the above link.

French parents plan to broadcast life of 32 year old daughter with CP via web

rampracer@gmail.com (Wheelie Catholic) — Sat, 07 Nov 2009 15:33:00 +0000

The parents of 32 year old Anne Lamic plan to broadcast her everyday life via the web, saying they want to "allow people to see handicaps in ways that are real, everyday and familiar". They do not plan to film private moments, such as baths and the site includes a warning about her seizures.

Disability advocates disagree, some "dismayed — especially because Anne Lamic, whose family says she has physical and mental abilities comparable to a 1-month-old infant, cannot have a say in the matter", according to the article. Others support it as a way to stop hiding those with disabilities and say that France trails behind the U.S. and Canada "on issues such as visibility and accessibility to public transport and buildings". Still others question why the parents don't take Anne out in public, to which her father, who used to work in a medical care center, said that she needs to be transported by ambulance since she has "to remain lying down".

The website is called Doudou World and can be found here.

Support services offered for those with brain injuries in Massachusetts

rampracer@gmail.com (Wheelie Catholic) — Sat, 07 Nov 2009 14:44:00 +0000

Support services for people with brain injuries in Massachusetts are offered for free through BIA-MA, the Brain Injury Association of Massachusetts.

The statistics on brain injuries are startling, according to the CDC, every 21 seconds, one person in the United States sustains a traumatic brain injury and each year nearly 80,000 Americans experience the onset of disabilities resulting from brain injuries. A survivor of severe brain injury will require between $4.1 million and $7 million in lifetime care and hospital costs relating to TBI are estimated to exceed $48 billion annually.
With such frightening statistics, BIA-MA has created support programs located throughout the state to provide survivors and their loved ones with a forum for sharing information, meeting others and participating in a variety of educational, recreational and social activities.
via ojournal.com

You can visit the links above for more information or call their toll free Brain Injury help line at 800-242-0030

One Degree of Separation

rampracer@gmail.com (Wheelie Catholic) — Fri, 06 Nov 2009 13:27:00 +0000

The Christopher & Dana Reeeve Foundation has a new online campaign called One Degree of Separation, a name taken from its recent Paralysis Population Survey. One in 50 Americans lives with a form of paralysis. This campaign showcases 35 of the 1,275,000 people who are. Any donations will be used toward the foundation's goals of care, including grants, information and advocacy, and cure of paralysis.

Congratulations to the New York Yankees on their World Series win

rampracer@gmail.com (Wheelie Catholic) — Thu, 05 Nov 2009 13:52:00 +0000

Congrats to the Yankees for their win in the World Series in their new stadium.

Sorry, Phanatic - not this year, buddy.

[image description: The Phillies' mascot, the Phanatic, a giant green bird wearing a red cap and a Phillies shirt, stands behind the World Series trophy last year.]

Vancouver Adapted Music Society's recording studio

rampracer@gmail.com (Wheelie Catholic) — Thu, 05 Nov 2009 13:28:00 +0000

A video about the Vancouver Adapted Music Society's free to use recording studio, along with other resources.

The effect of cutbacks: Terri's testimony before NY Senate Finance Committee

rampracer@gmail.com (Wheelie Catholic) — Wed, 04 Nov 2009 16:25:00 +0000

Terri has posted about her testimony Monday in front of the NY Senate Finance Committee. Here's her statement:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.

As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

The unenlightened attitude of higher education

rampracer@gmail.com (Wheelie Catholic) — Wed, 04 Nov 2009 14:02:00 +0000

Lest you still harbor the illusion that colleges and universities in the U.S. provide a place where students with disabilities will find the greatest minds working toward inclusion, here's a story for you.

Joshua Jackson, a quadriplegic student at East Central University, has been notified that he cannot remain in the dorms after the fall semester unless he provides an aide or a lift for himself since he can't transfer by himself from his wheelchair to his bed. The institution of higher learning is calling this a safety violation, although Jackson notes his concern with the university's policy that elevators are turned off in the event of an emergency.

Here's Jackson's dilemma: money. The cost of providing an aide, he estimates, would be $11,000. Lifts are also expensive and many cannot use them without assistance.

So, in effect, Jackson is being evicted from his dorm, which could end his education.

The university, apparently, has not made any attempt to find a volunteer student to assist or offer any other solution, simply relying on a liability argument.

UK father fighting for son's life as court decides whether to extend withdrawal of life support parameters

rampracer@gmail.com (Wheelie Catholic) — Mon, 02 Nov 2009 15:39:00 +0000

A British court will decide the fate of a one year old boy whose father is fighting the hospital's decision to withdraw life support. According to the Guardian, Baby RB "was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth." The article states:

In the UK an estimated 300 people have got CMS, with varying degrees of severity. Symptoms include muscle weakness, especially in the face; people are unable to smile and suffer from double vision and drooping eyelids.

This is the first case involving a court going against a parent's wishes on the issue of withdrawal of life support from a baby who does not have brain damage. In March, Baby O.T. died after a high court ruled he should be removed from life support against the wishes of his parents. Baby O.T. had a a rare metabolic disorder, brain damage and respiratory failure. Polls and surveys taken indicate the majority of people in Britain feel that this decision should be left up to the parent.

The boy's father will submit a video of Baby RB playing with toys and engaging with his parents to the court. The father's lawyers "argue that the baby's brain is unaffected by the condition and that he can see, hear and feel and recognise his parent".

A new medical evaluation is now being done to assess whether a tracheotomy would allow the child to be taken off a ventilator and sent home.

This tragic case is yet another reminder how little value is given to the lives of those with disabilities. Instead of improving at home care so the issue of whether the child needs a ventilator isn't confused with a quality of life assessment, society continues to tolerate dangerous encroachments on the dignity and rights of people with disabilities.

Update: In this CNN article, it is noted that there are different types of CMS and a lawyer on the case indicated the type has not been identified. It also states:

The Mayo Clinic, one of the leading hospitals in the United States, says on its Web site that "different forms of CMS vary widely in their symptoms, from mild to severely disabling. With accurate diagnosis and appropriate therapy, even potentially fatal forms can usually be treated successfully."

NYC Marathon winners and Team Reeve

rampracer@gmail.com (Wheelie Catholic) — Mon, 02 Nov 2009 15:19:00 +0000

Edith Hunkeler of Switzerland and Kurt Fearnley of Australia won the NYC Marathon wheelchair division. They are pictured at left, wearing orange jackets and wreaths in their hair, and holding bouquets after the race. Hunkeler dubbed this marathon the toughest and said it is "always the highlight of my year".

Team Reeve pursued its goal of raising $26,000 to help cure paralysis at the NYC marathon. Matthew Reeve, Christopher Reeve's son, (pictured at right in his Team Reeve shirt while running) finished the race in a bit over four hours. Matthew has raised $18, 672.00, according to his fundraising page, which, if you'd like to donate, can be found here.

A video about the team's goals of Care and Cure is shown below.

Track and Field Videos on Flotrack

Thanks, Governor Corzine: Cash Model In home care coming to fruition

rampracer@gmail.com (Wheelie Catholic) — Sun, 01 Nov 2009 13:54:00 +0000

I've blogged before about the autism legislation that Governor Corzine has signed in this state, all of which is important in providing access to care for families with children with autism.

But there is legislation closer to home that is about to be signed, the Ruiz/Vitale bill. The personal care assistant program (PASP), a state program in NJ which provides in home care to those living with a disability by providing help through agencies who send aides, is now offering the option of a Cash Model, providing even more flexibility. Instead of being limited to hiring an aide through a traditional home health care agency, the consumer can now, among other things, use the funds to hire other people - perhaps neighbors or friends. This empowers the person with a disability, allowing him or her to manage the details of the care received. Trust me, there isn't a more important determinant of quality of life than this when you have a disability. The legislation for this is on Governor Corzine's desk, after a time period of trying the program out in different counties. I'm extremely grateful that I'll soon be able to use it.

This change will make an enormous difference. It will empower those of us who need at home care to manage our own funds and hire people in our community who are right at hand, such as neighbors and friends, to manage our daily tasks. For someone like myself, who lives alone, it will mean that I will have the ability to go outside an agency to make flexible arrangements with people that won't require I wait two or three days for a backup or -worse yet-go without help. Due to the shortage of home health care aides, this can - and does - happen. I'm extremely grateful that people have listened to these concerns.

I appreciate the years of work that implementing this change has taken. First, the Cash Model was tried in various counties and tweaked. Thanks go to the many offices for disability services in the state and the pioneers who tried it. I'm also grateful to the governor and his staff for listening to the needs of the disability community and the legislators who have pushed for the legislation.

Without this program, many of us could not work or live in the community. It is my fervent wish that more states look to models like PASP and its Cash Model to empower people with disabilities in their communities. In the meantime, I will continue to push for those changes and remain grateful for the hard work of everyone involved.

A Prayer to St. Anthony

rampracer@gmail.com (Wheelie Catholic) — Sun, 01 Nov 2009 04:59:00 +0000

Whenever I lost anything as a child, my grandmother would tell me not to worry, just to pray to St. Anthony, the patron saint of lost things, and it would be found. I'd often return to her a half hour later, holding up whatever I lost and she'd say "See? St. Anthony always comes through."

As I grew older, I went to her with other problems. She would still tell me to pray to St. Anthony. I would make a face, caught in the adolescent mire that convinced me my problems were beyond repair.

One day after I rolled my eyes at her, my grandmother said to me, her blue eyes tearing up "St. Anthony isn't just for finding lost things. He also deals with lost souls."

"Lost souls?"

She nodded. "And if he can handle that, I think he can handle just about anything."

There wasn't much I could say to that, so I shut up, stopped rolling my eyes and gave St. Anthony another try, even though my problem du jour seemed insurmountable. It wasn't solved in a half hour or even a day, but I found that prayer and time did heal it. I began to grow up and learn that healing something doesn't always mean that what we're fixated on gets better. Often, we heal when we accept things and move on.

I suppose on this All Saints Day, a prayer to St. Anthony is in order. It's not just for the lost things in my life, but to help me keep my perspective when I face unanswered questions or when I struggle to find words to comfort a friend whose parent just died, as I had to do this week.

St. Anthony can find anything. Most importantly, for anyone who feels despair, he can even help us find our faith when we think it's lost.

Yankees take game 2 of World Series

rampracer@gmail.com (Wheelie Catholic) — Fri, 30 Oct 2009 16:21:00 +0000

The Yankees fought back and won game 2 of the World Series last night. On to Citizens Bank Park for the next three games.

Short on time, but do want to show a photo of a Yankees fan who has decorated his scooter in honor of his team. He has a huge Yankees cap above his head, a baseball bat armrest and a Yankees logo on the side, all done on a blue scooter.

May the best team win tomorrow. (That, of course, is the Phillies!) :)

Phillies win Game 1 of the World Series

rampracer@gmail.com (Wheelie Catholic) — Thu, 29 Oct 2009 13:26:00 +0000

...and Cliff Lee casually catches a ball behind his back as he pitches a 6-1 game. The Christian Science Monitor's headline is:

Cliff Lee beats Yankees with one hand behind his back

He's being called a "cool customer" in the Philadelphia Inquirer this morning.

Two homers by Utley have Philly sports writers talking about Ut-lee this morning. Utley, says writer Bob Ford, set the tone for the series - again.

About the only complaints in Philly this morning are from the Inquirer journalists, who spent the game in far from glamorous conditions.

Frank Fitzpatrick writes:

Four hours before Game 1, the main press box resembled the Tokyo subway. Bodies and computers made things impassable. The adjoining work rooms were overflowing too, the precious spots apparently having been claimed at dawn by savvy veteran journalists.

And it got worse from there.

You can see a video of post game interviews here.

On to Game 2.

Dr. Oaks, the coach

rampracer@gmail.com (Wheelie Catholic) — Thu, 29 Oct 2009 13:00:00 +0000

The Body and Soul soccer team at St. John's Hospice has the backing of some special people: Sr. Mary Scullion, Jon Bon Jovi and Dr.Wilbur Oaks. They all play a part in helping the homeless men find employment and giving them a chance. Sr. Mary Scullion sends along team members, Jon Bon Jovi helps keep it running and Dr. Oaks coaches soccer and life skills.

The doctor still teaches 25 hours a week at Hahnemann University Hospital after being there for 51 years. He played soccer until his knee went bad at age 65. He spent this year coaching basics. He has three goals for the Body and Soul soccer team, he says:

"I want to make them a better person," he said. "I want to make them a better athlete. And I want to get them a job."

And he believes that the lessons learned on the soccer field will translate into success off the field for the homeless team members.
"Learn something from the loss, then win the next one," he instructs. "It's all up and down. That's what sports is about. That's what life is about."

St. John's Hospice Mission is:
Saint John’s Hospice
seeks to be a community
grounded in
faith and service
where homeless persons
find dignity,
respect,
nourishment,
and opportunities
for new beginnings.

You can find a link to St. John's Hospice here. For a list of ongoing items that are needed or other ways to help, click here.

Court ruling on insurance company denial of treatment for autism

rampracer@gmail.com (Wheelie Catholic) — Wed, 28 Oct 2009 12:35:00 +0000

In a preliminary ruling, Los Angeles County Superior Court Judge James C. Chalfant found that Kaiser Permanente's refusal to pay for a child's autism treatment because the provider was not licensed by the state runs counter to California's Mental Health Parity Act. That act requires insurers to cover care for mental and behavioral problems at the same levels they do for physical illnesses.

"A refusal to pay for . . . services based on the fact that the provider is not licensed is inconsistent with the intent of parity," Chalfant wrote in his Oct. 20 ruling.

The rest of the article can be found here.

Metro area Phillies and Yankee fans talking trash - oh you know it

rampracer@gmail.com (Wheelie Catholic) — Tue, 27 Oct 2009 21:32:00 +0000

Of course they are.

People keep asking me where the line is in NJ that separates out the Phillies from the Yankees fans. I don't see it, although this guy in Delaware is feeling the heat. And people in N.E. Pennsylvania have divided loyalties.

What I do hear is a lot of trash talking.

It reminds me of when my friend and I drove down to Baltimore to play wheelchair tennis against a pack of wheelchair basketball players and proceeded to take them to school. The trash talk was flying, left and right. There were excuses:

"Just learned how to serve" "Haven't played tennis much - basketball's my game" etc. etc.

and then there were pitiful - I'm telling you pitiful - attempts by these hulking paraplegic guys to flatter me into giving them "a break" which meant points. Line calls against them resulted in faces only a five year old would make.

And the trash talk! It flew over the net more than the tennis balls. There were insults, jabs, and jokes of every kind. There was no way to concentrate on a point. It was better to just laugh my way through it , knowing for sure that when I served a ball they couldn't hit, attention to an airplane overhead would be called. Apparently none of these guys ever played a match in Flushing NY, where planes seem to dive bomb you in the middle of a match.

In the end, the trash talk was just a distraction, as it always is. And it will be the same this year with the World Series.

So I don't want to trash talk, but.... I must point out that the Yankees don't even have a mascot , although they used to have one. Guess what it's name was?

Dandy. Yep.

The Phillies have the Phanatic. Been around a long time and important sources say he's the best mascot in baseball. Check this out:

"From the top of his neon-green head to the tip of his bubble-toed size 20 shoes, the Phillie Phanatic is every inch the best mascot in the business. He's as much Philadelphia as cheesesteaks, the Liberty Bell, and Rocky Balboa. Yo, Adrian, I love dat green guy!"
- USA Today

"Baseball's best mascot."
- Tim McCarver, TV analyst

Ha. Dandy. Even the Yankee fans beat their mascot up.

And it costs more to see the Yankees. Double, some say. The Yankees have the highest payroll, the Phillies seventh. And still- no mascot? Tsk, tsk.

The Yankees fans are smug. They say their team has won the series 26 times...but the Phillies won last year.

The Yankee fans are so desperate that they are mocking their opponents as Frillies. It just gives the Phillies and their fans more motivation. Remember, when it comes to fan loyalty:

...while Yankees fans filled only 88 percent of the seats in a brand-new stadium, Phillies attendance was 102 percent of its seating capacity at Citizens Bank Park

That's because the Phillies are the champs.

(Feel free to vote in this poll which dubs the series the "Turnpike Tussle".)

A wheelchair as appliance

rampracer@gmail.com (Wheelie Catholic) — Tue, 27 Oct 2009 12:42:00 +0000

Evelyn Neuhaus discusses attitudes toward wheelchairs (and their users) that she encounters in this video.

Disability Blog Carnival #59: Disability and Work

rampracer@gmail.com (Wheelie Catholic) — Mon, 26 Oct 2009 21:34:00 +0000

Thanks to Liz for putting together a great carnival on the important topic of disability and work. As she points out, it's National Disability Employment Awareness Month and you can count on finding a varied group of compelling blog posts over there.

From artists with disabilities to nonprofit employeees to adaptive technology to stigma to self-care to accessibility to resumes to love of a job - these bloggers have covered the gamut. Please go on over, check it out and spread the word (link)!

Sit. Stay. Read.

rampracer@gmail.com (Wheelie Catholic) — Mon, 26 Oct 2009 04:19:00 +0000

R.E.A.D. - or Reading Education Assistance dogs- are helping children with literacy skills by listening to the kids read in libraries and schools.

The philosophy is simple. Children who are just learning to read often feel judged or intimidated by classmates and adults. But reading to a dog isn't so scary. It won't judge, it won't get impatient, it won't laugh or correct if the child makes a mistake. In a nutshell, dogs are simply excellent listeners. And for shy kids or slow readers, that can make all the difference. via cnn

Volunteers say that the program helps students build confidence, resulting not only in improvements in reading level by multiple grade levels in one school year, but areas like class participation and homework.

Dear Wheelchairmaker

rampracer@gmail.com (Wheelie Catholic) — Sun, 25 Oct 2009 14:12:00 +0000

I ran across this creative video this morning.

Hope you enjoy the rest of your weekend.

Make A Difference Information Network (MADIN) of Kansas

rampracer@gmail.com (Wheelie Catholic) — Sat, 24 Oct 2009 02:46:00 +0000

A new resource site for issues relating to people with disabilities living in Kansas has been launched online. The Make A Difference Information Network (MADIN) of Kansas is a collaborative effort among different agencies, including he Kansas Department of Health and Environment, the Kansas State Board of Education, the Kansas Department of Social and Rehabilitation Services, and Oral Health Kansas. It was previously available only by phone.

via its site:

Some of the resources include, but are not limited to:

Screening, diagnosis, evaluation
Early intervention for infants and preschool children
Parent support groups
Resource materials for families and service providers
Information regarding education, public health and social service agencies
Clinical Information for people with disabilities

Disability Awareness FAIL

rampracer@gmail.com (Wheelie Catholic) — Thu, 22 Oct 2009 21:35:00 +0000

see more Epic Fails

A call to participate in the United We Ride dialogue

rampracer@gmail.com (Wheelie Catholic) — Thu, 22 Oct 2009 12:06:00 +0000

via the NCD-news list serv

CCAM announces the United We Ride National Dialogue

November 2-13, 2009

www.UWRDialogue.org

Please join a Federal Government Online Outreach Effort to Develop New Ideas in Transportation Access for People with Disabilities, Older Adults and Persons of Limited Income

Do you have suggestions and ideas that you would like to share with national leaders that can assist communities to increase access to affordable and reliable transportation services for people with disabilities, older adults, and people with limited incomes?

If so, please register to participate in an upcoming national online dialogue with representatives of the federal government, state and community leaders! For more information, and to register, just click the link to visit the Dialogue website: www.UWRdialogue.org

The Federal Interagency Coordinating Council on Access and Mobility (CCAM) invites you to participate in the United We Ride National Dialogue. This groundbreaking, web-based interactive dialogue is designed to allow a broader range of opinions and ideas to inform future policies, the CCAM Strategic Plan and to strengthen the CCAM's relationship with is vast array of partners and stakeholders, including state, local, and tribal governments, transportation agencies, human service agencies, healthcare providers, employment specialists, educators, and consumers.

In order to capture this critical input, the CCAM is seeking your participation in a 2 week long, web-based dialogue that will begin on November 2nd and end on November 13th. This dialogue will allow participants to submit, comment, and rate ideas interactively on how to increase access to affordable and reliable transportation services for people with disabilities, older adults, and people with limited incomes. Your invaluable participation will directly inform the work of the CCAM on future policy decisions and the Strategic Plan.

Mark S. Quigley

Director of External Affairs

National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

202-272-2008

202-272-2022 fax

www.ncd.gov

You also may want to join more than 2,000 subscribers who receive the latest news from NCD via its listserv. Please sign up at http://listserv.access.gpo.gov/ and click on On-line mailing list archives, then select NCD-NEWS-L and complete the short subscription form.

The Saint Damien Boy Scouts

rampracer@gmail.com (Wheelie Catholic) — Wed, 21 Oct 2009 03:36:00 +0000

A group of boy scouts from Hawaii traveled to attend canonization activities for Fr. Damien of Molokai. Their blog shows videos and posts of their journey, which ended on October 14.

Here's a great video including reflections and thoughts from their trip: