Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Diversity, Innovation and Work

Emphasizing that diversity includes people with disabilities, Assistant Secretary of Labor Kathy Martinez delivered a presentation at the annual partners' meeting of Corporate Voices for Working Families on March 22. Martinez, the assistant secretary for disability employment policy, discussed department-supported resources for businesses. The program concluded with a vibrant discussion between Martinez and an audience of about 60 senior executives from Fortune 500 companies. "Diversity is, and always has been, the essential element in American innovation," Martinez said.

Researchers: Toddler cured of HIV

Excerpt from: CNN Health (click for full article)

 

It's a potential game changer in the fight against HIV, and doctors say it happened almost by accident.

A baby with the virus that causes AIDS was given high doses of three antiretroviral drugs within 30 hours of her birth. Doctors knew the mother was HIV positive and administered the drugs in hopes of controlling the virus.

Two years later, there is no evidence of HIV in the child's blood.

The Mississippi girl is the first child to be "functionally cured" of HIV, researchers announced Sunday. They said they believe early intervention with the antiretroviral drugs was key to the outcome.

A "functional cure" is when the presence of the virus is so small, lifelong treatment is not necessary and standard clinical tests cannot detect the virus in the blood.

NCAA Eligibility: Student-Athletes with Education-Impacting Disabilities by Jeffrey Berk

Excerpt from: Special Needs Book Review (click for full article)

 

“NCAA Eligibility: Student-Athletes with Education-Impacting Disabilities”  is a resource guide for inspiring NCAA Division I or Division II Student-Athletes. Topics covered in this book include NCAA requirements, NCAA accommodations, disability services, student questioner, and what it takes to be a successful college student.

This book was written to inform the many inspiring Student-Athletes with Education-Impacting Disabilities of the process of requesting accommodations from the NCAA and their selected universities. Too many students with disabilities do not meet NCAA requirements to accept an athletic scholarship. If they do meet the requirements many of them are failing once they attend college. With this book I hope to inform students and parents of the challenges of meeting eligibility requirements and maintaining eligibility while in college.

The target audience for “NCAA Eligibility: Student-Athletes with Education-Impacting disabilities“:

a.) Students who have a learning disability, or other impairment that limits their ability to show their academic  knowledge.

b.) Special  Education teachers who work directly with these students.

c.) Guidance counselors who provide guidance to student-athletes and monitor that they are on track to earn NCAA Eligibility.

d.) Parents of students with disabilities who know their child’s dream is to play college sports at the Division I or II level.

e.) Coaches  who work directly with athletes and college recruiters to promote their student-athletes to the many universities.

Letter to the President after Newtown Tragedy

Excerpt from: National Council on Disability (click for full article)

 

On behalf of the National Council on Disability (NCD), an independent federal agency, and in response to your recent national call to action, I write to offer the commitment of our Presidentially-appointed Council Members and professional staff as a trusted advisor to the Administration and the newly announced interagency task force in the wake of the tragedy in Newtown, Connecticut. 

We agree with you wholeheartedly that something needs to change. As you identified in your recent public addresses in the wake of the tragedy, NCD further agrees that finding solutions to stemming such tragic violence requires thoughtful examination of multiple policies and systems. While a disability diagnosis of the perpetrator of the violence in Newtown remains unconfirmed, media coverage and national dialogue has increasingly focused on issues related to mental health, often portraying, intentionally or not, a correlation between certain mental or developmental disabilities and violence. On the contrary, research consistently documents that people with disabilities are much more likely to be victims of violence than the perpetrators of it.

It is important that the policy proposals considered and advanced by the task force do not, even inadvertently, reinforce stigma and confound existing and future efforts to encourage utilization of mental health services. We encourage you to charge the task force with considering strategies to combat such misinformation in the course of its work and within the Administration’s messaging on the Newtown tragedy more generally.  

Great resource for parents and teens

Meghan Welker recently wrote an article for Babysitting.net titled "10 Great Q&A Sites for Troubled Teens".  The link for the article is available here.  Any one with kids of their own or is/was a teen themself knows it isn’t always easy for teenagers to ask for help, no matter how much they need it. Even if they know where to turn to find the answers, asking the just the right questions that get them there can be a problem.  They put together a list of 10 great Q&A sites for troubled teens.  This list offers some terrific resources for teens who are searching for advice.

Interesting Study on Charter Schools and People with Disabilities in New York State

Excerpt from: Disability Law (click for full article)

 

The Center on Reinventing Public Education yesterday put out this report evaluating the enrollment of students with disabilities in charter schools in New York State.  It's well known that on average charter schools in New York enroll fewer students with disabilities than do district-run public schools.  This report attempts to disaggregate the data a bit to try to figure out what is going on.  The results are interesting, though more suggestive of areas for future research than conclusive of anything.  Here are the study's findings (the second and third findings are the key ones):

1.)The statewide difference in charter and district enrollment is too simplistic of a comparison

2.) Charter middle and high school enrollments are indistinguishable from district enrollments

3.) Charter elementary schools show underenrollment

4.) There is also variation among charter authorizers

Paying it Forward: Jason Faust’s Story

Excerpt from: Social Security Administration (click for more information)

 

Jason Faust read these words, posted by an anonymous writer with mental illness, and shuddered. He’s been there. Bipolar disorder took hold when he was a young teen. He missed school, drank, and spent time in several group homes. No medication helped to calm the turbulence that characterized his youth. At the time, he could not have imagined that his future would bring a dream job, greater independence and pride. Jason just needed to find the right support to get there.

At 18, he began receiving Supplemental Security Income (SSI), and considered where his life was headed without a diploma. Not liking the prospects, he struggled, and managed to earn a GED. By 2004, Jason found a good doctor with the right treatment plan, and his symptoms stabilized. Structure and productivity were part of this plan, and he found help at Nebraska’s Vocational Rehabilitation (VR) agency.

With help from VR, Jason put together a resume and tightened his interview skills. He focused on the job hunt, spending his days in the agency’s Job Search Center combing through leads. “You’ve got to buckle down and be serious about it”, he acknowledges. “It was amazing what they offered! They helped me navigate through the entire job hunt. I got the support I needed and I’m grateful for that.”

Jason was offered a job working as a Community Support Professional at Region Five Services, a local agency that helps adults with developmental disabilities integrate into the community. He would be able to put his life experience to work developing programs for independent living. The position seemed
to be a good fit. However, Jason had many concerns about how work would affect his Social Security
disability benefits. What if this job didn’t work out? Would he lose the Medicaid and SSI benefits he relied on? Most people who become employed with help from their state VR agency find that VR services end approximately 90 days after they start working. Jason worried about what would happen after his case with VR closed and he was on his own. Given the unpredictable nature of his condition, he knew he
would continue to need support to keep his job and earn a living.

The Best Sport You've Never Seen

Excerpt from: The Smart Set (click for full article)

 

This is the world of goalball, the most amazing sport you have probably never seen. And goalball is played at the Paralympics, the most extraordinary (and second largest) multi-sporting event in the world. In the United States you may have heard something about the Paralympics this summer while watching the Olympics. But in this year’s host city of London, Paralympics news was a bit bigger. In London Oscar Pistorius, the South African “blade runner,” is a household name, but so are British swimmer Ellie Simmonds, the players on the wheelchair rugby teams, the wheelchair basketball players, and the goalball players. In 2012, disability sports have become “real sports,” at least in the UK — as well as China and the Russian Federation, first and second place, respectively, in the Paralympics medal count.

Deciphering why Americans don’t know much about the Paralympics, and sports such as goalball, is tricky. We’re forced to consider that we relegate disability sports and, by extension their elite athletes, to something less than “real” sports and “real” athletes. If elite disability sports were just sideshows where fans applauded out of respect and admiration for the will of the players, that would be one thing. But in the UK the success of the Paralympics has launched an important and sometimes thorny debate on the relationship between sports and politics. Britain’s most decorated Paralympian, Tanni Grey-Thompson, is now a member of the House of Lords and an outspoken advocate for the rights of the disabled. And this year when George Osborne, the British Chancellor of the Exchequer and the face of welfare reform and cuts to disability services in the UK, showed up to hand out medals at the Paralympics he was booed by a crowd of 80,000 in the Olympic Park.

Man in Supposed Vegetative State Communicates

Excerpt from: ABC news (click for full article)

 

Scott Routley hasn't spoken or even followed family members with his eyes since his car accident 12 years ago. But he managed to indicate to doctors this spring that he was not in pain.

And he did it by imagining his playing tennis as researchers watched for certain areas of his brain scan to light up during an fMRI, something he and neuroscientist Adrian Owen worked out as a signal for "no" over a series of sessions. The breakthrough technique proved Routley isn't in a vegetative state, as doctors thought. He's aware of the world around him.

"Some people can look like they're vegetative but still have awareness inside their head. I think it's a very important finding," said Bryan Young, the neurologist at University Hospital in London, Ontario, who has treated Routley for the past decade.

For Disabled New Yorkers, Effects From Hurricane Sandy to Linger For Months

Excerpt from: DNAinfo.com (click for full article)

 

Winsome Williams knew she'd have to act fast when the floodwaters from Hurricane Sandy began pouring into the Shore Parkway apartment she shares with her adult daughter, who has cerebral palsy and relies on an electric wheelchair to get around.

"I saw the water rising faster and faster and said, 'How am I going to get her out?'" Williams recalled.

Soon, firefighters were carrying a tearful Schevon, 32, up to a relative's third-floor apartment in the walk-up building where she lives.

Mother and daughter survived — but Schevon's $5,000 electric wheelchair didn't.

Neither did the $2,000 hospital bed that allowed her to sleep slightly elevated and not gag. Meanwhile, the fate of the $7,000 device known as a DynaVox that allowed Schevon to communicate by pressing a touch-screen was unclear.

In the wake of Hurricane Sandy, disabled New Yorkers say they have even greater obstacles to overcome to recover from the storm. The loss of handicap-accessible apartments and important equipment has left some in difficult situations.

Winsome Williams knew she'd have to act fast when the floodwaters from Hurricane Sandy began pouring into the Shore Parkway apartment she shares with her adult daughter, who has cerebral palsy and relies on an electric wheelchair to get around.

"I saw the water rising faster and faster and said, 'How am I going to get her out?'" Williams recalled.

Soon, firefighters were carrying a tearful Schevon, 32, up to a relative's third-floor apartment in the walk-up building where she lives.

Mother and daughter survived — but Schevon's $5,000 electric wheelchair didn't.

Neither did the $2,000 hospital bed that allowed her to sleep slightly elevated and not gag. Meanwhile, the fate of the $7,000 device known as a DynaVox that allowed Schevon to communicate by pressing a touch-screen was unclear.

In the wake of Hurricane Sandy, disabled New Yorkers say they have even greater obstacles to overcome to recover from the storm. The loss of handicap-accessible apartments and important equipment has left some in difficult situations.

Read more: http://www.dnainfo.com/new-york/20121113/kensington/for-disabled-new-yorkers-effects-from-hurricane-sandy-linger-for-months#ixzz2CgHDKoEd

Winsome Williams knew she'd have to act fast when the floodwaters from Hurricane Sandy began pouring into the Shore Parkway apartment she shares with her adult daughter, who has cerebral palsy and relies on an electric wheelchair to get around.

"I saw the water rising faster and faster and said, 'How am I going to get her out?'" Williams recalled.

Soon, firefighters were carrying a tearful Schevon, 32, up to a relative's third-floor apartment in the walk-up building where she lives.

Mother and daughter survived — but Schevon's $5,000 electric wheelchair didn't.

Neither did the $2,000 hospital bed that allowed her to sleep slightly elevated and not gag. Meanwhile, the fate of the $7,000 device known as a DynaVox that allowed Schevon to communicate by pressing a touch-screen was unclear.

In the wake of Hurricane Sandy, disabled New Yorkers say they have even greater obstacles to overcome to recover from the storm. The loss of handicap-accessible apartments and important equipment has left some in difficult situations.

Read more: http://www.dnainfo.com/new-york/20121113/kensington/for-disabled-new-yorkers-effects-from-hurricane-sandy-linger-for-months#ixzz2CgHDKoEd

Winsome Williams knew she'd have to act fast when the floodwaters from Hurricane Sandy began pouring into the Shore Parkway apartment she shares with her adult daughter, who has cerebral palsy and relies on an electric wheelchair to get around.

"I saw the water rising faster and faster and said, 'How am I going to get her out?'" Williams recalled.

Soon, firefighters were carrying a tearful Schevon, 32, up to a relative's third-floor apartment in the walk-up building where she lives.

Mother and daughter survived — but Schevon's $5,000 electric wheelchair didn't.

Neither did the $2,000 hospital bed that allowed her to sleep slightly elevated and not gag. Meanwhile, the fate of the $7,000 device known as a DynaVox that allowed Schevon to communicate by pressing a touch-screen was unclear.

In the wake of Hurricane Sandy, disabled New Yorkers say they have even greater obstacles to overcome to recover from the storm. The loss of handicap-accessible apartments and important equipment has left some in difficult situations.

Read more: http://www.dnainfo.com/new-york/20121113/kensington/for-disabled-new-yorkers-effects-from-hurricane-sandy-linger-for-months#ixzz2CgHDKoEd