Taking Charge: Tips for Youth with Special Health Care Needs

By Admin from The National Collaborative on Workforce and Disability for Youth (NCWD/Youth)

When parents have a child or young adult with a disability or special health care need, they take on additional roles beyond typical parents. Parents become caregivers, advocates, and decision makers in all the systems their child is involved in such as education, social service, and health. But what happens as our children become young adults? How can we prepare them to take on some of those roles to better advocate for themselves if they are able?

Within the school system a student on an individual education plan (IEP) is involved in required transition planning with their team. Health advocates at PACER Center’s Health Information Center encourage families to include skills related to health care advocacy and transitioning from the pediatric system to the adult health care system into their IEP, 504 or Individual Health Plan.

Within the health care system it is also important to help young adults understand their role as advocates so that they can best prepare for medical appointments and take ownership of their health for better health outcomes.

Read more HERE.

In First, UN Holds High-Level Disability Summit

Advocates and dignitaries from around the world converged at the United Nations on Monday for the international body’s first-ever high-level meeting on disabilities.

With more than 1 billion people with disabilities globally, those behind the historic event at U.N. headquarters in New York said the gathering was convened to encourage inclusion of those with disabilities in all aspects of life.

“Far too many people with disabilities live in poverty. Too many suffer from social exclusion. Too many are denied access to education, employment, health care, and social and legal support systems,” said U.N. Secretary-General Ban Ki-moon who implored leaders to “break barriers and open doors.”

More than 800 representatives from disability organizations attended the meeting, officials said, which included remarks from U.S. Secretary of State John Kerry and musician Stevie Wonder, among others.

Read more of Shaun Heasley's Disability Scoop article HERE.

Disney Confirms Change To Special Needs Access

Starting next month, Disney theme parks will change the policy that lets visitors with disabilities skip the long lines for attractions.

Instead of giving visitors with disabilities and their family members a card that allows them to go directly onto rides, the guests will be given a scheduled time period to return to get faster access to the attraction.

In essence, guests with disabilities and their families will get to use a new version of the Fastpass tickets offered for certain rides to all guests.

The new policy will begin Oct. 9.

“Given the increasing volume of requests we receive for special access to our attractions, we are changing our process so that it creates a more consistent experience for all our guests while providing accommodations for guests with disabilities,” said Disneyland spokeswoman Suzi Brown.

Read more of Hugo Martin's Disability Scoop article HERE.

IEPs: Questions + Answers

From LD OnLine

Frequent questions:

Question 1: What should I do if my child has an IEP but is not making any progress?

Question 2: I am considering moving to a different state. Can my child, with an active IEP, transfer into another program? Who do I need contact to make this transition?

Question 3: Can schools change classes of a child with an IEP without parental permission? What are a parent's legal rights in this?

Question 4: I am concerned my child's school is not really following her IEP. What can I do about this?

Question 5: How do I know when my child no longer needs an IEP?

Question 6: My child has a disability and I would like her to begin physical therapy. Is it possible to have the school district pay for this?

Read more HERE.

More With Disabilities Find Work

By Shaun Heasley from disabilityscoop

As unemployment in the general population dropped to its lowest level in years, people with disabilities saw their own fortunes improve slightly.

The U.S. Department of Labor said Friday that Americans with disabilities faced a jobless rate of 13.5 percent in September, down from 13.9 percent the month prior.

The news comes as the economy as a whole added 114,000 jobs and the unemployment rate for the general population fell below 8 percent for the first time since January 2009, with some 7.8 percent of Americans without work in September.

Read more HERE.

Paralympics 2012: Channel 4 [Britain] trains reporters with disabilities

By Maggie Brown from the Guardian|The Observer

Channel 4 has invested £600,000 in training a fresh band of TV presenters and reporters with disabilities and Paralympic sporting experience to work alongside experienced anchors such as Clare Balding and Jonathan Edwards, when live coverage of the Games begins next week.

It is also unveiling a system of screen graphics, invented by Giles Long, one of the UK's most successful Paralympic swimmers, based on human figures to depict conditions such as dwarfism, amputations and brain damage. These will help viewers to understand, at a glance, why athletes who often appear so different compete against one other.

Called the Lexi Decoder system, it works on a traffic light principle. Diagrammatic figures showing missing limbs are coloured green, yellow, orange or red, depending on the level of disability – green for no impairment, red for severe.

Channel 4, which paid around £5m for the television rights to the London Paralympics, said research showed that many people were confused by the system of classification. It hopes that improved understanding will boost audiences for the lavish nine-day coverage, running from a breakfast show to late at night.

Giles Long, 36, from Wood Green, north London, who won 20 major medals as a butterfly swimmer, including a gold in Atlanta in 1996, invented the Lexi system and took it to Channel 4 – using a ballpoint pen and notepad to explain his idea – after it won the rights in January 2010 over the BBC.

Long said: "There is a gap in understanding. I realised in Beijing people thought the result of one swimming race was unfair because the Chinese athlete had no legs. The way to think about classifications is the weight bands in, say, boxing. You never see a flyweight and heavyweight boxing each other. Grouped together, Paralympic athletes face a common challenge."

Read more HERE.

DREDF documents the health disparities exhibited by people with disabilities from minority populations

In 2011, DREDF received a request from the Asian and Pacific Islander American Health Forum (APIAHF), and the office of Congresswoman Barbara Lee to help document disparities in health care that most minorities with disabilities experience.

Data was needed to support the federal Health Equity and Accountability Act (HEAA), HR 2954, introduced on September 15, 2011. HEAA was introduced by members of the Congressional Tri-Caucus (comprised of the Congressional Black Caucus, the Congressional Asian Pacific American Caucus, and the Congressional Hispanic Caucus), to reduce racial and ethnic health disparities.

DREDF's brief, Health and Health Care Disparities Among People with Disabilities, correlates race/ethnicity and disability with specific health issues and describes environmental barriers to care. As its author, DREDF staff attorney Silvia Yee, states, "Aside from the public health issues that most racial/ethnic minorities face, minorities with disabilities experience additional disparities in health, prejudice, discrimination, economic barriers, and difficulties accessing care as a result of their disability—in effect, they face a 'double burden.'"

Read more at the DREDF website HERE.

DREDF Jobs -Position: Director of Development

See more information HERE.

Treated like equals on reality TV

By Tatiana Siegel for the Variety newsroom

Contestants with disabilities triumph across spectrum of shows

Since the birth of MTV's trailblazing series "The Real World," reality TV has adhered to one simple formula: Good casting + cameras = entertainment.

But how "real" is the average reality participant? For years, concerned groups have called for more visibility for people with disabilities in entertainment, specifically reality TV. It appears that those suggestions are finally being acknowledged.

Read complete article HERE.

Taking the wheel: Driving with Disabilities

If you have special needs, a driver rehabilitation program may be a necessary intervention when learning to drive a vehicle. Drivers are often referred to a driver rehabilitation program by physicians, eye doctors, occupational therapists, driving schools, parents, high schools and state-sponsored vocational programs. Referrals are usually made due to a significant break in the driving routine; a need of further evaluation due to injury or illness; or a need for additional training before acquiring a license.

Read more of Holly Olmsted-Hickey, One Place for Special Needs , article HERE.

EEOC Approves ADAAA Draft Final Regs

The Equal Employment Opportunity Commission (EEOC) privately approved its draft final regulations under the ADA Amendments Act (ADAAA). The regulations are being reviewed by the Office of Management and Budget (OMB) and other federal agencies.

The ADAAA took effect January 1, 2009. The law was intended to restore the ADA’s definition of disability, which had been narrowed through a series of U.S. Supreme Court decisions.

The ADAAA required the EEOC to develop and issue regulations within one year of enactment. The agency published their proposed rules September 23, 2009 in the Federal Register and was followed by a 60 day comment period.

The proposed regulations included several significant changes to the definition of the term “disability” under the ADAAA.

Read more HERE.

Children with disabilities not accurately portrayed in top children's books

By Courtney D. Smith from PHYSORG.com

Despite an increasingly positive portrayal of disabilities in Newbery Award-winning books, they are not representative of the nearly 7 million children with disabilities attending U.S. public schools, say Brigham Young University special education researchers.

Read complete article HERE.

IPad Opens World to a Disabled Boy

OWEN CAIN depends on a respirator and struggles to make even the slightest movements — he has had a debilitating motor-neuron disease since infancy.

Owen, 7, does not have the strength to maneuver a computer mouse, but when a nurse propped her boyfriend’s iPad within reach in June, he did something his mother had never seen before.

See Emily B. Hagar's New York Times article HERE

Museum about the Histyory of People with Disabilities

The only free-standing museum in the country about the history of people with disabilities opened in Buffalo, NY

http://www.buffalonews.com/city/article221383.ece