CNN: Disabled baby denied heart transplant

The mood in the room was somber as five doctors, a nurse, and a social worker pulled their chairs around the table and turned to address Autumn Chenkus and Charlie Higgs.

The couple’s 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him.

“Take your baby home and love him for the time he has left,” Chenkus and Higgs say the doctors told them.

They asked how long their son had left to live. About six months, they remember the doctors telling them.

Higgs wept, but Chenkus felt like she’d cried enough in the past five months for a lifetime. She was like a rock now, and after the meeting with the doctors she went directly back to her son’s room without shedding a tear. In a chair next to his hospital crib, she opened her laptop and hoped the Internet might have clues for how to keep her baby alive.

Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick’s parents, but at the meeting they said he didn’t qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.

As Chenkus did her research on Maverick’s genetic condition, she couldn’t believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study’s author, and he confirmed she was right.

Now they’ll do the transplant for sure, she told Maverick’s father excitedly. Our son doesn’t have to go home and die.

But it didn’t matter. The doctors still refused to give Maverick a new heart.

At first, Maverick’s mother was confused, but then she said it dawned on her: This supposed propensity for infections and tumors was a smokescreen.

She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick’s genetic condition grow up to have disabilities. They don’t want to give Maverick a heart because he won’t grow up to be “normal,” she thought.

At another meeting, she looked one of the doctors in the eye.

“You’re discriminating,” she said.

“That’s ridiculous,” she remembers the doctor responding.

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NYT Editorial: How to Do Right by the Disabled

 About a year ago the Senate fell five votes short of ratifying an international treaty that would improve protections for the disabled. It was an ignoble spectacle as the opponents rebuffed Bob Dole, a former colleague and disabled veteran, who came to the Senate floor to lobby for it. The Senate now has a chance to redeem itself.

Senator Robert Menendez, a New Jersey Democrat and chairman of the Senate Foreign Relations Committee, has revived the treaty, the United Nations Convention on the Rights of Persons With Disabilities. He has held two hearings and plans a committee vote perhaps next month. Unanimous approval leading to quick Senate ratification is warranted; 138 other countries have ratified the treaty.

The United States is the leader in promoting the rights of people with disabilities because of the Americans With Disabilities Act of 1990. But projecting that globally has been hampered by the failure to ratify the U.N. convention in the four years since President Obama signed it. As Secretary of State John Kerry said last week, when the treaty countries gather to discuss accessibility and employment standards for people with disabilities, “we’ve been excluded because we’re not a party to the treaty.”

Practically, that means America is weakened in its ability to press for fire alarms with flashing lights so people who are deaf will know when there is an emergency or for sidewalks with curb cuts for people in wheelchairs. Such advocacy does not just benefit foreigners. Disabled Americans would find it easier to travel, study and live abroad if the United States could win improved conditions.

Previously, a right-wing fringe defeated the treaty with the absurd claims that it “crushes” American sovereignty and leads to bureaucrats’ taking disabled children from their parents. It was always hard to take such nonsense seriously. Now, with a growing number of veterans groups and corporations backing the treaty, perhaps the Senate naysayers can be persuaded to do what’s right.

 http://www.nytimes.com/2013/11/25/opinion/how-to-do-right-by-the-disabled.html?ref=opinion&_r=0

Los Angeles Times: Murder or mercy for woman with disability?

Decorated by Gen. Dwight D. Eisenhower for bravery at the Battle of the Bulge, William Knox Roberts was a fighter. A surgery for liver cancer in 1999 had left him in the clear, but in February, he developed lung congestion that wouldn’t clear.

X-rays revealed chronic pulmonary disease — and a mass on his liver. In July, Kaiser placed him under hospice care.

He confided in his 59-year-old son, Tom, that breathing was like being waterboarded, and he grew more and more apprehensive about the fate of Tom’s sister, Marian, who had needed round-the-clock care since a brain injury in 1987.

“He told me: ‘You can’t do it by yourself. You can’t do it alone,'” recalled Tom, who had slept on an air mattress at the foot of his sister’s bed for more than a quarter of a century.

The elder Roberts, now 88, had grown hard of hearing and become a bit paranoid. He slept with a gun under his pillow, Tom said, and would on some nights tromp midway down the stairs leading to the siblings’ room and sit there for hours, armed, to “protect his daughter” from intruders.

On Aug. 17, however, he seemed in high spirits. He suggested a big dinner of prime rib and potatoes. Marian “loved it,” Tom said. The following night, brother and sister turned in at 11 p.m.

At 4:30 a.m., Tom leapt up to the sound of back-to-back pops and stepped on something he initially thought to be a tooth. As he raised it to his face in the darkness, he saw a shell casing coated in ceiling plaster. Continue reading Los Angeles Times: Murder or mercy for woman with disability?

Editorial: Equal Coverage for the Mentally Ill

from the board of the New York Times:
A struggle over decades to force insurers to cover mental health and addiction services on the same basis as medical and surgical costs is headed for success under new rules issued on Friday by the Obama administration. The rules will cover most Americans with health insurance, including those in many employer-sponsored plans, in other group plans, in some but not all Medicaid plans, and in policies bought on the individual markets.

The rules strengthen a 2008 law that required parity in coverage — but only when an insurer actually offered mental health and addiction benefits. It did not require such benefits. The new health care law, the Affordable Care Act, does require coverage for mental health and substance abuse as 1 of 10 essential benefits in any new health plans. Combined, the two complete the job of offering both parity and coverage. Continue reading Editorial: Equal Coverage for the Mentally Ill

Calgary Society for Persons with Disabilities, 2012 report

537304_15_0_LTE1MzY4NDE3MjE2ODMxMjU1NjMThe Calgary Society for Persons with Disabilities (CSPD) is a non-profit organization that provides residential care to adults with developmental disabilities,”said designer Hans Thiessen. “What makes CSPD truly unique is its ability to see past disabilities, in order to help clients reach their full potential. To illustrate the concept of ‘seeing past disability,’ we created a report printed entirely on french-folded translucent vellum. This allows the reader to see through each page, creating juxtaposition between full bleed black and white portraits and stark sans-serif typography.

http://www.commarts.com/exhibit/calgary-society-persons-disabilities

Governor O’Malley Forms Commission for Effective Community Inclusion of Individuals with Intellectual and Development Disabilities

ANNAPOLIS, MD  – Governor Martin O’Malley today issued an Executive Order to improve training to help law enforcement personnel, paramedics, and other first responders better respond to situations involving individuals with intellectual and developmental disabilities (“IDD”). The Executive Order creates the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities (the “Commission”). Governor O’Malley also announced that he would name Dr. Timothy P. Shriver, Chairman & CEO of Special Olympics, as Chairman of the Commission.

Governor O’Malley created the Commission in part as a response to the circumstances surrounding the death of Frederick County resident Ethan Saylor, who happened to have Down syndrome. Dr. Shriver, a Maryland resident, has been designated the Chairman of this commission based on his deep experience in working in communities to build understanding, acceptance and inclusion of people with IDD. Continue reading Governor O’Malley Forms Commission for Effective Community Inclusion of Individuals with Intellectual and Development Disabilities