From the [UK] Guardian, a special issue on the culture of deafness.

Among the featured articles:

I wouldn’t have minded if my baby had been born deaf, but the embryology bill suggests I should –  Rebecca Atkinson says the embryology bill currently before the House of Commons curtails the rights of deaf parents. The bill would prohibit the implantation of an embryo known to have deafness when other hearing ones are present. An excerpt:

… This is not about tweaking the genes of a hearing embryo, a technical impossibility. It’s about laying two potential children in embryonic form side by side and affording more right to life to the hearing one by making it illegal to issue preference to the deaf one … this is not about creating a hearing child and then making it deaf. It’s about not being able to give life and therefore equality to an embryo that is already deaf.

…as a deaf person I can’t help but feel slightly affronted that the bill affords more right to life to you the hearing reader, than me the deaf writer, were we to be lying side by side in embryonic form in a petri dish. Indeed, it makes it illegal to choose me over you.

(more…)

From the Wall Street Journal:

A growing number of financial service companies are springing up to help parents provide for the future care of their children with disabilities. They help navigate the maze of federal and state programs, and assist parents in setting up trusts, coordinating estate plans, and educating future caregivers.

These tasks have become increasingly vital as people with disabilities are living longer than ever before, frequently outliving the parents who support them.

Miami lawyer Barry Nelson (far left) set up a special-needs trust for his fourteen-year-old son Jesse, who has autism. The trust will be funded by life insurance when Nelson dies, and can be used to pay for expenses beyond what Medicaid or SSI would pay for.

Nelson says a special-needs trust “gives me — and it gives every parent — peace of mind.”

A sidebar provides a list of financial planning resources.

(Wall Street Journal photo)

… Obama has substantive plans for all people with disabilities

Writing in huffingtonpost.com, Paul K. Longmore says presidential campaign coverage has included a lot of talk about “special needs” children, thanks to Sarah Palin, but little about the issues that concern the 54 million Americans with disabilities of all ages.

Longmore compares the stances of the McCain-Palin ticket and the Obama-Biden ticket on healthcare, health insurance and social services for people with disabilities. An excerpt:

Even though 90 percent of the 54 million Americans with disabilities are adults, Palin, John McCain, and the news media have talked almost exclusively about children. And that talk has been mostly about “compassion” not “issues.” The McCain-Palin campaign website has a single page on “Americans with Disabilities for McCain,” but it says nothing about policy positions. Other pages mention autism and disabled veterans but no other issues.

In contrast, Barack Obama and Joe Biden have said little on the campaign trail about disability issues but their campaign website provides detailed policy proposals in a comprehensive “Plan to Empower Americans with Disabilities.”

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University. His “Open letter to the disability rights constituency” appeared exclusively on this site last month.

U.S. News & World Report lays out a list of tips for financial planning on behalf of children with disabilities. Many of these kids will require financial support throughout their lives, writes Kimberly Palmer. Government programs can cover some basic medical care, but people will lose eligibility if they have more than $2,000 in assets. Parents need to use wills and trusts to ensure that kids will have the support they need when they grow up.

Among her suggestions:

• Establish legal guardianship;
• Protect your child’s eligibility for public benefits; and
• Think about insurance policies and special-needs trusts.

Writing in the National Review, Sen. Sam Brownback (R-Kansas) says a bill he successfully co-sponsored with Sen. Ted Kennedy (D-Mass.) will help deflect a “eugenics mentality” that threatens to eliminate a whole class of people — children with Down syndrome –  before they can be born. An excerpt:

The Prenatally and Postnatally Diagnosed Conditions Awareness Act got final approval from Congress last week. The measure will provide support and balanced information to families upon diagnosis, and will establish a national registry of families wishing to adopt children with disabilities.

The irony is that if children with Down Syndrome make it out of the womb, their prospects in life are brighter than ever. Children and adults with Down Syndrome are often the centerpieces of their families. They have amazing gifts and are full of affection. Many adults with Down Syndrome have jobs, live independently, and make valuable contributions to the communities in which they live. (more…)

From the Omaha World-Herald:

This month, Nebraska families dropped off 15 children, some as old as 17, at hospitals and a police station in search of help taking care of them. Some of the children have mental and behavioral problems.

Unlike laws in other states, Nebraska’s new safe haven law does not set an age limit for families that wish to drop off children to be cared for by the state. Other states set a maximum age of one year old.

Families and advocates say the cases expose the difficulties and lack of resources that families face. Officials at the Nebraska Department of Health and Human Services say the cases raise no concerns about problems within the system.

“The parents simply decided they did not want to continue on this journey with their kids,” said Todd Landry, children and family services director.

See also:

Father leaves 9 children at Nebraska hospital — Chicago Tribune

Children left at Nebraska hospitals — Chicago Tribune

Nebraska ’safe haven’ law for kids has unintended results - USA Today

From the Pittsburgh Post-Gazette:

Henry deYoung, 23, was named Carnegie Mellon’s top undergraduate computer science student last spring, and is now enrolled in the school’s Ph.D. program. His younger brother Andrew, 21, also a student at Carnegie Mellon, is just as brilliant. They both have spinal muscular atrophy, a muscle-weakening disorder.

Technically, they’ve already outlived their expected lifespan, but they don’t dwell on it. They’re not expecting a cure. An excerpt:

“I think one’s circumstances affect one’s life, and I think it’s helpful if I and others remember that, and know that really, circumstances are just circumstances, not necessarily bad,” Andrew DeYoung wrote in an e-mail.

“In other words, we all need to remember that every person has value, not because of what we do, but just because we are. And it doesn’t matter whether one is president of the United States or is one of the dozens of sick children waiting right now at Children’s Hospital for a transplant — I think that if we all remembered that we all have value, life would be a bit more pleasant, and less goal-oriented.”