From Youtube.com:

At a town hall meeting in Raleigh, North Carolina, Senator Barack Obama was questioned by woman who identified herself as the mother of a child with Down syndrome who had leukemia and had undergone open heart surgery. She said her son’s name is Adam.

Q: The doctors in the hospital were commenting that I was lucky that he was getting any benefits at all, because he wasn’t really going to be anything in life. He was just going to be a dependent on everybody’s social security. My question, sir, is what are you going to do about changing the word retardation, disabled, genetically altered, for our children and for our future children, for everybody here in the United States, to make a difference in their lives, to include them, sir.

Obama: … In terms of terminology — I think the word retardation is a bad word. That’s old. We need to put that to bed …

…. I have said that as president, my goal will be to achieve full funding of special education. Because no child is disposable, every child is special, and we should make sure that we’ve got the resources in place without taking money from other children in order that they can learn and succeed and achieve their full potential. So God bless Adam. We love Adam, and thanks very much for the wonderful question.

From the Portland Oregonian:

Getting disability payments can be a fight to the death

The Social Security Disability Insurance program has become a national quagmire, forcing people to suffer needlessly during interminable waits for a check.

More than 762,000 Americans sit in an unprecedented backlog of disability claims. Delays have hit all-time highs — the result of shoestring budgets, bureaucratic incompetence and poorly executed reforms …

In Portland, where the local Social Security hearings office posts some of the nation’s longest delays, the average appeal drags on 669 days.

Meanwhile, people are left in ruins. Many die waiting.

From the Atlanta Journal-Constitution:

Atlanta’s disabled often wait years for aid

The two Atlanta Social Security hearing offices are known as “the backlog capital of the country.”

(more…)

From the Indianapolis Star:

Indiana residents wait more than two years on average for their Social Security disability claims to get processed — one of the worst records in the country. The average wait time across the country is 505 days, according to the Social Security Administration.

Without a job or any source of income while they wait, some applicants lose their homes and cars. Some must live with relatives or friends or in shelters. Some go on welfare. Some die before a final decision.

… Government officials blame the national backlog of disability claims on years of agency underfunding and understaffing combined with a growing number of applications from baby boomers.

From the New York Times:

When Chris Pendergast was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease) in 1993, he wasn’t expected to live long. Now, almost fifteen years later, he’s using his long-term survivorship to draw attention to the need for more ALS research and immediate access to Medicare and Social Security benefits. His foundation, Ride for Life, has raised $3 million for research and patient services.

… Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in — one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

He’d like to see the disability community coordinate its efforts. “I don’t think different disease communities should be scrapping for pieces of the pie, ” he says. “I would like to have a bigger pie.”

From the Kansas City Star:

An estimated one in 26 American families is raising children with disabilities, yet more than 80 percent of parents of these children have not established a special-needs trust.

A special-needs trust provides financial protection to those with disabilities, and also preserves their eligibility for Medicaid, Social Security income and other need-based benefit programs.

Experts say such a trust could preserve medical benefits worth hundreds of thousands of dollars over the life of the individual. The trusts help people get services they are entitled to receive through government programs.

The story contains tips for doing financial planning for children with disabilities, as well as resources for more information.

From the Dallas Morning News:

The aging of the nation’s 78 million baby boomers has brought a flood of Social Security claims for illnesses and disabilities, creating an unprecedented backlog. As a result, many are finding they have to wait years for their funds.

Unable to work, many are already teetering on the edge of financial ruin. The delays in processing their claims exhaust their savings, drive them deep into debt and sometimes deny them the health care they need.

“I thought at times that Social Security wanted me to give up, but I couldn’t,” said Judith Byrd. “I had paid my taxes, and my disability entitled me to benefits.”

… There are also allegations that private disability insurance companies are unnecessarily clogging the public system by requiring many of their applicants to file separate, and often questionable, claims with Social Security.

… “Politicians haven’t paid attention to the disability claims system because most people think they’ll never use it,” said Linda Fullerton, president of the Social Security Disability Coalition. “But then something happens, and that check becomes a godsend. This isn’t welfare; it’s insurance that workers have paid for.”

From CBS News: Backlog in disability benefits system leaves thousands of Americans vulnerable and stranded

According to a two-month CBS investigation, the Social Security safety net may not be there when you need it most. Two out of every three people who apply for federal Social Security disability benefits are rejected by a government agency that critics say is out of date, underfunded, and incapable of serving the exploding number of disabled Americans. Waiting times for a hearing in some cities are more than three years.

Over the last two years, at least 16,000 people fighting for disability benefits died while awaiting a decision. The backlog of cases now stands at 750,000 - up 150 percent since 2000. People wait an average of 520 days for a hearing on their claims.

The two-part series includes a list of hints on navigating the system: Information about filing for social security benefits

Related story: Disability benefits system harbors culture of denying benefits even to those most unfit to work

Earlier post here.