‘I feel like I’ve lied to a lot of people’

From Newsweek (with video):

Alan T. Brown, who is quadriplegic as the result of an injury, has spent the last two decades trying to find a cure for people who are paralyzed. Now he’s changed his emphasis, working toward improving medical care, insurance coverage and quality of life for people with spinal cord injuries.

“All those people that I’ve spoken to over the years, in the hospitals and the families, and I said ‘one day there’s going to be a cure,’” he says. “And I hope there is … But I can’t guarantee that’s going to happen and I’m not going to sit around and wait any more. I have two children that I have to make sure are cared for.”

Brown is collaborating with the Christopher and Dana Reeve Foundation, which changed its slogan in the summer of 2008 “Go Forward” to “Today’s Care. Tomorrow’s Cure.”

“When we first started, our entire focus was to find a cure, to get people walking again,” says Reeve Foundation president and CEO Peter Wilderhotter. “As we came to realize that since no injury is completely alike and given the complexity of the spinal cord-there will be no ‘magic bullet.’”

A small group of parents protested this week that the Obama health care legislation would lead to the rationing of services for their children with disabilities, a charge that was refuted by some disability advocacy organizations.

Politico’s Ben Smith writes that such accusations are “simply not true,” and said the Obama proposal will actually benefit people with disabilities. Smith said the proposal will improve health care accessibility, prohibit insurance companies from setting limits on coverage, and prohibit the denial of coverage based on preexisting conditions. An excerpt:

The hard truth is, rationing exists right now in our health care system. Under the status quo, health insurance companies decide what care you can and can’t have, based not on which treatments you need, but what type of insurance you have.

But the health insurance reform that the President has proposed will mean the opposite — expanded coverage and lower costs. It will offer more choices for care for those with disabilities, not fewer. It will bring more stability and security to families of those with disabilities who currently have insurance, and it will expand coverage for those who don’t.

From the New York Times:

People with speech disabilities question why Medicare and private insurers are declining to cover mainstream devices like iPhones and netbook PCs that can help them communicate.

Insurers say coverage is restricted to medical devices, not gadgets that can also be used for nonmedical purposes like playing video games or browsing the Internet. Consequently, they are limiting coverage  to dedicated, proprietary devices that cost 10 to 20 times more and can do far less.

Kara Lynn uses a $300 Apple iPhone 3G running $150 text-to-speech software, which serves her better than the $8,000 Medicare-approved computer that she used previously.

For Ms. Lynn, the iPhone, with the special software, is cheaper, more effective and essential. “Technology has become as important to me as air, food, water,” she wrote.

From the Boston Globe:

The Massachusetts legislature is considering more than 70 bills that could mandate medical insurance coverage for people with disabilities and potentially raise healthcare costs.

Among the proposals are bills that would mandate coverage for hearing aids, treatments to fix cleft palates, and wigs for cancer patients.

The proposals to require coverage of everything from aquatherapy to vitamins for certain patients raise broader questions about where legislators should draw the line — and whether they should be the ones making delicate decisions that require balancing cost with patient needs.

Some ethicists and economists suggest that such complex and high-stakes choices should instead be made by panels of healthcare specialists who are appointed by lawmakers, as is done in many other developed countries.

From Business Insurance:

Experts say that sixteen states and Washington, D.C., have mandates for insurance coverage for autism or other developmental disorders, and momentum is growing. Many self-insured employers are also getting on board, even though they are not subject to the mandates.

The driving force behind the changes? Highly active parents.

The Virginia-based Council for Affordable Health Insurance estimates that the autism mandates add one percent to the cost of insurance, and could rise to three percent.

Bills have been introduced in the U.S. House and Senate, but no action is likely until broader health care reform decisions have been made.

From AP/Philadelphia Inquirer:

New Jersey governor Jon Corzine is expected to sign a measure, passed by the state legislature, that would expand health insurance coverage for autism and other developmental disabilities.

The bill would require insurers to cover the cost of autism treatments deemed medically necessary, including behavioral intervention and speech, physical and occupational therapy. The measure would cap coverage at $36,000 annually for patients aged 21 and younger.

If Corzine signs the measure as expected, New Jersey will become the 14th state to mandate such insurance coverage.

From the Wall Street Journal:

Sen. Edward Kennedy has included a measure for a new disability insurance program for all American workers as part of the broader healthcare reform legislation he is preparing to introduce.

Early reports said the measure would include the following provisions:

• All workers, unless they opt out, would be charged a premium to give them a basic level of protection in case they become disabled.
• Recipients would be allowed to collect benefits while remaining in their homes and continuing to work.

“Like all Americans, millions of senior citizens and persons with disabilities want to lead full and independent lives,” Mr. Kennedy said in a statement. “Our health reform legislation will make that possible. By providing access to long-term care and services, our legislation will enable our most vulnerable citizens to remain in their own homes and contribute to their communities.”