Wife of key Obama aide shares family’s journey with epilepsy

By Melissa Fay Greene in Parade magazine:

When 27-year-old Lauren Axelrod was diagnosed with epilepsy as an infant, her parents Susan and David were given scant information about the condition that was triggering dozens of brain-damaging seizures a day. They didn’t know the seizures would resist all efforts to control them, that available drugs caused devastating side effects, and that there was little ongoing research to help the 50 million people worldwide who share Lauren’s diagnosis.

In 1998, Susan Axelrod joined with other mothers to form the nonprofit organization Citizens United for Research in Epilepsy (CURE). Over the past decade, the group has raised $9 million for research and has changed the scientific dialogue about epilepsy.

David Axelrod was the chief strategist of the Obama campaign, and now serves as senior White House adviser.

“Complete freedom from seizures — without side effects — is what we want,” Susan says. “It’s too late for us, so we committed ourselves to the hope that we can protect future generations from having their lives defined and devastated by this disorder.”

Related stories from Parade about “heroic parents”:

• If the schools won’t help us, we have to help ourselves — Parents start a school for students with neurobiological and socialization disorders.
• Fighting a rare illness together — Parents start a foundation for research into Barth syndrome.
• Saving tiny hearts is what we have to do — Parents organize to fund research into congenital heart defects.

(Photo from Parade magazine)

Securing your disabled child’s future – AARP Bulletin Today

Family wonders what will happen to their adult son with Down syndrome – AARP Bulletin Today (video)

Passage likely for Nevada autism bill — Las Vegas Sun

New Mexico senate approves autism insurance coverage — AP/MSNBC

Virginia senate rejects autism insurance bill — Richmond Times-Dispatch

Cellphone amplifies sound for hearing impaired, has an emergency button — Wall Street Journal

‘Little people, Big World’ to start fourth season - Vancouver Sun

Disability activists urge quick closing of Chicago-area institution – Chicago Tribune

Panel: Hartford’s special ed program is ‘dysfunctional’ — Hartford Courant

Cheerleaders with disabilities raise funds for national competition — Detroit News

From U.S. News & World Reports:

More than 50 million family members are providing more than $300 billion a year in uncompensated care to family members, says U.S. News contributing editor Philip Moeller. Experts say they’re also seeing more cases in which family members are being paid to provide services, most often to elderly parents.

Moeller offers some tips for family members on how to structure caregiver agreements to preserve family relationships and make sure all parties are well represented.

Among his suggestions:

• It’s a job; treat it like one;
• Put it in writing; and
• Talk it over with family members

From BusinessWeek:

Over the past few years, American businesses have started offering support to workers who care for family members with disabilities. It’s a strategy that pays business dividends: Employers see less absenteeism and lost productivity when workers don’t have to take time off to oversee care for their loved ones.

In what have become the latest benefit programs, companies including PepsiCo, KPMG, JPMorgan Chase, and Northrop Grumman are offering services that range from parent networks to Web seminars to meetings with financial planners and educational consultants. In addition, a growing crop of advisers is emerging to guide families through the financial, medical, and educational labyrinth.

“There is no national network to tap to get information, so private industry is stepping in to fill the gap,” says Charlie Hammerman, president of the Albertson (N.Y.)-based Disability Opportunity Fund, an investment and financial-services firm focused on special needs.

By Maggie Jackson in the Boston Globe (second in a series):

As the number of children and elderly people with special healthcare needs continues to rise, employers like Prudential Financial Inc. are providing more assistance to workers who are balancing jobs and family responsibilities.

Prudential has had an “affinity” group since 1998 for employees with disabilities and those caring for people with special needs. The group has 100 members. But because the company is expanding further into the special needs consumer marketplace and more employees themselves are affected, it has significantly bolstered supports for employees in this area in recent years.

… “Special needs situations and adult care issues — these are issues that our employees are increasingly dealing with,” says Maureen Corcoran, vice president of diversity. “If we closed our eyes to that and didn’t provide assistance to employees, we’d be hurting our employees and hurting ourselves as well,” she said.

Lost talent is one risk for inflexible companies. In nearly a quarter of families caring for children with special needs, one or both parents wind up reducing their work hours or quitting their jobs, according to government surveys.

Elevate disability policy within the White House Domestic Policy Council

From Rud and Ann Turnbull, co-founders and co-directors
Beach Center on Disability
The University of Kansas

Background

The audacity of hope lies in the heart of the disability community.

The insistence on rights is still part of its daily agenda.

As individuals with disabilities and their families perform their civic responsibilities, they prove that rights create opportunities for effective citizenship.

The integration of disability policy into other policies can threaten individuals and families affected by disabilities; there are no assurances that policy reforms will always be disability-sensitive and provide for reasonable accommodations or other means for equal treatment.

But the integration of disability policy also creates opportunities because policy-integration advances integration and full participation of people with disabilities.

Individuals with disabilities and their families need a change they can believe in – a change that only President Obama and his leadership team can offer.

They need the opportunity to participate as equals in domestic policy debates.

So, we propose elevating disability policy.

Proposal

The President should create a Disability Policy Section within the White House Domestic Policy Council.

The Disability Policy Section should have the same status, opportunities, responsibilities, and staffing as policy sections related to all other major areas of domestic policy.

(more…)

From BusinessWeek:

Up until now, assistive technologies for people with disabilities have been focused chiefly on the workplace. The recently passed ADA Amendments Act clarifies that Americans with disabilities are also entitled to support in major life activities outside of work.

The changes are prompting the creation of devices that can help people enjoy travel, leisure and just plain old fun. It’s estimated that there is a $200 billion market of consumers eager to spend on such products.

Among the new entries: A GPS Ranger with audio and video commentary is available at some national parks for people with hearing, sight, and mobility impairments at a cost of about $15 to rent for the day, and an Apple iPod nano that has speech capability.

Larger technology providers may already have an edge – and an audience – for bringing new assistive technologies to disabled consumers. Yet the field is wide open for companies seeking a lucrative new niche in a growing market that would undoubtedly welcome more fun and games.