Babe-created legal advocacy program helps people with chronic illness

by Jenni Prokopy, the Editrix

Jennifer Jaff is a total Babe: an attorney with Crohn's disease, she created Advocacy for Patients with Chronic Illness, Inc., a non-profit resource for Chronic folks who need legal assistance.

Representing patients across the country

Jaff and a team of volunteers provide free legal advocacy services to clients across the country, offering help with issues of health and disability insurance, social security disability, employment discrimination, family and medical leave, and education equity (the way schools treat kids with chronic diseases).

She focuses on encouraging clients to speak for themselves whenever possible: "Teaching patients to advocate for themselves is very empowering," Jaff explains. "As much as I possibly can, I coach the patient to do the work themselves. For example, trying to get an accommodation for an employee - I try to coach as much as I can because once a lawyer becomes involved, it becomes much more confrontational." In fact, Jaff does no litigation; when she hits a real dead end, she helps the client find litigation counsel in their own state.

"This is what I'm supposed to be doing with my life"

Jaff founded the organization after a personal health crisis. Following a major surgery for an intestinal blockage related to Crohn's disease, she experienced 11 months of fecal incontinence and almost died. A partner in a law firm, she worked from home for the next three years, under the disappoving glare of her employer. "I was still carrying my weight, but the partners didn't like it," she says.

In searching for her own answers, she came across the forums at IBDsucks.com and started answering questions for other patients. "People were asking the same questions over and over again, so I wrote a handbook," Jaff says. In need of funds to publish Know Your Rights: A Handbook for Patients with Chronic Illness, Jaff started fundraising efforts and created her non-profit organization.

"The demand (for these services) is so great," she says. That need drove her decision to take on the demands of running a non-profit. "I feel like I've finally figured out what I was supposed to be doing with my life," says Jaff. Before her health crisis, she had worked with Gloria Steinem on reproductive rights litigation, but becoming housebound meant abandoning those efforts. Jaff was lucky, though: "It turns out this work is even more fulfilling, and I can do it from my home."

She's so far received some big-name support, including help from Mike McCready, lead guitarist for Pearl Jam, who has ulcerative colitis and Crohn's disease. He led an eBay auction that raised enough money to publish 500 copies of the handbook.

A public voice for people with chronic illness

Jaff has bigger plans beyond helping clients one at a time. Her Handbook is currently being translated into Spanish, and she's taking part in larger public policy work. To this end, Jaff's organization takes part in advocacy efforts on the federal level, testifying in state legislatures on health care bills. Her Chronicity Project aims to redefine the notion of disability to include invisible chronic diseases: "The Americans with Disabilities Act was written for people in wheelchairs, not for people who go to the bathroom 20 times a day but are otherwise fine," she explains.

Disability insurance is also a battle ground. To qualify, people must prove they have a permanent and fully disabiling condition, but "many of us don't qualify," Jaff says. "It's important to be talking about people with chronic diseases in the context of disabilities law."

Jaff also has strong words for supporters of health savings accounts (HSAs). Referring to President Bush's proposal for increasing use of HSAs paired with catastrophic coverage, she says: "HSAs only work for healthy people, not for us. For the rest of us, what he's proposing is a disaster. It's permission to provide health insurance that's inadequate for our needs, and I'm afraid it's going to make things worse, not better."

It's key, Jaff says, for people to become involved in the health care debate. Without advocacy, the needs of ChronicBabes and Dudes will be left behind. "What I'm trying to do is be the voice of people with chronic illnesses, as we have this public debate about how to fix the health care system," Jaff says. "If they don't design a plan for people who need the most health care and for whom care is the most expensive, then the health care system is going to fail."

You can help!

Here at ChronicBabe, we luv the work that Advocacy for Patients with Chronic Illness, Inc. is doing. If you luv it too, we urge you to support the cause with a donation (send to: Advocacy for Patients with Chronic Illness, Inc., c/o Jennifer C. Jaff, 18 Timberline Drive, Farmington, CT 06032). Or purchase Know Your Rights: A Handbook for Patients with Chronic Illness for yourself or a Chronic pal.

Posted: 5/25/2006 in Cool Tools | Also posted in: Coping

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Babe-created legal advocacy program helps people with chronic illness

Representing patients across the country

"This is what I'm supposed to be doing with my life"

A public voice for people with chronic illness

You can help!