News from Advocacy for Patients with Chronic Illness, Inc.

March 2011 Newsletter

In This Issue

My Meeting at the White House

Team McCready Global Fundraiser

The Chronicity Project

Know Your Rights Handbook

Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today.
Learn about health and disability insurance, Social Security disability, employment discrimination, family and medical leave, school-based accommodations, resource location, and much more.

Click here for more information.

Look What I Just Found!

Well, this isn't new to me, but if it's new to you, it's a must see. Every day, the Kaiser Family Foundation publishes Kaiser Health News. It's probably the best source of up to date news on health-related issues -- health reform, Medicare, Medicaid, state issues -- that I know of. There also are great columnists -- Jonathan Cohn and Tim Jost, for example -- and really great original reporting. Subscribe for free and you'll get an email every day with that day's health news.

It's almost as good as my blog! (kidding).

Jennifer

New Column: What I'm Reading

I thought you might like to know about the chronic illness related books I read. Right now, I'm about to start Toni Bernhard's How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. It promises to help us learn to be mindful -- focused and at peace. For some information about the author and her approach to chronic illness, visit her website here.

But I can't even start reading that book until I finish the SUBLIME biography of Jane Addams by my friend Louise "Lucy" Knight. I knew nothing about Jane Addams, I'm ashamed to say, before I started reading this book. I admire her more with every page. Indeed, I'm reading it painfully slowly because I feel a need to let every word sink in. If you're into biographies and/or you're looking for inspiration, Jane's your woman! Great book. Not about chronic illness strictly speaking, but Jane teaches us all how to fight the good fight, and you need some fight in you if you have a chronic illness.

Jennifer

Get Your Guts In Gear

Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2010 Rides, and hopes to be a beneficiary of the 2011 Rides, as well. 2011 Ride dates have not yet been determined, but check back here for more information. To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).

Advocacy for Patients on the Move!

March 26, 2011: Team McCready Fundraiser

April 8, 2011: Mike McCready's Flight to Mars benefit for Advocacy for Patients

May 4, 2011: G-PACT webinar

November 6, 2011: CCFA Long Island.

Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.!

It's Too Hard to Be Sick in America

Our book, It's Too Hard to Be Sick In America, is available FREE for your reading pleasure on our website. In it, we tell the stories of some of the patients with whom we've worked in order to show policymakers what chronic illness really looks like. Go have a read -- and the next time you talk to someone who clearly doesn't "get it," give them a copy of It's Too Hard to be Sick in America.

Advocacy for Patients with Chronic Illness

We provide FREE information, advice and advocacy services to patients with chronic illnesses in areas including health and disability insurance, Social Security disability, employment discrimination, Family & Medical Leave Act, school-based discrimination, and resource location.

Need help?
Call (860) 674-1370
or email us.

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Advocacy for Patients is committed to using its funds to support the work we do on behalf of patients. Accordingly, due to the cost of registering to solicit donations in other states, we do not solicit donations outside of the states listed above. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.

THANK YOU!

Quick Links

Advocacy for Patients on the Web

Jennifer's Blog

My Meeting at the White House

On February 4, 2011, I met with Kareem Dale, Special Assistant to the President for Disability Policy, and Jeffrey Crowley, Senior Advisor on Disability Policy. My "team" was the remarkable Janis Arnold, an Advocacy for Patients Board member and a wonderful social worker and advocate at Boston's Children's Hospital; the thoroughly glorious Wendy Shanker, author of the do-not-miss Are You My Guru? How Medicine, Meditation and Madonna Saved My Life; and the most articulate Jon Reiner, Crohn's patient and author of a forthcoming memoir of his ordeal with his illness.

White House

We actually met in the Eisenhower Executive Office Building next door to the White House, in a conference room full of antiques that reminded us that the first occupants of that building were the Departments of State, War and Navy. The building was built from 1871 to 1888, and there are many valuable reminders of that time, and even earlier.

Our meeting lasted about 40 minutes. During that time, we discussed the special challenges facing people with chronic illnesses, invisible disabilities. There was no question that both Kareem (he said "call me Kareem") and Jeff totally "get it," but our goal was to get them to spend a little time focusing on chronic illness today, and to ask them to include invisible disabilities when they talk about disability policy. We definitely accomplished that goal.

Janis talked about the experience of children who seek accommodations in schools. She gave wonderful examples -- IBD, Celiac, and transplants -- and very beautifully described the challenges these kids face in school, convincing schools to provide accommodations even if their grades are okay, and even if they're in remission, to plan for the inevitable. Wendy talked about her experience in the corporate world and how, when she got sick, she didn't know she had any rights, and felt that it was up to her to leave the corporate environment and make a new professional life for herself. Jon, who was well-aware of the Americans with Disabilities Act when he was in corporate America -- he worked for a time for a nonprofit that specializes in disabilities and the arts -- said that even knowing his rights, he felt he had no choice but to hide his illness as long as he could, and then leave when he couldn't hide it any more. All three were so articulate and persuasive.

Kareem and Jeff clearly got that, with invisible disabilities, the whole human resources machine doesn't kick in like it does for people with visible disabilities, so nobody reaches out to us to tell us what our rights are. And they definitely understood the point that those of us with invisible disabilities have to confront a culture of disbelief -- the whole "but you don't look sick" phenomenon.

We were pleased to hear that the Department of Education is working on guidance and a "dear colleague" letter to schools about how the 2008 amendments to the Americans with Disabilities Act impact the rights of children in school. I was strongly urged to contact the Department of Justice Civil Rights Division if we have any cases we need help on; Kareem said he would tell them about Advocacy for Patients. And if anybody would like to be on the list-serve for disability issue, just send your email address to sfeuerstein@who.eop.gov. Kareem strongly urged us to disseminate that email address so that people can see first-hand what the Obama Administration is doing for people with disabilties, so please, get yourself on the list.

This was a great day for me personally, and a truly remarkable day for Advocacy for Patients, as well as for patients with chronic illness. Indeed, Kareem said he was going to invite us to events and so on, so I expect this is the first of what will be other similar trips. We at Advocacy for Patients owe Janis, Wendy and Jon a great debt of thanks for taking the day, traveling to Washington, and being such great spokespeople for the chronically ill.

They talked about chronic illness in Washington on February 4, and that's a very good thing for the chronically ill.

Jennifer

P.S. - And it didn't end there. I've been in touch with FEMA (did you know they make ostomy supplies available to states, but only if the state asks for them?) and the US Department of Transportation (we NEED bathrooms at all train stations). And when the Obama Administration released their budget, we received a

fact sheet that explains all of the budget items that will benefit people with disabilities. Need something from the federal government? We now have a way in -- may not to get what we want, but at least to be heard. So let us know if you have a problem on the federal level and we'll see what we can do.

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