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TAKE THE NIH SURVEY!
Finally, it's ready! Take the survey here! Whether you are a patient or a caregiver, there's a version of the survey for YOU!
As you know, in partnership with the Center for Managing Chronic Disease at the University of Michigan, we have received a grant from the National Institutes of Health. The purpose of the study is to examine the challenges faced by the chronically ill, and ways in which interventions can be more effective in addressing those challenges.
You can TAKE THE SURVEY NOW online, or you can take the survey over the phone if that would be easier for you.
If you want to take the survey by phone, please send your mailing address to: patient_advocate2@sbcglobal.net and we will mail you a packet of info, including consent forms. Thank you!
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Art for Advocacy!
Our dear friend and artist extraordinare, Julia Lucich, has agreed to paint your portrait with all proceeds going to Advocacy for Patients with Chronic Illness. This is a limited time offer, so don't delay. Check out Julia's website here, and email her at the contact info on the website if you're interested in having a Julia original in your home, or presenting one as a gift.
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Look What I Just Found!
Maree McRae is the mom of a child with a common variable immune deficiency (CVID), but more importantly, she's an amazingly gifted singer, guitarist, and songwriter. Check her out here. Many of her songs were written for her son. They will touch your heart. You're going to thank me!
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It's Too Hard to Be Sick in America
Our new book, It's Too Hard to be Sick in America, is now 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.
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Advocacy for Patients on the Move!
September 16: Speaker at Crohn's & Colitis Foundation in Manhattan.
October 3: Keynote speaker at the IBD Educational Seminar in Atlanta.
October 26-27: Meeting for NIH grantees about our chronic illness survey and other similar projects.
November 13-14: Keynote speaker at the Association of Pediatric Gastroenterology and Nutrition Nurses conference in Washington, DC.
Come say hello! |
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Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today. Click here for more information. |
Get Your Guts In Gear
Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2009 Rides. To learn more about the 2009 Rides in New York, Seattle, and the Midwest, and how you can participate as a rider or volunteer crew member, see their website for details or call 866-9iGOTGUTS (866-944-6848). |
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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Rest in Peace . . . and Thanks
Whether you are a Republican or a Democrat, liberal or conservative, you can't help but acknowledge the astounding achievements of Senator Edward M. Kennedy that affect the lives of people with chronic illnesses every day. I thought I would tell you about a couple of laws that you ask me about frequently, but that you might not know were created by the late Senator Kennedy.
The Family and Medical Leave Act (FMLA) provides twelve weeks of unpaid leave in a twelve month period, during which time you cannot be fired from your job for absenteeism. The FMLA applies to people who've been at their job for at least twelve months, who work for employers with 50 or more employees. Leave can be taken intermittently -- so if you need a day or two off here and there for doctor appointments or to take your child for Remicade treatments, the FMLA applies. The FMLA protects people with "serious health conditions," (and their parents and spouses), so you don't have to meet the higher standard of disability to get the benefits of the FMLA. All you need is a brief doctor's note and a written request for FMLA leave. I can only imagine how many jobs Senator Kennedy saved with the FMLA.
The Americans with Disabilities Act (ADA) prohibits discrimination against the disabled, and requires employers and public accommodations (and others) to provide reasonable accommodations to people with disabilities. Under the ADA, a "disability" is a substantial impairment of a major life activity. The ADA was amended in 2008 to provide that bodily functions like bowel, digestion, and the immune system are major life activities, so if you are substantially impaired in one of these bodily functions, you meet the definition of "disability" under the ADA. In addition, the 2008 amendments clarify that an episodic or chronic illness that would be disabling when active is considered a disability even when it's in remission. If you have a disability, you can't be treated differently because of it. And if you have a disability and could work if only your employer would help you a little bit -- anything from locating your desk near a bathroom to (depending on the circumstances) a job transfer or flexible hours (again, depending on the circumstances) -- you can submit a written request with a supportive doctor's note and request reasonable accommodation. The ADA applies to employers with twenty or more employees.
I'm a confessed left-of-liberal progressive (in case you hadn't figured that out), so losing Senator Kennedy was shattering for me. I lost one of my heroes, and I don't know who, if anybody, can take his place.
But even if you don't share my political views -- and after all, the chronically ill come in all shapes, sizes, and viewpoints! -- these two legislative accomplishments are part of your lives. They provide you with rights and protections that you otherwise would not have. You can disagree with Senator Kennedy about a lot of things, but I think most of you will agree that he did some really great things for our benefit.
So rest in peace, my friend, and thanks.
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Thank YOU for Paying it Forward!
A couple of weeks ago, we wrote you and told you of a funding loss we've suffered as a result of the economy. I wasn't surprised at the response because I know so many of our clients give back far more than they receive -- you're just those kind of folks. But I really wanted to thank you nonetheless. In only a few days, we raised $5000!!!
In addition, our good friends Eric Long, Laura Trafton, and all the crew of the Wishlist Foundation held two fundraisers for us before the Pearl Jam shows in Chicago August 23-24, and raised nearly twice that!!!
I can't tell you how much we appreciate all of this support. Because of you, we will make it through this year, actually INCREASING the number of people we've served, when so many other nonprofits have struggled.
We'll still have a significant funding shortage to make up for next year, so our fundraising drive is far from over, but you've bought us the critical time we need to seek other funding -- and we're working hard to do just that.
So thank you for paying it forward, making sure that we're here to help the next patient in need.
Special thanks to Ashley and Mike, Gordon and Jennifer, Suzanne and Dad -- the people I lean on so you the rest of you can keep leaning on me. Jennifer
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One Hour Challenge
Every year, one of our former clients and great friends, Barbara Lynn, conducts a fundraiser for us. All you have to do is pledge to do something -- anything -- for one hour on October 4, collect pledges, and then send Barbara the funds. She will tally them up, send all of your donors a thank-you note (as we will), and then pass the funds on to us. This is a GREAT way to support Advocacy for Patients if you can't just write a check. If you want to participate, email Barbara at blynn105@hotmail.com and she will send you a pledge form and further instructions. Thanks!
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Invisible Illness Awareness Week
September 14-18 is National Invisible Chronic Illness Awareness Week. There are a series of webinars given by experts (including yours truly), prizes to win, and lots of supportive information. Check it out here. I will be speaking about health insurance on Monday September 14 at 12 pm Pacific/3 pm Eastern times. Come listen! |
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The Chronicity Project
This is the space in our newsletter where we talk about health care policy affecting the chronically ill.
Here's an update on what's happening in the legislative arenas:
Federal
Since our last 2 1/2 newsletters have centered on federal health care reform, I thought I'd give you a little break this month -- but really, none of us who cares about health care reform can afford to take a break.
As you know, Congress has been in recess during August and is just getting back to work. We're still waiting for a draft from the Senate Finance Committee, and then the House has to reach agreement on a single bill from its three Committees, and the Senate has to consolidate the drafts from its two Committees. Then the entire House votes on its version, the Senate votes on its version, and then the real work -- the conference committee -- will start.
We've all heard about the crazy town meetings, and the untruths being told about the health care reform proposals are downright shocking. For more information about some of those untruths, see White House Reality Check and Factcheck.org, as well as our blog.
Throughout this process, it is critical that your Members of Congress hear from you. If you want health care reform to happen this year, please help to flood the Congressional switchboard with calls to 1-866-210-3678. Make sure your Senators and Representatives know that you want change NOW. To find your Representative, go here; to find your Senator, go here.
Also, if you're a patient with an immune or autoimmune disease, you may be interested in S. 701 and HR 2002, bills to improve access of Medicare beneficiaries to intravenous immune globulins (IVIg). This is critically important legislation designed to eliminate some of the existing obstacles to getting this much needed treatment. So contact your members of Congress to support this legislation.
Connecticut
Finally, it looks like we have a budget. That means the legislature finally will go into recess for a little while.
As always, it's never too late to contact your State Senator or Representative and thank them for their votes. Your State
So many of you ask me what you can do. First, be aware. Read your local newspapers. Find the website for your state legislature. Read. Write your state legislators about things that concern you. One tool we like is the Kaiser Health News, to which you can subscribe for free. But don't just read: ACT. Go to hearings and testify. Tell your story. Put a real face on the healthcare crisis. |
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Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
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