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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.
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Look What I Just Found!
The Obama Administration announced a new initiative, called the Partnership for Patients. The goals are to increase patient safety in hospitals, saving over 60,000 lives in only three years; and help patients heal better, without complications that cause hospital readmissions. If this works, it not only will benefit patients, but it also will save a lot of money that is spent today on hospital acquired infections and complications post-hospitalization. Has your hospital and doctor(s) taken the pledge? Check out the list -- and if your providers are not on it, tell them about the Partnership and encourage them to join. We did!
Jennifer
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What I'm Reading
One of the few good things about traveling is that it gives me a chance to catch up on my reading. So on my trip to Seattle for Mike McCready's Flight to Mars Benefit Concert, I had a chance to read Toni Bernhard's How To Be Sick. Toni was a law professor until her illness -- chronic fatigue syndrome -- sidelined her. She wrote this book from her bed. She was a long-time student of Buddhism before she became ill, and she uses her knowledge of Buddhist practice to help craft strategies for coping with chronic illness.
You don't have to be a Buddhist to appreciate this book, though. As I read, I just kept nodding my head in recognition of shared experiences -- the friends who no longer visit, being forced to abandon or change careers, reliance on caregivers, isolation, fear.
But Toni finds ways to turn those negatives around by accepting and embracing the present. Indeed, she has a blog called Turning Straw Into Gold. Check it out.
This is a terrific, quick read that will, at the very least, remind you that you're definitely not alone. I highly recommend it.
Jennifer
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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 are June 10-12 (New York); August 5-7 (Northwest); and September 16-18 (Midwest). To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
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| Advocacy for Patients on the Move!
June 16, 2011: Jill Roberts IBD Center support group
August 11, 2011: UOAA conference via Skype
September 18, 2011: CCFA Manhattan
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.!
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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.
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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.
Advocacy for Patients Needs Your Help!
To keep providing these services for FREE, we need your help.
WE DO NOT SOLICIT DONATIONS OUTSIDE OF THE FOLLOWING STATES:
CT, MA, WA, MN, CA, IL, NY, TX, VT, MT, ID, WY, NV, SD, NE, IA, IN.
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!
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Social Security Disability
We get a lot of questions about Social Security disability. The most common question we get is whether there's any way to speed up the process. The truth is that, if you're denied at the initial application stage -- and 70 percent of people are denied at the start -- you are going to wait close to a year in most of the country to get a hearing, and in some parts of the country, you will have to seek reconsideration first. The system is terribly back-logged. In some cases, a Senator or Congressman's inquiry about the status of your case may help break a logjam, but other than that, we know of no way to speed up the process.
Hopefully, though, even if we can't speed things up, we can help you understand the system a little better.
There are two forms of Social Security disability -- Social Security Disability Income (SSDI), for which you have to have earned a total of 40 work credits (typically, forty three-month quarters, or a total of 10 years) with 20 of those occurring in the most recent 10 years; and Supplemental Security Income (SSI), which you can get even if you've never worked, but only if you have little or no income. There are people -- for example, women who haven't worked in years because they chose to raise kids full-time, but who have more than poverty level income -- who do not qualify for either, even if they are otherwise disabled. Usually, if you are denied SSDI because you don't have enough work credits, or if you are denied SSI because you have too much income, the only reason to appeal would be if you believe Social Security got the facts wrong. Most people, though, are denied because Social Security doesn't agree that their illness is disabling.
The disability determination is pretty much the same for both types of assistance, SSDI and SSI. You have to be unable to perform any job in the economy -- think the most light duty, sedentary job you can imagine. It's not enough that you are unable to keep working at the job you had when you became disabled; you have to be unable to perform ANY job. For a child, disability occurs when you have a severe impairment that is reasonably expected to result in death or to last for a continuous period no shorter than 12 months.
In most states, if you get SSI, you are automatically eligible for Medicaid. If you get SSDI, you become eligible for Medicare after two years. SSI typically pays a monthly amount that is less than what you would get under SSDI, but the value of Medicaid cannot be overstated.
If your application is denied, it's important that you appeal rather than giving up and starting over. When you win, Social Security often pays you a lump sum that covers the period from the date of your application (and sometimes earlier) to the date when you win. If you give up and start over again, you may lose some of that retroactive benefit.
It's also very important, if your application is denied, to get a lawyer. Lawyers who do Social Security disability appeals don't get paid unless they win, and the amount they are paid is the lesser of 25% of that retroactive lump sum or $6000 (the amount changes every year to adjust for inflation). Because lawyers who handle Social Security appeals can be hired without coming up with cash up front, Advocacy for Patients does not do Social Security appeals -- we focus on doing the things you can't get anywhere else. If you don't know an attorney, you can call us and see if we have anybody on our referral list, or you can call the National Organization of Social Security Claimants' Representatives at 1-800-431-2804. They also have a great set of FAQs here that we find very helpful.
Although the percentage of people who win at the initial application stage is low, roughly half of the people who appeal win. So don't give up; get yourself a lawyer and appeal.
Finally, I think the best advice I have for people who are applying for Social Security disability is to keep a diary for a little while before you fill out the application and/or before your appeal hearing. It will help you gather your thoughts, be precise and detailed (how many times did you go to the bathroom during the period from 9 am to 5 pm on average in a two week period?), and remember all the information you want to convey.
And don't be shy; if you have accidents, say so. There's a horrible court decision I read once that sticks with me. The judge said a patient with inflammatory bowel disease wasn't disabled because, although she said she needed to be near a bathroom all the time, she never said she'd soiled herself! For those of us with IBD, we know what we mean when we say we have to be near a bathroom, but don't assume that anybody else does. Be explicit and detailed when you describe your daily life.
That's just the tip of the iceberg. In addition to the NOSSCR FAQs I linked to above, the Social Security Administration's website is pretty user friendly. You can find answers to most of your questions there. If you run into a problem, you know where to find us! |
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Giving Thanks
When I started Advocacy for Patients in March 2005, I had no idea how I'd pull it off, if I'd pull it off. I just knew that I wanted to do this work, and I was willing to make whatever personal sacrifices I had to make in order to do so. For the first 18 months, I started to do this work while maintaining a side-job practicing law to pay the bills. Once I was able to pay myself a salary, things got easier -- but as word about us gets out, our caseload grows and grows. My first hire was an administrative assistant. And in March, as you know, we hired another lawyer to keep up with demand. As I scrounge for dollars from wherever I can find them, I think I may too often miss opportunities to thank those who have helped to keep Advocacy for Patients afloat.
I was incredibly lucky from the start to have a couple of amazing friends. Our first big check came from Gloria Steinem's Ms. Foundation discretionary fund. Gloria told Pearl Jam's Mike McCready and his wife Ashley O'Connor about me, and Mike and Ashley have been AMAZING to us, raising tens of thousands of dollars to support the work we do here. And because Pearl Jam's fans are the absolute BEST, they have started a nonprofit called the Wishlist Foundation, which supports the causes Pearl Jam's members support. For Mike's fans, that has meant the Team McCready fundraisers to benefit Advocacy for Patients two years in a row. There are some very special people involved in Wishlist whom I'd like to thank by name, but I'm too afraid I'll leave somebody out, and you know who you are. Every single volunteer at a Team McCready event, at the Flight to Mars event, or at any pre-show party Wishlist has thrown for our benefit has a place in my family, always.
Without Mike and Ashley and Wishlist, we'd be out of business. But that doesn't mean that every penny we bring in isn't equally important. We've been very lucky to have worked with the University of Michigan Center for Managing Chronic Disease, with which we partnered on a two-year NIH-funded study of the obstacles facing the chronically ill and the strategies they use to surmount them. Without their grant-writing skills and expertise in social science research, we never would have received funding from the National Institutes of Health. For the past two years, we've been a proud beneficiary of the work done to raise funds for awareness of inflammatory bowel disease by Get Your Guts in Gear. The Connecticut Health Foundation and the Universal Health Care Foundation of Connecticut both have supported our work, paying to print our books and to help us get the word out about health reform, both state and federal.
But if you looked at our bank account or tax return to see where the money has come from, the overwhelming majority has come from the people we help. If you think your $50 check isn't a big deal to us, think again. About one-third of our funding has come from the sources I've mentioned above and a few other grantors. That means two-thirds of it comes from you.
And so I thought that now -- after the big Spring Team McCready and Flight to Mars fundraisers -- would be a good time not only to recognize those major donors and friends, but also to thank you for the $5 or $10 or whatever you could spare to help us to help you. Sure, it's fun to hang out with rock stars -- the times I've had the amazing experience of being backstage at a Pearl Jam show are memorable, no doubt. But if you really want to know who funds our work in addition to the big supporters mentioned above, it's YOU.
And because of you, people have gotten health care without which they would have died. Because of you, children with chronic illnesses have accommodations in school so they can stay in school rather than being homebound. Because of you, people who would have lost their jobs kept them due to the Americans with Disabilities Act and the Family and Medical Leave Act. Because of you, almost 150 people a month come to us for help -- and get it.
So when I say thank you, it's not for me, or even for Advocacy for Patients. It's for all the people like you who need our help, now and in the future. Every time a person thanks me, they really mean to thank you.
It's true that we'd be out of business without Mike and Ashley and Wishlist and all the people who support Team McCready and Flight to Mars. But we'd also be out of business without all of the individual donations we receive from all of you. So from the very bottom of my heart -- and on behalf of all of our clients, past, present and future -- thank you. You allow me to do the best job in the world. I am eternally grateful. Jennifer
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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
Things are moving so quickly, it's hard to update you only once a month! As you know, the federal government did pass a 2011 budget that involved $38.5 billion in cuts, many of which will take effect down the road, so we haven't felt the big pain yet. But we will.
The deficit continues to be the major focus of all of Washington. There is the 2012 budget, as well as several debt reduction strategies. One promoted by Representative Ryan would end Medicare and Medicaid as we know them, replacing Medicare with money to go buy insurance on the open market. (Of course, since most Seniors have pre-existing conditions, they'll never get insurance, but be that as it may ....). Medicaid would change to a system of block grants through which the federal government would provide the states with a pot of money and fewer rules on how to spend it. President Obama has laid out his own deficit reduction plan that would make changes to both Medicare and Medicaid, but with a "scalpel not a machete." President Obama would also increase taxes on the wealthy, whereas Rep. Ryan's plan would actually reduce taxes. There is a bipartisan handful of members of Congress who are working on a third alternative, and the Simpson-Bowles Commission -- brought together by the President -- also has laid out a plan. How this will all play out remains to be seen. But it looks like health care -- not just health reform, but Medicaid and Medicare -- are all likely to feel the pain. Stay tuned.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut Health reform implementation continues to occupy much of our time. We are one of a group of advocacy organizations that has been invited to submit comments to, and meet with, the Office of Policy and Management here in Connecticut to provide input on how to design the Exchange that will be the marketplace where consumers can purchase insurance. There are a lot of tough issues: Do we combine the individual and small business markets? Should the Exchange select and negotiate prices with insurance plans or should all plans be listed? What mechanisms will make the Exchange easy for consumers to use? Advocacy for Patients took the lead on drafting comments that were submitted last month, in advance of our May 3 meeting with OPM. Our new Healthcare Advocate, Vicki Veltri, is on the formal Exchange Planning Committee, along with our friend Teresa Younger, who's the Executive Director of the Permanent Commission on the Status of Women. It is our hope that they will be the voices of consumers on the Committee, and that our input will be incorporated into the planning as things move forward. In other positive news, SustiNet -- Connecticut's version of the "public option" piece of health reform -- has been passed by all three Committees of cognizance, and now will go to the full legislature. However, the fiscal note that came out looks like it's very expensive, although the drafters of the plan say this didn't take federal funding into consideration adequately. And the paid sick days bill, which would require employers to allow all employees to accrue up to 40 hours per year of paid sick leave, also passed committee and has a good chance of passage. As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Courtesy of G-Pact, Arkansas has passed a bill that would require insurers to cover gastric electrical stimulation for gastroparesis. If you are a GI motility patient in Arkansas, contact your legislators and the Governor now to thank them.
Courtesy of the Neuropathy Action Foundation, attempting to reduce costs, insurers increasingly are using specialty tiers to pass on the cost of expensive prescription drugs. States are beginning to respond. New York passed a law prohibiting insurers from creating specialty tiers on October 1, 2010. Similar legislation is pending in CA, AZ, NE, FL, MD, HI, WA, OR, AK, NM, CT. Many other states are looking at doing the same. If you are having problems with a specialty tier and would like to help by telling your story, let me know and I'll try to put you in touch with the right people, or contact the Neuropathy Action Foundation here. In the meantime, keep up the fight. 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
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