| Know Your Rights Handbook |
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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. |
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NIH Study: We Need YOU! We are excited to report that, 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. Our first step will be to prepare and send out a mailing to you that will describe the study in more detail, tell you what would be involved if you were to participate, and tell you how to let us know that you are willing to help. THIS IS YOUR CHANCE to tell the NIH what your struggles are like. If you haven't done so already, please send your mailing address to: patient_advocate2@sbcglobal.net to ensure that you will receive this mailing and have a chance to participate in this important study. Thank you!
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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!
THANK YOU! |
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The Americans with Disabilities Act Amendments of 2008
Effective January 1, 2009, the ADA will be amended to stress Congress's intent that courts interpret the ADA broadly, consistent with the intent of remedying any discrimination based on disability.
These amendments make the following changes:
- The phrase "major life activity" also includes operation of "major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions."
- An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.
- The question of whether an impairment is disabling must be made without regard to whether medication, equipment, prosthetics, assistive technology, or other treatment, devices, and supplies improves the impairment, although eyeglasses still are considered for determining the severity of a vision impairment.
We have received several calls from patients who have the impression that these changes will affect the ability to obtain Social Security disability benefits. This is NOT the case. The ADA prohibits discrimination by employers, public accommodations, and schools, and requires them to provide reasonable accommodations to people with disabilities. It does NOT provide monetary benefits and does NOT govern what counts as a disability under Social Security.
Still, these Amendments are groundbreaking. They represent the first recognition of "chronicity" -- that aspect of chronic illness that makes it different from illnesses that can be cured and illnesses that are terminal -- in American law by providing that a chronic illness that would be disabling during a flare constitutes a disability even when it is in remission.
Have questions? Call Advocacy for Patients with Chronic Illness, Inc. at (860) 674-1370.
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The Chronicity Project
We receive many calls and emails asking us about The Chronicity Project, our public policy arm, so we thought we would tell you what we are working on.
From time to time, federal legislation or regulations are introduced that would affect the chronically ill. Because we don't have a lobbying presence in Washington, most of our work on the federal level is in the form of letter writing, emails, and phone calls asking members of Congress to support legislation like the ADA Amendments described above. We also have submitted detailed comments on proposed regulations, such as regulations that would alter the Social Security disability application process.
But because we are based in Connecticut, most of our public policy work is done here. Connecticut -- as is the case with many states -- is in the throes of debating how best to solve the healthcare crisis. Advocacy for Patients is the voice of the chronically ill in these discussions.
Chronic illness represents 75% of every healthcare dollar spent in the United States. So healthcare reformers want to find a way to make chronic illness less expensive. There are various models of chronic illness management. Advocacy for Patients seeks to ensure that the focus is on managing chronic illness, NOT managing the chronically ill!
We have two main points that we stress in promoting the rights of the chronically ill in the context of healthcare reform:
First, patients must be part of the solution. We can manage our own care if we are given a little guidance and direction, like the assistance Advocacy for Patients tries to provide. If patients participate in their own care management, they will be more compliant with doctor's orders (at least in part because they will understand them better), and their health outcomes will improve -- thereby reducing the cost of caring for them.
Second, for the chronically ill, healthcare doesn't end at the doctor's office. If we lose our jobs, we lose our insurance. If we can't go to school, we lose our ability to become productive members of society. Care management for chronic illness must address all of the needs we have, from finding insurance, to getting insurance to cover what we need, to ensuring we have adequate accommodations at work and school, to enforcing our rights under the Family & Medical Leave Act -- our illnesses affect all aspects of our lives and, thus, solutions must address all aspects of our lives, as well.
In future newsletters, we will tell you more about how we believe patients can and should participate in their own care. For today, as you read this, think about what you learned from your interaction with Advocacy for Patients. If we were able to help you, did you learn how to help yourself next time? If we were not able to help you, what is missing or broken in the system that would get you the help you need?
These are the sorts of questions we try to answer through our public policy work.
Is there an important public policy initiative in your State? Get involved. Write your Governor, state legislators, and agency heads. Go testify at legislative hearings. Make phone calls to spread the word and help organize an effort to stand up for your rights.
As Martin Luther King, Jr. said, "[o]f all the forms of inequality, injustice in health care is the most shocking and inhumane." The Cronicity Project seeks to right these wrongs. You can help. Pick up the phone. Send an email. Write a letter. Tell your story. Only by standing up and speaking out will we ensure that our rights are promoted and protected. |
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Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
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