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* NEW *
2012 EDITION
Know Your Rights Handbook | 
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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 or order today on our website or on Amazon.com.
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Look What I
Just Found!
The US Department of Health and Human Services is trying to create a new and better way to get health information on the internet. They've developed a digital strategy that's creating content-specific web-based "supermarkets" where you can get all the info you need in one place. The HHS site offers the ability to search by disease; there are mobile apps; you can even access HHS health data -- a treasure trove to researchers. This is huge.
Two psychologists met at Camp Oasis, the camp for kids with Crohn's and ulcerative colitis. They decided to team up and create a practice dedicated to chronic illness and especially digestive disease. The result is Oak Park Behavioral Medicine in Oak Park, Illinois. A great resource, like my friend Frank Sileo, who runs the Center for Psychological Enhancement, which also focuses on chronic illness.
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Living with Chronic Illness: A Prescription for Advocacy | 
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Read the results of our chronic illness survey, available FREE here.
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What I'm Reading
We get lots of calls from people who have multiple chemical sensitivities. These are really tough illnesses because it's hard to find schools, workplaces, even apartments that don't have mold or anything else that would affect someone with great sensitivity to allergens.
I was pleased, then, to receive a copy of Chemical and Electrical Hypersensitivity: A Sufferer's Memoir by Jerry Evans (a pseudonym). I haven't had a chance to finish reading it yet, but it's a very important tell-all book about an affliction that is poorly understood and very hard to avoid. He now lives in the Arizona desert -- and I know others with multiple chemical sensitivity there, as well.
This book will inspire you and give you ideas of how to cope with these very difficult challenges. I can't wait to finish it -- and all proceeds go to charity, so you're doing yourself and others a favor when you pick up this one.
Jennifer
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Get Your Guts In Gear
Ready to ride? The 2012 schedule is up.
New York: June 8-10, 2012 in the beautiful Hudson River Valley
Midwest: September 7-9 in Wisconsin
I heard the New York ride was wonderful, so if you're in the midwest, please check out this opportunity to have fun and raise money for a great cause!
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!
We're taking a break from travel at the moment due to pure exhaustion.
But we will be speaking at the Personalized Medicine Workshop on September 20 in Cambridge, MA, and we're gearing up for some trainings of federal officials about health insurance. 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.
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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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School Days!
As has become our custom, with the start of the school year, we bring you an update on the laws that ensure that children with disabilities have a free and appropriate public education.
First, there are several laws that provide such protections: Section 504 of the Rehabilitation Act provides for a plan of accommodation, just like the Americans with Disabilities Act provides in the employment context. The Individuals with Disabilities in Education Act (IDEA) also provides for plans to help kids with disabilities. There are important differences between the two. First and foremost, IDEA is for kids who, due to disability, are in need of special education and related services. Section 504 doesn't require that the child show any need for special education services. So a child who needs an any time bathroom pass and extra time on exams but nothing more probably will do fine with a Section 504 plan. On the other hand, a child with a digestive disease who also has developmental delays and needs physical therapy, speech therapy and a one-on-one paraprofessional to assist her throughout the day with her feeding tube will need an Individualized Education Plan or IEP, which comes under the IDEA.
Section 504 is much less formal than IDEA. A 504 plan can be handwritten. It can be developed over several meetings. There aren't strict time frames. The participants in the 504 meeting differ from district to district. I like Section 504 because it allows us to interact with the school over a period of time and work things out without a formal hearing. Under IDEA, once you start the process, there are time limits and a particular form the plan has to be in, and it's much more likely that you'll end up in a hearing if you and the school disagree -- and a hearing means you probably should have a lawyer, and that means money. Section 504 cuts through a lot of that. But really, the choice between the two should rest on the nature of the student's disability and whether there is a need for special education or related services.
It's not hard to qualify for a 504 plan. The student has to have a "disability," which means a substantial impairment of a major life activity. Major life activities are things like walking, talking, hearing, seeing, concentrating, sleeping -- as well as the body's bowel, digestive, immune, respiratory functions. A child with Crohn's disease may be able to walk, talk, read and write, but if she's using the bathroom thirty times per day, if she has accidents, then she's substantially impaired in the major life activities of bowel function. Don't forget about the "substantially" part. It's not enough that the student has a diagnosis of Crohn's disease and may some day get really sick from it; she has to have a substantial impairment. Going to the bathroom thirty times per day is substantial; going to the bathroom twice a day is not. But the law also states that episodic illnesses that would be disabling when active also are disabling when in remission, so if the student has had a horrible flare, been hospitalized, had surgery, missed a month of school, that student is going to be "disabled" even when in remission.
Once you establish that the student has a disability, the question then is what accommodations are needed. The easy ones that schools don't fight over (for the most part) are things like an any time bathroom pass, stop the clock testing (the clock stops running when the child leaves the room to use the restroom and starts running again when the child returns), extra time on assignments, provisions that ensure that the student is able to catch up after missing a few days of school, a substitute for physical education class, such as writing a paper on a famous athlete -- these sorts of accommodations cost the school nothing and typically are agreed to quite easily.
Where we get push back in some cases is on in-home tutoring, which does cost the school money. Every school district I've ever worked with has had a policy on when they will provide home/hospital instruction or homebound instruction. However, that policy is for kids who typically have one long absence from school and that's that -- a broken leg, surgery to remove an appendix, but not usually a recurrent, chronic disease. So the fact that your school's policy says that homebound instruction is provided only after 20 consecutive absences (or even 10 consecutive absences) does not mean that a 504 plan can't require tutoring after fewer consecutive absences. One of the great things about a 504 plan is that it can be as flexible as the student needs it to be. You can have whatever you can negotiate.
Often, Section 504 plans challenge us to be creative. For example, if you are trying to write a plan that alleviates some of the workload for a student who misses a lot of school, you can say that the teachers will identify essential assignments and non-essential assignments at the beginning of each semester; or you can say that teachers will waive assignments as time passes; or you can say that the student will have an extra three days for each day of absence to complete assignments; the possibilities are endless. Students may be sent the teacher's lesson plans or another student's notes or a tape recording of class -- I've even worked with schools who are using Skype to allow kids who are at home due to illness to actually participate in class!
And if you decide to try something in a 504 plan and it turns out not to work very well, all you have to do is ask for another 504 meeting to review and amend the plan. Indeed, if a school feels strongly about trying things a certain way, it's often beneficial to give it a try and, if it doesn't work, you may all have a better sense of what exactly the student needs.
Several years ago, we wrote a template 504 plan for students with inflammatory bowel disease. It's everything we could think of that a kid with IBD might need; we didn't intend that each child would need all of it. It's been in use for a long time, now, and we get requests for it all the time. Even if your child doesn't have IBD, it will give you lots of ideas about what should be included in the plan and how to accomplish that. If you're looking for it, look no further than our website, here!
With the advent of online classes, it's getting easier for schools to suggest that kids who are absent alot stay home and take classes on a computer. If you choose to do so, there's nothing wrong with it. However, a school cannot force your child to stop coming to school as much as he or she is able. Students are entitled to be educated in the least restrictive environment, and that means a regular classroom setting to the fullest extent that they are able. If your child has a major surgery and needs to be at home for months, online education may be the perfect solution. But if your child is well enough to attend school, even part of the time, your child has a right to do so.
For students who are past high school and starting college or even graduate school, Section 504 is an option for you, too. Especially if you had a 504 plan in high school, your first stop on campus should be the disabilities office. You should bring them a copy of your latest 504 plan and see what kind of information they are going to want in order to determine what accommodations you will need in your new environment. Keep in mind, though, that the older you get, the harder it is to get schools to make changes to the curriculum or relax class participation requirements and so on. Colleges and graduate schools are given a lot of latitude by courts when they claim that an accommodation cannot be provided because doing so would compromise academic integrity. You can still get bathroom breaks, extra time on exams, and perhaps some provisions for making up missed work. What I can tell you for sure, though, is that if you don't register with the disabilities office and end up with bad grades, it's really hard to undo the damage. So put your pride aside and register with the disabilities office when you arrive on campus.
Section 504 is one law that is easy to navigate on your own, without spending money on lawyers. Indeed, if you reach a complete impasse with the school, not only will you have due process rights to a hearing and appeals, but you can file a complaint with the United States Department of Education Office of Civil Rights. Information on the complaint process is here. In addition, we write lots of letters to schools and participate in Section 504 meetings all over the country by speakerphone, so if you have a problem, give us a call and we'll do our best to help.
Kids shouldn't be sick. School should be about wonderment and discovery. But for kids with chronic illnesses, life is not how it should be; it is how it is. Our goal is to ensure that every student has the best educational experience possible. Section 504 is a powerful tool to help us get to that goal.
Jennifer
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Living with a chronic illness can sometimes beat the fight right out of you. There are many methods to help people cope with their illnesses, but I've recently been intrigued by the idea of online gaming. With 500 million people playing games online, we have unprecedented access to social support, positive feedback, and collaboration to combat our very real daily problems. SuperBetter aims to tap into the creative problem-solving skills we hone over hours and hours of online gaming in order to positively impact our lives.
The game's designer, Jane McGonigal came up with the idea after suffering a severe concussion that failed to heal properly. She was stuck in a mental fog, in constant pain, and suffering from suicidal ideation. She drew on her scientific research on the psychology of gaming to create "Jane the Concussion Slayer." This new secret identity helped her set goals, recruit allies, battle "bad guys" (things that made her feel worse, like bright lights) and activate "power-ups" (things that made her feel better, like cuddling her dog). After just a few days of playing, her depression and anxiety decreased dramatically, she felt more productive and empowered, and stopped feeling like she was suffering.
Realizing that not everyone could identify with "Jane the Concussion Slayer," she renamed the game SuperBetter and adapted it to help tackle all sorts of problems. She began hearing from people battling cancer, chronic pain, depression, and even Crohn's disease. Today the SuperBetter community is filled with players facing a wide array of chronic illnesses, including Parkinson's disease, social anxiety, obesity, and chronic fatigue. McGonigal cites four characteristics of online game play that help the players succeed in achieving their goals: urgent optimism, feeling the task is worth trying and worth trying now; social fabric, trusting others to help you achieve; blissful productivity, happier when working hard toward a goal; and epic meaning, weaving a story that involves people from around the world.
The game is designed to build your physical, mental, emotional, and social resilience. You start by creating your own secret identity, identifying your biggest challenge, recruiting friends and family, and completing quests designed specifically for you. The players with chronic illnesses report feeling stronger, braver, better understood, and happier overall. It takes problems that seem big and breaks them down in small tasks that a community of players can help you tackle. Best of all, it is free and easy to join, so start recruiting your allies and go check it out! https://www.superbetter.com.
Brittany |
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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
The August recess came and went. Before the recess, Congressional leaders said that they had reached agreement on a six-month budget deal that would avoid the hand-wringing about a government shut-down in the lead up to the election. So presumably, Congress will come back and vote on that. Don't expect a whole lot more in the short-term. The Fall is going to be one long campaign commercial.
A brief note about the election. We don't tell you who to vote for; that's not our role. But what I will tell you is that the upcoming election matters -- alot. It may decide the fate of Medicare, abortion rights, disability rights and much more. We are all required to pay attention and listen and read critically so that we can be confident that we have accurate information and are making our decisions for the right reasons. Don't rely on one newscast or one newspaper; get your information from various sources so you can be sure you're getting the truth. I know it takes work, but that's what it means to live in a democracy.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut The legislature is out of session and Exchange-related meetings were cancelled in August, so we have nothing new to report on the state level, either. Exchange Advisory Committee meetings begin again on September 10 and the September Exchange Board meeting is September 27. To find all the latest news and schedules for the Connecticut Health Insurance Exchange, go here. Your State State legislatures are out of session, and I haven't heard much of anything new over the past month. Vermont is not only choosing its essential health benefits package for all insurance sold in the state from 2014 forward, but they're making critical decisions about cost-sharing and other benefits. Get involved with the Green Mountain Care Board -- go to meetings, give public comment, have a voice in health reform in your state. Something going on in your state? Let us know.
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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