Review Advocacy for Patients
| |
If you love our work, then tell the world! You have an exciting opportunity to help make even more of a difference in our
community. GreatNonprofits-a site like Amazon reviews or TripAdvisor-is conducting a campaign to identify the top-rated disability nonprofits in the country.
Won't you help us participate in the campaign by posting a review of your experience with us? All reviews will be visible to potential donors and volunteers. It's easy and only takes 3 minutes! Click on this link.
P.S. Be sure to choose "Disability Campaign" from the drop down menu of campaigns in the review template!
With your help, we can gain greater visibility in our community.
|
|
| 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!
This one is really exciting, folks. As you know if you read this newsletter, you know that the federal government has been building a website that contains all of the information you need to know about health reform, including how to select an insurance plan in your state.
Well, now it's available in Spanish. Yup, the content is now available to you and your friends who prefer or require Spanish-language text. Just go here to visit Ciudados de Salud!
AND -- that's not all -- there are now prices for plans on the sites, so you can really explore your options.
And kudos to the federal government for getting this one right.
Jennifer
|
Get Your Guts In Gear
Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2010 Rides. To learn more about the 2010 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 on the Move!
October 21: Association of Gastrointestinal Motility Disorders webinar
October 23: CCFA Manhattan
November 5: Thrive webinar
Come say hello! |
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.
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!
|
|
|
School Daze: School-Based Accommodations for Students with Chronic Illness
It's that time of year when we get lots of questions about the obligations schools have to accommodate students with chronic illnesses, so we thought a little reminder of the law might be useful to you and your family.
There are two laws that apply to the accommodations kids may need in school, the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. The IDEA is designed to meet the challenges of kids who need special education services. Section 504 is for kids with disabilities who don't necessarily need special education services, but who do need some help due to illness -- help because they are absent from school more than the norm, or because they have a food allergy or intolerance that needs to be accommodated, or because they have trouble taking notes or need extra time or exams -- things that don't require special education services, but that are real needs nonetheless. As an organization that focuses on chronic illness, we deal almost exclusively with section 504, and not the IDEA.
Whether a student is entitled to a section 504 plan of accommodation depends on whether she has a disability. A disability is an illness or condition that substantially impairs a major life activity. Walking, talking, seeing, hearing, writing, reading -- these are major life activities, but so are bodily functions like bowel, digestion, and the immune system. And of critical importance to students with chronic illnesses, the law says that episodic illnesses -- illnesses that come and go -- are disabling even when the student is in remission if they would be disabling when active. So, for example, if your child has ulcerative colitis that would substantially impair the major life activities of bowel and digestive function when the disease is active, she is considered disabled even when the disease is in remission.
How do you prove to the school that your child has a disability? Most of the time, a detailed letter from a doctor will be enough. Some schools want copies of medical records, and I would accommodate them to a point. Too often, schools want an unlimited release allowing them to get any records they want, or talk to the doctor whenever they want. The law does not require that you give them that much
If your child has a disability, she is entitled to a section 504 plan. How do you get a plan? Ask someone in authority at the school -- the principal, a guidance counselor, the coordinator of 504 plans for the district (who usually is the same person as is in charge of special education) -- to convene a 504 meeting. They should do so without much resistance.
At the meeting, your child's teachers should be present, as well as administration from the school -- sometimes the principal, school nurse, guidance counselor, school psychologist, 504 coordinator -- along with you and, if old enough, the student. You may bring an advocate, a friend or relative -- anybody who helps you feel more comfortable.
The purpose of the meeting will be to negotiate a plan of accommodation for the student. It can be helpful if you go into the meeting with at least a list of the things you need -- stop the clock testing if your child will need to use a restroom more than the "norm" during exams; provisions for what to do if your child is absent for more than a day (things like a note-taker or tape recording, copies of handouts and homework assignments being sent home each day, the ability of teachers to waive homework assignments if they are otherwise convinced that the student has mastered the subject matter); provisions for what to do if your child cannot participate in physical education class; and so on. For a kid with ulcerative colitis, an anytime bathroom pass is critical. For a kid with peanut allergies, it's critical that the other kids wash their hands and their desks after they eat a peanut butter and jelly sandwich. For each child, the needs will differ, so the plan will differ.
The biggest hurdle is almost always tutoring. It costs money, and schools are hurting these days, so negotiating for a tutor is tough. Every school district with which I've worked has a general policy for all kids that if they miss 10 consecutive school days due to illness, they are entitled to 1 hour per day of tutoring. I've negotiated for more -- tutoring after fewer than 10 days, and/or for more than 1 hour per school day -- but it's a very tough battle, and one that you may not win. If teachers are willing to help your child via email, and/or to spend extra time with your child after he returns to school, that should be viewed as an important supplement to tutoring that you can and should ask for.
We have written a template section 504 plan for students with inflammatory bowel disease that you can find here. Even if your child doesn't have IBD, you may benefit from seeing the types of accommodations that we often request.
The law says your child is entitled to "reasonable accommodations." What's "reasonable" under any particular circumstances differs, and always, a 504 plan is the product of negotiation. Be prepared for give and take. You may not get everything you want. Rest assured, though, that if you negotiate a plan and it turns out not to be sufficient to meet your child's needs, you can always ask for another 504 meeting to discuss how the plan is falling short to see if it can be improved.
There are a couple of arguments schools make all the time that are worth anticipating. First, the school may say that your child is doing well in school and, thus, he doesn't need a 504 plan. However, although the IDEA does require that the student need special education services, section 504 does not require that the student be doing poorly in school. It only requires that they have a disability that requires accommodation. A child who needs accommodations related to food, for example, can be doing perfectly well in school but have the risk of seriously damaging her digestion if she comes into contact with wheat -- and wheat products are used in arts and crafts class, not just in the cafeteria. So the 504 plan would address those kinds of concerns rather than academics, but it's still entirely appropriate to address these concerns in a section 504 plan.
Some schools prefer individualized health plans (IHPs) rather than 504 plans. Typically, I resist this because it's not entirely clear how an IHP can be enforced. A section 504 plan is enforced by the US Department of Education Office of Civil Rights, and you want to have recourse to them if at all possible. In some parts of the country, the Office of Civil Rights has taken the position that an IHP demonstrates a student's eligibility under section 504. I would accept an IHP if a school were willing to put in writing that the IHP is evidence that the school has found the student to be disabled for purposes of section 504. That would allow recourse to the Office of Civil Rights even if the plan is called an IHP. However, if a school won't put that in writing, I would insist on a 504 plan.
Some schools insist that a section 504 plan is not necessary when a chronic disease is in remission. As I said above, since January 1, 2009, the law says that a chronic illness that would be disabling when active is considered disabling when in remission. I do not believe that it's smart for anybody -- you or the school -- to leave school issues related to the student's illness to a time of crisis, when your child is in the hospital or at home acutely ill, when all of your attention should be spent on the medical issues. At a time like that, it is going to be very beneficial to have a plan already in place. Most schools understand this once it's explained to them in this way.
Finally, if your child goes to private school, section 504 does not apply. However, private schools are public accommodations under Title II of the Americans with Disabilities Act. Thus, a student with a disability -- a substantial impairment of a major life activity -- is entitled to reasonable accommodations in private schools, too. The issue of tutors is handled differently with private schools, but school-based accommodations are the same in private schools as in public school.
This is a very broad outline of the process -- all that we have space for here. For a slightly longer summary of school law, you can go here. If you want the whole run-down, consider buying our Know Your Rights handbook, which has a very long section on school law.
And remember that we are just a phone call or email away. We participate in 504 meetings by speakerphone all over the country, so if you need our help, feel free to get in touch.
Jennifer
|
|
National Disability Employment Awareness Month
President Obama has named October National Disability Employment Awareness Month. He said:
As Americans, we understand employment and economic security are critical to fulfilling our hopes and aspirations. We also know we are stronger when our country and economy can benefit from the skills and talents of all our citizens. No individual in our Nation should face unnecessary barriers to success, and no American with a disability should be limited in his or her desire to work. During National Disability Employment Awareness Month, we renew our focus on improving employment opportunities and career pathways that lead to good jobs and sound economic futures for people with disabilities.
For the text of the entire proclamation, go here. And celebrate yourself, why don't you?! Jennifer
|
|
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
We're still filing a lot of comments to regulations implementing health reform. Our comments to the regulations implementing the requirement that insurers cover children to age 26 are here. Our comments to the regulations implementing the requirement that the federal government create a web portal that will allow you to find and compare your insurance options are here. Our comments to the regulations implementing the requirement that insurers spend over 80% of premium dollars on healthcare-related costs are here. We also filed comments on HHS's draft strategy for management of multiple chronic conditions, which you can find here. Our comments to the regulations governing the new pre-existing condition insurance plans are here.
We contributed and sign on to comments written by a national coalition to regulations that determine which health plans will be "grandfathered" and, so, not subject to some of the reform provisions. In addition, we have drafted comments to the preventive care regulations, on which we're partnering with the Digestive Disease National Coalition. You can read them here.
Last (for now) but not least, we submitted detailed comments on the new appeals provisions, drawing from our experience filing insurance appeals on your behalf nationwide. You can read them here.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has ended, so we're focusing on SustiNet design (for more info, go here). As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
Is there something happening in your state's legislature? Shoot me an email and I'll add it to our next newsletter. 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. |
|
Jennifer C. Jaff, Esq.  Executive Director
|
|
|
