Topic

Disability Rights

252 petitions

Update posted 1 day ago

Petition to Francis Collins, Alex Azar

Increase Funding For ME/CFS So We Can Find a Cure

I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive impairment, exertional intolerance, severe weakness and crippling fatigue. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to attend LSU, study abroad, enjoy SEC football and earn a degree in Journalism. Now, just a trip to the grocery store can land me in bed for days. I've lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it. Health Agencies have dismissed this disease for decades and failed to take the health of millions of sick people seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the direct result of a major lack in funding for biomedical research. In the 2016 federal budget, the NIH allocated $6 million toward studying ME/CFS. More than double that amount was spent on male-pattern baldness. Meanwhile we are suffering, some of us bed bound, with little hope and our futures up in the air. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that Francis Collins keep his promise and that the NIH drastically increase their allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are too sick to work. Families savings are drained as most insurance fails to cover the high cost of longterm management.  There are so many others like me; once living productive lives with families and promising careers. Now we're stuck with an orphaned disease and our pre-sick lives are just a memory. Some patients are so severely ill, they are confined to dark rooms, unable to tolerate sound, talking, or light. They cannot walk and some are unable to eat. They aren't "living" they are just hanging on. And it doesn't have to be this way. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our disease seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. We can also restore hope to millions world-wide that they may live again, including me and my dog Monty. Thank you.    #WeCanDoBetter Let's do it now. Read about my weird sick life at 25pillsaday.com  Visit millionsmissing.org for more information about upcoming protests.  

Mary Gelpi
50,630 supporters
Update posted 2 days ago

Petition to Don Davis

Vehicles for the Vulnerable

Like many families with disabled family members, transportation is a struggle with my son Jayden and me.  A wheelchair accessible van would alleviate our issues, but the cost is too high for a working mother with student loan debt and other expenses that come with daily life. Medicaid can help, but their policies make it nearly impossible to get what families need. They help with accessible vehicles in two ways. They will either pay to add modifications to an unmodified vehicle, or they will help with the purchase of a previously modified vehicle by paying the cost of the conversion toward the total price of the vehicle. Recently, I requested an already modified vehicle, and was approved but only for $7,175.00. A conversion costs upwards of $20,000. I learned that for unmodified vehicles, Medicaid pays for nearly 20 conversion items, but will only cover four items on a previously modified vehicle. Many conversion items on previously modified vehicles are necessary for even the most basic conversion. For example, any vehicle with a ramp needs a lowered floor, but that item isn't covered by Medicaid for previously modified vehicles, though it IS covered on unmodified vehicles. If Medicaid would cover the same conversion items on a previously modified vehicle as they do on unmodified vehicles, I would be able to purchase the vehicle and finance the remaining cost. I don't want to buy an unmodified vehicle because there is no guarantee modifications would be approved, and the conversion process itself takes eight to ten weeks. I have already been battling Medicaid for over three months. Please sign this petition to require Medicaid to cover the same conversion items on a previously modified vehicle that they cover on a modified vehicle. My child should not have to be confined to our home over a policy which can be revised to work in favor of our disabled children, rather than against them.

Rebecca Fontes
7,795 supporters
Started 3 days ago

Petition to UCSD, Dean of Graduate Studies, Dean of Social Sciences, UCSD DisAbility Couseling and Consulting

UC San Diego: Ensure Equal Access To Education for Disabled Students!

  We, the undersigned members of UCSD and the Broader San Diego community, are writing to express our concerns about UCSD’s failure to supply Krys Mendéz with timely and appropriate employment accommodations. Krys is a fifth-year Ph.D. student in Ethnic Studies who suffers from Multiple Sclerosis (MS), a progressive, neurodegenerative condition that results in damage to the brain and spinal cord. An incurable disease, MS causes a host of symptoms such as chronic pain, migraines, fatigue, numbness, tremors, as well as cognitive and mobility issues. The aggressive and unpredictable nature of Krys’s condition has prevented him from fulfilling a traditional Teaching Assistant position without undue detriments to his health—a fact that has already been documented and known to the university administration  for years. Nevertheless, just two weeks before the start of the academic year, Krys was terminated from the Writing Program position he was appointed in May by the Disability Counseling and Consulting (DCC) office, a division of the University’s Human Resources department. This termination occurred without a guaranteed and equivalent reassignment, in possible violation of Articles 3 (“Appointment Security”) and 34 (“Reasonable Accommodations”) of the UAW 2865 labor contract. To state clearly: We are appalled by the administration’s inaction in the face of a well-documented medical history. Krys first sought employment-related accommodations from his department, the Office for Students with Disabilities (OSD), and the Disability Counseling and Consulting (DCC) office in 2016, following a severe relapse. At the time, he was granted a Graduate Student Researcher (GSR) position with a self-paced workload his condition required, enabling him to advance in his program. However, when he re-initiated an accommodations request this past Spring quarter,UCSD failed to provide (for undetermined reasons) a clear and reasonable pathway for advancing in the program with medically suitable student employment. As of September 17th, the Department has  only provided Krys with a 25% Readership position. It is now mid-September, and despite the abrupt termination, Krys has yet to receive a secure, year-long appointment with equivalent compensation—much less a position that has been adapted for his functional limitations and daily needs. Without this, Krys faces the loss of income security, health insurance, and the fee remissions necessary to maintain his academic status. This is simply unacceptable. Krys is fighting for his life and managing a fundraiser to pay for his medical bills, all while having to stay on track with his doctoral research. Navigating the bureaucracy of UCSD has drained Krys of valuable time, labor, and energy needed to maintain his health and academic progress. We demand an immediate resolution to this issue from the The Division of Social Sciences, the Department of Ethnic Studies, and the Office for Students with Disabilities. It is imperative that this position provide Krys with a reasonable and flexible workload, as strongly advised by his medical providers. Moreover, an appointment letter must also be provided that outlines the exact accommodations Krys will receive in the 2018 - 2019 academic year. A large research university with as many resources as UCSD has no excuse for withdrawing support from a disabled, queer, PhD student of color in his attempts to access higher education. We demand immediate action as well as a continued commitment to making UCSD more accessible to all students with disabilities and chronic health conditions.  Undersigned UCSD Affiliates Alexia Arani, PhD candidate, Anthropology Mellissa Linton Villafranco, PhD candidate, Ethnic Studies Boke Saisi, PhD Candidate, Ethnic Studies  

UCSD Graduate Students and the Broader San Diego Community
26 supporters