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Showing results for tags 'advocacy'.
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Celiac.com 07/23/2024 - A mother from Utah County is advocating for changes after her teenage daughter, who has type one diabetes and celiac disease, experienced what the family claims was discrimination at a Provo water park. The mother alleges that her daughter was denied entry with necessary dietary food, which led to her becoming ill. The water park, however, maintains that they made efforts to accommodate the teen's needs. Incident at Splash Summit Water Park Janae Cox prepared a small cooler filled with diet-specific food and snacks for her daughter Kolbie's visit to Splash Summit Water Park. Despite the careful preparation, most of the food was not permitted inside due to the park’s stringent policy. Janae believes that this policy is not only detrimental but also potentially violates the Americans with Disabilities Act (ADA). According to Janae, Kolbie did not have sufficient food to maintain her health throughout the day, resulting in her feeling unwell. Janae and her husband, Kevin, emphasize that ensuring Kolbie has appropriate food is a continual challenge due to her medical conditions. Although the park’s regulations allow some food, they impose significant limitations. Park Policy and Family's Concerns A representative from Splash Summit explained that visitors could leave and re-enter the park with additional food but could only bring a limited amount at any one time. The Cox family argues that this arrangement is neither practical nor safe for Kolbie. Given that Kolbie is 15 and does not drive, and her parents were dropping her off, leaving the park to get more food was not a feasible option. Kevin highlighted the potential danger, noting that if Kolbie's blood sugar levels dropped while she was alone, she could have a seizure before reaching her car for more food. ADA Compliance and Legal Perspective Nate Crippes, a supervising public affairs attorney with the Disability Law Center, states that businesses in Utah are obligated to modify policies to meet ADA requirements. Crippes argues that policies should be individualized to cater to different disabilities. Splash Summit claimed they offered to store Kolbie's cooler with her food and medical supplies in the front office, but the Cox family feels this solution is still discriminatory. Kevin pointed out that this arrangement forces individuals with dietary restrictions to eat separately from other park-goers, which he believes is unfair. Seeking Resolution The Cox family asserts that their primary goal is to prevent other families from facing similar issues. Kolbie expressed her desire for a policy change, supported by her mother, who is willing to take necessary actions to achieve this. Despite having her medical supplies when she eventually entered the park, the Cox family mentioned that they had not encountered problems with the cooler on previous visits. Water Park’s Response and Future Considerations Splash Summit stated that they offer gluten-free food options within the park. When questioned about the possibility of changing their policy, the park spokesman indicated that it could be considered. The Cox family is still awaiting further discussions with the park regarding their experience. Conclusion The article highlights the challenges faced by individuals with celiac disease and diabetes in public spaces and the importance of accommodating their needs. For those with celiac disease, ensuring access to safe food options is crucial to avoid health complications. The Cox family’s story underscores the necessity for businesses to implement flexible, inclusive policies that respect and address the unique requirements of all patrons. Their advocacy serves as a reminder of the ongoing need for awareness and adjustments to ensure equal access and treatment for people with disabilities. Read more at: kmyu.tv
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Celiac.com 07/29/2023 - For many years Gluten Intolerance Group™ (GIG) has advocated on behalf of persons with celiac disease. Advocacy can include the increase of celiac disease awareness, the improvement of knowledge and educational materials distributed by any number of organizations, sitting on boards and committees of coalitions on behalf of persons with celiac disease or dermatitis herpetiformis, and fighting to pass legislation that will improve the quality of life for persons with gluten intolerance. Advocacy is important work. It takes skill and the desire to work as a team. At times the work can also be slow and frustrating. According to Kay Holcombe’s presentation at the 2002 GIG™ Annual Education Conference in Winston-Salem, North Carolina, anyone can learn to be an effective advocate. Ms. Holcombe is a lobbyist with Policy Directions, Inc. in Washington DC. She has years of health care and label reform experience. At the conference Ms. Holcombe offered the following advice for how to become an effective advocate: Keep your agenda short and to the point – When you advocate you should have no more than three agenda items or points to cover. Know what they are, what you want, and how you are going to get your message across. When you try to make too many points during a presentation it can lose its power and influence. Be knowledgeable about the issue – It is important to thoroughly understand an issue before you discuss it with your congressperson. If you do not understand the issue well enough you cannot answer questions about it or understand how it will impact people. The last thing you want to do is to lose your congressperson’s respect because do not know what you are talking about or are confused. Be honest – The rule here is do not try to mislead them. Their staff will do extensive research and will know if you are being less than honest. Have a consistent message – Nothing can hurt your cause more than to have several people who advocate it but do not say the same thing about it. Everyone must use the same words in the same manner. The message should be short, simple and consistent. Even slight deviations in your message could convey to representatives that you are not united. Everyone must ‘Speak with One Voice.’ Ms. Holcombe also advised that success in advocacy work is often measured in small victories, and not necessarily in an all-out victory. A good example of this is the ingredient label reform bill currently being considered by congress. The original bill required that seven major allergens (including wheat) be clearly labeled on all food products. Through an extensive letter writing campaign, partnerships with other influential groups and expert testimony, additional language was added to the bill so that it also included "other grains containing gluten (rye, barley, oats and triticale)." This was a great victory for us— even if the bill does not ultimately pass. We got them to understand that gluten in food is an important issue for many people. Other celiac organizations have also joined GIG™ to do advocacy work. Currently most of our advocacy work is national in scope, but we also work on state issues. To "speak with one voice" in order to be effective advocates is an important lesson that provides celiac organizations in the U.S. with an opportunity to show unity for a common cause. While not always an easy task, it is an important goal that will benefit all persons with gluten intolerance. To learn more about the advocacy efforts of GIG™ contact us at gluten.net. We are currently working on national issues that could affect people with gluten intolerance in the following areas: quality of life, extra cost of food reimbursement, product labeling, research, professional and public awareness and education, and restaurant regulations.
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Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS. Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America (CSA/USA) were formally represented, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important in efforts to double the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases. The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people we had the opportunity to tell our stories and explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited. DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent. Patient advocacy work is important, however, you should also know that nonprofit groups (501c3) are severely limited by law in the amount of funding that can go toward advocacy work. In this regard we need your help, please: Write to your Congress people about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays). Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy work throughout the year. Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease. We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April. Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.
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