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Empower Through Advocacy: Making Your Voice Heard for PKU Rights

Learn what advocacy is, why it's crucial for PKU patients, and how to advocate effectively at school, work, in your state, and nationally. Discover resources and tips for securing accommodations, navigating insurance, and influencing policy to improve the lives of those with PKU.

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Empower Through Advocacy: Making Your Voice Heard for PKU Rights

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  1. What is Advocacy and Why Should I Care?  • Advocating at School, Your Workplace, Your State and Nation Amy Oliver National PKU Alliance Advocacy Chair AnnelieseMartinec PKU Adult

  2. What is advocacy? • Advocacy means speaking and acting on behalf of yourself or others.  • Advocacy is also about educating people around you. 

  3. Why would I need to advocate?  • Advocacy is important because you and your loved one are important!  • When you have PKU or have a loved one with PKU, you are the person with the knowledge and information about what you or your loved one needs.  • You are in the best position to communicate that information to people to obtain the needed support and services. 

  4. How do I advocate?  • Advocating means taking the responsibility for telling people what you need and doing it in a straightforward way.  • You advocate by taking a proactive role and speaking up.  If you don’t tell people what you or your loved one needs, they can’t provide it. 

  5. Advocacy at School • All public schools are required to provide accommodations to children with disabilities • PKU is a disability that qualifies for accommodations • There are two primary types of school accommodations for children with PKU • diet-related accommodations • educational-related accommodations

  6. Advocacy at School - Resources • U.S. Department of Education – Protecting Students with Disabilitieshttp://www2.ed.gov/about/offices/list/ocr/504faq.html • A Parent Guide to Section 504 and the Americans with Disabilities Acthttp://www.schools.utah.gov/equity/Civil-Rights-Information/Section-504/UT504parent-guide.aspx • Alliance Action Information Sheets – Individual Education Planshttp://www.parentcenternetwork.org/assets/files/national/all56.pdf • Guidelines for Educators and Administrators for Implementing Section 504 of the Rehabilitation Act of 1973 Subpart D – Updated 2007http://www.schools.utah.gov/equity/Civil-Rights-Information/Section-504/504-Guidelines.aspx • Understanding the Differences Between the Individuals with Disabilities Education Act (IDEA) and Section 504 http://www.ldonline.org/article/6086 • U.S. Department of Education – Individuals with Disabilities Education Act http://idea.ed.gov/

  7. Advocacy at Work • All employers (with 15 or more employees) are required to provide reasonable accommodations to employees with disabilities • PKU is a disability that qualifies for reasonable accommodations • Reasonable accommodations include modifications to the job or work environment to enable the person to perform essential job functions

  8. Advocacy at Work • Be proactive. Meet with your company’s HR manager and/or call your insurance provider to introduce yourself and describe your needs as soon as possible upon being hired or changing plans. • Stay organized. Keep a folder with hard copies, and a digital copy (if possible) of all documents you need when sorting out your health insurance. • Weigh your options carefully. Depending on your state’s requirements and your individual insurance coverage, different plans may have different benefits for you. • Research and ask questions. Your HR department can be a valuable resource. Outside the workplace, the internet can be used to look up terminology, find information about health insurance companies, and reach out to your PKU communities for support.

  9. Advocacy at Work - Resources • U.S. Department of Justice – Americans with Disabilities Act http://www.ada.gov/ • U.S. Department of Labor – Employment Laws: Disability and Discrimination http://www.dol.gov/odep/pubs/fact/laws.htm • List of State Mandates Regarding Coverage: http://npkua.org/index.php/state-coverage-for-pku

  10. Advocacy in your State • Many states have laws mandating insurance coverage for medical foods and/or programs that provide assistance with medical foods for people with PKU. • It is up to us – those who know the true benefit of these laws and programs – to make sure they remain in place.

  11. Advocacy in the Nation • In order to achieve universal insurance coverage for medical foods, we all need to work together on the national level. • We are in this together! As members of the PKU community, together we can achieve meaningful advances in treatment options, research, and insurance coverage for everyone.

  12. Contacting Elected Officials • Does your phone call, email, letter or visit really make a difference? YES! • Your elected officials are there for you, their constituent. • Elected officials make decisions based on what they believe their voters want.

  13. How to Contact Elected Officials • Make a phone call! • Review the NPKUA talking points available at www.npkua.org. • Ask to speak to the Health Legislative Aide. • Tell them who you are and why you’re calling. • Ask the elected official to support your position on the issue (such as co-sponsor the Medical Foods Equity Act). • Thank them for their time. • Follow up with a letter or email.

  14. How to Contact Elected Officials • Write an email or letter! • Review the NPKUA talking points available at www.npkua.org. • Identify yourself and your connection to PKU. • Request that the elected official support your position on the issue (such as co-sponsor the Medical Foods Equity Act). • Explain why the elected official should support your position. • Thank the elected official for their consideration. • Tell them that you look forward to their response.

  15. How to Contact Elected Officials • Schedule a meeting! • Every elected official (including those in Washington, D.C.) has a local office in your state. • Call the elected official’s office and request a meeting. • Before the meeting, review the NPKUA talking points available at www.npkua.org. • Bring handouts and props (such as a can of formula). • Tell the elected official or the staff member why they should support your position (such as co-sponsor the Medical Foods Equity Act). • Ask them if they will support your issue. • Thank them for their time. • Follow up immediately with an email and then with a letter.

  16. How to Contact Elected Officials • Key points to remember when communicating with elected officials and their staff: • They want to hear from you! • Tell them your personal story – this will have the biggest and most lasting impact.

  17. Learn More • Visit www.NPKUA.org! • Click “Legislation” for Information, Tools, and Talking Points • Get involved! • You can make a difference!

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