1. Amy Oliver National PKU Alliance Advocacy Chair Anneliese Martinec PKU Adult

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

3.  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.  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.  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.  U.S. Department of Education – Protecting Students with Disabilitieshttp://www2.ed.gov/about/offices/list/ocr/504faq.htmlhttp://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.aspxhttp://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.pdfhttp://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.aspxhttp://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 http://www.ldonline.org/article/6086  U.S. Department of Education – Individuals with Disabilities Education Act http://idea.ed.gov/ http://idea.ed.gov/ Advocacy at School - Resources

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

10.  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.  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.  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.  Make a phone call! ◦ Review the NPKUA talking points available at www.npkua.org. 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.  Write an email or letter! ◦ Review the NPKUA talking points available at www.npkua.org. 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.  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.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.  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.  Visit www.NPKUA.org!www.NPKUA.org  Click “Legislation” for Information, Tools, and Talking Points  Get involved!  You can make a difference!