National Make A Difference Day is coming on Saturday, October 24
Established in 1992, this “national day of doing good” promotes the idea of volunteering as a positive and heartwarming event and emphasizes the impact that volunteering can have on one’s own community. While it originated in the United States, it is now observed in about 30 other countries, and has been deemed one of the largest single days of service globally.
This year, PWSA | USA is encouraging you to join us in an important volunteer opportunity: public policy advocacy.
Effective advocacy is essential to ensuring health, safety, and enhanced quality of life for those affected by Prader-Willi syndrome (PWS). Because PWS is considered a “rare disease” and a complex genetic disorder, getting needed support and services has become rare and complex too. Each state has created their own eligibility requirements for supports and services approved through the department of disability services (or the like). Currently, PWS is only listed as a condition automatically eligible for supports and services regardless of IQ in 14 states.
While PWSA | USA leads our collective advocacy efforts at the national level, we need volunteer advocates to be our “boots on the ground” and enact change in each state by getting PWS recognized as a qualifying condition for supports and services. A recognized service eligibility diagnosis does not guarantee approval however, it does reduce the number of steps and eliminate the initial denial that individuals with PWS often receive. These services include respite care, community habilitation, supportive employment, residential services, and behavioral supports.
Advocacy is an important part of making a lasting impact for those with PWS – and you’re already doing it! You set up meetings, send emails, make calls and advocate for schools, providers, and care facilities to take action in support of PWS. As a PWS advocate, you can expand the scope of your impact by asking policymakers to support and promote policies that positively impact the lives of those with PWS. Simply put, volunteering as an advocate means using your voice as a force for change in your state.
While the PWS community might not have the resources of groups with greater numbers, change is still possible when we work together. PWSA | USA was founded on this core belief that together we are stronger – that together we can Save and Transform Lives. If you are interested in making a lasting and sustained impact this National Make A Difference Day, please contact Andrea Lucy at firstname.lastname@example.org for more information on how you can get involved in our advocacy efforts.