7 minute read
Speaking Up for Yourself and Others
Beth Gore, PhD, Oley Executive Director
This article is based in large part on "Advocacy 101: From the Doctor's Office to Capitol Hill," a webinar by Amelia Williams, offered by the Oley Foundation March 26, 2024. A recording of this webinar is available on the Oley YouTube channel.
Advocacy can empower individuals to create positive change in healthcare, education, employment, and community inclusion—both for themselves and for others. This article delves into some of the essentials of effective advocacy and offers thoughts to help you embark on your own journey across multiple types of advocacy.
Understanding Effective Advocacy
To be an effective advocate, it’s important to know where to start.
First is knowledge. What are you asking for? What are its implications, potential objections, and available alternatives? What resources are required?
Assertiveness is also crucial. Are you willing to voice your needs confidently and stand up for yourself?
Do you have the necessary resources and support to remain composed, focused, and self-assured? At the same time, are you willing to listen to other perspectives and points of view?
Another key feature is persistence. Can you continue pushing forward despite resistance? Do you have a plan in place for when you encounter obstacles? Have you assessed how vital your request is and what resources you are willing to commit to it?
Finally, it’s important to maintain respect throughout your advocacy efforts. Are you able to uphold your values, even when faced with challenges? Have you learned how to respectfully disagree while asserting your position?
Throughout this article, we will focus on a few specific areas of advocacy. With each section, we will touch on these three elements:
know your rights
understand the resources available
take decisive action
Navigating Healthcare Advocacy
In its simplest form, this is where patients actively engage in their care or the care of a loved one, collaborate in decision-making, and advocate for their needs and preferences. Partnering with healthcare providers is part of navigating this process. This partnership fosters personalized, patient-centered healthcare, improving outcomes and enhancing the patient experience.
Every individual has the right to be treated with respect and dignity, regardless of their disability or medical condition. You also have the right to privacy and confidentiality regarding your medical information; to seek a second opinion; and to have access to your medical records. You have the right and the autonomy to make decisions about your healthcare.
Sometimes it’s important to consider utilizing available resources such as patient advocates, insurance case managers, and Americans with Disability Act (ADA) advocacy organizations.
Taking action includes bringing supportive individuals to medical appointments, being open and honest with healthcare providers, preparing questions and concerns beforehand, documenting interactions, and seeking second opinions when necessary.
Advocating in Education & Employment
Whether your child is just starting preschool or you are finishing a graduate degree—and whether you are starting your first job or finishing your career— advocacy plays an important role.
To advocate in an education setting, familiarize yourself with legal protections like the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. Collaborate with organizations like the American Association of People with Disabilities (AAPD) and engage with your or your child ’s school through open communication and attendance at meetings, such as Individualized Education Program (IEP) meetings. Pursue mediation or complaints if needed.
Similarly, to advocate in an employment setting, you want to know and understand your rights under the Americans with Disabilities Act (ADA) and leverage resources such as vocational rehabilitation programs and job accommodation networks. Advocate for accommodations, maintain detailed records, and address discrimination if encountered.
Remember, advocacy in education and employment is not about searching for issues in every aspect of school or work life, but instead ensuring a level playing field by understanding your rights, accessing relevant resources, advocating for accommodations when needed, and addressing discrimination if encountered.
Recreation Advocacy
It's easy to overlook the importance of recreation and other aspects of life when managing chronic illness and/or therapies. However, incorporating recreation and fun into your routines is vital. It promotes overall well-being, reduces stress, improves mood, and fosters social connections, all of which contribute to a balanced and fulfilling life despite health challenges.
Did you know there are rights associated with recreation? Some rights and protections provided by the Rehabilitation Act of 1973 and the ADA are regarding access to community activities and recreation for individuals with disabilities.
Identify activities you enjoy, explore community resources, and advocate for accommodations that promote inclusion and belonging for individuals with disabilities. Consider connecting with adaptive sports organizations, patient support groups, and hospitals ’ recreation therapy programs to find inclusive recreational opportunities.
Community-Level Advocacy
Beyond individual advocacy, there are numerous avenues for community-level impact. Consider offering personal support to individuals with disabilities, sharing your story to promote understanding, or joining formal advocacy groups or school-based organizations. Maybe you’re interested in getting more involved with the Oley Foundation or other patient organizations, participating in legislative advocacy efforts, engaging in direct nonprofit work, and contributing to regulatory patient advisory programs.
Adding your voice to community-level advocacy efforts is valuable as it amplifies the collective impact and drives meaningful change. By sharing your experiences, expertise, and perspectives, you could contribute to shaping policies, programs, and services that benefit individuals with disabilities and chronic illnesses. Your involvement in advocacy groups, legislative efforts, nonprofit work, and regulatory programs strengthens advocacy networks, promotes awareness, and empowers communities to advocate for equitable access, inclusion, and rights for all.
Summary
Advocacy can be a potent force for positive change. By understanding your rights, utilizing available resources, and taking meaningful action, you can become a formidable advocate for yourself and others. Remember, every voice matters, and your advocacy journey can make a significant difference in the lives of many.
We want to hear from you! Tell us ways you have used your voice for positive change. Email us at info@oley.org.
FROM THE OLEY MAILBOX: A Mother’s Journey Through Advocacy & Access
I am the mother of a teenage son. I live in a state where the day before the child turns 12 until he is 18, parents are not allowed to have access to the child's medical information. This makes sense in some situations, such as teenage pregnancy, mental health concerns, etc. No problem, he can have his own patient portal. But not so fast. This hospital system disallows people from having a portal until they are 18. This means NO ONE can see this information from 12 to 18?
After a lot of researching, reading, learning, I contacted national organizations, experts, and even an attorney to see if I was understanding the law. Sure enough, there's a law--the Cures Act--that prohibits interfering with or charging for electronic health information. It says, "without cost and without delay." So even if I as a parent couldn't have access, my SON has the right to it.
I can’t tell you how many times I wanted to give up. It was frustrating, confusing and exhausting, and it took a lot of time. It took countless phone calls and emails and over two and a half years. But ultimately, I was able to work within our hospital system and now our family and hundreds of other families have access.
Recently, my son was admitted to the hospital. And because we had access to his portal, we were able to instantly see a critical error. As a result, I was able to advocate for him to get the necessary changes before it caused further issues. Without insight to this, I shudder to think how that story could have gone.
All that to say, advocacy is sometimes long and hard work. Ultimately, it’s worth it most of the time. Thanks to Oley for helping me understand the value of personal and national advocacy!
—Oley Member
Advocacy 101: From the Doctor's Office to Capitol Hill
Learn more about all the types of advocacy discussed above—including many great tips and resources in each of these areas—by watching Amelia Williams’s presentation “Advocacy 101: From the Doctor’s Office to Capitol Hill,” offered as a webinar by the Oley Foundation in March and available on the Oley Foundation YouTube channel. Amelia does a tremendous job describing her own journey into advocacy, while offering ideas and resources that will help all of us as we advocate for ourselves and others.
