Recursos en Español
Para encontrar recursos de ASERT que han sido traducidos al español, haga clic aquí.
To find ASERT resources that have been translated into Spanish, click here.
Autism Advocacy Organizations
Advocacy is not only about raising awareness – it is about making sure the voices of people on the spectrum, and those who support them, are heard. Real change starts when we speak up and help shape the systems that affect our everyday lives.
One important place where your voice truly matters is in healthcare. It is important to know your rights and use them, especially when it comes to your personal medical information.
No matter who you are, you have the right to understand how your health information is collected, shared, and protected. And those rights are powerful tools.
To help you take charge, we have gathered some trusted resources created by leading organizations. These resources are designed to help you better understand your healthcare rights and learn how to keep your personal information safe and secure.
Your voice matters. And knowing your rights is one way to make it count.
Navigating the Healthcare System
AASPIRE Healthcare Toolkit
The AASPIRE Healthcare Toolkit is a resource that aims to improve healthcare experiences for autistic adults. Focusing on care with a primary doctor, the toolkit offers practical information, worksheets, and the ability to create a personalized healthcare accommodations report to help make healthcare visits smoother—before, during, and after appointments. This toolkit has a “Patients & Supporters” section which includes information on understanding your rights as a patient, including privacy for medical information: https://researchautism.org/healthcaretoolkit
Your Health Information Rights
This brief contains information to help people make safe and informed decisions about their personal health information https://ahimafoundation.ahima.org/understanding-the-issues/your-health-information-rights/
What Information Can Be Shared Without Violating HIPAA?
This article talks about the specific ways that someone’s information can be shared without it being considered a HIPAA violation: https://www.hipaaguide.net/what-information-can-be-shared-without-violating-hipaa/
HIPAA and Mental Health: Understanding Privacy Rights and Disclosure
This article is for caregivers and goes over the basics of HIPAA for people with mental health diagnoses: https://www.caregiveraction.org/hipaa-mental-health-faq-guide/
National Advocacy Organizations
Across the country, organizations are working to protect the healthcare rights of people with disabilities. These national resources offer tools, guides, and advocacy tips that can help you take action and stay informed no matter where you live.
Association of University Centers on Disabilities
Issues & Resources: https://www.aucd.org/issues-and-resources
Autistic Self Advocacy Network (ASAN)
Autism Society of America
Action Center: https://www.votervoice.net/AutismSociety/home
Website: https://autismsociety.org/
Disability Belongs
Action Center: https://www.respectability.org/act/
Disability Rights Education & Defense Fund
Medicaid Advocacy: https://dredf.org/hands-off-our-medicaid/
Institute for Exceptional Care (IEC)
IDD Advocate Corps: https://www.ie-care.org/idd-advocate-corps/
Authentic Community Engagement: https://www.ie-care.org/engagement
National Association of Councils on Developmental Disabilities
Advocates: https://nacdd.org/advocates/
National Disability Rights Network
Homepage: https://www.ndrn.org/
Take Action: https://www.ndrn.org/take-action/
TASH
Advocacy Tools & Resources: https://tash.org/advocacy-tools-resources/
The Arc of the United States
Advocacy: https://thearc.org/
Statewide Advocacy Organizations
In Pennsylvania, local laws and programs may offer additional protections and opportunities for advocacy. These resources are tailored to support individuals and families navigating healthcare systems and services right here in our state.
Disability Rights Pennsylvania
PAR - Pennsylvania Advocacy & Resources
Pennsylvania Developmental Disabilities Council (PADD)
Advocacy Agenda: https://www.paddc.org/about/advocacy-agenda/
Pennsylvania Health Law Project
Medicaid Defense Information: https://www.phlp.org/en/medicaid-defense
Pennsylvania Mental Health Consumers' Association (PMHCA)
Advocacy: https://pmhca.wildapricot.org/Advocate
Pennsylvania Statewide Independent Living Council
Pennsylvania Youth Leadership Network
Rehabilitation & Community Providers Association - RCPA
Home: https://paproviders.org/
Government Affairs: https://paproviders.org/category/govt-affairs/
Self Advocates United as 1 (SAU1)
Speaking for Ourselves
The Arc of Pennsylvania
Find Local Chapter: https://thearcpa.org/who-we-are/local-chapters
The PEAL Center
The Provider Alliance (TPA)
Home: https://provideralliance.org/
Advocacy Tool Kit: https://os.provideralliance.org/act/
Vision for Equality
Family Advocacy & Resource Portal: https://www.visionforequality.org/
Information
Autism Science Foundation
Organization for Autism Research (OAR)
This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.