Self-Advocacy
You have the power to shape your own healthcare experience. DHAN’s self-advocacy resources are here to help you build confidence, know your rights, and speak up for what you need. With the right tools and knowledge, you can take charge of your health, make informed choices, and ensure your voice is heard every step of the way.
Take some time to view the resources listed below. Please note that each row is hyperlinked to either the originating website or the specific resource on the originating website’s page – click the resource you are interested in to be taken to an external site.
| Administration for Community Living (ACL) The Administration for Community Living (ACL) empowers older adults, people with disabilities, caregivers, and those who support them by funding services and investing in research, education, and innovation. |
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| Center for Transition to Adult Health Care for Youth with Disabilities The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition (HCT) resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care of gaps in service. |
| Youth/Young Adult Resources |
| Global Down Syndrome Foundation (GLOBAL) The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. |
| Home and Community Services Information System (HCSIS) This is a website that contains multiple links to resources for services throughout Pennsylvania. |
| Inclusive Healthcare Partnership Project Healthcare providers and patients with intellectual and developmental disabilities, working together to improve the health of everyone. |
| Healthcare Guides in Plain Language |
| PA Coalition for Oral Health is a diverse group of leaders from across the state from schools of public health, philanthropic organizations, businesses, dental organizations, health insurance firms, advocacy organizations, state agencies, and other champions with the mission to improve oral health for all Pennsylvanians by uniting stakeholders to advance advocacy, policy, education and innovative approaches. |
| Resources for Individuals with Disabilities |
| Pennsylvania Department of Health The mission of the Pennsylvania Department of Health (DOH) is to promote healthy behaviors, prevent injury and disease, and to assure the safe delivery of quality health care for all people in Pennsylvania. Our goal is to create a healthy Pennsylvania for all. |
| Health literacy is the ability to read, understand, remember and use information to make decisions about your health. |
| Pennsylvania Department of Human Services – Pennsylvania Office of Developmental Programs (ODP) The mission of the Office of Developmental Programs (ODP) is to support Pennsylvanians with intellectual disabilities and autism to achieve greater independence, choice, and opportunity and live Everyday Lives. |
| Self Advocacy Resource and Technical Assistance Center (SARTAC) Self Advocates Becoming Empowered (SABE), the oldest national self-advocacy organization in the country, was awarded a grant from the Administration for Community Living to establish the first-ever national Self Advocacy Resource and Technical Assistance Center (SARTAC). |
| A Self-Advocate’s Guide to Patient Rights |
| The Arc of the United States is the nation’s leading nonprofit advocating for and supporting people with intellectual and developmental disabilities (IDD) and their families. |
| Telehealth.HHS.gov Wondering how to get started with telehealth? Check out the information below to better understand your options for virtual health care visits. |
| Telehealth Checklist |
| Navigating Your Patient Portal (video) |
| Telehealth Accommodations |
| The Parent Education & Advocacy Leadership (PEAL) Center The mission of the PEAL Center is to educate and empower families to ensure that children, youth and young adults with disabilities and special health care needs lead rich, active lives as full members of their schools and communities. |
| Thomas Jefferson University – Jefferson for Adolescents & Beyond (FAB) Center for Complex Care provides a comfortable space for care teams to work with patients and help guide them as they continue to grow. |
| U.S. Centers for Medicare & Medicaid Services (CMS) is the federal agency that provides health coverage to more than 160 million through Medicare, Medicaid, the Children’s Health Insurance Program, and the Health Insurance Marketplace. |
| Cover to Care (C2C) Initiative |
| Getting the Care You Need – Guide for People with Disabilities |
| United Cerebral Palsy (UCP) of Central Pennsylvania empowers individuals at all stages of life to learn, grow, build relationships, and experience joy by providing services. |