In Year 1 of our Center for Dignity, coalition partners gathered more than 200 resources about healthcare inequities experienced by people with disabilities. This gap analysis was a first step in guidance/product development cycle. This was not a research study.
A four-step process was conducted to:
- Identify the current state
- Identify the ideal future state of healthcare for people with ID/DD
- Find gaps in knowledge
- Identify potential ways to close gaps
The Center for Dignity’s Gap Analysis Report will be used in conjunction with feedback from multiple stakeholders to develop anti-discrimination guidelines.
The COVID-19 Pandemic and People with Disabilities: Primary Concerns, The AUCD Network Response, and Needs for the Future
The Center for Dignity in Healthcare for People with Disabilities is comprised of five University Centers for Excellence in Developmental Disabilities (UCEDDs). These UCEDDs are part of the AUCD network. Several Center for Dignity members contributed to this national report about primary concerns and future needs of people with disabilities during the pandemic.
Prenatal Laws: Down Syndrome Information Acts
On October 8, 2008, the “Prenatally and Postnatally Diagnosed Conditions Awareness Act” was signed into law “to increase the provision of scientifically sound information and support services to patients receiving a positive diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.” Unfortunately, the federal law was never funded; therefore, several states have proposed and/or passed similar legislation. The Center for Dignity in Healthcare for People with Disabilities (CDHPD) designed this fact sheet as a resource for people to quickly find the Down syndrome information dissemination requirements in their state’s statutes and, where statutes do not exist, their state’s legislative history.
Prenatal Laws: Wrongful Birth and Wrongful Life States and Territories
A state-by-state list of wrongful birth and wrongful life legislation
A state-by-state list of organ transplant legislation intended to protect people with disabilities in the organ transplant process.
Recommendations to Improve the Patient Experience and Avoid Bias When Prenatal Screening/Testing
With the expansion of prenatal screening, healthcare professionals are increasingly called upon to meet complex patient informational needs, preserve patient autonomy in decision-making, and avoid bias against people with disabilities as a historically marginalized population.Therefore, these recommendations aim to improve the patient experience while also promoting equity toward people with disabilities in the administration of prenatal screening/testing.
