Individuals with intellectual and/or developmental disabilities (I/DD) often have several challenges to overcome, and health equity remains an issue for many. Continual discrimination is a hot-button topic, and the National Council on Disability (NCD) is at the forefront to bring about change. In early 2022, the Council released a framework designed for policymakers to help put an end to ongoing medical barriers impacting people with I/DD.
Recognized as the largest overlooked group in the US regarding healthcare discrimination, individuals with I/DD have faced disparities while receiving medical treatment, learning about their bodies, and while earning a living wage. Many cannot overpower the perceptions and stigma of their disabilities, especially when faced with the healthcare roadblocks that have not been eradicated to date. This underserved population group continues to struggle against bias, especially during the pandemic.
What is the Health Equity Framework?
The NCD put together a team of stakeholders and experts in policy development and the medical field who are dedicated to understanding, researching, and improving government policies to address healthcare inconsistencies for people with I/DD.
Essentially a guideline, the NCD’s Health Equity Framework works as a blueprint for policymakers in all areas and levels of government, designed to repair and alter the current systemic discrimination in the US healthcare system. The framework outlines the disparities within the system and includes numerous references to the existing inequities that demand immediate and unequivocal attention.
Discrimination is Pervasive
Individuals with I/DD face pervasive and consistent discrimination within the healthcare system. During the pandemic, an unprecedented number of fatalities of those with I/DD who contracted COVID-19 was a significant wake-up call that spurred the creation of the Health Equity Framework.
Within the framework, there are four primary features that branch out into a series of additional components. The root elements are:
- Special designation for individuals with I/DD as a ‘Special Medically Underserved Population.’
- Extensive and specific clinical training in I/DD for medical providers.
- Diagnostic equipment to be made more accessible to those with I/DD.
- Upgraded and improved capturing of medical data.
The Medical Evolution for Those With I/DD
While barriers have lessened in certain areas, many with I/DD continue to struggle with misconceptions in society and inequality in medical treatment. Within the healthcare community, this stereotype is often fueled by a lack of understanding and education, despite the US Depart of Health and Human Services’ and Office of Civil Rights’ current guidelines citing that providers must not discriminate by holding back necessary healthcare from individuals with I/DD.
With more than sixty million people living with disabilities across the country, the time for action against healthcare inequity is long overdue. The NCD is translating that sense of urgency by laying out a roadmap for change through its Health Equity Framework initiative. The World Health Organization is also working to change global attitudes by promoting inclusion within society, regardless of a person’s disability or impairment.
For more information on quality care and inclusion for individuals with I/DD, please contact our team at the Independent Living Association.