Healthcare is a fundamental human right, however, for individuals with Intellectual and Developmental Disabilities (IDD), access to necessary medical care is often limited or unattainable. Individuals with IDD frequently face distinct challenges in obtaining healthcare from childhood well into adulthood.
Individuals with IDD face significant healthcare disparities, particularly those from minority or low-income backgrounds, who are often underserved due to limited access to quality healthcare despite representing a substantial portion of the U.S. population (estimated between 3-5%) with such needs. As we advocate for individuals with IDD, we must have a robust understanding of the barriers they face and the legislative efforts being put in place to protect and obtain better care.
One of the most common barriers faced by those with IDD is communication issues. From non-verbal communication to speech disorders, communicating health needs can become an obstacle that could result in misdiagnosis or inadequate care.
A secondary barrier is the lack of provider training in healthcare institutions. While healthcare professionals are generally highly educated, many working professionals may lack the knowledge or training to address the specific needs of individuals with IDD. This means they may be leaving their patients underserved or even ignored. In addition to inadequate training, many healthcare facilities are not equipped to accommodate individuals with mobility issues or sensory sensitivities, creating even more obstacles to receiving care.
Lastly, individuals with IDD frequently experience financial burdens due to the lack of full-time work and gaps in insurance coverage. This makes receiving accessible care difficult to obtain, leaving many with no other option but medical debt.
While individuals with IDD face numerous challenges, efforts have been made to eliminate barriers and improve access for all patients across the board. For instance, programs have been implemented to increase awareness and training for healthcare professionals, similar to our programs and training at AccessAbility. In addition to training, some healthcare centers have taken a patient-centered approach that specifically focuses on the needs of individuals with disabilities. Furthermore, since the COVID-19 pandemic, Telehealth services have expanded significantly, creating more access for individuals requesting care remotely.
Regarding legislative efforts, the HEADs UP Act of 2023, provided a pivotal moment in the fight for healthcare equity. It addressed many of the barriers faced by individuals with IDD, focusing on increasing healthcare access, improving provider training and supporting Medicaid reform. While this bill is just one piece of the puzzle, other legislative acts such as The CHAMP Act and The Disability Integration Act have also made huge leeway in obtaining equal rights for individuals with IDD.
While significant strides are being made to address the healthcare needs of those with IDD, more advocacy and direct action remain. The HEADs UP Act and other pieces of legislation mark the beginnings of a more accessible future, where all individuals regardless of ability, can live healthier, more independent lives.
Join AccessAbility in advocating for individuals with IDD. Contact your representatives today to express your support for these bills aimed at improving the lives of those with IDD.
If you or someone you know needs financial assistance related to healthcare, visit https://www.scdhhs.gov/
References:
https://www.cdc.gov/ncbddd/