Challenges with Providers

One of the most significant barriers to quality care for individuals with IDD is the insufficient training health care providers receive regarding this population's unique needs. Medical schools and continuing education programs often lack comprehensive curricula that focus on the complexities and specific requirements of individuals with IDD. As a result, many providers are ill-prepared to offer appropriate and effective care.

Without adequate training, providers may struggle to communicate effectively with patients who have IDD, misinterpret symptoms, or fail to consider the nuances of their medical histories. This can lead to suboptimal treatment plans that do not address the root causes of health issues, potentially resulting in poorer health outcomes.

The process of diagnosing IDD can be fraught with difficulties. Misdiagnoses or delayed diagnoses are common, particularly among Black, Indigenous, and People of Color (BIPOC).¹ Early and accurate diagnosis is essential for effective intervention, yet many individuals with IDD do not receive timely evaluations, leading to gaps in care and support.

Tools like the Autism Speaks Autism Treatment Network and the Centers for Disease Control and Prevention’s (CDC) Learn the Signs. Act Early. aim to improve early diagnosis and intervention for individuals with IDD.

Among individuals with IDD, diagnostic overshadowing is also a problem. Diagnostic overshadowing is the misattribution of symptoms of illness to an individual’s IDD, leading to inappropriate, or no, treatment for illness.

There are significant shortages of Direct Support Professionals (DSPs), who provide daily care to support people with IDD to access their communities.² A 2024 survey found that 95% of community providers experienced moderate to severe staffing shortages in the past year. This shortage can be attributed to low wages, high turnover rates, and the demanding nature of the work, which often requires DSPs to manage complex health needs and provide around-the-clock care. The lack of sufficient DSPs not only affects the quality of care but also places immense stress on families and existing caregivers, who may struggle to fill the gaps.

Properly documenting and billing for the accommodations required by patients with IDD can be complicated and time consuming for providers. Often, provider lack to tracking and resources to code inclusive services accurately. Even when they do code for inclusive services, the increase in reimbursement is so minimal that it is not worth it.