I'm reaching out to bring attention to a critical issue facing many patients like myself in Utah who rely on home healthcare services. As an autistic adult with Severe Myalgic Encephalomyelitis and a host of complex medical conditions, I've consistently faced challenges with Intermountain Home Healthcare and Hospice. The issue is not isolated to a misunderstanding or a single interaction it’s a pattern of disability accommodations not being consistently implemented or properly understood. Despite having my accommodations well-documented and discussed, they have at times been mischaracterized as behavioral problems or noncompliance.

Severe Myalgic Encephalomyelitis is a debilitating neuroimmune disease in which even small amounts of physical, cognitive, or emotional exertion can significantly worsen symptoms. For patients with severe disease, documented disability accommodations are not conveniences they are essential to safely accessing healthcare.

My accommodations, which were created in consultation with my healthcare providers, are necessary for me to safely participate in my medical care. These include tools like AAC devices, communication cards, and sensory tools such as eye masks and earplugs. They ensure my safety, particularly when my conditions make verbal communication physically taxing. Despite their importance, these accommodations have not always been consistently respected during care, contributing to communication breakdowns and concerns about continuity of care.

For patients with complex disabilities, accommodations are not optional they are essential for safe participation in healthcare. When they are misunderstood or inconsistently applied, it can create serious barriers to care and put medically vulnerable patients at risk, particularly those who rely on skilled services such as central line care and tube feeding.

This issue is not limited to one provider or one experience. It reflects a broader systemic problem in how disability accommodations are understood, documented, and implemented in healthcare settings.

This is why I am calling for change. We need to mandate that healthcare providers consistently honor documented disability accommodations, ensure proper training on disability access needs, and establish accountability when accommodations are not implemented as required.

I urge you to sign this petition to help protect disabled and medically vulnerable patients and to ensure that documented disability accommodations are consistently respected in healthcare settings.

No patient should have to choose between receiving essential healthcare and using the accommodations they need to safely access it.