By: Johanne Mayer
When you speak directly to the patient, it shows the person that they are heard and that they matter. This is important in having respectful, inclusive care. Support people should definitely have a role, but they should not replace the patient’s voice unless, of course, the patient requests it or is unable to communicate.
Continue readingBy Darian Senn-Carter, Ed.D.
For most of my life, I didn’t have the language to name the way I experienced the world. I’ve always known that I was different. I knew I felt things deeply, noticed details others missed, and often needed solitude to recharge. I learned early on to push through sensory overwhelm, intellectualize my emotions, and carefully manage how much of myself I showed to others. I got good at surviving in environments that weren’t designed with someone like me in mind.
Continue readingThis firsthand account reflects a growing national conversation about the caregiver crisis for disabled individuals in the United States. A Psychology Today article (November 2023) emphasizes the increasing societal burden of adult caregiving, highlighting the emotional and financial stress placed on caregivers. In parallel, Harvard Health (May 2024) brings attention to the often-overlooked impact on caregiver well-being, noting that nearly 75% of caregivers are over the age of 50, and more than three-quarters are women—demographics particularly vulnerable to burnout and health complications. Tackling this crisis demands systemic reform: increased compensation, professional support for caregivers, and policies that invest in home and community-based services rather than defaulting to institutional care.
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The National Center for Disability, Equity, and Intersectionality is funded by the Administration for Community Living through funding opportunity number 90NCDE0001-01-00. This website formerly included the work of the Center for Dignity in Healthcare for People with Disabilities.