Medicaid

The disability rights movement says people with disabilities should live in the community, not in institutions. Texas funds five hours of care a day. I need 24. I’m sitting in the gap.

The care system measures whether you can walk, eat, and speak. It doesn’t measure the kitchen you can’t use, the routine you can’t control, or the relief of finally stopping the impossible job of being your own full-time caregiver while disabled.

I entered nursing home care because I needed to get out of an unsafe situation quickly. But the crisis also forced me to face a bigger truth: I may need full-time long-term care, even if a nursing home isn’t the right setting forever.