u/kegman83

My mom has bulbar ALS. She lost her ability to swallow and speak early on, but thankfully retained the ability to use her hands (albeit she's very limited). Because she can still somewhat use her hands, our private insurance refused to cover the tablet and eye tracking software for her to communicate on the day she loses her ability to talk with her hands.

We went around in circles with our insurance for months. Denial after denial for the eye tracking hardware and tablet (among other things). One day our caregiver overheard us and asked if we ever looked into a private social worker. I did not know those even existed.

The fees were fairly reasonable and they went to work pestering our insurance on our behalf. They also submitted applications for grants we didnt know existed or even qualified for. Just hiring them to stay on hold with our insurance and peppering them with legal questions was worth the fees alone.

If you cant afford it, dont be afraid to contact a local government social worker or adult services support. In the US there is a huge stigma about social workers and using them. Their entire job is to connect people in need to resources governments and private institutions give to those that need them. Use them. You pay for their services anyways.