Help with Waiver and Trusts

We’re at a crossroads with our son and could really use insight from families who’ve been through this.

Right now, he is functionally eligible for the PFDS waiver, but not financially eligible. He was a saver not a spender & has worked since age 16.  He is 22. I was told in the interim, he will not forfeit his spot.  Once he gets his assets down, he would  get it, or if God forbid, we both get taken out , his assets were spent donw, he would have that safety net.

 He works only part time, OVR/WEXA placement and I am in the process of fighting that they keep his case open to help him get a full time job because the job he got was not his goal.  He could never survive on his own at current job. He is progressing though and I think he may not even need much to get there.

Here’s the dilemma:

We were told that because he has more than the ABLE contribution limit, he would need a first‑party trust  to qualify for the waiver. We looked into a first‑party pooled trust, but the fees are high, they control the $. An attorney said that creating his own first‑party special needs trust would cost around $3,000–$5000, and that it only becomes cost‑effective if you’re depositing a lot $$$$.  We’re not in that situation.

This is where we’re stuck:He may not need the waiver if he continues progressing.But if he does need the waiver later, we don’t want to make a mistake now that hurts him down the road.

Has anyone else paused waiver enrollment because the financial requirements didn’t make sense at the time? Did you regret waiting, or was it the right call? How did you handle the first‑party trust issue when the amount of money didn’t justify the legal fees?

Any experiences, advice, would be incredibly helpful.