Being told to reduce services

Bottom line up front:

What therapies/treatments/tools would you have wanted to receive as a kid to help deal with symptoms. Kiddo has spastic hemiplegic CP.

Backstory

My kiddo has been in OT and PT since we finally got his diagnosis at 3. Over the past 6 years he's made great progress. He is mostly self sufficient for a 9 year old. Still a few things he needs help with because he can't keep his arm extended enough to properly scrub his hair in the shower but mostly able to do things with an adapted grip or aid.

His care team have told me from the beginning that "by the time he finishes growing you won't even be able to tell he has CP" and I naively thought this meant with all his therapies he would build the neural pathways he needed to let his muscles get the correct signals etc. The focus is primarily on his leg, really working to get his foot down to a neutral position. They were working on his hands to but the OT we were assigned is sort of, unhelpful in a very kind way.

As he has progressed they have continued to reduce the number of times he goes in which was fine with me at first because we can do the PT exercises at home and the OT assigned to him spent so much time doing little diy splints that he refuses to use that we weren't even accomplishing anything. This facility is also limited on what specific skills they can work on. We are now down to an every other month check-in for his leg brace and measurements.

I happened to be researching the issues he has with his kidney/bladder and found this group. In looking through everything I am concerned that they might not understand how he's likely to progress as he ages and I am accidentally setting him up for future pain and challenges.

I was already looking into special OT for his toileting issues and want to get better help with his hands but I'm concerned that there is more I just don't know to be concerned about.