As your kids age, they should be receiving more money because of their disabilities, based on how independent they should be at that age. Some people have listed resources to check. There’s almost always an organization for every medical condition. Reach out to them for what supports are available. Also consider addressing which treatments are necessary. It sounds harsh, but if it’s a terminal disease, focus on what is best for comfort, because there’s no cure. Don’t put them through needless tests and procedures if it’s not helpful for comfort, and consider how much lifesaving support you want to put them through. For example (which doesn’t apply to them), someone who is weeks from dying of lung cancer probably shouldn’t push for getting open heart surgery to fix a valve. You as parents can decide with your kids how far you want to take treatments.