When we create an estate plan for a client who has a child with special needs, whether it be a minor need or a significant disability, we always integrate a "parental substitute system," where we designate people or organizations to perform all of the functions that parents are now performing for their special needs loved one. These would include guardians, who would have legal decision making authority for the child; trustees, who would invest, administer and distribute the funds for the child; an advocate, if necessary, who can speak on behalf of the child for needed medical, social, educational and governmental benefits, and care managers, who would ensure that the child is well cared for and would report back to the guardians and trustees. Not every family needs all of these actors, but we always assess each case and decide what actors are going to be needed so that we can include them in the planning.
One issue we always face, however, is that the people we would choose to fill these roles today will not always be around to perform their jobs – they might get old, they might die, they might move away. So, we set up ways inside the planning to choose successors for each of these roles, which gives our planning good long-term viability.
The only way to ensure that any new caregivers, trustees, advocates or guardians can do their job is to give them a Letter of Instruction, that the parents can complete and hold in their planning documents as a form of "instruction manual" for the "parental substitute system." Attached you will find a good starting point for creating this "instruction manual," which will then grow over time as the parents, and then the successor caregivers, learn more about the special needs beneficiary, and write down what they have learned.
I would strongly encourage you to print out the attached Letter of Instruction and use it in your planning, if you have not already done so, and then to pass it on to any friends, or any support groups or organizations you may belong to, so that it is distributed as widely as possible. Please feel free to pass it on as widely as you wish, you have my permission to do so.