If you are the main person managing the care of the beneficiary of a special needs trust, have you planned yet for a time when you may no longer be able to perform this crucial role? It is important to plan appropriately to ensure that the beneficiary will have an advocate and someone closely managing care for his or her entire lifetime. You don’t want care disrupted in the event that the family member is no longer able to provide for or manage care.
This requires conversations with other close family members of the beneficiary to determine if any of those individuals would be willing and able to step in when the primary caregiver is unable to continue on with his or her duties. But it is an unfortunate reality that siblings or other close relatives often have their own family responsibilities and lack the time to commit to acting as care manager for their loved one while juggling their own responsibilities. This can leave the beneficiary seemingly out of options when the primary caregiver passes away or is no longer able to provide care.
When there is no one in the family available to assume the essential care management role, there are other alternatives to ensure that the beneficiary has a care manager. Professional organizations across the country provide care management services and could assume this role for the beneficiary. But in order for these organizations to adequately serve the beneficiary’s needs and manage their care, they must receive proper guidance.
One way to provide such guidance is with a Memorandum of Intent, which can accompany a special needs trust. This document lays out the current wants, needs, likes, dislikes, and preferred living situation of the beneficiary and gives future caregivers and care managers – whether family or professionals — crucial direction on caring for a beneficiary. It is important that this information be memorialized so that successor care managers and caregivers are not left guessing on how best to meet a beneficiary’s needs, especially in situations where a beneficiary is unable to communicate for themselves.
In short, the trustee of a special needs trust should work with the beneficiary’s caregiver and care manager to ensure that not only are the beneficiary’s needs currently being met, but that the proper steps are taken to ensure that those needs will be met in the future.