For individuals with special needs that are fortunate to have a Special Needs Trust fund, there can be challenges to the relationship between primary family caregivers and the trustee. There is a shared common goal to make sure that the beneficiary of the Special Needs Trust is afforded the best possible quality of life throughout their lifetime, within the scope of available resources. At times, however, there may be disagreement on specific objectives to reach that goal.
Communication is essential to this relationship.
National Care Advisors has had the privilege to work with many families and Special Needs Trustees to assist with the initial discussions to make sure that everyone is on the same page regarding important information. This commonly includes the following:
An overview of the care needs and vision for quality of life for the individual with special needs.
Summary of benefits and verification that all benefits have been maximized for the benefit of the individual.
The list of immediate recurring and one time costs that the primary caregiver would like considered as expenditures from the Special Needs Trust for their loved one with special needs.
Important information about household considerations that impact the primary family caregivers for the individual with special needs.
Documentation requirements that the Trustee must follow to meet requirements to preserve third party benefits and the legal terms of the trust document.
The need for competitive cost quotes and/or receipts, in writing, with detail so that the Trustee can make sure that all expenditures are in the client’s best interests.
Professional therapy recommendations for equipment, home modifications or other large purchases to make sure that purchases are in the long term interest of the client.
Research and recommendations for alternative sources of funding if the Special Needs Trust cannot authorize a specific expenditure as requested.
Financial information regarding the sustainability of the trust over the client’s lifetime specific to the ongoing expenditure rate.
Reasonable expectations for responses to emails, phone calls, and other communication. Identification of the primary contact from the Trust and also the primary caregiver contact for the special needs individual if they are not able to manage their own affairs.
It is important to remember that the primary family caregiver can be overwhelmed with the day to day practical care needs of the special needs individual – and often sleep deprived. Attending to requests for documentation, receipts, and other details that are needed by the Trustee can be yet another demand that is perceived as a burden.
It is also important to remember that the Trustee or Trust administrator has a legal obligation to manage the trust fund consistent with the laws and rules that apply – they are just doing their job.
National Care Advisors has experience in assisting families and trustees to develop a plan of action that minimizes the burden on the primary family caregiver while still meeting the compliance needs of the Trustee. We have creative solutions to make sure that there are efficiencies in the process so that timely authorization decisions can be made by the Trustee. We can also assist to make sure that the special needs individual and their family caregivers are provided with a Special Needs Trust expenditure and third party benefits management plan that allows them to manage their household financial situation with certainty over a defined period of time.