More than 65 million people (29% of the U.S. population, in 2009) provided care for a family member who were living with a physical, mental, or intellectual disability or chronic illness. 1 Now, look at today’s indicator – sisters and brothers are being designated to care for their siblings, along with working full time, caring for their own children, being a spouse, and living their own life. Many feel financially unprepared to responsibly carry out their role as caregiver and wish they knew more about how to find help in dealing with their sibling’s care and finances.
A 2013 Mass Mutual Financial Group survey showed that 47% of brothers and sisters use a financial trustee to manage their sibling’s finances. 2 Families establish special needs trusts, for their loved one, with the money received from an inheritance, lawsuit settlements, savings, and gifts. Not only does the trustee provide financial management, the trustee may assist with the beneficiary’s (the person living with a disability) personal needs so he or she can live a good quality of life.
Some trustees will work on an individual level with the beneficiary and siblings to assist with life issues such as:
- health – treatments, therapies, and physician appointments
- housing – group homes, assisted living facilities, nursing homes and private residences
- tax issues
- entertainment and enjoyment of life
- end-of-life planning
The greatest expressed concern is how the beneficiary will be taken care of, if something happens to the sibling who is currently providing the care. One sibling recently expressed this concern, “I have a burden weighing on my mind of my brother and his future. It is a responsibility I now have and cannot escape.”
Trustees can work with the siblings to ease their burden related to life decisions. One of the most common actions a trustee does is to work with the siblings in identifying alternative living arrangements, should the caregiving situation change. The trustee can also assist the siblings in the development of a life care plan. This plan provides the trustee with directives on how the siblings would like the beneficiary cared for and what special items or services they would like the beneficiary to have.
After a special needs trust is established, siblings request many items or services for the beneficiary that they have been putting off obtaining or doing. A common request, to the trustee, is to purchase items for the home or facility where the beneficiary resides. The sibling will work with the trustee to provide information on what is requested, such as itemized quotes, photos of the requested items, photos of current living quarters and related warranties.
Trustees receive some interesting requests for payment from the beneficiary’s trust. One of the first items a sibling may request is a large, flat-screen TV. This request must be reviewed by the trustee staff before it can be approved for purchase. Consideration is made regarding where the TV will be placed, does the beneficiary currently have a TV, is a large TV permitted in a facility room, and the balance in the trust account.
Hearing aids, glasses, and dentures top the list of requests. When one of these items is requested the trustee will work with the sibling, and the beneficiary, to schedule an exam then assist with the purchase of the item. Nonmedical care is often requested. Not only does this service provide the needed care for the beneficiary, it gives the sibling – who is caring for the beneficiary – a much needed break or respite. Nonmedical home health provides basic services such as companionship, as well as other services such as meal preparation, assistance with bathing, toileting and dressing, cooking, washing clothes, cleaning, and transportation.
A trustee is a financial professional who receives specialized and advanced training related to special needs trusts. The trustee and staff have expertise in the emotional dynamics of working with people of any age who are living with a physical, mental, or intellectual disability. The trustee will use a coordinated approach, working with a team of professionals, such as bankers, accountants, case managers, social workers, and financial planners to ensure the beneficiary lives a good quality of life and the siblings will have peace of mind knowing their loved one is receiving the best of care.
Darlene A. Kemp, MPH, MBA-HCM
- Caregiving in the US; National Alliance for Caregiving in Collaboration with AARP, November 2009.
2013 Massachusetts Mutual Life Insurance Company. MA 01111-001