Being a parent, or a primary caregiver is a difficult yet rewarding job. When you are a parent or grandparent of a child with special needs, your job is wonderful and frightening, at the same time. Brooke Hampton sums up parenthood nicely in her quote, “I’m busy; but not in the way most people accept. I’m busy calming my fear and finding my courage. I’m busy listening to my kids. I’m busy getting in touch with what is real. I’m busy growing things and connecting with the natural world. I’m busy questioning my answers. I’m busy being present in my life.” — Brooke Hampton, Barefoot Five
A child can be diagnosed with “special needs” if he or she has a physical, mental, or intellectual disability. A special needs child is one who has been determined to require special attention and specific necessities that other children do not. The state may declare this status for the purpose of offering benefits and assistance for the child’s well-being and growth.
Many parents and grandparents have or care for a child with special needs. They want the child to live a good quality of life. They fear what will happen to the child if something happens to them. Other times, the fear comes from not knowing who will care for the child like they do. There is an answer. Special needs trusts can provide the financial means for the special needs child to be cared for in the manner he/she is accustomed.
How a Special Needs Trusts Can Help Families
Ronald and Miriam are thankful they established a third-party supplemental needs trust for their grandchild, Jerome, who is living with Down’s syndrome. Jerome’s parents, the adult children of Ronald and Miriam, are incarcerated for making and selling the drug meth.
Ronald and Miriam are both 78 years old. They care for Jerome, providing all of his needs and helping him to live a good quality of life. The trust was established so money could be set aside for Jerome’s use, after they are gone. The entire extended family adds to the trust each year on Jerome’s birthday and holidays. He still receives gifts but a portion of the money, that was planned for the purchase of a gift, is now deposited into the trust. In only four years, Jerome’s trust now holds $42,000. This money will help to provide nonmedical care, pay for vacations, allow Jerome to take swim classes that he so loves, and cover other costs associated with Jerome’s life.
Ronald and Miriam did not want to burden any family member with the management of the third-party supplemental needs trust. It is a difficult job to keep up with what can and cannot be paid from the trust and reporting to the state, each year, a financial record of expenditures. They chose to use a professional trustee who is trained to manage trusts, such as this. For them, the quality of Jerome’s life is what is important. Now, Ronald and Miriam know their grandson, Jerome, is in good hands and will live a good life.
Leonard is thankful he established a special needs trust for his daughter, Abigail, who lives with a traumatic brain injury, after a horrific accident. Abigail received a lawsuit settlement totaling $136,000. Leonard became the conservator over Abigail because she was not able to care for herself and make sounds decisions. He put the money in a savings account for Abigail’s use, when the money was needed.
Leonard recently was diagnosed with terminal cancer. He decided to move Abigail’s money to a first-party special needs trust so a professional trustee could manage the money and invest a portion of the trust funds, in an effort to increase the fund’s balance, for Abigail. The trustee worked with Leonard to develop a plan of how Abigail’s money could be used. This plan is called a letter of intent. The trustee agreed to follow Leonard’s wishes, so Abigail could continue to live a good quality of life, after Leonard was unable to fully care, for Abigail.
Parents and grandparents all want the best for their loved one, the family member who is living with a disability or has special needs. By choosing to establish a special needs trust, and using a professional trustee, the responsibility of any financial burden and daily oversight is transferred to the trustee. The special needs child can live a good quality of life and the family members can live with peace of mind knowing their loved one’s future is in good hands.
Darlene Kemp, MPH, MBA is the Executive Director of Vista Points Special Needs Trusts. For more information on special needs trusts, please contact the Vista Points office at [email protected] or call 615-758-4660.