Anyone caring for a special needs child knows how valuable it can be to have access to government benefits. As you plan for the long term needs of your child, preserving their eligibility for these services is essential to continuity of care. Just like your special needs child has an Individualized Education Plan for their schooling, they also need an individualized financial plan for their care after your death. So, what can you do?
Estate Planning for Your Special Needs Child’s Future
Life Care Planner
Start by contacting a certified Life Care Planner, a type of case management nurse who will help you formulate a plan for the care of your child for the rest of his or her life. They will work with you and your child’s doctors to plan for the future social, medical and legal needs of your child. Life Care Planners have access to a wide variety of resources and information that can be time consuming and confusing to find on your own. Having this carefully structured plan in place will help you navigate the maze of resources for special needs children and will preserve the plans for future caregivers.
Letter of Intent
Sit down and write a letter of intent. This is not a legally binding document, but it should clearly set forth your hopes and desires for your child’s future and care. By providing information about their social and medical needs, their personal preferences, etc., you can be sure that if you are not around to communicate to your child’s caregivers, they will still know all the important things. After all, who else knows which song will calm an overstimulated child, or what medicines ease a particular ache. For special needs children, routines are vital. Your child has particular ways of going through life, and you are the expert. Make sure that knowledge is preserved.
Conservatorship/Age of Majority
Young special needs children become special needs adults, but states differ on the age at which they reach legal majority. In Tennessee that age is 18. Parents of a special needs child should file for a conservatorship when the child reaches that age. While this may seem unnecessary, it is essential if you want to continue making financial and health care decisions for your child once he or she has legally become an adult. A Conservatorship is a legal process in which the Court appoints a responsible adult to make financial and health care decisions for a disabled adult. Once this appointment is made, the Conservator must make annual reports to the Court and must seek Court approval before making any large expenditures from the financial assets of the disabled adult. You will need the assistance of an attorney who practices in this area if you want to become your child’s conservator.
Having A Will is Essential
Make sure you have a current valid Will drafted by an estate planning attorney. This is true for anyone with children, but is even more vital for parents of special needs children. If you die without a valid Will, state law requires that your assets be divided among your spouse and children. This may result in disqualifying your child from access to government services and benefits that are essential to their care. If you die without a Will, the decision of who will care for your child may be left to others to make without your input. So what CAN you do?
Special Needs Trust (SNT)
A Special Needs Trust is a specialized trust that holds assets for the benefit of a special needs child while still maintaining their eligibility for government benefits. For this, you need an estate planning attorney who understands the importance of properly creating a Special Needs Trust. There are laws governing how the funds in a Special Needs Trust can be used. In general, the Special Needs Trust can only pay for assets and services not provided by government benefits. It is important that the Special Needs Trust have a knowledgeable Trustee who is familiar with the rules governing these trusts and can manage the Trust in compliance with those rules.
Your attorney can help structure your Will and set up any other assets to fund the Special Needs Trust as well as take care of distributing assets to any other children you may have who do not require such a Trust. Taking these steps will give you peace of mind that you have done everything you can to take care of your child’s future, even when you can’t be here to take care of them yourself. Working with a Life Care Planner will help you map out a plan for your child’s ongoing care. Working with an estate planning attorney will make financial resources available to your child and protect their continued access to government services.
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