1. DO understand the governmental benefits available. Many children will become eligible for Social Security benefits and Medicaid immediately as a result of a birth injury or disability present from birth. Some may not become eligible until the age of majority, eighteen. Every situation is different. The rules for eligibility and maintenance of benefits are critically important. Some benefits are so difficult to qualify for that if lost, cannot be regained. A parent or care giver must pay particular attention to applying for the proper benefits and maintaining them. Seek appropriate assistance from an attorney knowledgeable in such governmental benefits to ensure compliance.
2. DON’T simply put your other children in charge. Some families disinherit disabled children, relying on their siblings to care for them. This approach is fraught with potential problems. Siblings can be sued, get divorced; disagree on their responsibilities, run off with the funds. It can also cause tax problems for siblings. The disabled child and the healthy child may resent the forced relationship
3. DO set up a Special Needs Trust. Any funds left for a disabled child, whether from an estate or the proceeds of a life insurance policy, should be held in trust for his or her benefit, not left with the siblings. Leaving money outright for anyone with a disability jeopardizes public benefits. The best approach is a Special Needs Trust fund set aside for the disabled child. Please be sure to contact an attorney knowledgeable in planning for disabled children when establishing a Special Needs Trust.
4. DON’T forget to coordinate planning with the rest of the family. Even a carefully developed plan can be sabotaged by a well-meaning relative who leaves money directly to the child with a disability. If a Special Needs Trust is created for the benefit of the child, grandparents and other family members should be told about it so that they can direct any bequest they may like to leave to that child through that trust.
5. DO prepare a care plan/Letter of Intent. All parents caring for disabled children are advised to write down what any successor caregiver would need to know about the child and what the parent’s wishes are for his or her care. This is important whether the child be in a group home, live with a parent, or be on his or her own. The parent knows best, but needs to pass on important information about medical issues, medication, diet, a “day in the life,” housing, outside activities, faith, personal values, finances, expenses, and more. A copy of the memo or letter can be kept in the attorney’s files with the parents’ estate plan.
