As a parent of a child with a disability you may be anxious when thinking about your passing. It requires careful thought and planning. The choices available may impact not only your child with a disability but your other children and grandchildren. The needs of the child with a disability must be considered but the needs and desires of the other family members cannot be overlooked.
You will want to consider the government benefits available for your child and ensure that your planning will allow those to continue. Benefits like SSI and Medicaid are asset-based, so you won’t want your child to inherit unrestricted assets. You may need a Supplemental Needs Trust (often called a Special Needs Trust or SNT) for your child.
Depending on the size of your estate, you may need to consider how to divide your assets among your children. The child with a disability may need more, but you may not want to take some away from the other children. You might want to purchase life insurance (with the SNT named as beneficiary) to provide more assets for your child.
You may not want to burden your other children with care duties, but they may want to take on that responsibility. You need to review the future care-giving options and discuss them with all concerned. You don’t want to leave your other children with a burden that they are not willing or able to handle. There are organizations that can help you, so you should seek out that assistance while you still have time to plan and choose what is right for your child.
If you think that your other children may want to be caregivers for your child with a disability, then you should discuss this thoroughly. Think about the possible affects on their lives, such as family dynamics, spouses, grandchildren, living arrangements and the like. A sibling may want to provide care but may not have thought out the full ramifications of being a full-time caregiver.
Beyond possible living and care arrangements for your child, you will need to consider who should have legal and financial authority to handle your child’s affairs. Do you want one or more of your other children to be Trustees of the SNT? Do you want them to handle the medical-decision-making for your child? Will a guardian need to be appointed (now or in the future) or can your child with a disability make decisions without need for a guardian, and if so, are a Power of Attorney and Health Care Proxy the right tools to use?
You should seek out whatever help you may need to figure out your plan. An Elder Law Attorney can help with legal planning, but you may need a social worker or care manager to help with personal living and care choices. Your local Agency for disabilities may have resources for you so do not fail to find out how to contact that organization.