“Estate planning. It’s not something parents really want to do. You must face your own mortality and the fear that you might not live long enough for your children to become adults.
In some ways, estate planning for families with neurotypical children is the same. The basics need to be addressed. You need a will, a living trust, medical power of attorney, financial power of attorney, advance healthcare directive and HIPPA authorization.
However, one important thing is different. You need to be sure your estate is structured so when you pass, an inheritance does not disqualify your child from receiving government assistance, including Social Security.
Special Needs Trusts (SNTs) are created to help families ensure that their children will continue to receive benefits. A traditional estate plan could easily disqualify them.
Families need to think about their assets, as well as the needs of their child now and in the future. In some cases, that means the naming of a guardian to take care of the child and naming someone else to be responsible for finances.
Make sure to speak with the people you select for these roles. They need to understand what you are asking them to do and to be certain they are willing to take on these roles. Some families even write a letter to the people they name, to pass on more information. Often the letter includes who the family wishes their child to remain in touch with, or the personal preferences that they know keeps their child comfortable and happy. Some of the letters are highly detailed about finances or food preferences, while others focus on the love they have for their child.
Families with special needs children need to devote the time to planning for their eventual passing. Once the estate plan and special needs trusts are in place, however, you’re not done. Every few years, the documents need to be reviewed. Provisions can be included that will address issues as the child ages. However, as there are changes in life, there are also changes in the law and plans that need to be reviewed.
An estate planning attorney with experience working with special needs families will be able to create a plan that will ensure that your loved one will be cared for, long after the parents are gone. That peace of mind is invaluable.
Reference: Austin American-Statesman (Sep, 17, 2018) “How to plan your estate when you have a child with special needs”