As medical advances continue, children with developmental disabilities are expected to live longer - most likely outliving their parents. It puts more responsibility onto parents to plan a future for their child after they pass away.
Estate planning seems complex, but it can be straightforward if you understand what you are planning and how it will impact your child's future needs. It also gives peace of mind to parents to know their child is supported in case of a tragedy.
Write a will
Like any other parents, you need to write a will and name a legal guardian for your child. Without a will, a judge decides who should take care of your child. You can include any information - medical records, contact information or etc. - that will be necessary for your child after you are gone.
If you have specifics for your child's care, you should consider writing a letter of intent. It is not a legal document, but it provides the parents with an opportunity to give step-by-step instructions about raising and supporting their children. It typically includes their daily routine, how their express themselves and any details to make the transition smoother.
Set up a special needs trust
Most parents assume they should name their child as a beneficiary of their financial portfolio. However, the excess amount of income could make the child disqualified for governmental programs and federal benefits.
What you should consider is setting up a special needs trust. Instead of the child have direct control over their trust, you assign a trustee who helps them cover daily expenses. Setting up a trust does not disqualify them from federal benefits.
What's most important is appointing a trustee who will act in the best interests of the child. It can be complex to weigh who should be chosen, but a legal expert or estate planner can advise you on what is best for your personal situation.
Update your plan over time
Most people update their estate plans as their personal and financial situations change. The risks are higher with families with special needs children since their medical status changes. It is best to update the plan as children grow into adults, and you can assess how much support your dependent needs after you pass.
Planning ahead is daunting, but the reality is anything could happen so don't leave your child at risk.