If you have a child with special needs, planning for their life after you pass is no doubt a huge concern. Let’s look at the main structures a family should put in place to protect their child’s future.
If the child gets government benefits, such as Supplemental Security Income or Medicaid, parents will usually establish a special needs trust to shield assets to allow the child continued access to those benefits. A trustee oversees the funds and other trust provisions not under the child’s control.
This is the cheapest way to fund a trust. That’s because you need to know what’s left over from your estate to care for the child, and this creates that certain bucket of money.
Parents must arrange the services their child will need to live independently or semi-independently. These arrangements may be overseen by a court-appointed conservator (or guardian). This person makes all decisions regarding an individual’s financial and/or personal affairs. Otherwise, decisions may be made by a person with power of attorney, as well as the individual.
Parents may want to write a “letter of intent,” which is a guide for those who will care for the child in the future. This letter can cover family history, medical care, benefits, daily routines, diet, behavior management, residential arrangements, education, social life, career, religion and end-of-life decisions, according to the Autism Society.
With respect to future housing for the child, location is more important than the house itself. Parents should consider options beyond keeping their loved one in the family home. It’s more important to look at the individual and the interests and supports they might require. Parents may think of retiring to a community that supports the interests of the child. There is a trend toward more community-based living.
State-administered Medicaid HCBS waiver programs allow people with disabilities to live in a house or apartment. The state, in turn, provides staffing for a group of similar residents. Sometimes, a group of families will purchase a collection of houses or condominiums. And people are rehabbing houses for roommate living, resulting in neighborhoods of people with special needs.
It’s critical to work with specialists in this type of planning, such as an experienced estate planning or elder law attorney.