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How Do I Plan with a Special Needs Child?

Planning for special needs child
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For parents who have a child with special needs, planning for their loved one’s life after they themselves are gone can be overwhelming. Breaking the process down into manageable parts and working with specialized professionals and companies can help.

The three main structures a family should put in place to provide future protection for their child relate to money management, self-care, and housing, says CNBC’s recent article entitled “If you have a child with special needs, here’s how to plan for their life after you pass.”

Money Management: 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.

Life Insurance. Life insurance is the cheapest way to fund a trust. That’s because you need to know what’s leftover from your estate to care for the child, which creates that specific bucket of money.

Self-Care: Parents must arrange the services their child will need to live independently or semi-independently, which may be overseen by a court-appointed conservator (or guardian). This person makes all decisions regarding an individual’s financial and personal affairs. In the alternative, decisions may be made by a person with power of attorney and the individual.

Parents may want to write a “letter of intent,” which guides 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.

Housing: Concerning future housing for the disabled 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 promotes the child’s interests. There is a trend toward more community-based living. State-administered Medicaid HCBS waiver programs allow people with disabilities to live in houses or apartments. 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.

Reference: CNBC (Dec. 6, 2021) “If you have a child with special needs, here’s how to plan for their life after you pass.”