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My Special Needs Child is Turning 18 – How Do I Prepare?

My Special Needs Child is Turning 18 – How Do I Prepare?

It is a milestone in every parent’s life when a child turns 18. The child is now an adult, and while many responsibilities now shift from the parent to the child, parents still want to be involved in helping their young adult make decisions. A prior blog post, When a Child Legally Becomes an Adult: A Parent’s Right to Stay Informed, addressed the legal issues that a parent and child should consider when a child reaches that 18th birthday.

This month I want to focus on the issues and concerns when you have a child with special needs turning 18. For parents of special needs children, parental involvement can be critical, and depending on the disability, necessary for continuation of care.

An elder law colleague recently shared a list she put together for her clients who have special needs children. The list is a “what should I think about” and “what should I be aware of” before my special needs child turns 18. I would like to share her list (giving credit to Ailish O’Connor, Esq.)

  1. See an elder law/ special needs attorney and discuss a power of attorney and health care directive for your adult child, or if you need to become your child’s guardian advocate.
  2. File for SSI when the child turns 18, and have your child declared “disabled” before he or she turns 22. (See #9 below)
  3. Get the child on the ADP (Adult Persons with Disabilities) wait list for services.
  4. Find out about the SSI rules regarding payment of room and board, if the child will continue to live with the you.
  5. Find out the SSI rules about assets and how the parent’s estate planning should be amended to avoid a loss of benefits and how a special needs trust works. This holds true for grandparents or other family members who want to leave money to the child.
  6. Investigate ABLE accounts and what benefits they offer.
  7. Review any prepaid college plans or other investment vehicles set up for the child to determine if these will be countable resources for the child and possibly impact future benefits he or she may receive under SSI.
  8. If your child can work, or wants to work, learn how he or she may earn enough quarters to qualify for disability and Medicare on their own.
  9. If the child was deemed disabled prior to age 22, he or she will be eligible to draw benefits on the parents record if the parent dies, or when the parent retires and begins drawing benefits.
  10. Find out if the child can remain on the parent’s health care until age 26 and if so how this coordinates with other benefits under SSI or SSDI.
  11. Investigate what types of other housing arrangements are available in the area if the child will not live at home.
  12. Investigate what types of transportation is available for the child that will meet their needs.

This list is a great place to start and will enable you as a parent of a special needs child to gather the information you need, to begin the process of being prepared before that birthday arrives, and to celebrate that 18th birthday knowing you and your child are ready for the future.

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