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How do I make decisions for my disabled child after they turn 18?

Charlotte, NC |

My child has Downs Syndrome and has been receiving special education his entire life. He turns 18 soon and I want to continue making all of his education decisions and general life decisions. What do I need to do?

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Well, there are two things that you need to do. First, you should get an affidavit signed by your child giving informed consent to allow you to make all of their education decisions. If your child lacks the capacity to give informed consent, which is likely with a child with Downs Syndrome, then you should get an affidavit from your child's physician indicating that in their professional opinion, your child lacks the capacity to give informed consent and that it would be in the best interest of the child for their education decisions to remain with you, the parent, after the child's 18th birthday.

To obtain the right to make your child's other, non-educational, decisions you will need to seek an adult guardianship. This process is a bit more complicated and may require the assistance of an attorney. However, there are self-help centers at most courthouses in North Carolina. If you live in a county with a self-help center, you should be able to find a packet there for guardianship proceedings. You can start the guardianship process as early as 6 months before their 18th birthday.


This is a challenging time for the parents of children with disbilities who are approaching the end of their public school eligibility. The laws and programs vary form state to state but, generally, you want to look at the remainder of his eligibility fo rpublic education, explore the programs available to adults with disabilities in your area ( such as Medicaid funded servcies for adults with developmental disabilities and housing and employment options) and the need to set up a mechanism that allows you to make legal decisions for him once he turns 18.
I assume that your child has an IEP to support him in school. As of age 14, the IEP must include a transitional servcies plan that is intended to provide students with disabilities who are approaching graduaion with services and supports that help him make the transiion from high school to adulthood. Such plans typically include assistance with applications for such servcies and also incude a plan to develop the skills that the student needs to achieve a reasonable level of independence. You should also consider whether you need to obtain a power of attorney and a health care proxy from your child, that would give you the ability to make financial and health care decisions for him. A guardianship may also be needed, but this decision may be impacted by the laws in your state that apply to guardianships. Finally, you should consider whether your child should have a special needs trust. This is a financal planning instrument that allows your child to have funds available to supplement income from such public assistance programs as SSI and Medicaid without losing eligibility for these critical public benefits. It woud most likely benefit you to consult with an attorney in your area who is familiar with special education and estate plannning for persons with disabiities to discuss these options.

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