Guardianship & Autism

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Guardianship is an important legal decision to make as your child approaches adulthood. Once they’re 18 years old, the age of majority in legal terms, they stand to make their own decisions as a full-fledged adult. Parents will say that this topic often gets flung at them during an IEP meeting with very little information given to them to help make a decision. This post is about giving you an overview of what guardianship is, the types of guardianship, and what to expect about the processes to get there.




WHAT IS GUARDIANSHIP?




First thing’s first: what exactly is guardianship? It’s the process parents, caregivers, and other family members partake in to be able to make decisions on the behalf of someone else. In this case, it would be an adult on the autism spectrum. But guardianship is also a common procedure for other adults with intellectual and developmental disabilities as well as mental health challenges.




Parents/caregivers and families interested in seeking guardianship, will begin the legal process before their child turns 18. There are many reasons why parents/caregivers will pursue guardianship, including that their child cannot and does not have the capacity to make decisions important to their health, finances, and well being. My family decided to pursue legal guardianship over both of my brothers on the spectrum. As of today, my dad is both of my brothers’ legal guardian.




TYPES OF GUARDIANSHIP (AND ALTERNATIVES)




The types of guardianship vary state to state, as well as the responsibilities and process regarding each type. Make sure to check with the legal protocol and procedures in your state before pursuing anything.


Full guardianship: Full responsibility of the guardian, from medical, financial, residential and many personal care decisions on behalf of the adult on the spectrum. Note: some states require conservatorship for financial decision making, which could be the same person as the guardian.

Limited guardianship: Partial responsibilities of the guardian with regards to healthcare and housing, while the adult on the spectrum retains their responsibilities.

Healthcare proxy: No court process required, an agreement is drawn to name the parent/caregiver to make healthcare and medical decisions on the adult’s behalf.

Financial power of attorney: No court process required. Parent/caregiver is granted decision-making authority to assist in financial management.

Educational power of attorney: No court process required. Authorizes parent/caregiver or another party to have access to the adult’s educational records and to make decisions about Individualized Education Plans (IEPs) and post-high school transition plans.




PROCESS TO GET GUARDIANSHIP

Again, each state is variable and has different legal proceedings - so check your state laws regarding guardianship as well as your district’s court. You’ll need to know that location and go there in person to start the process. Unless your court does everything online (I wish!) you’ll have to do a lot of this work in person. And believe me, there is plenty of paperwork.  




SHOULD YOU PURSUE GUARDIANSHIP?




I’m not qualified in any way to provide legal advice, but what I can say is from my experience with my parents being both my brothers’ legal guardians once they reached adulthood. If you’re unsure and/or want to know about your options, I’ll have you know that there are also alternatives to guardianship, including the options listed above. Another option is supporting your child to become their own self-advocate and practice getting them comfortable with decision making. You know me, you know I’m going to mention something about self-advocacy!




I know guardianship can seem like an all or nothing type of court decision, so I would not take this lightly. But, depending on your state, guardianship can be reversed as a court decision. This may good to keep in mind as your child gains more independence in adulthood. Also, quick note: the legalese and wording around guardianship can seem pretty outdated. If you read more into it, there’s a lot of information about determining “incompetency”.




Ultimately, keep the conversation going about this if you’re unsure and want to learn more. Keep talking about this with other family members, with your child, with other families who have pursued it, and you’ll get more direction. Ultimately, this is another way for you to start thinking about life after high school and adulthood for your child on the autism spectrum and your family.  




Are you thinking about pursuing guardianship? Have you pursued it? What are your experiences with it?



For more information:

Special Needs Alliance https://www.specialneedsalliance.org/

Autism Society of NC [loaded legal resource] https://www.autismsociety-nc.org/wp-content/uploads/Guardianship.pdf




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