Tag Archives: Special Needs

Guardianship: Does my child need it

Does my child need Guardianship or a Supported Decision Making Agreement?

In light of all the brouhaha surrounding Britney Spears and her Conservatorship, many of us are curious if Guardianship is right for our young adult.   I won’t go into Ms. Spears’ case as I have do not have any information on her case. First, let us go through a few terms as they pertain to us.

Protected Person is the disabled adult child.  The person who needs support and control under guardianship.

Guardian is the decision maker of the protected person.

Guardianship or Conservatorship is a legal arrangement decided in court whereby a Judge appoints one person to make decisions for another person.

Guardian of the Person: The Guardian is responsible for the health and overall well-being of the protected person.

Guardian of the Estate (Property): The Guardian is responsible for managing the income, property, and financial assets of the protected person.

Full or Plenary Guardianship: Complete authority over the Person and Property of the protected person.

Limited Guardianship: The Guardian’s authority is limited by the state or court.  When you request (petition) the court for guardianship, the court decides how much authority and control is granted.  

Supported Decision Making Agreement (SDMA) is between the disabled adult and their trusted advisors allowing them to maintain their full rights. It may or may not be a legally enforceable document.

Power of Attorney (POA) is a legal contract giving one person binding authority to make decisions for another in any or all situations.  

When we think about the best route to serve our disabled adult child, we need to evaluate not only how well they function in every aspect, but how they feel about it all. Self-determination is the guiding principle. How well do they communicate their needs? How well do they advocate for themselves and how willing are they to do so? We have to keep in mind, we are not evaluating their academic abilities or sophistication, but a belief in autonomy and self-worth in every aspect of their lives.  

Guardianship best serves when the protected person is incapable of making daily and critical life decisions. If your child cannot express their needs or does not understand what they need, guardianship is more appropriate. If your child has preferences and can make them known, guardianship may be too restrictive. For example, if your child likes to spend time with certain people, or eat at a favorite restaurant, go to a preferred mall, or play a sport, they are capable of making decisions. Also, when we take on a guardianship role, our child loses rights. Each state defines what rights are available to people under guardianship.  Some states take away their right to drive or vote. 

In all states, the protected person loses their right to decide where to live, how to spend their money, and what medical treatments they receive. Guardianship is meant to be very restrictive and permanent. They are seldom able to remove the guardian or end the agreement. The protected person cannot have a Power of Attorney or an enforceable Supported Decision Making agreement if they are under guardianship. 

In a Supported Decision Making agreement, the disabled adult maintains all their rights as a non-disabled adult but has the accommodation to allow for a team to review any and all aspects of their life. When a SDMA is adopted, financial institutions, medical providers, and educational and recreational establishments, etc., must afford the space and time for decisions. The disabled adult makes the final decision and no advisor acts on the person’s behalf.  For example, your child goes out to eat with friends, but cannot calculate his portion of the bill, he can ask for help. If a dentist tells him he needs a root canal, he and his team can speak with the dentist.  The trusted team will know how to address his concerns and relay information in a way he understands, but the final decision on how to proceed rests upon the disabled adult.  

We should also consider a Power of Attorney. This a legal contract decided privately where the principal (or disabled adult) maintains all their rights but allows another to act on their behalf as dictated in the document.  They can make decisions similar to a Guardian with one exception: the principal may revoke the POA at any given time they want. One may have both a Supported-Decision Making Agreement and a Power of Attorney as they are not in conflict.

Guardianship is really for our severely disabled children. Some of us may find comfort in having a Guardianship until Supported Decision Making Agreements become legal while the rest of us wait for our Representatives to sort out all of this. Check out the links for the ACLU Disability wing’s Supported Decision Making guide and sample agreement.

Go through the SDMA with your child and get a better sense of their understanding of their needs. While providers and businesses may not accept a nonbinding SDM Agreement, there is no reason not to have an informal one.  

A final thought. Power of Attorney is not just for those with chronic conditions.  Everyone who is not under a guardianship agreement should have one. You, me, your parents, your other adult children (especially when they leave for college or go abroad). It’s a backup plan for when one of you becomes incapacitated. If the pandemic taught us anything, it is that life can change in an instant.  

It’s so overwhelming….

What is?

Everything.

Your kids eat a balanced diet and get good night’s sleep. In the morning, they wake up, get dressed and get ready for school. You even make it to the bus stop a few minutes early to chat with the other parents, coffee in one hand and wave your little one good bye with the other. You’re also beautiful, in shape, hair done, with a clean house and a rose garden in this dream.

We live in an alternate universe. One that requires patience, endurance, and empathy 24/7/365. It’s existentially exhausting.

We live with food allergies, seizures, ADHD, sleep disorders, sensory seekers, developmental disabilities, learning disabilities, auditory processing disorders, ASD, intellectual disabilities, physical disabilities, and medical conditions no one can pronounce. The Redbook Juggler has nothing on us.

Some of us are just happy if our kids eat at all. Or if they will wear socks today. Or wont have a meltdown if their favorite Minecraft t shirt isn’t washed. “You wore it yesterday, sweetheart. Wear the green Minecraft shirt today.” But honey, you can wear the blue one tomorrow after mommy washes it.” No, love, I cannot wash it in 10 minutes. It takes time and the bus is coming in 5 minutes.” “How about the brand new yellow one? You look awesome in yellow.” “I’m sorry, pumpkin, but the blue shirt is dirty and we missed the bus.” “Here’s the another blue shirt and a cookie. We can make it to school on time if we leave now.” “How about socks?”

When 50% of families with a disabled child are being raised by single and solo parents, we are truly sailing solo. Every expert is a silo and we are forced to navigate this world alone. When our kids are little, we don’t even know who or where other parents in our situation are located. We turn to the social media of the week. We find community, which is very important, but it is filled a lot of misinformation a lot of the time. I found myself commenting the same laws, facts, information time and time again. It’s time to keep all this information in one place.

I will cover Special Education, Medicaid, Supplemental Security Income, Health Care Coverage in general, Transitioning to Adult Services, Medicaid Waivers including Home and Community Based Services and Long Term Services and Supports, Guardianship, Supported Decision Making, Special Needs Trust, Life insurance and Long Term Care and Disability insurance. And anything else that will come our way.

I went college to study Life, Disability, and Health insurance. I am a Chartered Life Underwriting, Certified Financial Planner professional, and a Chartered Special Needs Consultant. I spent my career helping my clients plan for the future and against the unexpected so they may maintain a quality of life how they see fit. Our children deserve the same. Welcome to my blog.

Gail