Guardianship and Supported Decision Making

I’ve seen a lot of online discussion promoting complete independence for people with disabilities. And I do promote independence, but not everyone with a disability will be able to achieve complete independence. A lot of times these posts also shame families that choose some kind of guardianship for their loved one with a disability. I know its a tough choice for many people and I don’t think shaming people who do not choose the same path as you is okay.

As a family we choose to go with a continued tutorship for Joel but we will be practicing supported decision making informally with that. Louisiana (where we live) only has three options for people with disabilities and their families seeking some sort legal protection for adults with disabilities. We have: Interdiction, limited interdiction, and continued tutorship. Continued tutorship is the least restrictive but you have to do before they turn 18, other wise you’ll have to choose another option.

Under a continued tutorship Joel:

  • Loses the right to consent to medical and educational plans
  • he does not lose the right to vote
  • he does not lose the right to marry but will require permission from tutor
  • he does lose ability to appear in court, so he cannot be sued but rather if anything should happen, his tutor will have to appear in court
  • he loses ability to buy or sell real estate and cannot enter into contracts

Just so you have an idea of what a continued tutorship entails. There is a lot more details and even some uncertainties, but we feel this is safer than leaving him without protections. Working in the field that I do, I come across countless families that assume they do not need to do anything like this because they believe the disability is obvious. I have had cases or have heard stories where parents weren’t allowed in IEP meetings, a person with a disability refused important medical treatment, a person with a disability signed over their SSI checks to a stranger, multiple cases where someone with developmental disabilities was jailed for a mistake or inappropriate behavior, and where a girl with autism married a guy she met online and signed everything she had to him. There are so many scary things that can happen, and I just want to make sure Joel and any other families who may not know about this gets educated and can protect their loved ones.

Now a little bit about Supported Decision Making, it promotes self-determination, control and independence. It’s a method of developing decision-making skills by relying on supporters to assist the person in collecting and processing information, and coming to a reasoned decision. Instead of having guardians or caregivers make decisions for them, supported decision-making enables them to make their own decisions with help from a trusted group of supporters.

In some states Supported Decision-Making is an alternative legal agreement to guardianship in that it provides a trusted environment for individuals who are seeking assistance with decision-making while still promoting self-determination. In contrast to guardianship, Supported Decision-Making is flexible and can change with the needs of the individual to provide more opportunities for independence. In some states, Supported Decision Making is an alternative legal document to other guardianship options. In Louisiana, you can practice Supported Decision Making informally or have it go hand in hand with whatever guardianship option you and your family chooses. You and your family just have to make sure you have it all written out in a legal document with your lawyer.

If you live in Louisiana and don’t know what guardianship options you have, check out the Legal Status Guidebook provided by the Advocacy Center:  Legal Status in LA For other states, here is some broad Guardianship Options

As I mentioned earlier, we chose to go with a continuing tutorship for Joel because we wanted to make sure he always has documentation to fall back on. But we still practice supported decision making when we can. Although he can’t verbalize a lot, we find ways to incorporate his opinions and his likes and dislikes into certain decisions.  We know his limitations and the world is full of dangerous people that can take advantage of him. So if he ever signs somethings that he shouldn’t, he’s protected.  We also wanted to protect him against himself. If he didn’t have the documentation and he refused medical treatment at some point, the doctors could refuse to give him treatment. Because of his limitations, he may not realize that medical treatment can be life or death situations. In my brother case, his supporters are made up of me, our sister, and our parents.

Supported Decision Making Guide

Many times we see that people with disabilities have someone else make their decisions and we want to encourage you to find your voice and having a part in your own decision making.  I know it can be hard so you don’t have to do it alone. The word supported means that you will have people backing you up. I think that everyone with a disability should be practicing supported decision making some capacity. It may look different for everyone and that’s okay.

First thing you will need to ask yourself is: Who can be in your group of supporters? Typically, we all seek our own circles of support and engage in supported decision-making in some way already. Depending on the issue, we reach out to families or friends, coworkers or classmates, or someone we trust before we make certain decisions like, changing jobs, making a big purchase, or whether or not you should sign something. A lot of times we consult with others, and then we decide on our own.

Likewise, people with disabilities may need assistance making decisions about a lot of very important things like living arrangements, health care, lifestyles and financial matters. But for some, just because they may need help making these decisions, it doesn’t mean they need a legal guardian to make those decisions for them. Some will and that’s okay! What they might need instead is a trusted group of supporters to answer their questions and help review their options.

When choosing supporters, ask yourself/loved one with a disability:

  • Does this person know my likes and dislikes?
  • Is this person trustworthy?
  • How do you know this person?
  • How long have I known this person?

You don’t’ want to ask someone you just met or even someone you met online. It is very important that you select supporters who know and respect the person with a disability’s preferences. Another important aspect is that the supporters honor the choices and decisions that the person with a disability makes. Supporters can be family members, co-workers, friends or someone you trust.

Imagine for a moment that you are standing in front of a vending machine full of food. You’re hungry and you know you have some change in your pocket, but you don’t know how to count it. How do you decide what to do?

  • You could start putting money in the machine and pressing buttons until something falls out.
  • You could also just give all your money to someone else without saying anything and hope they buy you something.
  • But neither option is likely to get you what you want.

Putting money in the machine and pressing buttons is what it’s like to live without support when you need assistance in decision-making. It doesn’t mean you don’t know what you want or you can’t make informed decision. It just means you don’t have or lack the support you need.

Giving your money and decision-making authority to someone else is guardianship. You lose any ability to participate in the decision-making process, including choosing what decisions need to be made.

If you can think of any alternative besides putting your money in the machine and giving your money to someone else, you’ve chosen Supported Decision-Making. You’ve kept yourself as a critical part of the decision-making process and you’ve asked for the support you need to make a decision. Support can come in all forms and can be tailored your needs and your specific circumstances.

There are many people with disabilities that have some sort of guardianship and still make decisions. As I mentioned earlier, you can be detailed in your documentation with your lawyer on what decisions your loved one with a disability can make on their own, who can make other important and complicated decisions and who can help them make decisions. I don’t’ want to sound like I’m against guardianship because some people will really need it. Whether or not you and your family file for guardianship is a personal decision that should be carefully made after reviewing all of your options and considering all of your needs, limitations, and emergencies.

For more on Supported Decision Making visit: SDM Guide



I Can Bike

I thought I’d share one of Joel’s recent endeavors: I Can Bike Camp.

I can Bike is a five day camp for people with down syndrome and related conditions who can’t ride bikes. I first heard of this camp while watching an episode of born This Way. I thought it was very cool and thought Joel would benefit from it, but I was like they’ll never come here. And I was right, they hosted a camp almost an hour from where we live but I was like close enough! (Shout out to Up21 in Mandeville for paying half of the camp cost and paying for the bike![:)

Most people with down syndrome have a lot of trouble balancing, like Joel usually has trouble sitting in chairs with no backs and on swings. He hasn’t fallen off a swing in a while but you can clearly see he is trying hard not keep his balance.

Exhibit A:JoelS

So anyways, I Can Bike turned out to be a super cool experience. He really liked it despite his facial expression during each session. He was so serious, never smiled, and would just give a shifty glance every time he rolled passed us. Once again I would compare this to the other participants who roll passed their families and say, “I love you” or “hi mom.” But when we would leave fro the day, he would be all giggly and cute.  The other parents said things like, “wow he means business” and “he’s serious, he came to learn and not to play.” This was a better perspective than mine honestly, I was thinking he’s just mean to us in front of others. Whichever is true, it’s okay!

Joel did very well all the days of the camp except the last one, probably because it was more independent the lat day. He took his first fall and scraped his knee. If this would have happened at home, he would’ve gotten mad and kicked whatever was near him. He did get mad however, since the volunteers and staff at I Can Bike are trained to praise them when they fall, Joel kept his cool and was encouraged to get back one.

A few days after camp we took him to the park to practice with us. He was really excited at first and wouldn’t stop giggling when we got him on. But he would freak out when we would let him go. He yelled, “Aquel Help!” (He calls me Aquel instead of Raquel.) every time I let go. He would go on for a minute and then panic.  But we preserved on and finally got him to pedal without us holding his back and handle. It took about two hours to go through the park which would normally takes like 45ish minute. But once he got a hang of it, he finished the track with no issue, just non stop giggles.


Joel on one of his many breaks while riding his bike

It may have taken 17 years but, Joel can finally ride a bike!

Joel’s First “Job”

While I was in college I worked at our neighborhood Baskin Robbins. Joel would come in all the time (once he disappeared from home because of Baskin Robbins, but that’s a different story for another day.) He loved that place and still does but we have to limit his visits now for health reasons. Many times when my family would come in while I was working Joel would refuse to leave. There were several occasions that our parents left him there while I was working because they could not get him out of the store. Luckily, the owner was very cool about it every time and also said Joel could stay as long as he wants. We did not think much of it other than thinking he was being rebellious towards our parents.

Joel can be very hard-headed at times,  just like any other teenage boy. He listens when he wants too and has a hard time being obedient.  BUT! This is only the case with us, when he’s at school, camp, or with other people who are not in his immediate family, he is such an angel. To be fair, his behavior has gotten better, but at the time this story is taking place he was still being difficult, but mostly just to our parents.

So, it was one of those days that Joel was refusing to go home and hiding behind the counter so our mom would give up trying to take him out. But this time was a little different instead of chilling in the back and playing games on his IPod, he stayed by the counter and said the word, work. (a little side note here: at this time I had also started working at our state’s PTI and I was beginning to learn a lot about disability and employment and all that good stuff) So, this put ideas in my head and I wondered if maybe Joel was ready to work. I called the owner and asked if it was okay to let Joel work with me, thankfully he was super supportive and said he could also take a share of the tips too.

So I gave him my Baskin-Robbins hat and he became the happiest kid ever. He did everything I told him to like a good employee. He helped me make cones, wash dishes, restock the supplies, and hand customers their order.

Most people were very nice and started conversations with us about disability and how cool it was to see him there. But there’s always a bad apple. One lady, although she never said anything, was bothered by him. She kept giving him a look and she didn’t want to take her cone from his hands. This caused Joel to drop the cone and he got upset and went to sit in the back. Still the lady never said anything, I fixed her order and she left. I was the kind of employee that never took crap like that from customers, but this time I kept my cool and went to tell Joel it was okay and we would try again later. He was trying to explain himself to me but he’s speech is very hard to understand, but he was able to pull himself together and went back to work. Later that night he called my dad to come get him when he was tired. He went home feeling accomplished and with some tip money.

He continued to pop in to work with me whenever he wanted until I stopped working there. I am very grateful that we know such an open minded person such as Ramzy, the owner of our Baskin Robbins,  that allowed Joel, who can’t speak and only works when he feels like it, to come in whenever he wants for as long as he wants. What kind of employer does that? It’s truly amazing and encouraging to know there are people like this out there. You’ll never know what opportunities are out there until to open up and ask.

Here’s the same story but written for my job: FHF’s Version