Embrace the Blessing

ETB 58: Exploring Guardianship and Supported Decision-Making

• Sandy Deppisch

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ETB 58: What if the future of your loved one with a disability could be bright, secure, and filled with choices and alternatives? Envision a world where guardianship isn't the only path, where supported decision-making reigns supreme, and personal rights are preserved. This episode offers a detailed dissection of guardianship and its alternatives, shedding light on the game-changing Right to Make Choices supported-decision making toolkit - a Texas-based initiative.

We take you on a journey through the pivotal Jenny Hatch case and the subsequent reform of the Texas guardianship system in 2015, highlighting the importance of considering alternatives to guardianship such as medical power of attorney, durable power of attorney, and more. Hear the ins and outs of these alternatives, and how they can shape a brighter future for your loved ones. So, tune in, soak up the knowledge, and empower yourself to make informed decisions that truly make a difference.

Supported Decision-Making Toolkit:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf

Supported Decision Making Agreement - see page 89-90 in the link below:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf

Guardianship in Texas
https://www.hhs.texas.gov/regulations/legal-information/guardianship

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Sandy Deppisch:

Hey there, I'm Sandy Deppish, and this is the Embrace the Blessing podcast. Each week, I talk with a parent who has a child with a disability. They share their biggest challenge, their greatest joy and their hopes and dreams for the future. You'll learn about resources available to you and discover helpful hints and tips. If you want to be inspired and encouraged, stick around. Let's walk the road less traveled together. Hey guys, welcome back.

Sandy Deppisch:

So, thinking about what this episode today was going to be about, it dawned on me that something I think any parent that has a child with a disability needs to know about is guardianship and alternatives to guardianship. So I wanted to think of this, or I want you to think of this, as an audio book you're listening to. An amazing friend of mine printed out lots of information from the website and I'll post the link below in the show notes in case you want to go to that website yourself and find all this information and print it out to read over at your leisure. She printed all this information out and put it in a binder for me, which is just so thoughtful, just really excellent information that I think needs to be shared. So if you're running errands, if you're driving in the car if you're shopping, maybe just doing chores at home. You might want to listen to this and, like I said, think of it as an audio book. I'm not going to read everything to you. I'm just going to read what I think are some key points, so that it's kind of like a springboard for you to look into this further and make some decisions about what it is you want to do for your family. Every family is different. Every family makes choices based on what will work best for them. This is just information for you.

Sandy Deppisch:

If you have a child who's about to turn 18, guardianship an alternative to guardianship will be something you need to make a decision about. So this booklet is called the Right to Make Choices a supported decision making toolkit for people with disabilities and their supporters. So in the introduction it says all of us have the right to make decisions about our lives, and getting support to make decisions from people we trust is something we all do. If a decision is important to us, we may take longer to decide and may ask other people for ideas or information or to help us make up our mind by talking about the options. There may be times in our lives when we need extra support to make decisions, especially when we have to make a major decision. People with disabilities have the same rights to make decisions as everyone else. However, many people with disabilities have not had the same opportunities to make decisions and develop the skills and knowledge to direct their own lives. Texas was the first state to recognize supported decision making as an alternative to guardianship.

Sandy Deppisch:

Supported decision making is a practical way for a person with a disability to get the help they may need to make their own decisions and ensure that those decisions are heard by those around them. With supported decision making, a person with a disability enters into a voluntary agreement with someone he or she trusts to help them make decisions and communicate the decisions to others. The supporter could be a family member, friend, service provider or someone else chosen by the person. Supported decision making may not only help a person with a disability avoid guardianship, but may also help the person develop his or her decision making skills and develop confidence in his or her ability to make decisions. So guardianship is something that I had heard all along, from the time Josiah was little, that when he turns 18, we will need to get guardianship of him. I just figured that was kind of like a rite of passage your child turns 18, you become their guardian. I never questioned it. I never read into it, read about it, tried to educate myself on it. Granted, we were going through some major crises during most of his earlier childhood and definitely during the adolescent years, but it's something that I should have thought to educate myself on. I didn't. Thankfully, somewhere before he turned 18, I had someone talk to me about options that were available to us. So another section I'm gonna split you in this booklet is the section on guardianship, and here's what it says Guardianship is the legal process to determine if a person is incapacitated.

Sandy Deppisch:

A court decides if, due to a physical or mental condition, an individual is substantially unable to manage their financial affairs, care for their physical health or provide food, clothing or shelter for themselves. Under a guardianship, someone is appointed to make decisions on behalf of the incapacitated person, referred to as the ward. Guardianship severely limits an individual's civil rights and decision-making. Therefore, guardianship should always be the last resort for an individual with a disability. As I mentioned earlier, we just kind of understood as Josiah was growing up that guardianship was going to be the next step when he turned 18. We did not understand that it was something that should have been considered as a last resort. To us, it was like the only resort. We had no idea that there were other options available. That's why I want to share this information with you. Guardianship might be just exactly what you want for your family, and that's great, but I do think it's important to be educated, to know that there are options available, and perhaps there is something else that you'd like to do besides guardianship. So, to continue, it says fortunately, there are many alternatives to guardianship available to help individuals with disabilities make decisions without taking away their rights.

Sandy Deppisch:

There are two types of guardianship guardian of the person and guardian of the estate. A guardian of the person is responsible for the physical well-being of the person under guardianship. Their responsibilities may include making medical decisions, choosing where the person lives and ensuring that he or she has food and clothes. A guardian of the estate is responsible for the person's property and assets. One person can be both guardian of the person and guardian of the estate, or two different people can assume those roles. Not every person under guardianship will have both types of guardians. Both types of guardianship can be either full or limited. Under a limited guardianship, the judge gives the guardians only certain rights and responsibilities, while allowing the individual with a disability to keep the rights not granted to the guardian. Under a full guardianship, an individual loses many of his or her civil rights, including the right to drive, choose where to live and work, vote, choose to get married and consent to medical treatment.

Sandy Deppisch:

Guardianship is a legal process where decisions about whether an individual needs a guardian and, if so, the scope of the guardianship are made by a judge. An individual seeking to become guardian is called an applicant and must be represented by an attorney to obtain guardianship. The applicant files an application for guardianship stating the reasons he or she believes guardianship is necessary. However, whether guardianship is appropriate for a particular person is a medical decision, and a court will not grant a guardianship application unless a physician provides his or her opinion about whether the individual is unable to make decisions on his or her own, with or without support. Completing a physician certificate of medical examination For the CME certificate of medical examination, a doctor provides his or her opinion about the individual's ability to make decisions with or without support. After the application has been filed, an attorney will be appointed to represent the desires of a person with a disability. In some cases, a guardian may also be appointed to advocate for the best interest of the person with a disability. A court hearing is then held. The judge has the ultimate authority to decide whether or not someone needs a guardian and if the guardianship should be full or limited. The judge also has the final say in who is appointed guardian. The judge may decide, for example, that the applicant is unfit to be guardian and can appoint someone else to fill that role.

Sandy Deppisch:

Texas law requires that probate courts consider alternatives to guardianships and supports and services before a guardianship is created Under the law. Before appointing a guardian, the court must find, by clear and convincing evidence, that alternatives to guardianship and supports and services have been considered and determined not to be feasible. If the court grants a limited guardianship, the court order must specify the rights retained by the proposed ward, with or without supports and services. The court must also state whether the proposed ward has ability to make decisions about residents voting and operating a motor vehicle. Obtaining guardianship can be an expensive and complicated process. This must hire an attorney and pay a fee to file the applicant for guardianship. There may also be costs associated with required medical exam. The guardian must also post a bond with the court if the application is granted.

Sandy Deppisch:

Once a guardianship is established, the guardian has many responsibilities. Each year, a guardian of the estate must file an accounting explaining what money was received and how exactly money was spent. A guardian of the person must file an annual report on the conditions of the person under guardianship. In addition, guardians must fulfill all duties granted to them by the court and may be asked to justify decisions they have made on behalf of the person with a disability. Another issue to consider is that many people with disabilities do not want a guardian. People with disabilities desire to have decision-making power over their own lives, even if they sometimes need additional support.

Sandy Deppisch:

Pursuing a guardianship when a person does not agree can lead to family conflict. Additionally, once a guardianship is established, changing or ending it can be difficult. This underscores the importance of looking at all available alternatives to guardianship, including supported decision-making, before pursuing guardianship. It is up to the judge to decide whether to change or terminate a guardianship. Because guardianship takes away a person's rights, a court must consider less restrictive alternatives before granting a guardianship.

Sandy Deppisch:

Alternatives to guardianship can be used to avoid the need for guardianship. In addition to supported decision-making, texas law recognizes a number of alternatives to guardianship, including, but not limited to the following Medical power of attorney, cr, nel. Durable power of attorney. Declaration for mental health treatment representative payee trusts and savings accounts. Joint bank account. Designation of guardian before the need arises. Alternate forms of decision making based on person-centered planning. Supported decision making agreement.

Sandy Deppisch:

While not all alternatives to guardianship may be appropriate for the individual or his or her circumstances, there is information on several alternatives to consider before pursuing guardianship. So all of those alternatives that I just mentioned above there are nine of them have detailed information about what those consist of and what is required in order to make that happen. I think I'm going to save those for another day, because this is a lot to take in, and I think the biggest thing is right now for you to understand that guardianship is not the only way to go. There are other options available. So at the heart of supported decision making is a simple premise Everyone receives help from people they trust to make important life decisions.

Sandy Deppisch:

Even if people with disabilities need extra support or a different kind of support to make decisions, it does not mean that they cannot make decisions or that their right to make decisions should be taken away through guardianship. Supported decision making is a process of supporting and accommodating an adult with a disability to make their own choices, using a supported decision making agreement. An adult with a disability chooses another adult they trust to serve as their supporter and to help them make decisions and live a more self determined life. Under a supported decision making agreement, the supporter cannot make a decision for the person with a disability. The supporter can, however, help a person with a disability. They can help them understand the options, responsibilities and consequences of their decisions. They can help them obtain and understand information relevant to their decisions, including medical, psychological, financial, educational and treatment records. They can communicate their decisions to the appropriate people. Supported decision making empowers people with disabilities to use available support to make their own choices so they can live more independent and self directed lives.

Sandy Deppisch:

In 2009, the Texas legislature passed a law to create a supported decision making pilot project run by the arc of San Angelo and administered by the Texas Department of Aging and Disability Services. Over three years, the pilot trained volunteers to assist individuals with intellectual or developmental disabilities living in a state supported living center to make their own decisions, using supported decision making as an alternative to guardianship. In 2013, the Jenny Hatch case received national attention when she became the first person in the country to have a court order the use of supported decision making instead of guardianship for a person with a disability. The previous year, jenny Hatch, a 29 year old woman with Down syndrome, was placed under guardianship and lost her right to do many things she loved, including seeing her friends and using her cell phone and laptop. With the help of quality trust for individuals with disabilities, jenny won back her right to make her own decisions using supported decision making. She now lives and works where she wants and has the friends she chooses. In 2015, many advocates came together to work on reforming the Texas guardianship system. As a result, the Texas legislature passed the nation's first law specifically identifying supported decision making as an alternative to guardianship.

Sandy Deppisch:

Supported decision making can be used by any adult who has a disability. While supported decision making is a good alternative to guardianship for many people with disabilities, it may not be appropriate for everyone. The person with a disability must have the ability to understand what supported decision making is, and must have the capacity to choose who he or she wants to be his or her supporter and what kind of decisions he or she needs help making. The supporter can be any adult the person with a disability chooses. However, the supporter should be someone that the adult with a disability trusts. Often this will be a family member or friend who knows the person with a disability well.

Sandy Deppisch:

After a supporter is selected, the person with a disability and his or her supporter can then fill out a supported decision making agreement together. The person with a disability and his or her supporter can use the sample supported decision-making agreement found in section 1357.056A of the Texas Estates Code, or any form consistent with that one. I'll post a link to a version of that form in the show notes so that you can take a look at that and download it if it's something that you're interested in. Filling out the form does not require going to court, having an attorney or paying a fee. For the agreement to be valid, it needs to be witnessed by two people over the age of 14 or a noted republic. On the supported decision-making agreement, people with disabilities can specify what kind of decisions they want help making and whether they want their supporters to be able to access their private health and education records. A person with a disability can have multiple supporters to help with different kinds of decisions. The individual will just need to fill out a separate form with each supporter. The person with a disability or the supporter can keep the original form, and copies can be provided to professionals who work with the individual, such as doctors, teachers, service providers and others.

Sandy Deppisch:

According to the law, people who receive a copy of the supported decision-making agreement cannot be held to criminal or civil liability or professional misconduct, as long as they act in good faith to what is in the agreement. Having a supported decision-making agreement does not guarantee that someone can provide informed consent. The person with a disability still needs to demonstrate that he or she has the capacity to make a particular decision. The supporter's role is to help the person with a disability to understand and communicate what is needed to provide informed consent. Under Texas law, a supported decision-making agreement creates a fiduciary relationship between the supporter and a person with a disability. This fiduciary duty requires the supporter to act loyally, in good faith and without self-interest. The supporter must also avoid conflicts of interest. A supporter could be held liable for violating these duties.

Sandy Deppisch:

Through supported decision-making, an adult with a disability can authorize his or her supporter to help him or her access confidential information. This includes things like medical and school records. While the agreement may authorize the supporter to assist with obtaining records. The adult with a disability will need to fill out an authorization to release confidential information form. The supporter must make sure the information obtained is kept confidential and is only used to support the adult with a disability. The person with a disability can also get confidential information on his or her own without the assistance of the supporter. Here are the four reasons.

Sandy Deppisch:

A supported decision-making agreement can end the adult with a disability or the supporter can choose to end the agreement at any time. The adult with a disability and the supporter can put a termination date on the supported decision-making agreement. The agreement ends automatically if the Department of Family and Protective Services finds that the supporter has abused, neglected or exploited the adult with a disability. The agreement ends automatically if the supporter is found criminally liable for the abuse, neglect or exploitation of the individual with a disability. Supported decision-making can be used along with other alternatives to guardianship. For example, an adult with a disability may need a representative payee for SSI, a special needs trust to protect assets and to help plan for the future, or a medical power of attorney for medical decisions if he or she becomes incapacitated, while having a supported decision-making agreement to get support with other kinds of decision-making.

Sandy Deppisch:

It is important to remember that there is no one-size-fits-all alternatives to guardianship. The key is to take a person-centered approach so that the adult with a disability can choose alternatives to guardianship that provide the support they need to help them reach their goals. If a person who receives or is aware of a supported decision-making agreement has reason to believe that the supporter is abusing, neglecting or exploiting the adult with a disability, the person must report this information. So now let me go over the supported decision-making agreement and what that looks like. It's a two-page form or actually just one page if you do front and back and it says this agreement is governed by the Supported Decision-Making Act, chapter 1357 of the Texas Estate Code.

Sandy Deppisch:

This supported decision-making agreement is to support and accommodate an individual with a disability to make life decisions, including decisions related to where and with whom the individual wants to live, the services, supports and medical care the individual wants to receive, and where the individual wants to work, without impeding the self-determination of the individual with a disability. This agreement may be revoked by the individual with a disability or his or her supporter at any time If either the individual with a disability or his or her supporter has any questions about the agreement, he or she should speak with a lawyer before signing the supported decision-making agreement. And then it says I the name of the adult with a disability is written in am entering into this agreement and voluntarily choose they enter the name of the supporter to be my supporter. The supporter's address is listed, their phone number and their email address. My supporter may help me with life decisions about and then there's an option to choose yes or no for each of these categories Obtaining food, clothing and a place to live, my physical health, my mental health, managing my money or property, getting an education or other training, choosing and maintaining my services and supports finding a job. Other. My supporter does not make decisions for me. To help me make decisions, my supporter may help me get the information I need to make medical, psychological, financial or educational choices, help me understand my choices so I can make the best choice for me, or help me communicate my decision to the right people. Yes or no, my supporter may see my private health information under the Health Insurance Supportability and Accountability Act of 1996. I will provide a signed release. Yes or no? My supporter may see my educational records under the Family Educational Rights and Privacy Act of 1974. I will provide a signed release.

Sandy Deppisch:

This agreement starts when signed and will continue until and there's a space to put a date or until my supporter and I end the agreement or the agreement ends by law. Sign this day, you put the month and the year. The adult with the disability signs and the printed name of the adult with the disability is listed there. It says important information for supporters when you agree to provide support to an adult with a disability under the supported decision-making agreement, you have a duty to one act in good faith. Two, act loyally and without self-interest and three, avoid conflicts of interest. Then on the back it's the consent of the supporter. So the supporter lists his or her name, says consents to act as a supporter under this agreement. The supporter signs their name and prints it. This agreement must be signed in front of two witnesses and there's a space for two witnesses to sign, or a notary public and there's a spot for the notary public to sign, and that's it. That's all that's involved in supported decision-making. So those are the two major options guardianship or supported decision-making.

Sandy Deppisch:

I might, at a later date, go into depth on some of those other alternatives to guardianship that I mentioned earlier.

Sandy Deppisch:

It just depends on how lengthy. I haven't read through all of those, so it depends how lengthy those are, but again, I will put the link below to all this information that you can download online and you can read over it so that you can make the best decision for your family. You know, having a child with a disability changes everything. It makes life just a little more. Just a little more, I guess, is the best way to say that. And when it comes to determining the future for your young adult with a disability, I think it requires a lot more. So you owe it to yourself, you owe it to your young adult, you owe it to your family to make the best educated choice that you can, and I hope this information has been helpful. Thanks for listening to the Embrace the Blessing podcast. Visit embracetheblessingcom slash podcast for show notes and links to any resources mentioned. If this has been beneficial to you, please share it with a friend or post it on your social media pages. Join me next Wednesday for more inspiring stories from people just like you.