Your young adult is approaching the age of eighteen — a huge milestone, and for many parents of kids with disabilities, one that brings both gratitude and trepidation. What are your options to support your young adult in making life decisions, big and small? How can you keep them safe — financially, socially, and otherwise — while fostering their independence as an adult?
To learn more, we reached out to Suzanne Bennett Francisco, President and CEO of Exceptional Rights Advocacy and Co-Director of the Supported Decision-Making California Advocacy Project (SDM CAP) for Disability Voices United, as well as Lisa MacCarley, attorney and founder of Betty’s Hope. We also spoke to Dr. Kristen R. Choi, associate professor and nursing chair at UCLA School of Nursing, who has been working on building the SCDD-TAP Resource Library for Supported Decision-Making, as well as Holly Matecko and Shawna Hall from Helen Sanderson Associates, who provide a training class.
Here, we take an in-depth look at the benefits of supported decision-making, and how it can help guide an individual’s support needs, goals, and autonomy.
When a young adult turns eighteen, they gain the rights associated with being an adult and all the responsibilities and expectations that come with it. If a person needs help making decisions about healthcare, work, or education, or managing financial affairs, it may be in their best interest to set up a plan of support. The plan should include who and when this support will be provided as well as documents to back up that plan so that they can be supported to the fullest, most appropriate extent while also continuing to foster their own skills and independence.
Supported decision-making is a set of practices developed as a framework to provide support in any situation where an individual needs help making decisions. Supported decision-making can be used:
It’s important to note that while using the supported decision-making framework is not required, it can help families approach whichever plan is best for their young adult with as much of their young adult’s input as possible by looking at who in their life can best support them, and what individualized tools, services, and accommodations they will need.
If no intervention is taken, attorney Lisa MacCarley tells us that some medical providers may be willing to work with parents to make care plans and provide other services once their young adult turns eighteen; however, they will need your young adult’s consent to do so, as HIPAA and privacy concerns come into play. Parents will not have a right to medical information and cannot consent to procedures once their young adult turns eighteen without a signed agreement in place.
Some ways a young adult’s advisors can help them make decisions include:
For example, if a young adult needs to decide on whether to undergo a medical procedure, they can decide that they want their parents to be part of the meeting with the doctor. The parents can assist in explaining the options in a way that the individual understands and ensure that the decision is genuinely one of informed consent, by explaining what the consequences of the decision might be.
In this way, the adult has access to a whole circle of support and might go to different people in the circle for different types of decisions. In another example, suppose a young adult would like to enter into a sexual relationship. With SDM, they can choose someone knowledgeable such as a physician or therapist to help ensure they are properly equipped with the information and supplies they need to keep themselves and others safe.
Thanks to a new bill, supported decision-making is part of California law as an option for families who want to explore their options beyond conservatorship. In September 2022, the governor signed AB 1663, which creates ways for people with disabilities to maintain their rights while still getting the support they need. The new bill recognizes supported decision-making as an option for people with disabilities to use wherever they need it, from schools to Regional Centers to hospitals, and ensures that courts consider supported decision-making and alternatives to conservatorship. AB 1663 also adds an amendment to the Welfare and Institutions Code (Sec. 16, Division 11.5), which establishes that adults with disabilities must be given the opportunity to make decisions about their lives using as many voluntary supports as they need (including supported decision-making).
Under AB 1663, any individual with intellectual and developmental disabilities is presumed competent to make their own decisions and sign documents, unless found otherwise by a court of law.
With supported decision-making, your young adult’s voice will be the focal point, so they will typically choose the team they want to help them make decisions based on their short- and long-term goals. SDM can also be used as a tool to teach decision-making skills while providing support in understanding and communicating their wants and needs.
Francisco tells us that SDM can be written into your teen’s Individualized Program Plan (IPP) or Individual Transition Plan (ITP) as a goal, or added to the notes section. Starting the planning process early will give them a chance to begin choosing their team and practice SDM before they become an adult.
Team members may include:
Once the team is established, either a formal or informal agreement can be put into place to list the individual’s wants, needs, and goals, as well as the role each member is assigned. Disability Voices United has created a helpful handbook to get you started.
Supported decision-making looks different for everyone, but in practice, it can be as simple as handwriting it onto or into legal binding documents, or attaching an SDM agreement when needed. For example, SDM can be written into an an Individualized Education Plan (IEP), Individualized Program Plan(IPP), Individualized Plan for Employment (IPE), HIPAA Authorization, Durable Power of Attorney, Advance Medical Directive, SSI Representative Payee Form, and more. Here are a few examples of tools you can use to practice supported decision-making.
A supported decision-making agreement is an informal or formal agreement that identifies the people who will support an individual in making decisions in one, or several, key areas of their life. In an SDM agreement, your young adult and their chosen supporters sign a document in which everyone agrees to support the person with their decisions. SDMAs are signed, notarized, and can be attached to legal, binding documents – such as an Individualized Education Program (IEP), a Durable Power of Attorney, a HIPAA form, or Social Security Representative Payee form. If the individual decides that they want less support, more support, need to change their circle of support, or need support in a new area, an SDM agreement can be changed right away at no cost (and no court involvement).
In some states, SDM legislation mandates a specific format of SDM agreement. However, in California, legislation honors agreements made in any form, including using video and images. AB 1663 Section 2113 of the Probate Code sets out the criteria:
An SDM agreement should contain:
Find a sample template of a supported decision-making form in the Disability Voices United Handbook and several other examples in the SDCC SDM-TAP Resource Library from UC Davis, the ACLU, and the Wisconsin BPDD.
Note that someone cannot be a supporter for an individual using SDM if they are accused of abuse under the Elder Abuse and Dependent Adult Civil Protection Act, if they have a protective or restraining order against them, if they have been removed as conservator by the court, or if they have been found guilty of abuse, neglect, mistreatment, coercion, or fraud.
A durable power of attorney is a document that allows someone to become the decision-maker for an individual in cases where they are not able to decide for themselves. It can also grant that person access to confidential information, such as medical records. If they wish, families can write their own DPA without an attorney using the form in the Disability Voices United Handbook. (You will need a witness when your young adults signs the DPA.)
MacCarley explains that the paperwork associated with setting up durable power of attorney or an estate plan can be beneficial for creating a history of an individual’s wishes. This way, if there is ever a time when the individual can’t make decisions, they have already chosen a person they trust to do that for them, and there is a record of how they’d like those decisions to be made. For example, authorizations can be created and added to a bank account, so an SDM advisor can help manage spending, pay bills, or ensure that money is being spent appropriately and that no one has infiltrated the account.
A durable power of attorney can also authorize access to information regarding the individual’s education and medical records. It can grant the ability to make decisions regarding a person’s healthcare, legal matters, and finances. You can also sign a durable power of attorney so that you can make decisions on their behalf when your young adult is not able to.
In most cases, a young adult can sign a document that allows a particular agency to share their information with you (e.g. Educational Disclosure form, Regional Center Disclosure form, IHSS Disclosure form). You will need a document or letter for each separate organization, such as the school, doctor’s office, and bank. In most cases, institutions have their own form that they like you to sign. Or you can draft a letter that explains that they want you (named individuals) to help them make decisions and therefore want them to share information with you.
If your young adult uses an ACC device and needs support communicating their healthcare needs to their doctor, a HIPAA authorization can grant you access to their medical information and allow their doctor to speak with you. (A HIPAA form alone will suffice if they only need help understanding terminology or speaking with medical professionals.)
Francisco adds that other forms of support, such as a representative payee form for SSI, can also be used by an individual with disabilities to name the person they would like to help them in making financial decisions without putting a power of attorney in place. Check out Legal Tasks to Complete before Your Child Turns 18 for more examples.
Academically, SDM can also be used when a student with an IEP reaches the age of eighteen and their educational rights are transferred from the parents directly to the them. They can sign an “Assignment of Educational Rights” to give you consent to continue involvement and make decisions in their educational program after they turn eighteen (without a formal court order).
Holly Matecko and Shawna Hall also recommend working with your young adult to create a one-page profile to share when they need to explain how they make decisions and what accommodations they might need to sign papers.
A person-centered one-page profile typically includes:
A one-page profile is a helpful way for someone to share how they like to make decisions, who they trust for support, and what helps them feel successful in decision-making. This information can then guide a supported decision-making agreement in a way that reflects the person’s values and preferences.
The most beneficial aspect of supported decision-making is that it allows the individual full independence and retention of their rights and does not involve legal proceedings. In addition, it allows individuals with disabilities to make decisions the same way other adults do: by consulting with people they trust.
For example, if a young adult needs support determining whether their IEP or Individual Transition Plan (ITP) is appropriate, they can ask you or another person to help them look it over and request any changes that might need to be made.
Individualization is another benefit: Francisco tells us that ACC devices can be personalized for a young adult who is using SDM. She says that she has had success in programming the device based on what her daughter would like to communicate and the team members she may wish to speak to or about.
Mark Woodsmall, attorney and founder of Woodsmall Law Group, adds that supported decision-making is an innovative process that we’re still learning about. “As long as everybody is serving in the same spirit, which is to move things forward positively, it can work, but it might take some additional effort,” he says.
It is critical to approach supported decision-making with an eye toward figuring out exactly what level of support your young adult will need to be successful. Supported decision-making works with all levels of support, whether an individual only needs supported decision-making or a combination of SDM with durable power of attorney or if they need SDM within a limited conservatorship. It is now recommended practice for conservators to use supported decision-making practices to ensure as much independence as possible. The goal should be that they receive the level of support they need to retain as much independence as possible while also keeping them safe.
As Francisco puts it, it’s a common misconception that “we’re going to just leave them out there floundering.” She explains, "Supported decision-making is about building a community around the person to support them where they want it.”
Supported decision-making is for everyone — in the same way that creating a person-centered plan can help a person outline their hopes and goals for adulthood, supported decision-making is intended to help an individual make a plan to determine where they can increase their independence and where they need more support. For example, an individual can provide informed consent regarding medical treatment but needs help understanding difficult terminology. Or, they can manage their money but would like advice on creating and maintaining a budget.
If a person is unable to make sound decisions independently, supported decision-making alone may not be adequate. In those rare cases, a higher level of support may be necessary, such as establishing durable power of attorney in addition to SDM, or adding the support of a limited conservatorship.
Francisco reminds us that not everyone expresses their preferences in the same way, and that it’s important to pay attention to unspoken cues and other forms of communication.
Shawna Hall shares her feelings about using SDM to live an active and interdependent life:
Many families worry about a scenario where they present their SDM agreement to a healthcare practitioner or other provider, and they don’t accept the paperwork since it is not sanctioned by a court.
Kirsten Choi admits that as SDM is still just getting going, it can be problematic to educate everyone you meet. She says, “I think in most cases, when people are looking for medical care, I do think supported decision-making has a really important role to play, I think that healthcare providers aren't quite where they need to be in terms of knowledge and understanding of this framework just yet. But we are making progress.”
The Self-Determination Program (SDP) functions as an alternative to traditional Regional Center services, where the budget typically received by the Regional Center is instead allotted to an eligible person with disabilities. Creating a person-centered plan is integral to the SDP process; identifying an individual’s wants, needs, and goals, and what services and supports they will need to reach them really drive the program. This is often done with the guidance of an Independent Facilitator, who will also help create a spending plan with the individual based on their wants, needs, and goals. For example, if a young adult would like to take dance classes, their facilitator can help them find a class that works for them and use money from the budget to pay for it.
Francisco describes SDP as “supported decision-making in a box,” and says that it can help individuals learn the skills they need to accomplish maximum independence. SDP gives a person with disabilities the added benefit of choosing who they hire and the ability to pay them more for their services. She adds that people who practice self-determination often experience a higher quality of life and are more likely to find work and advocate for their own needs.
Here are more resources to help you understand supported decision-making and how to practice it:
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