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. Here, we’ll focus on supported decision-making; the second part of the series will look at limited and full conservatorships.
If you’d like to explore other related topics including the importance of person-centered planning, college programs, work training, community-based programs, independent and supportive living services, and public benefits, read our article on the transition to adulthood.
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 or taking care of themselves, it may be in their best interest to set up one of the available care options so that they can be supported to the fullest, most appropriate extent while also continuing to foster their own skills and independence.
Some of these options include:
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 Durable Power of Attorney in place.
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. To learn about limited and full conservatorships, read our article, Conservatorships in California.
Supported decision-making (SDM) is a process in which a person with disabilities selects trusted individuals to help them make life decisions. Suzanne Bennett Francisco, along with attorney Jonathan G. Martinis, put it plainly in their article, “Supported Decision-Making Teams: Setting the Wheels in Motion”:
“If you think about it, [supported decision-making is] just a fancy way to describe the way we all make decisions. We all get help from friends or family members when we make decisions. We may ask our brother, the accountant, for financial advice or our sister, the doctor, to help us understand medical jargon.”
Some ways a young adult’s advisors can help them make decisions include:
For 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.
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.
A durable power of attorney is a document that allows someone to become the decision-maker for an individual in cases where they become incapacitated. It can also grant that person access to confidential information, such as medical records.
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.
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.
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.
For example, if your young adult uses an ACC device and needs support communicating their healthcare needs to their doctor, filing for power of attorney with a HIPAA authorization included 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.)
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. Whether an individual needs supported decision-making or a combination of SDM with durable power of attorney or SDM with limited conservatorship, 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. For example, a person who has never made their own decisions or responded to prompts to do so would likely not be an active participant in the process. In those 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.
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. In addition, studies have shown that women in SDP are better able to recognize and resist abuse.
To learn about what it means to have a limited or full conservatorship, read our article, Conservatorships in California.
