Supported Decision-Making and Conservatorships 101
Your young adult is turning 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? Supporting our teens through the transition to adulthood and beyond can be a complex and often emotional topic, so we talked to several experts to dig in.
If you’d like to explore other adult-transition topics including college programs, work training, community-based programs, independent and supportive living services, public benefits, and the importance of person-centered planning, read our article on the transition to adulthood here!
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:
- supported decision-making;
- supported decision-making, combined with durable power of attorney; and
- conservatorship, limited or full.
If no intervention is taken, attorney Lisa MacCarley, who also runs Betty’s Hope, tells us that some doctors will 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.
Here, we take an in-depth look at the risks and benefits of supported decision-making and conservatorship.
Supported decision-making (SDM) is an alternative to conservatorships, where a person with disabilities selects trusted individuals to help them make decisions. 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, and 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:
- making pro/con lists,
- talking through situations or role-playing scenarios,
- attending meetings and appointments, and
- partnering with them to manage their finances.
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 safe.
How do I set up supported decision-making?
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:
- family members,
- significant others, and
- professionals or those with expertise in certain areas, like accountants or life coaches.
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.
Combining supported decision-making with a durable power of attorney
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.)
What are the benefits and risks?
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 if 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. He tells us that one risk of SDM is simply for families who struggle with bandwidth, and may have difficulty managing the program. “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 explains.
Another risk is that an individual may not receive the level of support they need to be successful. Should a person choose not to take the advice given to them, and they struggle to properly care for themselves or make sound decisions, they may not receive the level of support required to keep them safe.
However, as Francisco puts it, it’s a common misconception that “we’re going to just leave them out there floundering.”
"Supported decision-making is about building a community around the person to support them where they want it.” --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
When is supported decision-making appropriate?
Supported decision-making is appropriate whenever a person can make decisions but needs support to do so. 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.
When is supported decision-making inappropriate?
If a person is entirely unable to make sound decisions independently, supported decision-making may not be the best option for them. 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 or 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.
Supported decision-making and the Self-Determination Program
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 and crystallizing 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.
According to the California Courts, "a conservatorship is a court case where a judge appoints a responsible person or organization (called the “conservator”) to care for another adult (called the “conservatee”) who cannot care for themselves or manage their own finances. A person cannot be placed under a conservatorship unless they are deemed to “lack capacity” in some way by the court."
If a petition for conservatorship is granted, the court will appoint a conservator (also called a guardian in some states), who will make decisions on behalf of the conservatee.
There are two subtypes of conservators:
- a conservator over the person, who will make decisions regarding the individual’s personal needs, including their relationships, medical care, or education; and
- a conservator over the estate, who will handle financial matters like paying bills or managing a budget.
For young adults with developmental disabilities, the idea behind adopting a limited conservatorship is to support the individual in gaining more independence. According to Mark Woodsmall, limited conservatorships don’t need to last forever, and should be set up while “having an eye for limited power.” The conservatee should retain as many rights as possible; ultimately, the goal should be to end the conservatorship for a less restrictive option, if possible.
When a young adult is ready for their conservatorship to be terminated, Francisco says, supported decision-making agreements can be created to show the court how the young adult can be successfully supported through SDM.
What decisions can conservators make on behalf of conservatees?
There are seven “powers” discussed in conservatorship cases:
- To choose where the conservatee lives.
- To access the conservatee’s confidential information.
- To control whether a conservatee can get married, and to whom.
- To enter into contracts on the conservatee’s behalf.
- To make medical decisions for the conservatee.
- To control the conservatee’s social and sexual relationships.
- To make decisions about the conservatee’s education.
In a limited conservatorship, some of a person’s rights will be retained, while others will be granted to the conservator. In a full conservatorship, the conservatee does not retain any of the seven powers, giving the conservator complete control over all aspects of their life. In addition, a full conservatorship is often permanent. (More on this below.)
How is a conservatorship put into place?
To place a person under a conservatorship, a petition needs to be filed with the court, and all the appropriate forms need to be completed, including a notice of hearing and letters of conservatorship.
Once the petition is filed, the potential conservatee must be given notice that they may be placed under a conservatorship. They have a right to go to court, object to the conservatorship as a whole, or in part, and hire their own attorney. They will be interviewed by a court investigator to ensure that a conservatorship is necessary. Then, the court will schedule a hearing.
Establishing a conservatorship can be a long and overwhelming process, and consulting a lawyer can be helpful in navigating the ins and outs. The potential conservatee should have their own lawyer to advocate for their best interests, help them understand the proceedings, contribute information concerning their wants and needs, and make objections wherever necessary. If a family or young adult are unable to afford a lawyer to represent them, the court will appoint one.
Woodsmall advises that the conservatee should have an active voice throughout the process, and have as few rights removed as possible.
"The conservatee should have an active voice throughout the process, and have as few rights removed as possible."--Mark Woodsmall, attorney and founder of Woodsmall Law Group
For example, a conservatee may feel that they need help making medical decisions but are confident in their ability to make friends and maintain a meaningful social life.
MacCarley suggests providing the court with as much information about your young adult as possible, including reports from their Regional Center, teachers, and therapists. She stresses that not all attorneys and judges involved in conservatorship cases are fully knowledgeable about people with disabilities, and helping them get to know an individual, their abilities, and their capacities can be essential to the decision-making process.
It’s also important to note that the role of conservator can be granted to anyone over the age of eighteen, and may not necessarily be a parent. The court will conduct a criminal and financial background check on any proposed conservator, and the judge will have ultimate authority over who is appointed; they can also choose a professional to take the position.
Benefits of limited conservatorship
Limited conservatorships can be beneficial in protecting and supporting your young adult in the areas of their lives where there is a need, while also giving them independence and control whenever possible.
MacCarley tells us that “the goal is to give the young adult as much freedom as possible, to give them the greatest opportunity to live their most normal, natural lives ever.”
When it comes to establishing a limited conservatorship for young people who are not able to make sound decisions in all areas of their lives, the ultimate goal, as MacCarley puts it, should be that they find “as much independence and the ability to self-actualize as possible over the course of their lifetime.”
Risks of limited conservatorship
- A conservatee has some of their rights taken away, and the decision-making in those areas will be the responsibility of another person, which can sometimes result in a conservatee’s wishes not being taken into account.
- Some conservatorships are contested and can look similar to custody battles, resulting in expensive court cases.
- Once court oversight is instituted, it can be difficult and complicated to remove it.
According to Linda Kincaid, MPH and co-founder of Coalition of Elder and Disability Rights (CEDAR), there have been cases where a Regional Center has successfully petitioned the court to replace a parent as conservator with a public guardian. There have even been a few cases where family members have been restricted or even prevented from visiting their adult family members. The conservatee or their family may also be required to pay the guardian’s fees.
Francisco tells us that sometimes conservatorships are limited only in name, such as in the case of Marie Bergum. A person may have all of their decision-making powers stripped from them without being put into a full conservatorship. Kincaid also cautioned that conservatees do not always have access to the court to advocate for themselves.
When is a limited conservatorship appropriate?
Conservatorships are designed to support people who can’t independently care for themselves. For example, a limited conservatorship can be helpful for individuals who need medical care but are unable to process or understand medical terminology or who are unable to communicate independently with their doctors.
When is a limited conservatorship inappropriate?
MacCarley tells us that conservatorships are inappropriate “when someone needs temporary assistance due to an emotional crisis or trauma.” She adds that any cases where the person can create and sign estate plans or powers of attorney may also be inappropriate: “Anytime you can help someone outside of court intervention, a conservatorship is inappropriate.”
Benefits and risks of full conservatorship
Limited and full conservatorships share many of the same risks and benefits. If the conservatee lacks capacity in all areas, a full conservatorship may be beneficial by allowing the conservator to care for them and act in their stead in important matters. However, this also puts a conservatee at risk of their wants and needs being unheard, or of being taken advantage of by a conservator who isn’t taking their whole self and best interests into account.
When are full conservatorships appropriate?
A full conservatorship is put into place for individuals who lack capacity and need high amounts of support in all areas of their lives. Conservatees in full conservatorships are not expected to gain new skills or become more independent over time. Therefore, a full conservatorship is often permanent.
When are full conservatorships inappropriate?
If the conservatee has the capacity to make independent decisions in any area, then a full conservatorship is likely not appropriate. For example, if an individual needs support with their medical care, but has the capacity to choose where they live or who they socialize with, then a limited conservatorship or another less restrictive option may be a better fit.
Conservatorships may also be inappropriate when a person’s capacity is being contested. According to Woodsmall, “when a person has capacity, the person seeking a conservatorship might not have the best intentions.” For example, if the potential conservator is petitioning the court to gain control over a person’s assets when that person can make sound financial decisions, the potential conservator may be interested in their own gain. He also says that the court investigator, Regional Center, and loved ones can help a court decide if their young adult really needs a conservatorship.
Before a conservatorship can be put into place, the law requires that alternatives such as durable power of attorney or supported decision-making be considered. The National Guardianship Association recommends families try supported decision-making before petitioning for a conservatorship.
How conservatorships are changing
On September 30th, 2021, California Governor Gavin Newsom signed Assembly Bill 1194, otherwise known as the #FreeBritney Bill, which intends to reduce the risk of abuse to conservatees by increasing accountability and transparency standards for conservators.
The new law:
- ensures that a conservatee can choose their own counsel,
- prohibits conflicts of interest concerning the conservator’s finances,
- requires nonprofessional conservators to receive training on financial abuse and register with the state’s oversight agency,
- requires conservators to disclose their fees online, and
- increases enforcement actions against conservators who do not act in their ward’s best interest.
A bipartisan bill called the FREE Act has also been introduced to Congress. Its sponsors say it will reduce the risks of conservatorships by:
- giving a conservatee the power to petition for a public conservator,
- assigning conservatees independent caseworkers,
- requiring states to disclose the number of people in conservatorships to the federal government, and
- requiring that conservators disclose their finances.
Critics of the bill say the FREE Act provides more funding to states for conservatorships, which “empowers professional guardians.” They also state that the bill doesn’t go far enough to protect people with disabilities.
The proposed Guardianship Accountability Act would create a set of best practices for states to use, share training materials with those involved in conservatorship cases, and offer a database of conservatorship alternatives.
MacCarley encourages parents to become active voices in the process and to share their opinions with their representatives by visiting findyourrep.legislature.ca.gov and www.house.gov/representatives.
What are your greatest hopes as your young adult enters adulthood? What are your biggest worries? We’re here to support you however we can!