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 take a look at limited and full conservatorships; the first part of the series focuses on supported decision-making. As we make plain there, the process of establishing what level of support a person needs as they enter adulthood should always begin with supported decision-making. 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 — whether it’s supported decision-making or a combination of SDM with durable power of attorney or SDM with conservatorship.
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:
Note that being appointed conservator of the person does NOT automatically make that person a conservator of the estate. If it is determined that an individual needs a conservator of both personal and estate decisions, they will need to have someone appointed for each type, or as both.
A limited conservatorship is set up to support the needs of adults with developmental disabilities who are unable to provide for all their personal or financial needs. The disability must have originated before their eighteenth birthday, be expected to continue indefinitely, and constitute a substantial impairment. The conservator is responsible for encouraging maximum self-reliance.
A general (or “full”) conservatorship is set up for adults who cannot provide for their personal needs in terms of physical health, food, clothing, shelter, or finances. These adults often have a neurocognitive disability (such as a traumatic brain injury, dementia, or Alzheimer’s disease).
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, attorney and founder of Woodsmall Law Group, 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.
There are seven “powers” discussed in conservatorship cases:
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.)
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. The petitioner should show that alternatives such as supported decision-making have been considered.
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 is unable to afford a lawyer to represent them, the court will appoint one.
In sum, as Woodsmall puts it, “The conservatee should have an active voice throughout the process, and have as few rights removed as possible. ”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.
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. In California, among conserved adult Regional Center clients, almost 50,000 people, half of them have a conservator who is not a family member.
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. 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.
MacCarley tells us, “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.”
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.”
In a limited conservatorship, the judge will only give the conservator power to do things the conservatee can’t do without help. This may include:
The limited conservator also has a duty to help the conservatee develop self-reliance and independence, which includes providing support services, education, medical, and other services.
Special education attorney Grace Clark tells us, “A unique aspect of limited conservatorships is that they recognize that developmentally disabled adults may be developing at a slower rate than their nondisabled peers; they may not be ready to manage their finances and school decisions at age eighteen but may be able to do so at age twenty-five.” She adds that a limited conservatorship is reviewed the first year after it is granted and then every two years to ensure that the conservatee retains as many rights as possible.
Woodsmall adds that the conservatee should have an active voice throughout the process and have as few rights removed as possible; ultimately, the goal should be to end the conservatorship for a less restrictive option, if possible. When the conservatee is ready for their conservatorship to be terminated, supported decision-making agreements can be created to show the court how the young adult can be successfully supported.
Potential risks of a limited conservatorship include:
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.
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.
A general or full conservatorship is put into place for individuals who need high amounts of support in all areas of their lives. In a full conservatorship, the conservator has complete control over all aspects of the conservatee’s life. Conservatees in full conservatorships are not expected to gain new skills or become more independent over time, so a full conservatorship is often permanent.
If a 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 expresses preferences when it comes to 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.
In September 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:
In September 2022, the governor signed AB 1663. The bill “requires that alternatives to conservatorship are included for consideration in a petition for conservatorship, and requires courts to provide conservatees with information regarding the rights that they retain. Under AB 1663, courts are allowed to terminate a conservatorship without a hearing if both the conservatee and conservator agree to termination.” In essence, the new law makes it easier to end a conservatorship while putting more emphasis on supported decision-making as an alternative.
A bipartisan bill called the FREE Act has also been introduced to Congress. Its sponsors say it will reduce the risks of conservatorships by:
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.
Here are more resources to help you understand conservatorships and the responsibilities that go along with them:
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.
