Restrictive guardianships deserve increased scrutiny from policymakers
in order to ensure that disabled people are not denied their
reproductive rights.
A woman with Down syndrome draws on a community chalkboard at Lummus
Park in Miami Beach, Florida. (Getty/Jeffrey Greenberg/Universal Images
Group)
Authors: Emily DiMatteo, Vilissa Thompson, Osub Ahmed, Mia Ives-Rublee, Ma’ayan Anafi
Authors’ note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.
Introduction and summary
The recent U.S. Supreme Court decision to overturn Roe v. Wade undermines the reproductive autonomy of women in the United States in key, dangerous ways. For disabled women and other disabled people who can become pregnant, the implications are particularly grave, and multimarginalized disabled women will be disproportionately affected.1 Even with the protections afforded by Roe v. Wade, disabled women often faced disability-based discrimination in abortion access and reproductive health care more broadly.2 Now more than ever, policymakers must work to protect their right to bodily autonomy.
Defining guardianship
Guardianship provides a person the legal authority to make decisions for someone deemed ‘incapacitated.’3 As a recent Center for American Progress report illustrated, such an arrangement “prevents disabled people and others from exercising their full reproductive freedoms.”4 While states may use different terminology when discussing guardianships, the arrangements can be generally organized into two broad categories:
- Guardianships that are focused on an individual, which involve the guardian making personal affair choices, such as health care, living arrangements, and/or other legal decisions, on the individual’s behalf
- Guardianships that are focused on property—called conservatorships in some states—involve the guardian handling an individual’s financial matters, assets, and benefits5
This report focuses on the guardianship of individuals, particularly as it relates to reproductive rights and autonomy.
In 2021, pop star Britney Spears testified in court in her bid to gain independence from an almost 14-year conservatorship: “I want to be able to get married and have a baby. I was told right now in the conservatorship I am not able to get married or have a baby.”6 Spears’ conservatorship was terminated in November 2021. (In California, the term guardianship is only used for minors; thus, Spears’ case was called a conservatorship even though both her person and estate were reportedly controlled.)7 Although her situation is unique in a number of ways and her medical history is largely private, Spears’ experience—and the resulting #FreeBritney movement—helped bring public attention to guardianships and spotlighted their stigmatizing and invasive impacts on disabled people’s lives.
At least 1.3 million disabled people are under guardianship in the United States.8 However, few comprehensive statistics exist to illustrate the pervasiveness of guardianships, and there are few guardrails to ensure that disabled people retain their legal rights. In 2021, Sens. Elizabeth Warren (D-MA) and Bob Casey (D-PA) sent a letter to the U.S. Department of Health and Human Services urging it to increase oversight and improve data: “[A] lack of resources for court oversight and insufficient due process in guardianship proceedings can create significant opportunities for neglect, exploitation, and abuse.”9 Indeed, through news interviews, academic articles, and storytelling advocacy projects, disabled women have made clear that guardianship is one of the significant tools used to suppress their ability to make decisions about their reproductive health, such as obtaining and utilizing contraceptives,10 receiving sexual education,11 and accessing abortion care.12
As part of CAP’s series on reproductive justice for disabled women, this report analyzes how guardianships can significantly impinge on a disabled individual’s reproductive rights. Specifically, it discusses the process of initiating guardianships and its legal shortcomings, the lack of guardianship data currently available, abuses that can occur under guardianships, and alternatives to guardianship. The report also provides policy recommendations for the federal and state governments and nonprofit organizations that provide services to individuals with disabilities. Federal and state-level policymakers must increase oversight; develop a set of basic rights for people under guardianship; provide funding for training and education for courts, attorneys, and parents; adjust transitional planning efforts; and improve data collection. Organizations must assist their clients with submitting guardianship-related Department of Justice (DOJ) complaints, start or increase the collection of relevant data, and improve outreach to marginalized populations, including communities of color and immigrants.
Emma’s story
Protecting disabled people’s legal rights means allowing them to make their own reproductive decisions. Emma Budway, a nonspeaking autistic woman in Virginia, is working to transition out of her guardianship once she receives an assistive technology device. When the authors recently interviewed her with the communication assistance of her guardian, Emma was passionate about using alternatives to guardianship as she works to transition out of her current arrangement: “I have the ability and agency to make decisions about my life. I am in full control. For example, I take a birth control pill for cessation of menstruation; that is my decision.”13
The legal process of initiating guardianships
The process of initiating a guardianship typically begins after a family member or social worker—depending on the disabled individual—files a petition in court stating that the individual is incapacitated and requires a guardian.14 Different states define incapacity differently—for example, Virginia’s definition, along with those of other states, notes that poor judgment is not sufficient evidence for incapacity.15 It is usually defined in the context of mental capacity or decision-making ability.16 Guardianship proceedings often treat capacity as a static concept, meaning that “if one doesn’t have capacity for everything, then one doesn’t have capacity for anything.”17
Once the guardianship petition is submitted, many states—although not all—take steps to ensure that the individual understands the petition.18 Although definitions of incapacity vary among states, many evaluate a person’s functionality and cognition—and the necessity of a guardianship—based on potential risks and harm.19 For example, several states decide that a person lacks functionality when they are believed incapable of upkeeping basic levels of health and safety.20 An individual then undergoes a capacity evaluation and is appointed legal representation, sometimes in the form of a court-appointed guardian ad litem.21
Richard LaVallo, legal director of Disability Rights Texas, notes a large problem with this process: While a person with a disability needs a lawyer that will “honor the expressed wishes of their client,” the reality of guardianship cases is often that “lawyers don’t represent what [a] person with disability wants but instead superimpose the best interest standard.”22 The best interest standard does not prioritize the disabled person’s wishes but instead what is considered best for that individual.23 This process can be problematic, because once a guardianship is granted, most courts remove many—if not all—of an individual’s legal rights to make their own decisions, including their ability to hire their own lawyer. Instead, the courts appoint a guardian to make such decisions on their behalf, leaving the disabled person with little to no recourse to exercise personal autonomy in nearly all aspects of decision-making.24
The complicated process of initiating a guardianship and, in particular, assigning legal representation is corroborated by Emma Budway, who described her experience with a guardian ad litem in an interview with the authors. The guardian ad litem claimed that Emma should not retain her constitutional right to vote while under guardianship, a decision she believes her guardian ad litem made because he was unfamiliar with her form of communication.25 Fortunately, Emma and her family had some resources at their disposal to assist in educating him. However, this uninformed and egregious initial determination, based on a lack of knowledge about disability or potentially even on bias, demonstrates the need for more education for both potential guardians and guardians ad litem so that ableism is not weaponized to hinder the rights of a person under this process. Emma’s experience illustrates how easily ableism can discredit a disabled person’s ability to participate meaningfully in society.
The school-to-guardianship pipeline
Many students with intellectual and developmental disabilities enter the school-to-guardianship pipeline through high school transition planning. Under the Individuals with Disabilities Education Act (IDEA) of 1990, students leaving high school are supposed to work with schools and their parent or guardian to go through a transition period during which rights are transferred directly to the student.26 However, this “transfer of rights” process often results in school officials suggesting that parents become legal guardians of their young adult children.27 According to some studies, almost 60 percent of people with intellectual and developmental disabilities ages 18 to 22 who receive publicly funded services have guardians and report that schools often present guardianship as the main or default option to support young adults in decision-making.28 Some school professionals may not provide parents any information on alternatives to guardianship.29
When guardianship is explored at this juncture, school officials and parents are often unaware of the potential long-lasting consequences of guardianship.30 For instance, a disabled student under guardianship loses their rights to make decisions about their future education and plans after high school, which counteracts IDEA’s promotion of self-determination and independence.31 Parents who speak English as a second language or who are from low-income and marginalized communities may have even more difficulty accessing the necessary information about less restrictive alternatives to long-term guardianship.
Laws regarding guardianships
There is no federal legislation on guardianship. And while guardianship law varies across the country, states’ general approach is largely similar. According to the National Center on Law and Elder Rights, almost every state notes that guardianship should only be used as a last resort when alternatives do not suffice and a person is found to be incapacitated.32 The majority of U.S. jurisdictions—84 percent—require courts to consider less restrictive alternatives to guardianships; about 22 percent specifically mention supported decision-making as an alternative—an option explored in more detail later in this report.33 There are multiple types of guardians: family members, state-managed public guardians, and privately managed guardians. In some states, professional guardians such as private individuals or organizations charge fees and are not typically subject to the same standards as public guardians who undergo training.34 In Virginia, for example, most individuals under guardianship have private guardians, which can include family members, who do not have to meet the same standards as the Virginia Public Guardianship and Conservator Program.35
Although courts are required to consider less restrictive alternatives, such as limited guardianships or supported decision-making, they typically impose full guardianships, which are often “overbroad and unwarranted.” In full guardianships, the guardian makes all decisions for the person, including but not limited to decisions around health care, money, and lifestyle choices.36 According to Virginia guardianship data provided to CAP by the Supreme Court of Virginia’s Office of the Executive Secretary, an average of 96 percent of guardianships granted from 2015 to 2021 were full guardianships.37 It is also rare that an individual’s rights are restored or that a guardianship ends—in fact, guardianships usually terminate at the end of an individual’s life.38 Some states, including Texas, allow for automatic reviews of guardianships and have instituted safeguards to encourage restoration of rights, but it is uncommon for an individual to be able to end their guardianship and get their fundamental rights restored.39 According to Virginia’s guardianship data, more than 4,000 guardianships were granted in the state between 2015 and 2021—and only 10 people were restored to capacity.40
Other legal arrangements, including health care powers of attorney, allow individuals to make decisions with disabled people directly; in many states, however, there is ambiguity about the authority of these agents compared with that of guardians.41 In Virginia, options such as powers of attorney can only be used when the disabled individual has capacity to sign a contract, something not possible under guardianship.42 Moreover, guardians often have full access to an individual’s health records, which enables them to make reproductive and other health decisions for the person under guardianship. Guardians can also make decisions for individuals about who they can interact with—despite laws prohibiting this—due to a lack of court oversight and sometimes guardians’ poor understanding of the law.43 This lack of oversight and enforcement mechanisms can infringe on individuals’ rights to engage in intimate and nonintimate relationships and friendships as well as their ability to integrate into their communities.44
Thirty-six states have passed the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA), which created reforms such as the right to social interaction, expanded procedural rights, and clear decision-making standards.45 However, the UAGPPJA also makes it easier to transfer guardianships between states, which may result in keeping people under guardianships for longer periods of time.46
Data on guardianship in the United States
Outside of academic studies and individual interviews, comprehensive and national data on guardianships—both regarding the population under guardianships and details such as filing rates—are largely unavailable. Studies have found people with intellectual and developmental disabilities to be at higher risk of entering into guardianship, although not all people under guardianship have such disabilities.47 Other communities at risk for guardianship include but are not limited to people with mental health disabilities and dementia.48 Many reports have cited the lack of guardianship data as an impediment to reform,49 with the Fourth National Guardianship Summit identifying the need for each state’s highest court to collect “timely guardianship data.”50 The National Center for State Courts has corroborated this need and put forth National Open Court Data Standards and specifically recommended the collection of data elements for guardianships and conservatorships.51 Data on race and ethnicity in particular are lacking: When the authors requested these data from Texas and Virginia, they were told it is either not collected or that disability service providers do not usually report it to the state. The authors focused on Texas and Virginia because in 2015 Texas became the first state to introduce alternatives to guardianship, while Virginia passed alternatives in 2020 and has a recognized model for public guardianship. The states are also home to the two women interviewed for this report.
This report analyzes National Core Indicators (NCI) data, one of “the only sources of nationwide data on people with [intellectual and developmental disabilities] and guardianship” in both the weighted national average and within Virginia and Texas.52 There are caveats to these data—the NCI collect them by surveys in participating states to better understand people with intellectual and developmental disabilities who receive public services from developmental disability state agencies.53 The main responses from adults under guardianship come from surveys completed in person, meaning that some participants responded “don’t know.” This may be the case, for example, if someone does not know the type of guardianship they are in. There is also a potential risk of a guardian affecting how a participant responds if the participant lives with them. Additionally, as state participation is voluntary and states use slightly different sampling strategies, the weighted national average cannot be considered nationally representative.54 However, the NCI data still provide insight into populations with intellectual and developmental disabilities under guardianship across the United States, especially because it does collect data on race and ethnicity.
Previous analyses of NCI data note that among disabled individuals with guardians, Black people were more likely to have a public guardian than white or Hispanic people.55 The 2018–2019 in-person survey respondents under guardianship were less likely than the respondents without guardians to make decisions regarding where to live, who to live with, and their daily schedule.56 People under guardianship were also more likely to live in group residential facilities than in their own homes.57 In fact, respondents that lived in their own homes were significantly less likely, across various race and gender backgrounds, to report being under guardianship.58 This might suggest a higher possibility of community integration for people not under guardianship—something required under the U.S. Supreme Court’s ruling in Olmstead v. L.C.59 Additionally, because very few individuals under guardianship live in their own homes, and because so many often have a family member as their guardian, they may lose autonomy over their sexual rights—ranging from the right to engage in relationships to the right to have sex.60
NCI averages from 2016 to 2019, as well as state data from Texas and Virginia, show that people under guardianships are much more likely to be in a full guardianship than a limited guardianship. The NCI average in 2018–2019 was 33 percent of individuals in full guardianships and 6 percent in limited guardianships.61 This is consistent with literature reporting that guardianships are structured more frequently to take away all the person’s rights rather than being more targeted partial guardianships.
As described throughout this report, the access that people in guardianships have to reproductive health care is often legally overseen or controlled by guardians. However, some states—such as Texas—have made efforts to shift decision-making power over reproductive health and rights to the individual under guardianship. While it is difficult to establish causality, outcome data for people with intellectual and developmental disabilities, as captured by the NCI, indicate an interesting correlation between a state’s concerted shift to comprehensive shared decision-making arrangements and its reproductive health outcomes, such as rates of Pap smears and mammograms. For example, available data from the NCI show that Texas and Delaware—which both codified supported decision-making policies into statute in 2015 and 2016, respectively—had among the highest percentages of women with intellectual and developmental disabilities who had received either a Pap smear or mammogram in the past two years.62
Texas’ Guardianship Abuse, Fraud, and Exploitation Deterrence Program
The Texas Guardianship Abuse, Fraud, and Exploitation Deterrence Program (GAFEDP) was created in 2019 to review and monitor guardianship cases with a particular focus on addressing harms and abuse occurring under guardianship. Although not operational in all counties in the state, the program has reviewed more than 46,000 guardianship cases.63 Data in a GAFEDP report mirror many of the NCI data findings. More than two-thirds of current active guardianship cases in Texas involve people appointed between ages 18 and 44, with a fairly even balance of men and women. Most cases are guardianships of the person. The GAFEDP collects data on the reason for guardianship reported in petition filings, finding that almost 70 percent of all cases reported intellectual disability as the reason for guardianship, along with about 10 percent of cases due to aging issues and about 8 percent due to mental illness. The vast overrepresentation of people with intellectual and developmental disabilities under guardianship is consistent with previous research, and the GAFEDP provides a model for other states to study the reason for guardianship among active guardianship cases. More than half of individuals under guardianship live with their guardian; other common living arrangements include residential facilities such as group homes or nursing homes.
Only 4 percent of individuals live in their own home, which again supports the possibility that guardianship might impede independence and integration into the community. Finally, a large majority of guardians are related to the individual under guardianship, and they are most commonly a parent.
Denial of rights and perpetuation of harms and abuse under guardianship
Pervasive beliefs about a lack of reproductive decision-making capacity among disabled people—coupled with the disturbing historical inclinations to control the fertility and reproduction of disabled women and people who can become pregnant that persist to this day64—make the topic of reproductive health care access and sexual relationships among people with disabilities especially complicated and fraught. Adding guardianship to the equation exacerbates serious concerns about bodily autonomy and the systemic denial of reproductive rights and privacy.
Guardianships can be helpful in certain, carefully prescribed circumstances. However, when it comes to accessing reproductive health care or deciding to enter into a healthy sexual relationship, guardianship arrangements are inherently problematic. As Sam Crane, the legal director of Quality Trust for Individuals with Disabilities, explains:
Guardianship can take away a person’s right to consent to sexual relationships and retroactively determine that sexual relationships are nonconsensual. It’s also been used to take away people’s ability to make private, enforceable health care decisions because the person under guardianship doesn’t have the right to privacy with their health care information.65
Indeed, allowing a guardian to make fundamental decisions—such as the decision to procreate, prevent pregnancy, or obtain an abortion—on behalf of the individual under guardianship infringes on several constitutional rights, including the right to due process and other fundamental rights to privacy.66
Guardianship has serious implications for the autonomy of disabled people in reproductive health decisions. In many cases, the guardian’s role includes making health care decisions for an individual or helping the individual make such decisions, ranging from scheduling doctor’s appointments to undergoing invasive surgical procedures.67 Eight states have no statutory restrictions about guardianship health care decision-making,68 some states require court approval for certain critical health procedures, and others prohibit the guardian from consenting to certain invasive procedures on behalf of the individual. Nine states restrict a guardian’s authority to consent to abortion care on behalf of the individual, and most others require court approval for procedures such as abortion, sterilization, and psychosurgery.69
State laws that require consent from individuals remain ineffectual or even harmful due to procedural and implementation barriers. As noted by the American Bar Association, “The real progress in guardianship reform lies in turning good law into good practice.”70 For instance, some states require that guardians not only consider but center the wishes and preferences of the individual under guardianship in reproductive decision-making.71 Realistically, however, some guardians may not understand how to adequately involve the individual in this process or may choose to ignore this requirement altogether. Furthermore, the repercussions for guardians who fail to abide by a legal requirement to involve an individual in decision-making are typically not outlined within law. Procedurally, there are also major gaps in actualizing the intent of past court holdings: For example, judges in many states are permitted to waive the requirement for individuals under guardianship to participate in court proceedings, which conflicts with efforts to ensure that the individual is present so that a judge can consider their preferences and/or lived experiences as part of rulings.72
Forced sterilization
People under or at risk of guardianship face an additional threat to their reproductive freedom: the possibility of state-sanctioned forced sterilization.73 The National Women’s Law Center recently released a report showing that state-sanctioned forced sterilization of disabled people is allowed in 31 states and Washington, D.C.74 These laws allow another individual—most commonly a legal guardian—to petition a court for the sterilization of someone who is purportedly unable to provide informed consent, claiming that being sterilized is in that person’s best interest.75 These laws—which first emerged in the 1970s but have been adopted as recently as 2019—have proliferated under the guise of protecting disabled people and sterilizing them for their own good.76 In reality, they enact trauma and violence on their bodies and continue an ugly legacy of forcibly sterilizing disabled people, especially disabled people of color and disabled poor people.77
Even states that do not have explicit forced sterilization laws fail to affirm disabled people’s rights to make decisions about sterilization. Two states prohibit forced sterilization but do so in a manner that prevents some people under guardianship from accessing voluntary sterilizations.78 Other states do not have specific guidance on forced sterilization, and it is unknown whether guardians in these states are using their decision-making powers to get this procedure for people under guardianship without any judicial review.79
In states with explicit forced sterilization laws, forced sterilization is often built into guardianship structures. In about half of states with forced sterilization laws, the guardianship statute itself lays out when and how a guardian can petition a court for forced sterilization.80 In other states, forced sterilization laws exist independently and could apply both to those who are under guardianship and those who are not.81 Even in these states, however, it is likely that these laws primarily affect people under guardianship; they apply specifically to people who are deemed unable to make their own decisions about sterilization, a judgement that overlaps closely with the finding of incapacity used to place people under guardianship.82
In many states, people under guardianship who are subjected to a forced sterilization hearing have few procedural protections. In some states, a forced sterilization hearing can proceed even if the person under guardianship is not present—and even if they are unaware of the hearing.83 Some states have stronger procedural protections, although judges do not always follow the requirements in practice. Ultimately, however, procedural protections do not transform a forced sterilization into a voluntary one: No matter how strong the procedural protections are, these laws enable the violence of forced sterilization, empowering judges to make decisions regardless of the wishes of people under guardianship.84
GAFEDP reviews of guardianships in Texas
In fiscal year 2021, GAFEDP reviews found 1,042 deceased people under guardianship whose cases had not been closed, and almost one-third of reviewed cases were missing annual reports.85 Almost 40 percent of reviewed cases were out of compliance with guardianship laws.86
Examples of specific incidents reviewed include an individual under guardianship who expressed medical concerns only to have their guardian refuse to seek medical care and use so-called “home remedies” instead; an individual who passed away after improper medical care from their guardian; and an individual who was returned to the care of a guardian who was previously removed due to neglect and exploitation.87 Such findings in Texas, only brought to light through the GAFEDP’s case audits, raise alarming concerns about the status of current guardianship cases within the state and in states that do not conduct audits.
One of the most disturbing aspects of guardianships is the haphazard oversight of those who act as guardians. This inattention creates room for pervasive and severe neglect, abuse, and harm. In some instances, a court-appointed guardian can prevent a disabled person’s family and loved ones from seeing them.88 States not doing due diligence in observing the care of people under guardianship can perpetuate the potential for negative impacts on their quality of life and personal safety.
A recent headlining story highlights the way disabled people under guardianships are exploited medically, physically, financially, and socially. In the heart-wrenching case of Bonnie Apple, featured in The New York Times, Apple’s alleged neglect by her guardian was so severe that she almost died from starvation.89 Although this may seem to be an extreme case, any abuse of power by guardians—whether court-appointed or a family member—has equally devastating effects on a person’s life. What these stories make clear is how vulnerable a person under guardianship becomes to someone with ill intentions surrounding their very livelihoods, as well as the lack of power they have to protect themselves and regain autonomy. Guardianships strip a person of their right to live their own life—to voice what their lives can and should look like. Once a person no longer has the legal right to state concerns or protest a decision made on their behalf, the erosion of their personhood has begun.
Supported decision-making and state laws
In light of the harms and suppression of rights under guardianship, less restrictive alternatives are needed. Supported decision-making is an identified alternative to guardianship. It is defined as “a series of relationships, practices, arrangements, and agreements, of more or less formality and intensity, designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life.”90
Skye Marsili, a woman with Down syndrome in Virginia who recently transitioned out of a guardianship into a supported decision-making agreement, appreciates that she is in full control of her decision-making and uses her circle of relationships as she navigates young adulthood. She shared: “[My supporters] help me with my feelings and living skills … with happiness, fun, family, smiles … romance—I absolutely love that … I talk to them about it privately because it’s not about them. I know they are trying to help me.” 91 Skye’s former guardian, her mother, noted that Skye’s guardianship was terminated when she reached age 18, and she started using supported decision-making after participating in a state pilot project, discussed below. As individuals transition out of guardianships into these less restrictive arrangements, former guardians must adjust too. A key point Skye’s mother made as she adjusts to being a support for her young adult daughter is the importance of giving Skye space to be independent and not stifling life lessons: “So I think that it’s important, to not—even when you’re not legally the guardian, you don’t act like the Guardian with a capital ‘G.’ She’ll make mistakes just like all of us make mistakes and hopefully they won’t be harmful. … Part of growing up is making mistakes and learning from that.”92 This intentional mindset illustrates the respect that exists between Skye and her mother and how that respect fosters a strong sense of trust and enables the young adult to share what she wants to with her mother without judgment or dismissal.
Supported decision-making arrangements center the disabled person and allow them to decide their goals, the people in their life they trust, and who they can go to for advice on certain topics.93 There is no one-size-fits-all model; supported decision-making arrangements can be used among different people in different circumstances.94
Previous studies have considered individuals with psychiatric disabilities who use supported decision-making arrangements in conjunction with psychiatric advanced directives to express preferences about treatment and communication.95 Other research on guardianships has shown that “overly restrictive guardianship regimes” may correlate with decreased self-determination and overall health.96 For example, people with intellectual and developmental disabilities without guardians have been found to be more likely to live independently, socialize in the community, and have a paid job.97 Supported decision-making has been implemented internationally in countries such as British Columbia, Canada, which adopted a form of supported decision-making that went into effect in 2000.98
As the practice continues to gain traction in the United States, supported decision-making “has shown promise to increase self-determination and quality of life.”99 The U.S. Administration on Community Living has funded projects to study and promote awareness of supported decision-making, including the National Resource Center for Supported Decision-Making.100 The National Guardianship Association has stated that supported decision-making “should be considered for the person before guardianship.”101 As empirical research on supported decision-making continues, it is key to note that there is minimal empirical evidence in support of guardianship.102
Several states have conducted model projects on supported decision-making to study its effects in practice.103 Although such model projects usually include a relatively small number of participants, their results are still helpful in understanding how supported decision-making can be used in practice. The Arc of Northern Virginia’s model project, which began in 2019, helped participants with intellectual and developmental disabilities create supported decision-making agreements with identified supporters. The project also involved education and training outreach to more than 2,000 disabled individuals, professionals, and their families.104 Participants reported increased independence, self-determination, and improved decision-making skills.105 Another model project in Massachusetts found that supported decision-making was most commonly used in health care and financial decisions, with results including increased “self-esteem and self-advocacy.”106 One participant’s guardianship was even discharged after their participation.107
States can implement supported decision-making legislation in different ways, such as requiring specific forms of supported decision-making arrangements or providing guidance for medical professionals to recognize the system.108 Some states, including Texas, Delaware, and Washington, D.C., require a written supported decision-making agreement form in order for the arrangement to be legally recognized.109
State examples of supported decision-making
In 2015, Texas became the first state to statutorily recognize supported decision-making as an alternative to guardianship and later expanded the law to include safeguards against abuse.110 The three-pronged legislation was intended to decrease unnecessary guardianships by requiring courts to find “clear and convincing evidence” that alternatives to guardianship are not possible.111 It also includes training for attorneys working on guardianship cases to learn about alternatives to guardianship in addition to supports and services.112
Virginia amended its guardianship law in 2020 to require guardians ad litem to explore supported decision-making agreements as a less restrictive alternative to guardianship.113 Virginia was also one of the first states where a U.S. court ordered supported decision-making as an alternative to guardianship, when, in 2013, Jenny Hatch argued that the loss of her right to work and live in the community because she was under a guardianship was a violation of the Americans with Disabilities Act of 1990 (ADA).114 The new law, which was passed in 2020, specifically requires a school-aged person between the ages of 17 1/2 and 21 who is potentially vulnerable to have their guardianship continue into their adult life and to have their individualized education program (IEP) reviewed and report submitted to the court as part of evaluating the person’s capacity.115 Additionally, the Virginia Department of Education is required to provide information on supported decision-making and other alternatives in IEP meetings to address the school-to-guardianship pipeline.116
Policy recommendations
Federal policy recommendations
Federally recognize supported decision-making
In line with the findings from the Fourth National Guardianship Summit in 2021, the federal government should recognize supported decision-making as a reasonable accommodation under the ADA.117 This would allow different providers, from doctors to banks, to recognize supported decision-making agreements.
Create a federal bill of rights for people under guardianship
Congress should pass legislation to create a national bill of rights, similar to state bills of rights, for people under guardianship.118 Disability Rights Texas suggests that the bill should use the language “person under guardianship” instead of “ward.”119 The bill of rights should include specific rights to sexual expression and autonomy over reproductive health decisions in which the individual consents, not their guardian. When making health decisions, especially reproductive health decisions, the individual should be able to request private communication with medical professionals without interference from their guardian.120 Medical practitioners and professionals will need to be trained to understand how an individual uses alternatives to guardianship when making reproductive health decisions. Additionally, guardians should be required to get court approval to restrict or modify visitation for the individual under guardianship.121 Lastly, a bill of rights must be enforceable; it must allow disabled individuals the right to their own attorney separate from the guardian’s attorney and give them the ability to sue either the state or guardian for any violation of rights.122
Collect comprehensive data
Despite some data on people with intellectual and developmental disabilities from the NCI, more systematic analysis and data collection are needed to better understand the relationship between guardianship, race, and ethnicity. Additional points of data collection should include gender identity, living situation, age, and reason for guardianship. Because the current data available largely include people with intellectual and developmental disabilities, efforts to identify other disability populations at risk for guardianship—including those with mental health disabilities—should be prioritized. The DOJ and the Department of Health and Human Services should provide guidance and technical assistance to state agencies on best practices to collect and analyze these data. Without accurate data that specifically capture multimarginalized communities under guardianship, reforms cannot be comprehensively advanced.
Create court improvement plans
Congress should pass legislation that creates a court improvement program around guardianships and supported decision-making similar to the Omnibus Budget Reconciliation Act of 1993,123 which approved Public Law 103-66 to improve child welfare. The program could provide state courts with grant funding to improve data collection and provide training to staff on guardianship, supported decision-making, and disability rights. Federal data could assist states in improving their processes and increasing reviews to help reduce abuse, neglect, and misuse.
Provide transition services
From 2016 to 2018, the percentage of men and women in full guardianship was higher in lower age brackets (ages 18 to 34) than higher age brackets (ages 35 to 74) across race and ethnicity in Texas, Virginia, and in the NCI average.124 This supports the research findings that many people with intellectual and developmental disabilities enter into guardianship at younger ages during transitions out of high school.125
The federal government should therefore create guidance under the IDEA to improve transition planning by better educating school personnel on guardianships, its uses and forms, and the alternatives, including supported decision-making. The IDEA’s prioritization of utilizing the least restrictive settings should still be deemed mandatory for any transition plan.126 The District of Columbia Public School system prioritizes transitional services that help divert individuals from guardianship by including information on supported decision-making during transition services for students and their families.127 Practices such as this could serve as a model for other states to address the school-to-guardianship pipeline through the implementation of alternative arrangements directly into the transition process.
Additionally, the Administration on Community Living should continue to fund and expand initiatives such as Youth Voice, Youth Choice that include training for youth ambassadors to raise awareness about how alternatives to guardianship work in practice.128 These programs provide families and individuals with disabilities examples of how to create transition plans that fit students’ needs and ensure that they maintain as many rights as possible.
State policy recommendations
Reform guardianship training
State governments should mandate training about alternatives to guardianship for guardians ad litem, attorneys, and judges involved in guardianship cases. Trainings should include how alternatives can be possible for people with different types of disabilities and how to best evaluate options for people at risk of guardianship. Guardians ad litem should be trained on how to communicate directly with disabled individuals and their families in culturally competent ways.
In this regard, other states may look to Texas as a model. Texas Government Code 81.114 requires attorneys to receive specific training on guardianship—including information about disability bias, guardianship laws, and alternative services and options—before they can bring a guardianship claim to court.129
Fund supported decision-making model projects
Given the emerging research and positive outcomes from state-level supported decision-making model projects, states should begin or continue to fund such projects. Emma, Skye, and their families described participating in a supported decision-making pilot project as a unique experience. The project, offered by the families’ local Arc chapter in Virginia, provided education about guardianships and supported decision-making and set both families on the course to ensure that Emma and Skye understood their rights and how they can play an active role in deciding how they want to live their lives. Emma had this to say about the project: “I learned so much about my rights. I was able to pull together my circle of support. I can live my best life.”130
Being a part of the project undeniably shaped the way Emma and Skye view the control they have over their passions, their dreams for the future, and the roles those in their lives play—the roles that best suit Emma and Skye, not the other way around. Their confidence is deeply rooted in an understanding that they are not a background figure in their lives but instead at center stage. When asked who her current guardian is, Skye proudly proclaimed, “Yes—me! I make my own decisions.”131
Any supported decision-making projects should consider how the approach can function in practice under certain circumstances and for reproductive health decisions. Because supported decision-making arrangements must be understood and accepted by a variety of actors, from the courts to doctor’s offices, model projects must continue raising awareness about them, especially in states that do not formally recognize such arrangements. Model projects should also incorporate a diverse range of participants—including disabled people of color of different ages, income levels, and housing situations—to examine how the arrangement best works across various communities.132 The impact of factors such as race and socioeconomic status must be studied in order to understand if and how people participate in supported decision-making.133 Model projects and programs should seek to recruit participants from communities, including nonspeaking disabled people.
Reduce usage of guardianships
With the findings from model projects and data collection, states should modify guardianship legislation so that alternative approaches—rather than full guardianship—are the default option, including supported decision-making. According to Texas’ Annual Statistical Report for fiscal year 2021, guardianship filings decreased by 2 percent from 2016 to 2021.134 This decline in the number of guardianships filed in Texas can likely be attributed to the state reforming legislation to require the use of alternatives before guardianship.
However, supported decision-making legislation should be implemented alongside other mechanisms to ensure that the approach is utilized and enforced. For instance, even though guardianship agreements can be targeted to specific issues such as health care or financial decisions, research shows that more than 90 percent of guardianships remove all of a person’s decision-making rights.135
Provide education around sex and sexual rights
States should consider undertaking legislation to connect guardianship with the empowerment of sexual rights, such as companion reforms about sex education.136 Illinois has led the way on this front. In 2019, the state specifically amended its Mental Health and Developmental Disabilities code to incorporate sex education reforms for people with intellectual and developmental disabilities.137 The code now requires residential and vocational facilities serving people with intellectual and developmental disabilities to evaluate their consent capacity and provide sexual education. According to Teresa Parks of the Illinois Guardianship and Advocacy Commission, this effort was led by the Illinois Self Advocacy Alliance after the Illinois Human Rights Authority received complaints of violations of the sexual rights of people with intellectual and developmental disabilities. Self-advocates then communicated the need for sexual education and freedom of sexual rights to service providers, families, and guardians in stakeholder meetings.138 This provides a model for other states considering the connections between guardianship and reproductive health decisions. State officials can work with advocates with disabilities, service providers, and guardians to evaluate the potential of such legislation.
Organizational recommendations
Submit guardianship complaints to the Department of Justice
Nonprofit organizations that provide legal services to people with disabilities should submit complaints of harms such as abuse, fraud, and/or exploitation to the DOJ. The DOJ utilizes complaints to decide which issues it investigates,139 and coordinating numerous submissions from different clients will help encourage the department to take up guardianship issues.
Increase provider data collection
Nonprofit organizations and service providers for people with disabilities, particularly those that provide guardianship services, should collect data on demographic information, including race and ethnicity, age, gender identity, and housing situation. They should report these data to the highest court of each state that handles probate or guardianship cases to assist in data collection efforts. This will allow both service providers and states to better understand trends in the populations under guardianship.
Conduct outreach to marginalized communities
Additionally, nonprofit organizations conducting educational and outreach efforts about alternatives to guardianship, such as supported decision-making, should specifically coordinate to reach communities of color. This could include creating FAQ guides or materials in multiple languages. For example, the Illinois Guardianship and Advocacy Commission, Illinois Self Advocacy Alliance, Blue Tower Solutions, and other stakeholders collaborated with the Illinois Department of Human Services to create fact sheets, FAQs, and a sexual rights statement to facilitate sex education for adults with intellectual and developmental disabilities.140 These materials are available in the major languages spoken in the state—Spanish, English, Polish, and Chinese—and in multiple easy-to-read and universal design formats.141 Training sessions and “train-the-trainer” series are also available.
Conclusion
Guardianships restrict disabled people’s ability to make their own decisions, including around reproductive health care. However, supportive decision-making provides a promising new avenue to reduce overreliance on antiquated and poorly regulated guardianships. Emma and Skye’s experiences with supported decision-making show that individuals placed into restrictive guardianships can transfer—or work to transfer—successfully into alternative programs that allow them more agency. Their experiences are not isolated occurrences; they show the need for policymakers to create less restrictive programs that allow disabled people to make their own choices and to retain their reproductive freedoms.
The policy recommendations provided in this report serve as a starting point for policymakers to tackle the complexities of guardianship. In light of the overturning of Roe v. Wade, such work is more important than ever before.
Acknowledgments
The authors would like to thank Kyle Ross, Justin Schweitzer, Suzanne Harms, Nicole Lee Ndumele, Maggie Jo Buchanan, and Jill Rosenthal for their input. They would also like to thank Richard LaVallo from Disability Rights Texas, Sam Crane from the Quality Trust for Individuals with Disabilities, Teresa Parks from the Illinois Guardianship and Advocacy Commission, Krescene Beck from Blue Tower Solutions, Adam Wiser from the Illinois Self Advocacy Alliance, Emma and Donna Budway, and Skye and Tia Marsili for their participation in interviews with the authors.
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