Restrictive guardianships deserve increased scrutiny from policymakers
in order to ensure that disabled people are not denied their
reproductive rights.
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.
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.
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
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.
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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