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Rethinking Guardianship (Again): Substituted Decision Making as a Violation of the Integration Mandate of Title II of the Americans with Disabilities Act
Abstract
In every state, when an adult has a diminished capacity to make decisions about personal affairs or property management, a court may transfer the individual’s right to make decisions to a guardian. This Article argues that, in most cases, it would be preferable to support decision making rather than supplant it through guardianship, and then seeks to locate a right to receive such support as a less restrictive alternative to the substituted decision making that characterizes guardianship. Building on the reasoning in Olmstead v. L.C. and subsequent decisions interpreting the Americans with Disabilities Act’s integration mandate, this Article argues that by limiting an individual’s right to make her own decisions, guardianship marginalizes the individual and often imposes a form of segregation that is not only bad policy, but also violates the ADA’s mandate to provide services in the most integrated and least restrictive manner. After discussing why recent reforms of state guardianship laws have proven inadequate, this Article conceptualizes guardianship as a form of disability-based discrimination and argues that Olmstead and the integration mandate are legitimately applied to the guardianship context. This Article then argues that states should be required to modify their current guardianship systems to provide decision-making support as a less restrictive form of assistance and suggests that such a modification would not necessitate a “fundamental program alteration.” Finally, this Article points to supported decision-making models that have been developed in other countries as less restrictive alternatives to guardianship that enhance the independence, autonomy, and inclusion of individuals with limitations in decision-making abilities. The hope is that this re-conceptualization of guardianship will further the development of a range of meaningful and effective alternatives for guardianship.
... Should a guardianship proceeding demonstrate the incompetence or incapacity of a person with a disability, a judge may appoint a surrogate to act on that person's behalf known as a guardian (Kohn et al., 2012). In addition to the problematic nature of guardianship laws that hinge on reductive binaries of competence versus incompetence and capacity versus incapacity, the formal declaration of incompetence or incapacity associated with guardianship typically lasts a lifetime (Salzman, 2010). The extent of one's authority as a guardian depends upon the courts' discretion. ...
... Guardianship orders may be partial, covering specified areas (e.g., healthcare), or they may be full, also known as plenary. As the descriptor suggests, full guardianship typically encompasses the entirety of one's affairs (Salzman, 2010). The preference of courts across the United States has historically tended toward awarding full guardianship rather than specifying the limited authority of a guardian through partial guardianship (Crane, 2015). ...
... Many assertions have been made about the problems with guardianship that rightfully focus on the impact it has on the person declared to be incapacitated. Such impacts include the denial of one's right to direct their own life and their ability to understand the intimate details of their own affairs (Blanck & Martinis, 2015), the burden associated with terminating or modifying guardianship orders (Salzman, 2010), the ways in which guardianship amounts to one's "civil death" (Perlin, 2012), the incompatibility of United States guardianship laws with the international policy landscape (Dinerstein, 2012), and the potentially unchecked capacity for abuse from one's guardian (National Council on Disability, 2018). Other arguments for critically examining the institution of guardianship in the United States speak to the use of undue and overbroad guardianship, a phrase alluding to the frequency of its use and the excessive breadth of guardianship orders (Hatch et al., 2015). ...
A confluence of research and current events in the United States has brought guardianship for people with disabilities into focus in recent years. In the process, the field of special education has been confronted with an unpleasant reality. In their action or inaction, special education professionals may play a role in parents of students with disabilities pursuing undue and overbroad guardianship. The purpose of this study was to work with researchers and practitioners supporting alternatives to guardianship to gather their foremost recommendations for the field of special education on addressing the use of undue guardianship. To this end, the researchers conducted a three-round Delphi study with these established professionals to solicit, rate, and revise their ratings of related recommendations toward achieving consensus. The 30 top recommendations they offered have been collected here and discussed in terms of their relevance for policy, practice, and research in the field.
... However, the opportunity to make decisions for oneself is a core element of self-determined behavior and overall quality of life (Lachapelle et al., 2005;Schalock, 2004;Wehmeyer, 2007). Hence the traditional model of guardianship that promoted substitute decision-making by the guardian for the ward has recently been changing in favor of a model supporting self-determination and personal decision-making (Dowse, 2009;National Guardianship Association, 2013;Salzman, 2010). This change comes with challenges for guardians as they must now carefully balance managing risk with supporting their wards' (i.e., individuals with disabilities who have been appointed a guardian) self-determination in decisions (Bigby, Whiteside, & Douglas, 2017). ...
... Guardianship can be limited only to financial decisions or medical decisions, or can be compete granting guardians the rights to make all legal, financial, health, and daily life decisions for their ward (Millar & Renzaglia, 2002) Guardian/ Conservator -a person who is appointed by a court to be legally responsible for the welfare of their ward (Millar & Renzaglia, 2002) Ward -an adult with a significant disability that a judge has determined cannot make decisions for him or herself (Millar & Renzaglia, 2002) Intellectual Disability -"a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18." (American Association on Intellectual and Developmental Disabilities, 2018) Substituted decision-making -the act of making a decision on behalf of another person (Salzman, 2010) Supported decision-making -"a recognized alternative to guardianship through which people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face, so they make their own decisions" (Francisco & Martinis, 2017) Support in decision-making -the act of providing support in the decision-making process ...
... The traditional model of guardianship promotes substitute decision-making by guardians for their wards (i.e., individuals under guardianship) and does little to promote self-determination. Thus, guardianship is the most restrictive infringement on an individual's freedom, other than incarceration, as individuals lose many of the rights to make decisions for themselves (Salzman, 2010). There are generally two standards for how guardians should make decisions for their wards used by the law: the substituted judgement standard (i.e., guardians choose what their wards would have chosen if able to make the decisions) and the best interest standard (i.e., guardians choose what produces the greatest benefit for the person) (Whitton & Frolik, 2012). ...
Personal decision-making is a core element of self-determination and quality of life for individuals with intellectual and developmental disabilities (IDD), however, they have traditionally been appointed a guardian to make decisions for them. Guardians are encouraged to involve their wards in decisions, but this comes with challenges as many are unsure of how to include their wards in decisions and must carefully balance managing risks with promoting self-determination. Despite the important role that individual decision-making plays in self-determination and quality of life, there have been surprisingly few research studies that focused on understanding how guardians involve their wards in decision-making, or factors that can influence the opportunities guardians’ give their wards to participate in decisions.
The aim of this study is to describe guardians’ perceptions of wards’ competence to make decisions at different levels of risk and its association with guardians’ willingness to involve their wards in decisions. A secondary aim was to explore the relationship between perceived competence and involvement in decisions with broad educational, vocational, and independent living outcomes.
Eighty-one guardians of adults with IDD in the US completed an online survey. The survey was developed based on three core constructs: involvement of ward in decisions, competence of ward to make decisions, and risks associated with decisions. The questionnaire included 15 different decision-making scenarios at three different levels of risk. Participants answered two Likert-type questions about each scenario; one for rating the involvement of their ward in decisions and one for rating the competence of the ward in making decisions.
Findings showed that guardians’ perception of their wards’ competence in decision-making was highly correlated with how involved their wards were in the same decisions. Both how competent wards were perceived to be by their guardians and how involved wards were in those decisions decreased as decisions became more risky. Higher perceived competence and higher involvement were also associated with higher educational achievement and employment status, but were not associated with the current living status of wards. Implications and future directions are discussed.
... Although individuals with disabilities are entitled to the same rights as the general population under the Constitution of the United States (1776), substituted decision-making has been utilized with individuals who have a diminished capacity to make decisions on their own. For example, guardianship, a form of substituted decisionmaking, has been widely used when a court authorizes another person(s) to make important decisions on behalf of the individual with a disability (Salzman 2010). ...
... If an individual under the guardianship wishes to terminate the arrangement, they must go to court. Guardianship marginalizes and limits the decision-making rights of the individual (Salzman 2010) by granting the guardian the right to overrule decisions made by the individual with a disability (Annino 2013). It segregates a person from social, economic, and civic life (Salzman 2010), and violates Title II of the American Disabilities Act requiring "the states [to] provide services, activities, and programs in the most integrated and least restrictive setting appropriate to the needs of qualified persons with disabilities" (Salzman 2010, p. 160). ...
... Guardianship marginalizes and limits the decision-making rights of the individual (Salzman 2010) by granting the guardian the right to overrule decisions made by the individual with a disability (Annino 2013). It segregates a person from social, economic, and civic life (Salzman 2010), and violates Title II of the American Disabilities Act requiring "the states [to] provide services, activities, and programs in the most integrated and least restrictive setting appropriate to the needs of qualified persons with disabilities" (Salzman 2010, p. 160). Furthermore, guardianship can result in abuses by the guardian (e.g., neglect) because reports from the guardian only need to be filed annually (Andreasin et al. 2014;Payne-Christiansen and Sitlington 2008). ...
We call attention to the need for supported decision-making (SDM) in place of substituted decision-making (e.g., guardianship). SDM allows individuals with intellectual and/or developmental disabilities to make their own life choices with self-appointed supporters. Whereas there is a growing recognition that SDM is a needed practice, America’s deep-rooted paternalistic culture makes it difficult to fully embrace SDM models. Recent court rulings portray an evolution of decision making towards SDM as an option for individuals with intellectual and/or developmental disabilities. These court rulings along with widely accepted theories and emerging research supporting SDM have an increasingly critical influence on policymakers in further advancing the rights of persons with disabilities.
... The abstracted academic literature included three literature reviews (Davidson et al., 2015;Kohn & Blumenthal, 2014;Pathare & Shields, 2012), one editorial (Kripke, 2016), nine analyses or descriptions of concepts and practices of SDM (Agoratus, 2016;Coleman, 2016;Devi, 2013;Dwyer, 2016;Gooding, 2013;Gordon, 2000;Jamieson, Theodore & Raczka, 2016;Parker, 2016;Salzman, 2010), and three qualitative studies (Jamieson et al., 2016;Mitchell, 2015;Werner & Chabany, 2016). ...
... There were three primary themes that emerged from this extracted academic literature: 1) a need for mechanisms of oversight; 2) concern over the lack of evidence for process and outcomes of SDM; and, 3) belief that SDM is a viable alternative to guardianship. The most common theme was concern regarding limited or non-existent legal mechanisms for protection or oversight for the individual (Coleman, 2016;Davidson et al., 2015;Dwyer, 2016;Jameson et al., 2015;Kripke, 2016;Mitchell, 2015;Salzman, 2010). This argument identified that various levels of SDM can occur -from very formal court appointed contracts to informal family and community social networks -however, arguments exist recommending that SDM should have formalized court appointed mechanisms as precedent to protect the individual, reduce potential for risk, and facilitate the support networks of the individual (Coleman, 2015;Dwyer, 2016). ...
... A second theme found in the majority of the manuscripts of amplified concern was the lack of evidence on SDM approaches and the urgency for research on best-practices (Pathare & Shields, 2012) in order to develop guidelines for SDM practice and processes (Davidson et al., 2015;Jameson et al., 2015). In this theme was recognition of the dearth of literature on substantive outcomes of the decisions individuals make (Kohn & Blumenthal, 2014), and a paucity of any descriptions of demographics, individual factors, and characteristics that impact outcomes for the decision-maker as well as supporters (Davidson et al., 2015;Salzman, 2010). Jamieson et al. (2016) highlighted the need for more research on how individual differences and contextual factors can impact satisfaction and outcomes with SDM. ...
Description from Council on Quality and Leadership: Supported decision making (SDM) is a flexible alternative to guardianship which provides a process that recognizes people with disabilities as persons before the law, providing a pathway to exercise legal capacity by focusing on developing supports to enable autonomous decision-making. The main aim of this white paper by CQL | The Council on Quality and Leadership, was to synthesize published literature that might apply to use of SDM within the United States, describing policy, procedure, and practice approaches of SDM, as well as any pertinent empirical evidence to provide insight and inform stakeholder groups of best practices and benefits of SDM over other forms of legal representation. Legal manuscripts, government documents, as well as grey literature were also included to expand the review.
... Unlike formal, highly prescriptive mechanisms for substitute decision-making like guardianship, there is no single way to exercise or implement SDM (Kohn et al., 2012;Salzman, 2010). SDM can be as informal as a person consulting a family member before making any financial decisions (Kohn et al., 2012) or formally built into staterecognized legal frameworks like a power of attorney (Carney, 2013;Kohn et al., 2012). ...
... Of fundamental importance to SDM is the manner in which it keeps the person at the center and in control of decisions that affect their lives (Blanck & Martinis, 2015;Campanella, 2015). Because of this, adults with disabilities retain their authority and autonomy over their decisions and the ways in which they receive support (Salzman, 2010). Ultimately, they are empowered to act as causal agents in their lives (Blanck & Martinis, 2015), learning about decisions large and small as they access new experiences (Campanella, 2015). ...
There are many known barriers facing youth with disabilities as they make the transition from high school to their adult lives. One potential barrier receiving increased attention over the last 5 years is guardianship, the court petition-driven process by which adults with disabilities are declared incapacitated (i.e., unable to make or communicate decisions regarding their affairs). The result of this process is the appointment of a surrogate decision-maker known as a guardian. Depending on the nature of the court order, some rights like entering into contracts might transfer to the guardian, other rights may be retained by the “ward,” and other rights like marrying might be removed altogether. Guardianship has been framed as antithetical to the aims of the Individuals with Disabilities Education Act and contrary to research demonstrating the importance of self-determination for young adults with disabilities. Few studies, however, have examined the perspectives of professionals in special education leadership roles on issues related to special education, guardianship, self-determination, and alternatives to guardianship. This study surveyed professionals in district- and school-level special education leadership roles ( N = 117) to examine their perspectives on what “should” be done and what is actually being done relative to issues surrounding guardianship in their district. Subsequent descriptive and inferential analyses show a stark incongruence between that which professionals value regarding this domain and the current reality of practice in their local areas. Salient findings with important implications for special education policy and future research are presented and discussed.
... Paradoxically, preventing people from taking risks is in itself risky. For one, limiting the space allowed for risk taking limits social participation and interactions, potentially leading to lowered emotional wellbeing (Salzman, 2010b). This resonates with studies showing that professionals tend to prioritise physical over psychological risks (Wyllie and Saunders, 2018). ...
... This resonates with studies showing that professionals tend to prioritise physical over psychological risks (Wyllie and Saunders, 2018). Secondly, overprotection does not allow individuals to learn and develop decision-making skills (Salzman, 2010b) and teaches disabled people to stringently comply with others. If generalised by the individual to other situations and environments, this may place them at risk for abuse (Plummer and Findley, 2012). ...
Throughout the years, disabled people, especially those with intellectual and mental disabilities, have frequently been appointed authorised guardians. Having been criticised for restricting individual freedom and autonomy and in line with the 2006 UN Convention on the Rights of Persons with Disabilities, a 2016 reform in Israel's Legal Capacity and Guardianship Law called for restricting the use of guardianship and preferring less restrictive alternatives, specifically supported decision making (SDM). The success of this reform rests largely on social workers. This study examined the meanings social worker attach to guardianship and SDM. In-depth semi-structured interviews were conducted with twenty-seven Israeli social workers. The findings showed that whilst they acknowledged the shortcomings of guardianship, they nevertheless perceived it to be vital. They provided three justifications for this view: guardianship as a safeguarding practice, guardianship as promoting individual well-being and guardianship in the service of third parties. These findings are discussed in terms of their meaning for guardianship as a risk-aversive practice designed to promote service users’ well-being and quality of life and in terms of the role played by third parties in bringing SDM into force. Recommended steps for moving the current reform in guardianship from paper to practice are highlighted.
... Furthermore, there is the potential for the health information to be used as secondary data in public health researcha legitimate use for improving the health of populations, but one that potentially can be exploited by illegitimate use (Spriggs et al., 2012). Policy frameworks for the use of secondary data in MyHR will need to guard against improper use (Presser, Hruskova, Rowbottom, & Kancir, 2015). Appropriate information about the risks and benefits of storing and sharing personal health information is an important element of consent (Presser et al., 2015) that continues after the decision to register and set personal access controls in the system and also in the event of new frameworks being developed for secondary use of the personal health data in MyHR. ...
... Policy frameworks for the use of secondary data in MyHR will need to guard against improper use (Presser, Hruskova, Rowbottom, & Kancir, 2015). Appropriate information about the risks and benefits of storing and sharing personal health information is an important element of consent (Presser et al., 2015) that continues after the decision to register and set personal access controls in the system and also in the event of new frameworks being developed for secondary use of the personal health data in MyHR. ...
Background: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability.
Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability.
Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability.
Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR.
... Substituted decision-making regimes have questionable validity through this crucial shift towards universal legal capacity, and the human rights of persons with disabilities will demand supportive decision-making mechanisms to secure their equal rights and respect under the law. Much scholarly attention has scrutinised the legal and moral permissibility of substituted, best interests decision-making mechanisms in current legislation, such as the Mental Capacity Act 2005 in England and Wales, Ontario's Substitute Decisions Act 1992, and Americans with Disabilities Act 1990 [1][2][3] . Different analyses have also tried to articulate the specific institutional and legal requirements of supportive decision-making instruments [4,5]. ...
... My thanks to an anonymous reviewer for this point.3 "There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic ...
Human rights have recently impacted on current conceptualisations of the rights and obligations owed to individuals with impairments, culminating in the UN Convention for the Rights of Persons with Disabilities. Particularly significant is Article 12, where interpretations have heralded a “will and preferences” paradigm which rejects substituted decision-making mechanisms, even in situations where an individual should make personally harmful or unwise decisions about their treatment, care, or relationships. This paper explores problems with “strict” and “flexible” interpretations of Article 12, focusing specifically on safeguarding issues in cases of relational abuse, exploitation, and coercion. Drawing analogies with feminist arguments opposing violence against women in the domestic sphere, I challenge the private/public and individualistic account of autonomy which is implicit in interpretations of the “will and preferences” paradigm, and suggest that proponents of Article 12 should consider the possible justifiability of expanded protectionist measures in cases of abuse involving individuals with impairments.
... Some critics have argued that assessments of capacity within the Mental Capacity Act 2005 may not be compliant with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) [18,19]. A strong reading of Article 12 of the UNCRPD, rejects the very concept of decision-making incompetence, arguing that there is no point at which legal capacity should be considered to be lost [18]. ...
... Some legal interpretations of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), argue that under the UNCRPD there is no point at which legal decision-making capacity is lost, and thus all decisions must be supported, rather than substituted [18][19][20]. Under the Mental Capacity Act 2005, legal capacity testing represents a 'cut-off point' for a decision, and creates a categorical distinction between supported and substituted decision-making. ...
Some people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team.
A three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process?
Decision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: (1) Risks, burdens and benefits; (2) Treatment goals; (3) Normative ethical values; (4) Interested parties.
Decision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of 'who decides' cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum.
Full text link: http://www.biomedcentral.com/content/pdf/s12910-015-0034-8.pdf
... Providerdriven labour and delivery care can be disrespectful and discriminatory to disabled pregnant people, discounting their autonomy as persons with decision-making capacity and promoting the medical management of childbirth. Since disabled parents are too often presumed to be incompetent [84] and incapable of making decisions [85], and pregnant people with disabilities are presumed to be high-risk, regardless of medical indication, and subject to increased medical interventions [7,11,33], shared decision-making is especially important for resisting systemic forms of disability injustice and obstetric ableism. Shared decision-making is a form of collaborative, respectful, and disability-affirming care that can facilitate collective access to perinatal health care for people with disabilities and promote disability justice. ...
Background
People with disabilities experience perinatal health disparities. This qualitative study examines disabled people’s experiences of labour and delivery care from a disability justice lens.
Methods
Semi-structured interviews were conducted between July 2019 and February 2020 with 31 women and transgender people aged 18–45 years with physical, sensory, and/or intellectual/developmental disabilities, who were living in in Ontario, Canada and had given birth in the previous five years.
Results
People with disabilities described negative experiences of provider-driven, disrespectful, and discriminatory labour and delivery care that can be interpreted as examples of disability injustice and obstetric ableism. People with disabilities also described positive experiences of collaborative, respectful, and disability-affirming labour and delivery care that can be interpreted as examples of disability justice, facilitated by what feminist disability justice scholars and activists call collective access.
Conclusions
Collective access to labour and delivery care can improve perinatal health care for people with disabilities and promote disability justice. Reimagining care-related decision-making as an interdependent, collaborative, respectful, and disability-affirming process shared between patients and providers can help to facilitate collective access to labour and delivery care.
... Accordingly, we set in this paper two goals: (1) to examine how decision-making supporters perceive the idea of support relationships as they are embedded in the practice of SDM, and (2) to compare the perspectives of family and volunteer supporters regarding the idea of support relationships. disabilities such as loss of control, helplessness, and disempowerment [9]. Together with the relevant articles of the UN Convention on the Rights of Persons with Disabilities (CRPD) [10], these criticisms have sparked widespread support for developing less restrictive alternatives, especially SDM. ...
Purpose:
Supported decision-making (SDM) is an emerging and innovative alternative to substitute decision-making practices. While relationships are pivotal in establishing proper and effective SDM, scant research has examined these relationships in-depth. This study explores how decision-making supporters perceive relationships embedded in SDM for adults with disabilities. Furthermore, it compares the points of view of family and volunteer supporters on these relationships.
Materials and methods:
Using a semi-structured interview guide, in-depth interviews were held with 16 family and 16 volunteer supporters of Israeli decision-makers with disabilities.
Results:
Both family and volunteer supporters addressed the centrality of the support relationship. However, they differed in their perspectives on the ways such relationships should be formed and on their boundaries. We distinguish between families' continuing relationships vs. volunteers' emerging relationships to emphasize the identified differences.
Conclusions:
The findings highlighted the importance of relationships to SDM processes, highlighting the need to examine in greater depth whether and how "typical" family relationships differ from SDM relationships. Based on these findings, we recommend training and guidance for both family and volunteer supporters in developing and strengthening these relationships.
... On the contrary, not giving authority and autonomy to people with disabilities in decision making contributes greatly to their exclusion and isolation in many aspects of their life (Chand & Uprety, 2022;Salzman, 2009). Decision making is a significant factor that enhances the self-determination domain (Campanella, 2015). ...
Saudi Arabia, through its Vision 2030, seeks to enhance the Quality of Life (QoL) of all individuals who live there. Therefore, this study aimed to examine the of QoL of students with disabilities in a Saudi university (Shaqra University) as a case study. Although this study was conducted in one university, many students with disabilities around the world are facing the same systematic practices in many universities (Carballo et al., 2021; Khayatzadeh-Mahani et al., 2020). Therefore, this study used qualitative research by interviewing all students with disabilities who are registered at the university for the academic year 2022-2023. In addition to these 11 students with disabilities, 2 senior university administrators who have a direct relationship with the services provided to these students were also interviewed. The overall outcomes confirm that the QoL for these students is very low due to multiple factors that were discussed in detail.
... In recent years, the practice of guardianship has come under severe criticism. Among other things, it has been argued that although guardianship intends to safeguard from harm, abuse, and neglect, it also restricts freedom, autonomy, and personhood (Fiala-Butora & Stein, 2016;Flynn & Arstein-Kerslake, 2014), leading to experiences of helplessness and marginality (Salzman, 2010). ...
We examined social workers' recommendations regarding the possible appointment of a guardian, a supported decision maker (SDM), or neither for persons with disabilities. Social workers (N = 328) were presented with four vignettes that contained factors potentially relevant to guardianship and SDM judgments. They expressed higher support of SDM and maintaining the status quo (without a guardian or SDM) and lower support for guardianship. Social workers were more likely to recommend guardianship when the person depicted in the vignette was labeled as having an intellectual disability, needed support in decision-making, lacked familial support, and agreed to guardianship. They were more inclined to support the status quo for individuals with mental illness, when there was little need for decision-making support, when the family was supportive, and when the individual refused guardianship. Social workers who had not heard of the SDM reform, and those with positive attitudes toward guardianship, supported guardianship. Findings are discussed in light of the status and functional approaches to guardianship and the relational notion of autonomy. As part of the SDM reform, decision-making capacity should not be assessed based on diagnosis or on independent decision-making, but rather on the ability to make decisions when receiving appropriate support. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
... As a legal alternative to guardianship, the CRPD introduced a construction assisting the practice of legal capacity of people living with certain disabilities (primarily an intellectual or cognitive disability), which has become mainly known as 'supported decision-making' (hereinafter SDM). SDM enables people living with disabilities to enjoy their rights as active players, that is, to make their own decisions about their own lives, through reasonable accommodation, while observing individual needs (Browning, Bigby, & Douglas, 2020;Donelly, 2019;Harding & Tasciouglu, 2018;Salzman, 2010). ...
Our research on the operation of legal institutions related to the restriction of the legal capacity of adults (custodianship and supported decision-making) started in December 2019. Our present analysis of case law on custodianship and supported decision-making is based on cases published in the Collection of Court Decisions. The adoption of the new Hungarian Civil Code has clearly had a significant effect on the court decisions, as it made it compulsory to designate the categories of decisions to which a partial restriction on legal capacity applies. However, the change in regulation also implies a change of attitude that is considerably less apparent in the cases. In the context of international human rights expectations, any limitation of legal capacity should be applied as circumspectly as possible, and only in the most necessary cases. In the examined cases, the efforts of the Curia (the Hungarian Supreme Court) to reinforce this change of attitude in court practice may be detected but they are not extensive. At the same time, the spirit of the UN Convention on the Rights of Persons with Disabilities (CRPD) is not clearly reflected in court practice, and supported decision-making is not seen by courts as a real alternative to custodianship. Regarding the processes of the analyzed disputes, we found that the procedures in the published cases are relatively short, the higher courts in most cases upholding the decision of the lower courts, and that there is no legal or critical evaluation of any expert opinion. In a number of cases, the dominant function of custodianship is not the protection but the restriction of the rights of the given person and - against its declared goal - it serves to protect the interest of others. For example, property issues and the protection of the financial interests of family members are given priority in the published cases. In addition, there were several cases in which the authorities themselves sought to be ‘protected’ by limiting the capacity of the person to initiate official and judicial proceedings.
... For example, people with intellectual disabilities who have been appointed a guardian report feeling isolated (cf. Kohn, Blumenthal, and Campbell 2012;Salzman 2010;Wright 2010). Being a ward can also signify a particular social status to laypeople, which can lead to stigmatization (Sherman 1980). ...
This article argues that supported decision making is ideal for people with dynamic cogni-tive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioeth-ics research.
... Supported decision making has two main aims, to enable people with cognitive disabilities to exercise their legal capacity (Committee on the Rights of Persons with Disabilities, 2014) and to determine their own lives (Shogren et al., 2017). The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006) promoted supported decision making, as a legal alternative to guardianship, and mechanism to reasonably accommodate people with cognitive disabilities to exercise their legal capacity (Donnelly, 2019;Harding & Taşciouğlu, 2018;Salzman, 2010). It has been widely discussed in relation to disability rights Carney, 2012;Dhanda, 2007;Dinerstein, 2012;Gooding, 2015;Lewis, 2010;Quinn, 2010;Szmukler, 2019), the subject of numerous reports of law reform agencies and in some cases adopted in legislation 1 (Martinez-Pujalte, 2019). ...
Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making.
Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters.
Results: A common process of decision-making support was discovered, involving dynamic interaction between the person’s will and preferences and supporters’ responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision.
Conclusion: The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice.
... Guardianship limits or removes one's autonomy and self-determination (Salzman, 2010). In contrast, supported decision making gives individuals the power to make decisions about their lives with the support of those they trust and choose to help them (Zhang, Walker, Leal, Landmark, & Katsiyannis, 2019). ...
This article expands on 10 critical actions within the American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc's 2018 joint position statement on the right of students with intellectual and developmental disabilities (IDD) to have a free and appropriate public education (FAPE): (a) zero reject; (b) nondiscriminatory and comprehensive eligibility evaluations and appropriate assessments; (c) high expectations and FAPE; (d) autonomy, self-determination, and decision-making supports; (e) inclusion and least restrictive environments (LRE); (f) safe and supportive education environments; (g) school choice; (h) family and student participation; (i) lifelong education, transition, and postsecondary education; and (j) system capacity development, funding, oversight, and accountability. Research findings documenting positive outcomes associated with implementing each area of action are described and relevant legal mandates and case law are discussed. Recommendations are made for changes to educational systems and practices that create barriers to the access of FAPE for students with IDD.
... Recently, however, guardianship has come under severe criticism and has been challenged for restricting the freedom, autonomy, and personhood of people with disabilities [5]; for having negative psychological effects (e.g. loss of control, helplessness, and disempowerment) [6]; and for appointment based on diagnosis rather than actual functional abilities [7]. More important, the fact that anyhow most decisions in our lives are taken with the help of others has been frequently overlooked. ...
... Leslie Salzman has described Article 12 as a "paradigm shift" through its creation of a "true presumption of legal capacity", calling for a "more nuanced approach towards determining decision-making status and greater reflection on how to assist an individual within the decisionmaking process." (Salzman, 2009). Kristin Booth Glen describes this new "paradigm" as "insist[ing] on the full legal capacity of every person with intellectual disabilities… do[ing] away with substituted decisionmaking in favour of society's obligation to provide appropriate supports to permit everyone to make his or her own decision" (as opposed to the "old idea of incapacity as an illness or defect that renders the person suffering it to an object of charity and protection, subject to plenary guardianship based on best interests which constrains her personal life and the control of her property.)" ...
This paper examines the intersection of dementia with the physiological processes and social contexts of old age; assesses the current legal response to problems arising through that intersection; and considers the potentially transformative effect of re-thinking legal response with those contextualised problems in mind. Two distinctive problems are identified: a heightened risk of exploitation, and an increasingly intense need for care coinciding with a decreasing ability to recognise and respond to that need. These problems require a social (rather than medical) response, of which law is an integral part. Several areas of law (including adult guardianship, legislation and common law doctrine relating to health care consent/refusal, and the body of law relating to decision-making about agreements, transactions, and bequests) provide for that response through the medico-legal construct of mental capacity. This legal idea of mental capacity has survived extensive critique, particularly in relation to interpretation and implementation of Article 12 of the Convention on the Rights of Persons With Disabilities. The survival of the mental capacity construct can be attributed to its usefulness as a theoretical mechanism that provides both a justification for over-ruling choice and preference (locating autonomy in the mentally capable decision) and a process for doing so (the mental capacity assessment and determination). This ambit of usefulness is particularly relevant to the problems (arising in the context of dementia in old age) identified in this paper. Both problems engage the public interest, together with the fundamental legal principle of fairness, in ways that call for legal response of some kind. Supported decision-making, as the suggested replacement for mental capacity based legal response, applies awkwardly in these contexts; as far as the individual is concerned, her decision has been made (and she does not need assistance in making one). This paper concludes that the mental capacity construct is problematic both for the reasons identified in the CRPD discourse (in which the experience of dementia in old age has been largely invisible) and because of the complicated intersections between mental capacity, dementia, and old age. The paper concludes by setting out an alternative conceptual basis and framework for legal response, including over-ruling expressed choice and preference, constructed around a principled theory of vulnerability as an alternative to and replacement for the mental capacity construct.
... er, A., & Causton, J. (2014). Presumption of incompe- tence the systematic assignment of guardianship within the transi- tion process. Research and Practice for Persons with Severe Disabilities, 39(4), 319-328. https://doi.org/10.1177/1540796915571005Saldaña, J. (2013). The coding manual for qualitative researchers. 2nd ed. Thousand Oaks, CA: Sage.Salzman, L. (2010). Rethinking guardianship (again): Substituted decision mak- ing as a violation of the integration mandated of Title II of the Americans with Disabilities Act. University of Colorado Law Review, 81, 157-245. Shogren, K. A., Wehmeyer, M. L.,Lassmann, H., & Forber-Pratt, A. J. (2017). Supported decision making: A synthesis of the literatur ...
Background
Siblings of adults with intellectual and developmental disabilities (IDD) often support their brothers and sisters through caregiving and guardianship.
Methods
In this qualitative study, the knowledge and views of 10 adult siblings were explored.
Results & Conclusions
The tripartite impact of limited knowledge of guardianship and alternatives, the viewpoint of full guardianship as necessary and the desired/anticipated roles of siblings combined to create the Sibling Reciprocal Effect (SRE). The present authors define SRE as the phenomenon of siblings to recognize the applicability of complementary forms of guardianship for other adults with IDD, but fail to see the advantage of available decision‐making alternatives with their own brothers/sisters. Instead, siblings defer to full guardianship as the preferred mechanism for decision making. Implications for practitioners include informing families of the full range of options for supporting persons with IDD in decision making. Future research suggestions include examining the elements of the SRE and siblings’ knowledge regarding guardianship and the alternatives.
... Recently, however, guardianship has come under severe criticism and has been challenged for restricting the freedom, autonomy, and personhood of people with disabilities [5]; for having negative psychological effects (e.g. loss of control, helplessness, and disempowerment) [6]; and for appointment based on diagnosis rather than actual functional abilities [7]. More important, the fact that anyhow most decisions in our lives are taken with the help of others has been frequently overlooked. ...
Purpose: Guardianship of people with disabilities has been under growing scrutiny, leading some welfare states to offer supported decision-making as a legal alternative. This study examined the attitudes of Israeli social work students toward guardianship and supported decision-making and the relationship between these attitudes and the perceived importance of social work goals, as mediated by perceptions of disability.
Materials and methods: Participants were 414 undergraduate and graduate level social work students from Israel. Participants completed a structured questionnaire that measured: attitudes toward guardianship and supported decision-making, importance of social work goals, and perception of disability.
Results: Although social work students tended to support limiting the scope of guardianship, they did not clearly oppose it. Individual model perspective of disability mediated the association between the social work goal of social control and attitudes toward guardianship. Social model perspective of disability mediated the association between the social work goal of social justice and attitudes toward guardianship.
Conclusion: To reduce guardianship appointments, social work educators should educate students better regarding current supported decision-making trends, emphasize the importance of social justice goals, and discuss critically the necessity of social control. Further, educators need to embrace the social model of disability, in particular its view of autonomy and interdependence.
• Implications for rehabilitation
• The UN Convention on the Rights of Persons with Disabilities has urged limiting guardianship practices, and developing instead less restrictive alternatives, especially supported decision making.
• In order to fully implement the Convention’s vision, efforts must be placed in social work training programs on discussing the limitations of guardianship, the dilemmas it raises and the advantages of other less restrictive alternatives, including that of supported decision-making.
• Social work educators should also emphasize the importance of social justice goals and discuss critically the necessity of social control.
• Similar emphasis should be placed on exposing students to the social model of disability, including its view of autonomy and interdependence.
... Guardianship is, by its very nature, an infringement on a person's right to legal capacity (Kohn, Blumenthal, & Campbell, 2013). When a guardian is appointed by a judge through a court proceeding, it has been determined that a person does not have the capacity to make decisions for themselves (Salzman, 2010). ...
Supported decision making has received increased attention as an alternative to guardianship and a means to enable people with intellectual and developmental disabilities to exercise their right to legal capacity. Assessments are needed that can used by people with disabilities and their systems of supports to identify and plan for needed supports to enable decision making. This article describes the steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS), and initial feedback received from self-advocates with intellectual disability. The three sections of the SDMIS (Supported Decision Making Personal Factors Inventory, Supported Decision Making Environmental Demands Inventory, and Decision Making Autonomy Inventory) are described and implications for future research, policy, and practice are discussed.
... The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (2006) generated significant debate both in Australia and internationally about the rights of people with cognitive disabilities to make decisions about their own lives. Some interpretations of article 12 of the Convention suggest that the concept of supported decision making should replace substitute decision making and guardianship, to ensure that people with disabilities have the necessary support to exercise their legal capacity on an equal basis with other citizens (Salzman 2010;Kohn et al. 2013). Supported decision making originated in Canada in the 1990s to deal with legal barriers to receipt of individualised funding by people with intellectual disabilities created by issues of competency (Bach 1998). ...
The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010–2015, a series of projects have piloted various models of delivering decision making support. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non-statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person's life, and integrate decision making support across all life domains.
... 286-287). Salzman (2010) suggested a modification to the guardianship system that enforces less sweeping restrictions, such as by using supported decision making, which would also allow more access to voting. More research is needed to explore how the intricacies of these alternative guardianship models could affect voting participation. ...
People with intellectual and developmental disabilities (IDD) vote less frequently than nondisabled people and people with other disabilities. This study explores what factors facilitate and hinder people with IDD’s voting participation. To do so, 1,341 people with IDD were surveyed using the Personal Outcome Measures®. Binary logistic regressions revealed significant relationships between voting participation, and support needs, residence types, guardianship statuses, and organizational supports. Along with the right supports, attention to barriers that might exist can ensure people with IDD are able to make use of their civil right and participate in this crucial form of civic engagement.
... Integrating the ideas within Articles 12 and 5, it can be said that just as people with physical disabilities need a ramp to ensure that they are reasonably accommodated to access a building, supported decision making is seen as the vehicle to reasonably accommodate people with cognitive disabilities to exercise their legal capacity (Salzman, 2010). Therefore, governments who are signatories to the UNCRPD, such as Australia, have a human rights obligation to ensure that people with disabilities are provided with the support they need to exercise their legal capacity on an equal basis with others. ...
This article aims to help readers to understand the conceptual link between supported decision making and legal capacity and how this is influencing the development of practice. It examines how the concept has been defined as: a process of supporting a person with decision making; a system that affords legal status; and a means of bringing a person's will and preference to the centre of any substituted decision-making process. The conceptual link between supported decision making and legal capacity is explored by outlining three conceptualisations that are influencing the development of practice. It is important to understand the difference between supported decision making and support with decision making. Both involve offering support to a person who is unable to navigate decision making independently. However, the key difference is whether or not the process results in greater legal capacity for the individual. Additionally, supported decision making requires the development of legal mechanisms that legitimise the interdependent nature of decision making and the concept of shared capacity. By having a greater understanding of the conceptual foundations of supported decision making, practitioners can engage in more focused evaluation of proposed new law reform and practice. Research will be vital in understanding how supported and substituted decision making could coexist and how mental capacity could be assessed in this new decision-making paradigm. If a more substantial theory of practice can be developed, supported decision making has the potential to empower and enrich the lives of people with cognitive disabilities, both in Australia and all over the world.
Educational leaders play key role to execute policies and to plan in time decisions for day to day issues. This study is an investigation about the present practices of school-heads about their decision making. Another core objective of the study was to compare the decision styles of school-heads with regard to their gender and locality. This study was descriptive in nature and quantitative research approach was used to conduct it Questionnaire developed by the researcher on five point Likert Scale was used as tool to collect data from the twenty school-heads selected as sampled participants by applying simple random sampling technique from the population of the study. Finally, findings of the study showed that behavioural decision style was used by the majority of heads with 53% while directive was on second with 47%.
The purpose of this dissertation is to research the possibility of the adult support and protection legislation becoming part of the complex law of the adult guardianship system, supported decision-making, and elder abuse against vulnerable adults, based on issues related to Japan's adult guardianship system.
For details, please visit http://doi.org/10.18880/00014834.
Federal law requires that schools provide students receiving special education services and their parents/guardians with notice, 1 year before the student reaches the age of majority, that all of the educational rights previously afforded to the parents/guardians will transfer to the student once they reach the age of majority. During this “transfer-of-rights” period, educational professionals often advise parents/guardians to seek legal guardianship over the student with disabilities without providing information about other options. As a result, many parents/guardians seek guardianship without knowing about or exploring less-restrictive alternatives that could help students retain their legal rights, provide opportunities to enhance self-determination, and build community participation skills that benefit them in school and as adults. This article will (a) provide an overview of the use and impact of guardianship and describe recent advances in developing and implementing less-restrictive alternatives to guardianship and (b) advocate for an amendment to the Individuals with Disabilities Education Improvement Act of 2004 that will require schools to provide students and their families with information about the full range of decision-making options during the “transfer-of-rights” period.
Brain injury contributes more to death and disability globally than any other traumatic incident. While the past decade has seen significant medical advances, laws and policies remain stumbling blocks to treatment and care. The quality of life of persons with severe brain injury often declines with unnecessary institutionalization and inadequate access to rehabilitation and assistive technologies. This raises a host of rights violations that are hidden, given that persons with severe brain injury are generally invisible and marginalized. This article highlights the current neglect and experiences of persons with severe brain injury in the United States, analyzing the rights to life, health, benefit from scientific progress, education, freedom of expression, community, family, and equality.
In this paper, we explore various considerations of the adult guardianship system and supported decision-making to address the rapid increase of elderly with dementia in Japan’s super ageing society. Using case studies conducted on Japan, in addition to comparative studies of foreign laws and policy recommendations, we aimed to research social design studies towards a possible change of Japan’s social model. Through this study, three points were derived as the main concepts of social design, namely (1) construction of an adult protection system, (2) respect for diversity of the elderly, and (3) the inclusion of non-profit businesses and judicial social work. Implementing these three points is expected to contribute to a possible change of the social model in Japan as a means to survive the super ageing society. Research methods in this paper include literature surveys, observation by participation, and interview surveys in Japan and abroad. In preparing this paper and its presentation, we tried to comply with the research ethics rules prescribed by our university. This paper consists of the following: Introduction; Part 1: Main Issues; Part 2: Case Studies; Part 3: International Perspectives; Part 4: Policy Recommendations; Part 5: Social Design Studies and Conclusion.
Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions.
This chapter discusses Supported Decision-Making (SDM), an increasingly recognized paradigm in law, policy, and research occurring when people with disabilities meaningfully engage with trusted friends, family members, and professionals to understand the daily situations and choices they face that they may make their own decisions without the need for a court-appointed guardian and other “substitute” decision-makers. Because SDM aims to empower people to direct their own lives, often it is associated with increases in self-determination, which is related to overall improved life outcomes. This chapter will first discuss issues pertaining to self-determination in the context of how society has historically placed people with intellectual and developmental disabilities into guardianship, which decreases self-determination and can have harmful effects on quality of life. It then overviews of SDM as an alternative to guardianship. Finally, it overviews recent ways that SDM is being implemented and examined in the USA and in other countries.
Supported decision-making is at the forefront of modern disability research. This is due to Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD), which creates a state obligation to provide support for the exercise of legal capacity. This turned the practice of supported decision-making into a human rights imperative. Government and funding agencies are increasingly focusing their attention on the area. Researchers are similarly increasing their interest in the field. The impending danger is that the rush of interest in the area will overshadow the original intention of supported decision-making: to ensure that people with cognitive disability are provided with the freedom and the tools to participate as equal citizens and for every individual to be free to direct their own life. This article explores the theoretical foundations of supported decision-making and the evolution of supported decision-making research. It explains the research that is emerging in leading jurisdictions, the United States and Australia, and its potential to transform disability services and laws related to decision-making. Finally, it identifies areas of concern in the direction of such research and provides recommendations for ensuring that supported decision-making remains protective of the rights, will and preferences of people with cognitive disability.
This book is a study of civil-law matters of incapacity to act of natural persons in the context of the proposed reform of Bulgarian personal law. It examines the boundaries of the potential contained in the legal notion of interdiction as an approach of restriction and exclusion as well as the opportunities to have it replaced by a diverse set of supportive and inclusive legal tools. The leading method of the study is interdisciplinary as the solutions are sought and verified through the alternating perspectives of law and philosophy. The book is a challenge to specialists in different fields: lawyers, philosophers, sociologists, psychologists, psychiatrists, physicians, medical specialists. It would also intrigue anyone interested in the contemporary debate over the legal status of people with intellectual and volitional inabilities.
Das vom Bundesministerium für Justiz 2014/15 durchgeführte Modellprojekt „Unterstützung zur Selbstbestimmung“ erprobte im Sinne der UN-Behindertenrechtskonvention Möglichkeiten, eine gesetzliche Vertretung in Form von Sachwalterschaft zu vermeiden und durch ein erweitertes Clearing vorab alternative Unterstützungen zu erschließen. Die Ergebnisse der begleitenden Evaluationsstudie des IRKS wurden in Band 7 der Schriften zur Rechts- und Kriminalsoziologie veröffentlicht. Die Publikation bietet wertvolle Erkenntnisse zum komplexen Zusammenwirken von persönlicher Lebenssituation und privatem Umfeld, der eingebundenen öffentlichen und sozialen Institutionen sowie der jeweiligen regionalen Infrastruktur an Unterstützungsangeboten.
IntroductionPart I Law related to the mental health treatment of persons with intellectual disabilityPart II Legal questions requiring evaluation of persons with intellectual disabilityConclusion
References
In Western jurisprudence, the concept of capacity is a legal presumption. It rests upon the assumption that each of us, at adulthood, is best able to decide what is in our best interest, and that we ought to be left alone to pursue our own choices (Sabatino and Basinger 2000). Incapacity is a term that defines when a state may take actions to shatter this presumption and limit the individual's right to make decisions about his or her person or property based on disability. Guardianship or conservatorship is the process in which this determination is normally made. Conceptually, incapacity may be seen as a legal fiction. This means that it is a construct treated as a fact, whether or not it is really so, because it is recognized as having utility. Here, we are referring to legal incapacity, and not clinical or de facto incapacity. © 2012 Springer-Verlag Berlin Heidelberg. All rights are reserved.
BACKGROUND: Research has consistently shown that self-determination, a person's authority and opportunity to make life choices, is a key element for a meaningful and independent life. Nevertheless, many young adults with disabilities are placed in overbroad or undue guardianships - guardianships imposed on people who have the capacity to make their own decisions or who can use less-restrictive alternatives to guardianship - denying them their right to make fundamental choices about where they live, what they do, and with whom they interact. OBJECTIVE: This article gives an overview of the negative implications of overbroad or undue guardianship, the benefits of self-determination, and ways Vocational Rehabilitation (VR) supports and services can provide employment-based education and training to help young adults with disabilities develop and demonstrate self-determination, gain independent living skills, and overcome any perceived need for guardianship. CONCLUSION: People with disabilities who are encouraged and supported to make their own decisions are better employed at higher salaries and more independent.VRsupports and services focused on employment-based self-determination and independent living skills can empower young adults with disabilities.
Guardianship is a complicated legal concept, which is further complicated by differences from state to state in the framing and implementation of distinctly different forms. Few professionals explain the long-term consequences of obtaining guardianship or provide the range of alternatives available to support an adult with disabilities. This study reports descriptive data from a national survey on guardianship and people with disabilities. The results indicate that regardless of who provides information about guardianship, and regardless of disability classification, full guardianship is consistently discussed most frequently while other options are rarely discussed. We describe implications for practice and provide recommendations. Specifically, supported decision making is described as one potential alternative to legal guardianship that, according to these data, is the least frequently discussed with parents, but which has the potential to avoid many of the legal and social pitfalls that guardianship presents. Limitations and current research needs are described.
This chapter reviews different approaches to management of declining cognitive and decision-making powers of aged citizens to determine whether the most appropriate contemporary balance points have been found between philosophical values of autonomy and paternalism, the respective roles of state and civil society, respect for cultural values and pluralism, and tolerance of reasonable degrees of individual risk. Particular attention is devoted to the implications of preferences for supported decisionmaking rather than substitute decisionmaking, as expressed in recent international conventions. It argues that the civil citizenship goal of maximal social participation by aged citizens retains its appeal, resonating with contemporary ‘capability‘ theories of justice. However countries must remain mindful of the need to craft laws, institutions and programs in light both of domestic cultural values and evidence-based assessments of competing legal or other policy instruments.
Disability rights law has expanded over the past twenty years from near non-existence to developing into an international legal norm, particularly through the recent United Nations convention on the Rights of Persons with Disabilities. In this work, the authors examine the case of Lithuania and its process for determining when disabled persons lack legal capacity, as measured against the international legal standards applicable to this issue. The authors conclude by offering suggestions about how Lithuania may make determinations as to legal capacity in a way that is consistent with the emerging global legal standards on disability rights law.
Society is largely blind to the ongoing violations of international human rights law in the context of the institutional commitment and treatment of persons with mental disabilities. Notwithstanding a robust set of international law principles, standards, and doctrines, people with mental disabilities live in some of the harshest conditions that exist in any society. The recent ratification of the United Nations Convention on the Rights of Persons with Disabilities forces all nations to take seriously these issues, and the conditions that are faced on a daily basis by persons worldwide who are institutionalized because of mental disability. These conditions are the product of neglect, lack of legal protection against improper and abusive treatment, and, primarily social attitudes ("sanism" and "pretextuality") that demean, trivialize, and ignore the humanity of persons with disabilities. This book draws attention to these issues, to shed light on a shame that governments continue to ignore, and to invigorate the debate on a social policy issue that remains "beneath the radar" for most of the world's nations by examining the mistreatment of persons with mental disabilities around the world. This book "matters," not simply to institutionalized persons and their families, but to all concerned citizens of the world. Governmental inaction (in some cases, through benign neglect; in others, because of malignant motives) demeans human dignity, denies personal autonomy, and disregards the most authoritative and comprehensive prescription of human rights obligations. These issues should matter to all citizens of the world who take human rights seriously, and who care about how we treat those who remain, in many nations, locked away in facilities that violate any concept of fundamental fairness in conditions that still shock the human conscience. They should matter to policymakers, to governmental officials, to mental health professionals, to human rights advocates and activists, and to scholars.
