Selected research and Legal Issues
Article: Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities, [de Haas, C.; Grace, J.; Hope, J.; Nind, M. Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities. Soc. Sci. 2022, 11, 159. https://doi.org/10.3390/socsci11040159]
Some quotes (but the whole article is well worth reading):
- Positive developments in inclusion in line with ‘Nothing about us without us’ have rarely extended to people with profound intellectual disabilities. Advances in inclusive research are in danger of leaving this group (and their families and allies) on the outside, with researchers relying on proxies at best, or more often omitting this group as ‘too difficult’ to include in the research process at all. This paper argues that finding a way for people with profound intellectual disabilities to belong in inclusive research is important.
- People with profound intellectual and multiple disabilities are yet to belong in any meaningful way to the inclusive research movement(s) and are often excluded from research altogether. This means not just exclusion for individuals with profound intellectual disabilities, but the loss of the insights that could be gained from their involvement.
- Features of recent history have culminated in a model of inclusive research in which the people for whom the research is ‘for’ or is conducted ‘alongside’ are required to be able to express their views about needed research and fulfill roles that academic researchers have traditionally occupied—colleague, interviewer, observer, seeker of patterns in the data, writer, disseminator and creator of impact. This means that they need to match what a conventional researcher knows and does.
- When reflecting on work with a co-researcher who resists such molding, this is neither fair nor reasonable. It is no wonder, then, that inclusive research has not been able to stretch its parameters sufficiently to enable people with profound intellectual disabilities to belong.
- High bars are evident in inclusive research, where people with profound intellectual and multiple disabilities are often excluded because their forms of communication lie beyond the technologies and practices of traditional, verbally based research roles, meaning that they ‘have had little or no chance to self-author their place within our historical record, nor to contest the many “unauthorized” representations’ in research accounts. They have been the ‘lost voices’ of qualitative research and may be the ‘most silenced’.
- Without intending to do so, moves to pull some people inside inclusive research expose how people with profound intellectual disabilities are largely left sitting on the outside. Some definitions of inclusive/participatory research would not accommodate projects involving people with profound intellectual disabilities, but such projects ‘serve an important purpose in calling these boundaries into question’.
- A profoundly disabled person may be unable to speak or contribute to a process of rational argument, but even when these capacities are absent, she remains a conscious agent, whose acts reveal human intentions and purposes.
- We have moral obligations to people with profound learning disabilities. Only by engaging with these can we explore the nature and limits of concepts such as justice, rights, respect, care and responsibility to inform relevant policy, provision and practice.
- Society is poorer if we keep some people with intellectual disabilities and their families invisible. We need research that explores how different forms of agency can contribute to and enrich inclusive research processes and findings.
- Our desire to find ways to do research inclusively of/with people with profound intellectual disabilities is partly a recognition of their marginalization in society—they and their families are the excluded of the excluded. This has meant that research agendas have been underpinned by gross, negative and erroneous assumptions of impoverished lives. Assuming the quality of people’s lives to be low results in discrimination with real-world consequences.
- If the research community heard more from people with profound intellectual disabilities and their families, the benefits could be transformative. We might think differently about the costs in money, time, space and effort of including them and appreciate the value of their lives. Community is not a problem to solve; instead, we need to build a community around our most vulnerable members.
- We argue that doing research inclusively with people with profound intellectual and multiple disabilities is possible. If we can work out their involvement as participants who are able to share their experiences, then we can work out how they can accomplish further research roles. Moreover, meeting the challenge of meaningfully including people with profound intellectual and multiple disabilities in research can be a catalyst for developing approaches that are capable of hearing meaning in new ways, which, if clearly documented, will benefit the whole inclusive research community.
- The communications of people with profound intellectual disabilities are pre-intentional, and their communications can be systematically interpreted by a parent or another person who knows them well. This is in contrast to viewing parents as too close to the situation, effectively silencing both. The intimacy of a parent and child and the parent’s caring labor gives us not a lesser grasp of moral truth but a greater one’.
- Concerns about inferring the perspectives of people with profound intellectual disabilities are rooted in ideas about the ‘self-representing subject’, ‘seen as autonomous, articulating their authentic self and interests …, whereas speaking for the other is automatically deemed suspicious because this form of representation is mediated by the positioning of the speaker, their biases, privilege, and context’. The concept of relational autonomy supports a view that the role of engaged others in helping the individual to live in and make sense of the world, including translating, interpreting and communicating their perspectives, is part of someone’s authentic autonomy, rather than something to be feared as undermining it.
- Some of the most established inclusive research teams had established a way of being; they could just be people together alongside doing research together. A research culture that can accommodate ‘being with’ as a core element will hear the voices of people with profound intellectual disabilities by enjoying their presence and letting this inform the research in creating intersubjective knowledge together.
- People with profound intellectual disabilities are capable of being responsive to their environment and of forming deep relationships with people they know well. This means that they can play a role in a research partnerships or teams where each person has a unique, interdependent role.
- People with profound intellectual and multiple disabilities are human not because of a list of psychological or cognitive capacities, but because of how they are in the world and how they interact with others and are cared for by others.
- Just as the self-advocacy movement has left people with profound intellectual disabilities and their families with a sense of not belonging, so too has inclusive research. There is a risk that in emphasizing the capacity of self-advocates and self-advocacy, people with profound disabilities are excluded on the grounds of cognitive incompetence.
We need to resist seeing people with profound intellectual disabilities as a deviation from what it means to be intellectually disabled and from what it means to be human. Our position is one of optimism. We believe that by freeing ourselves of the preoccupation with autonomous or verbal voice, and by making explicit the issues involved, we can begin to make use of the conceptual and methodological tools at our disposal to do research inclusively with people with profound intellectual disabilities. We are confident that people with profound intellectual disabilities have knowledge to share and that, by being open to this, we all have much to gain.
Thesis: An exploratory study of the impact of a proposed move to dispersed housing on the perceptions and attitudes of family members of people with intellectual disabilities, Róisín Nic Ginneá, Limerick Institute of Technology, Ireland, 2019
From the Abstract:
The “Time to Move on from Congregated Settings” report (HSE, 2011) has sparked much debate among families of those who face the proposed move to dispersed housing in the community.
The overall research aim was to enhance understanding by engaging with the family members on the impact of a proposed move to dispersed housing on their perceptions and attitudes. The research involved a detailed review of the existing literature and a number of gaps were identified. The study explored the opinions of the family members in relation to what type of living arrangement they think is most suitable for their family member.
The main themes included quality of existing supports in the campus-based setting, impact of the level of disability or impairment on suitability of living arrangements, perceived lack of supports in the community and perceived lack of safety or opportunities for independence in the community. Some of these findings reflected aspects of the literature review however; more findings directly contradicted existing research.
It was concluded that families were happy with their relatives’ current campus-based setting and were opposed to proposed moves to dispersed housing in the community. However, families acknowledged that they were not opposed to the ‘Time to move on from Congregated Settings’ strategy but that the strategy should only be implemented for those who choose to live in the community and that it should allow choice for those who choose to stay in their current ‘congregated setting’.
Recommendations contained in the thesis are:
Further research should be conducted with residents and their families who are residing in congregated settings and their perspective should be used to educate policy makers to inform the service delivery.
The Health Executive should focus on assessing the existing congregated settings on an individualised basis and not on the number of residents alone. The settings should be assessed to determine if the service provision is of good quality or not. The HSE should then focus on improving and developing some of the congregated settings which are deemed to be providing good quality care. A sense of connectedness should be prioritised instead of the physical move to the community.
The working group involved in the “Time to Move on from Congregated Settings report” (HSE, 2011) should facilitate a consultation with residents and families to undercover the needs and wishes of residents and revise the strategy. The mandate of closing all congregated settings and stopping new admissions should be reviewed.
Availability of the support services in the community should be assessed before any residents are transitioned to community living. Creation of new residential places should be prioritised for those without services, who may be residing at home with elderly carers and those who have been inappropriately placed in nursing homes.
Decongregation as an approach should be reviewed. If people are residing in living arrangements of poor quality many options should be presented to the residents and their families. These options should deliver individualised supports and care, whether in the community or a campus-based setting.
It is important to acknowledge that while these recommendations may be challenging to implement, the strength of the families and their efforts to campaign for more than a ‘one size fits all approach’ may impact on policy makers more effectively than any research.
Study: McCarron M, Lombard-Vance R, Murphy E, O’Donovan MA, Webb N, Sheaf G, McCallion P, Stancliffe R, Normand C, Smith V, May P. Quality of life outcomes and costs associated with moving from congregated settings to community living arrangements for people with intellectual disability: An evidence review. Dublin: Health Research Board: Dublin. (2018)
Purpose: To systematically evaluate the evidence on quality of life outcomes and costs associated with moving from congregated settings to community living arrangements for people with intellectual disability.
Review questions: The review aimed to answer three research questions:
1. What is the evidence on how deinstitutionalisation for adults with intellectual disability affects quality of life?
2. What is the evidence on how deinstitutionalisation for adults with intellectual disability affects costs?
3. Of the evidence for Questions 1 and 2, what is the evidence on deinstitutionalisation specifically for
people who have highly specialised support requirements: people with severe physical and intellectual disability who have complex medical needs (such as people who use ventilators), people who are a forensic risk or who are ex-prisoners, people with dementia, and people with very challenging behaviours?
This is a review of existing studies. Some of the findings and conclusions in relation to quality of life are:
- Although there is a large body of studies examining quality of life outcomes of residential moves by people with intellectual disability, small samples, a lack of systematic design, incomplete data, and variations in what was measured over different time frames mean that few studies were worthy of inclusion in a systematic review, and even fewer met the criteria for meta-analysis.
- In summary, while some of the literature argues that community living is unambiguously better for people with intellectual disability, other assessments are more nuanced and raise concerns about small sample sizes, the selective use of data, the failure to address differences in populations served and in regulatory environments, and the over-reliance on cross-sectional studies that compare outcomes across settings but not within an overall decongregation process.
- In the wider literature, there is debate regarding whether or not those who reside in the community are truly integrated into their community in line with the ethos of ‘inclusion’.
- Few studies addressed the quality of life outcomes of subpopulations with special support needs.
- Overall, the results indicate that people with intellectual disability and high support needs benefit from quality of life improvements related to deinstitutionalisation. Nevertheless, there is evidence that this group may not benefit to the same degree as those with less complex needs.
- Taken together, these findings suggest the need for caution in statements made about improvements (i.e. relative change) in quality of life. There is a need to establish whether the quantified change in quality of life represents a real and qualitative change in the life of the individual.
- While the studies included in this review addressed some issues, such as challenging behaviour and higher support needs, there were limitations in the literature in terms of how groups with specific needs were addressed and the depth in which issues were investigated. There was an overall scarcity of consideration of those with high support needs in the included literature.
- The authors of this review identified a need for further longitudinal studies over longer periods of time, along with the need to account for confounding variables such as service types; location of residence; proximity to services, transport, and established contacts; and family and friendship maintenance strategies. Furthermore, future study designs would benefit from the inclusion of additional baseline measurements and independent or blinded data collection. The limited length of longitudinal follow-up in the studies included in this review is a barrier to understanding long-term outcomes and their trajectory.
- Again, based on this systematic review, it appears that a gap exists in knowledge about outcomes for particular populations of people with intellectual disability, including people with challenging behaviour, people with high support needs (e.g. people with physical or sensory disability or who require ventilators).
- There was a substantial level of agreement between quantitative meta-analytic (i.e. standardised mean differences for all movers) and other results, supported by the qualitative findings, that a move to the community was associated with improved quality of life versus the quality of life for those living in an institution. However, while it is tempting to suggest that the matter is settled, a number of serious questions have yet to be answered. There remain challenges in certain aspects of quality of life – social integration and relationships, for example, as well as physical well-being for certain subgroups. There is not yet enough knowledge about the long-term course of quality of life outcomes, which is of particular interest considering the ageing nature of this population. Subpopulations with additional needs or who require high levels of support have received insufficient attention in the literature, and more research of high methodological quality is required in order to better understand the needs of a range of groups. While it might be reasonable to say that those with higher levels of intellectual disability and high support needs or challenging behaviour can have improved quality of life in the community, this is based on a small number of studies that are subject to limitations similar to those in the wider literature. The following groups or issues would certainly benefit from additional investigation: people with varying levels of intellectual disability, people of different ages (especially older people), people with specific health needs or impairments (e.g. people who use a ventilator), people with dementia.
- The research highlights that a move from a large institution to a smaller residence is insufficient for achieving unambiguous quality of life improvements. Beyond the scope of this review, but hinted at in the results chapter above, is the importance of increasing choice and community integration for individuals.
Thesis: The right to supported decision-making for people rarely heard, Jo Watson, Deakin University, Victoria, Australia, 2016
In the introduction, Jo describes the people that her work is about and the challenges they face - many people who live in St Mary of the Angels share similar characteristics. Some quotes are below:
"People with severe or profound intellectual disability are dependent on others for support in most life areas, including communication. They generally communicate informally using nonverbal behaviours such as gesticulation, vocalisations, eye gaze, facial expression, respiration shifts and touch, much of which can be very subtle. Understanding formal communication such as written text, sign, speech, photos or pictures is challenging for them. In addition to communicating informally, many people with severe or profound intellectual disability communicate unintentionally. This means, they communicate without the intention of conveying a message to another person. They appear unaware that their actions can have an impact on their environment. This means that for effective information transfer communication partners infer meaning from the person’s behaviours, an activity acknowledged in the literature as an ambiguous and subjective task (Bradshaw, 2001; Bunning, 2009a; Grove, Bunning, Porter, & Olsson, 1999a). People with severe or profound intellectual disability have been referred to as the “excluded amongst the excluded” (European Disability Forum., 2000 p.1)."
"Despite the move away from using labels, there is a compelling argument for using specific language to describe people with severe or profound intellectual disability to signal the degree of support a person requires."
"Moreover, there is a growing call amongst researchers and practitioners for an international agreement on an accepted taxonomy for this group (Leonard & Wen, 2002; Luckasson & Reeve, 2001; Nakken & Vlaskamp, 2007)."
"Those supportive of a consistent taxonomy for people with severe or profound intellectual disability (Forster, 2010b; Nakken & Vlaskamp, 2007; Watson, 2011a) infer that without it, those with severe or profound intellectual disability are at particular risk of exclusion. They believe that to achieve true inclusion individual difference needs to be named as the means by which this group of people can obtain the supports and the resources they require."
"Forster (2010), arguing the need for a consistent taxonomy for people with profound intellectual and multiple disability (PIMD), wrote “people with PIMD deserve the dignity of being named, counted and recognised for who they are, what they need, and how they might be a unique part of our community” (Forster, 2010b p.33)."
Outcomes in Different Residential Settings for People With Intellectual Disability: A Systematic Review. Agnes Kozma, Jim Mansell, and Julie Beadle-Brown. University of Kent, Tizard Centre (Canterbury, Kent, United Kingdom), 2009
The review in general confirms that on average, community-living arrangements appear to be the superior option:
"In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes."
At the same time, it confirms that community living arrangements are not the best option for everyone:
"The variability of outcomes in community services might threaten the consensus supporting deinstitutionalization and community living policies by removing the evidence that community services are better for everyone (Mansell, 2006)."
"Positive outcomes are generally associated with better adaptive skills and abilities, and people with high or complex support needs, including challenging behaviors, are at greater risk of experiencing poorer outcomes in community services. The provision of ordinary environments is not enough to achieve quality and positive outcomes in community services (Mansell, Felce, Jenkins, de Kock, & Toogood, 1987)."
Office of the United Nations High Commissioner for Human Rights:
Thematic study on the right of persons with disabilities to live independently and to be included in the community, 2015.
Extract in relation to Choice, Legal Capacity and Decision-Making:
"Article 19 (a) requires States parties to ensure that persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. This entails the possibility to choose from the same range of options as other members of society, or to reject those options.
The right to equal recognition before the law of persons with disabilities, who shall enjoy legal capacity on an equal basis with others in all aspects of life (art. 12), underpins the right to live independently in the community. Legal capacity consists of two inseparable elements: to be recognized as a legal person before the law and to exercise rights as a legal person under the law. The exercise of legal capacity as recognized in the Convention on the Rights of Persons with Disabilities requires that the will and preferences of a person are respected, and allows for the exercise of free and informed consent. That, in turn, applies to, among other matters, the acceptance or rejection of medical treatment, institutionalization or other life-affecting interventions."
US Media coverage highlighting the increasing need for more effective federal and state protections in the ever-expanding community system of care for people with intellectual disabilities.
US House of Representatives, Judiciary Committee:
Constitution and Civil Justice Subcommittee hearing on Examining Class Action Lawsuits Against Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), 6th March 2018
Opening statement from Bob Goodlatte (Chairman of the House Judiciary Committee): "Today’s hearing examines the devastating effects of class actions on the availability of Intermediate Care Facilities for Individuals with Intellectual and Development Disabilities across the country. ... In recent years, several cases brought by the Civil Rights Division, specifically the Special Litigation Section, have blatantly disregarded the choice requirements set forth in Olmstead v. L.C."
Opening statement from Jerry Nadler: "We must be mindful that in protecting the rights of individuals to be cared for in community-based settings, we have an equal duty to protect the rights of those for whom an institutional facility is more appropriate."
OLMSTEAD: SUPREME COURT OF THE UNITED STATES
OLMSTEAD, COMMISSIONER, GEORGIA DEPARTMENT OF HUMAN RESOURES, et al. v. L. C., by zimring, guardian ad litem and next friend, et al. (1999)
This case concerns the alleged discrimination against two persons with disabilities. They had alleged that the State violated Title II of the Americans with Disabilities Act of 1990 (ADA) in failing to place them in a community-based program once their treating professionals determined that such placement was appropriate.
An implementing regulation for ADA, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”
Justice Ginsburg delivered the opinion of the Court with respect to Parts I, II, and III—A, concluding that, under Title II of the ADA, States are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.
In the opinion, Justice Ginsburg further stated: "We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings." and "Consistent with these provisions, the State generally may rely on the reasonable assessments of its own professionals in determining whether an individual “meets the essential eligibility requirements” for habilitation in a community-based program. Absent such qualification, it would be inappropriate to remove a patient from the more restrictive setting. (...) Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." And recalling an earlier case: "Nothing in this part shall be construed to require an individual with a disability to accept an accommodation . . . which such individual chooses not to accept." and "Persons with disabilities must be provided the option of declining to accept a particular accommodation."
July 2018, VOR letter to Representatives in relation to Olmstead ruling.
LIGAS DECREE: UNITED STATES DISTRICT COURT FOR THE NORTHERN DISTRICT OF ILLINOIS EASTERN DIVISION, 2011
Ligas Consent Decree
The decree re-affirms the right of choice between community-based settings and ICFs/DD (the US equivalent of Irish Congregated Settings) for individuals with developmental disabilities and it requires the State to adequately fund both options.
Extracts from the overview page:
The Ligas v. Hamos lawsuit was filed on July 28, 2005, on behalf of individuals with developmental disabilities who were residing in private, State-funded facilities (Intermediate Care Facilities for Persons with Developmental Disabilities or ICFs/DD) of nine or more persons or who were at risk of being placed in such facilities. Plaintiffs sought placement in Community-Based Settings and receipt of community-based services. On June 15, 2011, a fairness hearing was held and, on the same day, a Consent Decree was approved by the Court.
The Decree does not force individuals who do not want community-based services or placement to move. Nor does it force providers to close beds or enter into downsizing agreements with the State against their will.
The tenets of the Decree will assist the DDD in expanding its community-based system to meet the growing demand for those services, while continuing to honor an individual's choice in deciding on the types of services and settings he or she prefers in order to live a personally fulfilling and productive life.
Within six years of approval of the Decree, all individuals living in ICFs/DD as of the effective date of the Decree who have affirmatively requested Community-Based Settings will move to Community-Based Settings. Placements must be implemented for one-third of all such individuals every two years of this six-year period. For those individuals who wish to continue living in an ICF/DD, the Decree requires the State to honor that choice and to continue to provide adequate funding to meet the needs of such individuals.