Selected research and Legal Issues
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.
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.