Monday, July 24, 2017
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LAW & POLICY

  • UN Convention on the Elimination of all forms of Discrimination Against WomenAs part of their consultation on the UN Convention on the Elimination of all forms of Discrimination Against Women, the Irish Human Rights and Equality Commission (IHREC) met with a group of women with disabilities at Inclusion Ireland’s offices.

    The women raised issues relating to access to education and employment, independent living and stereotyping of women with disabilities.

    We also made a submission to the National Women’s Council of Ireland towards the Shadow Report of The Convention on the Elimination of all Forms of Discrimination Against Women.

    ● Submission on a new National Women’s Strategy 

    Inclusion Ireland made a submission to the Department of Justice and Equality as part of the consultation process on a new National Women’s Strategy for the period 2017-2020.

    Our submission highlighted a number of obstacles that women and girls with intellectual disabilities currently face.

    These obstacles include poverty and social exclusion, barriers to employment; difficulties in accessing health services; inadequate protection from sexual offences legislation; undue interference with rights to sexual relationships; lack of support when parenting and barriers to accessing justice.

    ● Incomes fall and poverty increases for people with disabilities 

    In February, the Central Statistics Office released the latest data from the Survey on Income and Living Conditions (SILC) 2015.

    The SILC is the national measure of income, poverty and living conditions in Ireland. Statistics are released every year which allows for the tracking of trends between years.

    The SILC allows us to compare income and living conditions for those out of work due to illness or disability with the population as a whole.

    ● Disability and Additional Needs in Education receives C+ in Report Card

    The Children’s Rights Alliance launched its annual assessment of the Government’s performance of upholding the rights of children in February. Overall, the alliance’s Report Card 2017 gave the Government a D+ grade – a drop from a C grade and the poorest result in six years.

    The report gave Disability and Additional Needs in Education a C+. It reported progress on Government commitments in consultation with stakeholders with regard to how best to progress sections of Educations for Persons with Special Education Needs (EPSEN) Act and examining the adequacy of current special education access and funding provision.

    The report card also noted that in broadly welcoming the new model for resource allocation, Inclusion Ireland has noted that the model does not provide an independent appeal mechanism for parents if they feel their child has not been allocated an adequate amount of hours.

FAMILIES

  • Connect Family Network – Swinford Library and Cultural Centre, Co MayoInclusion Ireland will be providing four free training and information talks for parents, siblings, friends and carers of children and adults with an intellectual disability in Mayo in the coming months.

    The series will cover four talks on community living, assisted decision-making and practical advocacy supports. All talks will take place in Swinford Library and Cultural Centre, Swinford, Co Mayo.

    The meetings will be held on Wednesday, April 12th (7.30pm-9.00pm); Saturday, May 6th (11.00am-1.30pm); and Saturday, June 10th (11.00am-1.30pm).

    ● Connect Family Network – Killarney, Co Kerry, May 3rd

    The Connect Family Network is holding a free event in the KDYS Youth Centre, Fairhill, Killarney, Co Kerry on Wednesday, May 3rd (11.00am to 1.00pm).

    There will be information on the Assisted Decision-Making Act 2015 and advocate with the National Advocacy Service (NAS) for people with disabilities, Mary Carroll, will give information on their service.  The event is also a good opportunity to connect with other family members and share experiences and issues.

    This free event is for family members of people with intellectual disabilities people with intellectual disabilities themselves. Places are limited. Please register with Inclusion Ireland on (01) 8559891 or admin@inclusionireland.ie if you would like a place.

    ● Connect Family Network – Navan, Co Meath, May 27th 

    The Connect Family Network is holding a free event for family members at the Claremont Stadium, Commons Road, Navan, Co Meath on Saturday, May 27th (11.00am to 1.00pm).

    The Agenda will consist of information on the Assisted Decision-Making (Capacity) Act and the implications of the act for families; a talk by Maggie Woods on AT Network and Personal Budgets; and an open forum to talk about the issues facing families and a chance to network with other family members.

    This free event is for family members of people with intellectual disabilities people with intellectual disabilities themselves. Places are limited. Please register with Inclusion Ireland on (01) 8559891 or admin@inclusionireland.ie if you would like a place.

    ● Connect Family Network – Letterkenny, Co Donegal, June 13th 

    The Connect Family Network is holding a free event for family members in the Station House Hotel, Letterkenny, Co Donegal on Tuesday, June 13th (11.00am to 1.00pm).

    The agenda will consist of the impact of the Assisted Decision-Making (Capacity) Act; Ciara Brogan from the National Advocacy Service (NAS); and an open forum to talk about the issues facing families and a chance to network with other family members.

    This free event is for family members of people with intellectual disabilities people with intellectual disabilities themselves. Places are limited. Please register with Inclusion Ireland on (01) 8559891 or admin@inclusionireland.ie if you would like a place.

    ● July Education Programme 2017

    The Department of Education and Skills is currently preparing for the July Education Programme 2017. Please click the link below for more information and to register for updates.

    July Provision (Department of Education

     

inclusion newsSELF-ADVOCACY

  • Paul Alford lights candle for people with a disability who died in HolocaustInclusion Ireland self-advocacy project worker Paul Alford (above right) lit a candle for persons with disabilities in the holocaust at the Holocaust Memorial Day in the Mansion House on Sunday, January 29th.

    The event cherishes the memory of those who perished in the Holocaust and recalls the millions of innocent Jewish men, women and children and others, who were persecuted and murdered by the Nazis because of their ethnicity, disability, sexual orientation, political affiliations or their religious beliefs.

    The memorial event was also attended by Minister for Expenditure & Public Reform Pascal Donoghue, Brendan Corr (Dublin Lord Mayor), former President Mary McAleese, Chief Justice Susan Denham and Holocaust survivor Tomi Reichental..

Joanne O'RiordanEVENTS

  • Joanne O’Riordan organising UNCRPD demonstration in Dublin on March 30thDisability rights activist Joanne O’Riordan – along with over 100 disability organisations – is planning a public demonstration in Dublin on Thursday, March 30th to highlight the 10-year anniversary of Ireland’s failure to ratify the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

    The demonstration will be taking place outside Dáil Éireann, Kildare Street, Dublin 2. Inclusion Ireland will be supporting the event. More information will be available on Joanne O’Riordan’s Facebook page or via her Twitter feed @nolimbsnolimits

    The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.

  • ‘March for our Children’ protests taking place across country on April 3rd A group of parents are organising nationwide ‘March for our Children’ protests to highlight a lack of services for children and families with additional needs on Monday, April 3rd.

    The protests will be taking place in Cork, Tipperary, Dublin, Sligo, Westmeath, Waterford, Kildare and Carlow.

    The protests will start simultaneously at 10.00am. The events will coincide with the ninth annual World Autism Awareness Day on Sunday, April 2nd.

    ● Community Hub for Assistive Technology (CHAT) to hold gathering in ChildVision 

    Community Hub for Assistive Technology (CHAT) – a community of practice driven by people who share a passion and believe in the transformative effect that assistive technology has on individual’s lives – will be hosting their next gathering at the ChildVision in Drumcondra, Dublin 9 on Wednesday, April 26th.

    CHAT raises awareness of barriers (inaccessibility) and also looks at assistive technologies that will help to create a groundswell of support needed to overcome inconsistencies in the provision of assistive technology in Ireland.

    Their Discussion Paper ‘Assistive Technology for People with Disabilities and Older People 2016’ is calling for a national commitment to Assistive Technology service development that will lead to real and lasting change in supporting and empowering people to continue to live in their own homes and in their own communities.

Kieran Murphy details a recent Irish High Court case with implications across the areas of disability, mental health and civil rights.

  • This case study examines a recent Irish High Court case regarding an application by an adult to be discharged from his detention in an institution in the U.K.
  • This detention had been ordered by the Irish courts when the applicant was still a child.
  • The case raises a number of interesting issues regarding the implementation of the Mental Health Act 2001, the Disability Act 2005 and the High Court’s powers to order the detention of people to vindicate their constitutional rights.

The jurisdiction of the High Court to detain people if they were a danger to themselves or others was extended to vulnerable adults in 2011 with the case of Health Service Executive (HSE) v. O’B[1]. In that case the vulnerable person in question had a long standing history of what was termed “very challenging behaviour” and “extreme violence”.  At the time of the case he was over 18 and thus an adult. The HSE argued that it was in his best interests that he received clinical, medical and nursing treatment in an environment of therapeutic security, namely the Central Mental Hospital in Dundrum. The judge said that “where an adult lacks capacity and where there is a legislative lacuna so that the adult’s best interests cannot be served without intervention by the Court, I am satisfied that the Court has jurisdiction to intervene.” Accordingly an order was made by the judge to detain Mr O’B, subject to regular review by the court.

In the HSE v O’B the person detained had been found to lack capacity. An interesting potential extension of that case was heard in the High Court on 6th October 2016[2].  Ms Justice Bronagh O’Hanlon gave a judgment on a case concerning J.B., who had lived in St. Andrew’s Hospital in Northampton by order of the Irish High Court since 2011. He had been placed in the hospital, while still a child, as there was no facility in Ireland suitable for his needs. When he reached the age of 18, J.B. challenged this continued detention or any other similar plans for his care as being a deprivation of liberty now that he was an adult.

The judge considered whether the Mental Health Act 2001 did apply in this case. JB had been diagnosed with a personality disorder. It was found that personality disorder did not come within the scope of a “mental disorder” under the Mental Health Act 2001 and so he was not detainable under that Act. On this point the judge concluded that as “JB is an adult with capacity and is not presently detainable under the Irish Mental Health Act 2001, any further detention (in St Andrew’s Hospital) is illegal”.

During the case the judge referenced another statutory scheme, the Disability Act 2005, saying that “the HSE is under a statutory obligation to provide services to a person with a disability such as J.B. under the Disability Act 2005, should he be formally assessed as a disabled person”[3]. The judge said if JB was found to be a person requiring accommodation needs under the Disability Act, then there would be an obligation on  the HSE and/or TUSLA to provide secure and settled accommodation for him pending his being given long-term accommodation by the local county council. The Judge appeared to reject JB’s own direct evidence that he could look after his own living arrangements and noted that there was an available bed in the Central Mental Hospital where JB could temporarily remain as a voluntary patient pending provision of the promised place with a disability service provider. Ms Justice O’Hanlon continued that “it is in his best interests that he would be monitored weekly in that area to ensure that he is compliant with his medication”[4]

This case raises a number of interesting questions. Firstly, it was not clear from the judgment if the obligation on the HSE to provide a service to J.B. was based on the Disability Act 2005 as there was no evidence provided in the court report as to whether an assessment of need had been completed for him as required under the Disability Act 2005.

The second interesting point is whether this case extends the inherent jurisdiction of the High Court to detain persons “with capacity” to vindicate their constitutional rights. Counsel for J.B. had argued that that the law was clear that a person with capacity cannot be detained under the inherent jurisdiction and that there was no legal basis to detain J.B. It is here that the ambiguity of the decision in this case becomes apparent. In relation to J.B.’s detention in St Andrew’s Hospital it was found that he was not detainable as he had capacity; but he was to be detained in the Central Mental Hospital. The judgment itself does not reach a conclusion on whether this “new” detention in the Central Mental Hospital is based on the inherent jurisdiction of the High Court to detain J.B. in order to vindicate his constitutional rights. This new detention appears to be on the basis that J.B. voluntarily chose to go to the Central Mental Hospital.

The case raises another issue regarding deprivation of liberty. Ms Justice O’Hanlon said that “it is in his best interests that he would be monitored weekly in that area to ensure that he is compliant with his medication”.[5] This direction that he be “monitored weekly” would appear to be a deprivation of his liberty, regardless of whether he was a “voluntary” patient in the Central Mental Hospital or not.

Finally this case brings into focus the High Court extending its remit in the absence of a statutory or legislative framework. In an analogous case regarding the use of court power’s in the absence of legislation concerning children, S.S. (A Minor) v. Health Service Executive [2008] [6], it was said that the frequent invocation and exercise of exceptional constitutional powers, absent principles of application or, any statutory or regulatory framework is undesirable.

[1] Health Service Executive v O’B. (a person of unsound mind not so found) (2011) IEHC 73

[2] Health Service Executive v JB (No.2) (2016) IEHC 575

[3] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 115.

[4] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 117.

[5] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 117

[6] S.S. (A Minor) v. Health Service Executive [2008] 1 I.R. 594 at paragraph 76

Author Bio

Kieran Murphy B.C.L.; LL.B; R.N.I.D.  is a lecturer on the Diploma in Disability Studies in University College Cork.

Based on a presentation given to Inclusion Ireland, Dublin, 14th September 2016.

  • Ireland is still to ratify the United Nations Convention on the Rights of People with Disabilities.
  • Errol Cocks writes about Supported Living in Australia and Individualised Funding.
  • It is important for people with disabilities and their families to be in control and not government / NGOs.

In 2007, we started a research project to look at what we have called “individual supported living” (ISL). Our idea about ISL was based on Article 19 from the United Nations Convention on the Rights of People with Disabilities (UNCRPD). Many countries have signed up to the UNCRPD, including Ireland about 10 years ago, although I’m not sure that Ireland has yet ratified the Convention. Article 19 addresses the critical issue of the conditions under which people with disability live. It states that people with disabilities should have:

  • …the opportunities to choose their place of residence and where and with whom they live…and are not obliged to live in a particular living arrangement.
  • …access to a range of in-home residential and other support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

We wanted to challenge some of the common assumptions that contribute to people with disabilities in many parts of the world still living in institutions or other forms of congregate care such as hostels or group homes. Our research project was based on positive assumptions about community living, including:

  • If the right individualised supports are provided, all people with disabilities can live in their own home.
  • They do not have to be “independent” in order for this to happen – in fact who is really “independent”? – human beings are interdependent.
  • They do not have to live with other people with disabilities – unless they freely choose to do so.

In Australia, major reform of disability services, especially for people with intellectual and developmental disabilities, has been underway since the 1950s. The first “parent revolution” occurred in the 1950s and brought about some fundamental changes. This happened when parents became frustrated that their sons and daughters with disabilities were not welcomed into education and work. In Australia, and other Western countries, parents set up non-government organisations (NGOs) that sought community and political support to establish hostels, educational/day centres, and sheltered workshops.

 

Unfortunately, as parents became older, their influence waned as many of these NGOs grew much larger, much more formal and dominated by management. This growth was accompanied by substantial investment of financial, social, and political capital that is still a very powerful influence on how services and support are provided. Reform of many of these large NGOs is very difficult and sometimes strongly resisted. Even in 2016 in Australia, congregation of people with disabilities is still the dominant provision of living services – the Australian Institute for Health and Welfare reported data in 2016 highlights that 16,751 people with disabilities lived in group homes and 2,800 in institutions in 2014-15. These conditions make reform extremely challenging for governments and service providers – but far from impossible even if the intention and will is not there.

 

In Australia, major reform in disability policy and practice accelerated from the 1980s. Here, I will focus on what have been some of the major influences and types of reform. These are shared with other Western countries that have also committed to reforms.

 

  1. There is a contemporary parent movement that challenges education systems to include their sons and daughters, and employment systems to include them in work. At the same time, families are less willing for their adult children to be placed in congregate, institutional settings and they advocate for ordinary homes including individual supported living. Real reform is occurring through family use of “circles of friends”, “Microboards”, and small business/enterprise initiatives.
  2. Important social theories have strongly influenced disability policies and practices. These include “normalisation”, “social role valorisation”, “person-centred” principles and practices, and the “social model” of disability.
  3. In many parts of the world, the dominance of the medical approach to disability has been challenged. Here in my hometown, in the early 1970s, psychiatric nurses were replaced by workers called “social trainers” who were educated within a developmental/educational rather than a medical If people with disabilities were ill, they received appropriate medical and nursing care, but their lives were not governed by a medical framework.
  4. A related development was the separation of disability services from health and mental health. When I entered the disability field in the early 1970s, disability services were part of mental health services. By the 1980s, disability services were brought under an independent Disability Services Commission which enabled various reforms to occur.
  5. Finally, two innovations occurred in Western Australia around 1990 that have made a major contribution to reform of services and the development of individual supported living. The first was the establishment of Local Area Coordinators (LACs) who, at least in the first 10-15 years, received substantial training around the principles mentioned above and also with the involvement of family members and people with disabilities. This association of key stakeholders had many benefits in deepening the understanding of LACs about families and disability. At the same time, LACs were able to provide small amounts of discretionary funding to families that enabled small but important changes to occur such as provision of a ramp, or even a family holiday. This was the beginning in Australia of individualised funding, a powerful contribution to reform, enabling people with disabilities and their families to strongly influence and make decisions about their own lives. Individualised funding, if it comes under the influence of families and people with disabilities rather than flowing directly from governments to NGOs, is a critical strategy to enable people with disabilities to live in their own homes.

 

The aims of the Individual Supported Living (ISL) Project that we began in 2007 were to:

  • describe ISL for adults with intellectual and developmental disabilities in its different forms;
  • establish an evidence base for quality in ISL arrangements; and
  • provide education and training focused on ISL.

The project was funded by the Australian Research Council and ran across 3 States: Western Australia, Victoria, and New South Wales. We spent a lot of time learning about ISL by talking with people with disabilities, families, NGOs, and support workers and eventually produced a tool for measuring quality in ISL arrangements. We did this by having small teams (3 or 4) meet with people in ISL arrangements, their families, and support workers, and use the tool to assess quality aspects of each arrangement. An experienced person led the team and team members were provided with training. To date we have completed 120 reviews and intend to complete around another 145. So we are developing a very comprehensive description of different ways in which ISL arrangements occur and what they achieve in outcomes for adults with disabilities. This stage of the project will be completed in June 2017.

 

The quality tool we use has 8 key themes that include:

  1. Exploration of the role of leadership in setting up and maintaining each arrangement.
  2. Exploring aspects of home which includes issues such as security of tenure and how home reflects the person’s likes and dislikes.
  3. Providing the arrangement for one person at a time – no congregation of people with disabilities.
  4. How people in the arrangement plan, especially longer term planning to take into account changes that may occur.
  5. How the person and those close to the person control the person’s life and aspects of the arrangement.
  6. The kind of supports provided for the person, including both paid and informal support.
  7. The extent to which the person is thriving in the arrangement.
  8. How the person is experiencing social inclusion through relationships and social participation.

The adults in the Project with intellectual and developmental disabilities are a diverse group. About half of the people are female. They range in age from 18 to over 60 years. Length of time in the arrangements varies from less than a year to over 20 years. Almost a quarter of participants have high support needs. We have identified 5 types of ISL arrangements, each of which has more than one form: living with a co-resident (often the case with younger people), living in an intimate relationship, sharing a home, living with a host family, and living alone. Support is provided in many ways including formal, paid support, informal unpaid support, live-in and visiting support, and with the involvement of Microboards or circles of support. There are some key issues around the tenure of the person’s home. Tenure ranges from ownership, shared ownership, private rental, housing association/social housing, and family-provided home. We found strong evidence of the effectiveness of partnerships between formal and informal support.

 

We are currently planning the next stage of this research. This will shift the focus from ISL arrangements to people with disabilities who are living with their families or who live in group homes. Our aim is to use education and training based on our research so far and the ISL tool to encourage families and NGOs to explore the possibilities of individual supported living. We have some publications describing aspects of the ISL project and you are welcome to contact me if you would like information about these or other aspects of the Project.

 

In conclusion, individual supported living is clearly a positive way for people for adults with disabilities to be enabled to live good lives in their own homes. We believe this is a crucial direction to follow for reform of disability policies and practices. It is consistent with UN and other conventions and stated policies. Most importantly, it promotes the social inclusion and participation of adults with disabilities, contributes to a “good life”, and reflects a decent society.

Author Bio

Errol CocksErrol Cocks, MPsych PhD is a Research Professor at the School of Occupational Therapy & Social Work in Curtin University, Perth, Western Australia. He has worked in the disability sector since 1970.

Email – e.cocks@curtin.edu.au