/ / Services for people with intellectual disabilities fall short of human rights standards

Services for people with intellectual disabilities fall short of human rights standards

Service, Policy and Legislative Reform Essential

The Irish Human Rights Commission (IHRC) today published its Enquiry Report into the situation of a group of adults with a severe to profound intellectual disability in the John Paul Centre, Galway. The enquiry found that there were serious gaps in the provision of services to residents or people using the facilities of the Centre. The inadequate services stem from systemic problems with the legislative, strategic and policy frameworks set at the national level. Having examined the relevant international human rights law and its impact on the individuals in the Centre and on people in a like situation, the IHRC considers that in addition toquestions of accountability, standards in relation to the right to health, the right to education, the right to non-discrimination and the right to a remedy are not being adequately met in Ireland today.

The IHRC makes 41 recommendations for change that should be swiftly implemented, including:

    

  • Introduction of person-centred needs assessment for all people with disabilities

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  • Reflection of individual needs in service agreements between the HSE and service providers and proper funding protocols put in place

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  • Increased speech & language and occupational therapy services at the John Paul Centre

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  • Independent Health Information and Quality Authority (HIQA) inspections should start without delay

This, the 3rd Enquiry by the IHRC, was conducted following a request from a group of parents of some of the people living in the Centre to enquire into the situation of their adult children who have a severe to profound intellectual disability. The Centre is run by the Brothers of Charity under a service agreement with the Health Service Executive (HSE). The Parent Group felt that the Centre was not properly supported to meet the needs of their adult children. The enquiry considered the situation facing the individuals in the Centre, their parents and families, their carers and the charity that runs the Centre as well as the wider legislative and policy framework.

Dr Maurice Manning, President of the IHRC said



"the people at the heart of this enquiry are one of the most vulnerable groups in our society. They are adults, many of whom have been living at the Centre since they were children. Many of them have never benefited from interventions now available to children. As a result of their severe to profound intellectual disability, their parents and care workers are their human rights defenders. Our enquiry has found that the human rights of the individuals in the Centre have not been fully protected. There are severe gaps in service because the Centre has not been properly supported. Lack of speech and language services are hampering people’s ability to communicate, while the physical conditions at the Centre are more suitable to children than adults. All of these issues are having a detrimental impact on the dignity and wellbeing of the people affected. Urgent action is needed to increase multidisciplinary services including speech and language and occupational therapy in particular."

The enquiry found that the inadequacy of these services appears to reflect inattention by the State authorities to the individuals’ needs. The Government has planned to provide for the needs of people with disabilities for a number of years in the form of the Health Strategies (1994 and 2001), the Disability Strategy (2004), the Health Acts 1947 to 2007, the Disability Act 2005, the EPSEN Act 2004 and the Citizens Information Acts 2000-2007. The enquiry found that the net impact of these initiatives for the individuals in the Centre has been limited.

Further, it considered that the needs of these individuals as determined through individual assessments – either under individual assessments mooted in the Disability Act or locally devised personal outcome plans – are not properly reflected in annual funding applications or allocations. Rather the focus tends to be on an estimate of the general needs in a particular region.

Dr Manning said



"While service agreements between the HSE and charities delivering disability services have improved, the people using the services have complex medical, psychiatric and social needs that require a person-centred approach to assessing individual needs and reflecting those needs in funding protocols. To remedy the situation for people at the Centre and those in similar situations, action is required immediately at service, policy and legislative levels to ensure that human rights standards are met and quality service is provided".

Mr Éamonn Mac Aodha, CEO of the IHRC said that



"above all, people who have a severe to profound intellectual disability and their parents should be able to have their human rights realised under a transparent system which everyone can clearly understand. To give greater protection to people with disabilities, the Government should fully implement the Disability Act, introduce mental capacity legislation and ratify the UN Convention on the Rights of Persons with Disabilities. This convention stresses that people with a disability should be fully integrated in the community and be able to live with optimum independence and functionality. It should be ratified without delay and incorporated into Irish law".

Mr Mac Aodha continued



"Independent oversight is also required. For that to be effective, the ‘National Quality Standards for Residential Services for People with Disabilities’ must be placed on a statutory footing so that inspections of residential centres can be carried out by the Health, Information and Quality Authority (HIQA) as promised under the Health Act 2007."

The IHRC will follow-up with the relevant actors and monitor progress on the implementation of its recommendations in the coming months.

IHRC Recommendations

On the basis of its findings, the Enquiry Report makes recommendations on the measures required to strengthen, protect and uphold human rights in the State.The 41 recommendations can be summarised as:

The 15 recommendations to the Department of Health include:

    

  • service agreements should be redesigned so that funding levels and accompanying protocols are delivered "bottom up" rather than "top down". Individual needs assessments, informed by personal outcome plans or similar programmes, should inform the service levels, staffing levels and the capital funding levels required to ensure private life and dignity and the highest attainable standard of health. A "core" funding contingent should be identified to ring-fence front line services;

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  • the Department should convene a working group comprising the Department, the HSE and service providers:

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  • to establish an agreed national average cost for residential, respite and day services, informed by the range of person-centred needs assessments – which in turn could be employed in Service Agreements;

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  • this work should inform the recently announced Government Review of Disability Services in Ireland;

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  • the Disability Act should be fully implemented without delay;

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  • independent HIQA inspections should now commence and the complaints mechanisms under the Health Act should be reviewed.

The 13 recommendations to the HSE include the following:

    

  • service arrangements should be strengthened through:

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  • More precise assessments of the level of multidisciplinary services required;

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  • Ensuring sufficient control and accountability mechanisms;

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  • Implementing HSE reviews within stipulated timeframes with reports to be submitted to the Department and Oireachtas;

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  • the application by the HSE of the recommendations in this report on individualised assessments to inform service needs in the five demonstration sites being explored in 2010 for a recommended community living model;

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  • providing immediate funding for additional full-time speech and language and occupational therapists;

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  • there should be a reduction in residential and respite waiting lists and steps should be taken to guard against any retrogressive measures in relation to the provision of core services.

The 3 recommendations to the Department of Education include the following:

    

  • educational facilities for adults with a severe to profound intellectual disability should be provided for in legislation and such provision should be tailored to an individual’s learning capacity;

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  • the educational facilities currently available in the Centre should be augmented.

The 7 recommendations to the Brothers of Charity include the following:

    

  • the Brothers of Charity should work with the Parent Group in a project team with clear terms of reference in relation to the proposed move of individuals to community group homes;

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  • accessible and transparent communication between Centre management, care staff and the parents of the individuals in the Centre.

ENDS/

IHRC Spokespersons are available for comment.

Please contact Fidelma Joyce, IHRC, 01 8589601/ 087 783 4939

Notes to Editor

1.The current enquiry is the third enquiry conducted by the IHRC; its first enquiry was entitled "The Self-Employed and the Old Age Contributory Pension" and was published in April 2007. The second enquiry was entitled Report on an Enquiry into the Treatment of a Visitor Refused Leave to Land in the State and was published in January 2009. The power of the IHRC to conduct enquiries derives from sections 8(f) and 9 of the Human Rights Commission Act 2000. Under its legislation, the Commission has the power to compel the production of information, documentation or things in the course of its enquiries and it can require persons to attend before the Commission for that purpose.

Parties to the Enquiry

    

  1. The Parent Group

    2. 

  2. Brothers of Charity Services Galway

    3. 

  3. Health Service Executive

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  4. Department of Health and Children

    5. 

  5. Department of Education and Science

    6. 

  6. Health Information and Quality Authority

2. Enquiries conducted by the IHRC may be at the request of an individual concerning a relevant human rights matter. The purpose of IHRC enquiries is to review the adequacy and effectiveness of law and practice in the State relating to the protection of human rights; i.e. to evaluate how the law is operating in practice not only for an individual, but also in general. In applying the human rights standards defined in its legislation to a particular factual situation, enquiries will also make recommendations to Government on the measures the State needs to take to strengthen, protect and uphold human rights in the State and hence ensure compliance with its national and international obligations. Ultimately IHRC enquiries are there to assist the State in remedying faulty practices and can thus help State bodies in avoiding costly litigation.

3. It is also important to note that in the exercise of its enquiry function, the IHRC does not act as an adjudicatory body in respect of the determination of rights or as a source of remedy. The IHRC may, however, conclude that the enquiry has revealed a deficiency in the law/practice in the State relating to the protection of human rights and this conclusion may in turn form the basis of a recommendation on the measures required to address the situation.

4. Taking into account that the IHRC does not act as an adjudicatory body, this enquiry has been directed to keeping under review the applicable law and practice in the State relating to the protection of the human rights of the individuals in the John Paul Centre and people in a similar situation and to making recommendations on the measures required in order to strengthen, protect and uphold human rights in the State.

5. The fact that the enquiry function is not intended to adjudicate upon alleged human rights violations has allowed the Commission to take advantage of the cooperation of all the stakeholders to the enquiry in ascertaining how the situation in the Centre is a consequence of the strategies, legislation and policy frameworks set at the national level and how this has impacted on the individuals in the Centre. During the enquiry, this was done through research, correspondence, examination of documentation, reports and responses, interviews and meetings with the relevant stakeholders.