DEC-S2009-019 - Full Case Report

The Equality Tribunal

3 Clonmel Street

Dublin2.

Phone:   353 -1- 4774100

Fax: 353-1- 4774150

E-mail: info@equalitytribunal.ie

Website: www.@equalitytribunal.ie

Equal Status Acts 2000-2008

Decision Number

DEC-S2009-019

Kilduff

(with Paula Polland of CUMAS as Advocate)

V.

Health Service Executive

(South)

Case ref      ES/2007/0047

Issued   25 March 2009

DECISION NUMBER DEC-S2009-019

Keywords:

Equal Status Acts 2000 to 2004 – Discrimination, section 3(1)(a) – Disability ground, section 3(2)(d)- Discrimination on the ground of disability, section 4(1) – Provision of goods and services, section 5(1)

 1. Delegation under the Equal Status Acts 2000 to 2008

1.1. Mr. Kenneth Kilduff referred a claim to the Director of the Equality Tribunal under the Equal Status Acts on 9 May 2007. In accordance with her powers under section 75 of the Employment Equality Act, 1998 and section 25 of the Equal Status Acts, the Director then delegated the case to me, Tara Coogan, an Equality Officer, for investigation, hearing and decision and for the exercise of other relevant functions of the Director under part III of the Equal Status Acts. An investigation in accordance with section 25(1) of the Acts commenced on 11 August 2008. Two oral hearings, as part of the investigation, were held in Wexford on 16 June and 18 September 2008. Final communication with parties took place on 2 December 2008

2. Dispute

2.1. The dispute concerns a complaint of unlawful discrimination on the disability ground. Mr. Kilduff (“the complainant”) maintains that the Health Service Executive (“the respondent”) treated and continues to treat him less favourably on the ground of his disability in relation to section 3(2)(d) and contrary to section 4(1) and 5(1) in relation to the allocation of his package of care. The complainant maintains that the discrimination is on-going. The respondent was notified on 11 December 2006.

3. Case for the Complainant

3.1. The complainant, a person with a significant physical disability known as Friedreich’s Ataxia, is a programme manager and active campaigner for the rights of people with disabilities. He stated that his aim is to work towards empowering people with disabilities to be able to live independently and partake fully and equally in society. The complainant is a wheelchair user and, it was submitted, as his condition deteriorates his physical limitations impact further on the activities he can carry out. The complainant stated that he requires and wants an allocation of full-time personal assistance hours (168 per week) to enable him to live an independent life in his community. In order for the complainant to do so, he stated that he requires the assistance of personal assistant service that would enable him to visit his friends when he wanted to, to cook, to work, to assist him with his personal care, etc. He stated that he has requested such a service from the respondent’s local office but maintains that his request has been refused.  

3.2. The complainant stated that he currently receives a package of care from the respondent. He stated that he is currently obliged to comply with hours dictated by the respondent. This means that he has to get up at 8.30 in the morning, regardless of his own needs and desires. It was also submitted that while the package of care the complainant is currently receiving may seem good on paper, it does not show that on a number of occasions he has had to wait to have his toilet needs attended or to get a drink. It was further submitted that in order for the complainant to have the package of care he would prefer to the one he is currently receiving he is willing to exchange some of the shared home support for his personal assistant service.

3.3. The complainant further submits that the needs assessment that he underwent with the respondent was not in his view a fair or accurate assessment of a person with a physical disability. He submits that the assessment was for dementia. The complainant also takes exception to the fact that during his latest assessment he was asked about the Easter Rising. It was submitted that the complainant’s knowledge of Irish history has no bearing on his ability to lead an independent life.

3.4. The complainant maintains that the package of care that he is in receipt of is not his but that he is forced to share a package of care with his brother who also is a person with a disability. He stated that he feels that he is discriminated against by the respondent because his brother also has a disability. This, the complainant stated, means that he and his brother, who live in separate but neighbouring houses, are treated as if they live together. The complainant stated that the problem was that the respondent would not recognise the complainant and his brother as separate individuals. The complainant stated that he could not speak on behalf of his brothers needs but that he definitely needs and wants a full-time personal assistant service. It was submitted that a personal assistant service would cost a similar amount of money as a carer does.

3.5. The complainant submitted that he is treated less favourably than another person with a different disability would be treated in a similar situation. A named witness attended the hearing to give direct evidence of the service that he, a person with high dependency needs, receives from the respondent in his own area. The witness stated that he is in receipt of 143 hours of personal assistant care This means that the witness is at all times accompanied with a personal assistant who will assist him with all aspects of his life enabling the witness to work, socialise, etc in an independent manner. The personal assistant service is designed in such a manner that the person with a disability’s daily living dictates the personal assistant service. The witness - who lives with muscular dystrophy, a progressive muscular wasting condition – is also housed in independent housing that has been adjusted to his needs. He stated in direct evidence that he started receiving this service through a pilot programme funded by the European Union in the late 1980s and early 1990s. The witness who is also living in independent accommodation lives in a different region to the complainant.

3.6. The complainant stated that with the current arrangements he has no quality of life. He stated that he feels like a prisoner in his own home. He stated that, due to his disability, he requires assistance to have a fulfilling life and insists that he is entitled to a 168 hour per week personal assistant service like that of his witness. The complainant submitted that having a full-time personal assistant service would mean that the complainant would have independence and control over his own life. The complainant further stated that by changing his 168 hours per week of shared home support and 10.5 hours per week assistance with personal care to a full-time personal assistant service he would be able to live his life as he wants to live, instead of the life that has been forced on him by his disability and the service deemed suitable by the respondent. The complainant further submitted that these changes could be cost effective if the respondent swapped some of the other hours available to him for personal assistant hours. 

4. Case for the Respondent

4.1. The respondent submitted that it is committed to providing equitable services of the highest quality to the population and maintains that the service provision to the complainant has been based on his assessed need and in the context of resources available to the Local Health Office to meet his and the needs of the wider community with disabilities. The respondent further maintains that the complainant is in receipt of support that is considerably in excess of the level of support afforded to other similar service users.

4.2. The respondent submited that it has provided an extensive package of care to the complainant to enable him to live at home since 2001.This package was shared between the complainant and his brother. Since the complainant and his brother were allocated individual houses in 2005, the package of care was renegotiated to fit the new living arrangements. The respondent submitted that the negotiations were very protracted due to the complainant’s insistence that he receive an individualised 24 hour package of care for himself. The respondent submits that the allocation of resources to the Local Health Office do not allow the respondent to provide such a care package.

4.3. The respondent submitted that it provides a number of home support services to support people to remain living in their own home and within their own community. A number of voluntary service providers are commissioned to provide these services. It was also submitted that the respondent must provide services within its financial regulations and legislative considerations.

4.4. The respondent submitted that the majority of service users in the area receive between 2 and 20 hours of personal assistant/home support hours. Overall the service had 11.000 hours available for the period January – March 2008, proving for approximately 846 hours per week. The service caters for 67 people in the area. The respondent submitted a breakdown of service users which indicated that the highest allocation of hours in the area were to the complainant and his brother. It was submitted that the complainant and his brother receive 89.25 hours each per week. It was also submitted that the complainant receives an additional 20 hours from the Centre of Independent Living in the area.

4.5. The respondent stated that, in this particular area, a ceiling of 40 personal assistant hours was introduced in 2002 to ensure equity of access for those assessed as requiring the service. This ceiling, it was submitted, is currently at 40 hours per week which is equated to the cost of a full time place in a private nursing home (an alternative option to service users who have high dependency needs). It was stated that private nursing facilities cost on average between €680 and €700 per week.

4.6. In relation to the package of care provided to the complainant, the respondent submitted that it was allocated consistently in line with the service’s two main parameters. The first parameter is that the service allocated is need based. This need is determined by a needs assessment and collaborative working with stakeholders. The second parameter is the availability of resources to meet this assessed need. The respondent submitted that the care package offered to the complainant was provided around these parameters.

4.7. It was submitted that a needs assessment had been carried out with the complainant on 16 September 2003, 8 December 2004 and 28 July 2006. The respondent submitted that the complainant scored in the high dependency range in all assessments. 

4.8. The respondent submitted that the complainant is currently in receipt as follows:

·        168 hours home support shared with his brother who lives next door to the complainant;

·        1.5 extra home support hours per day, 7 days a week;

·        20 personal assistant hours administered through the Centre for Independent Living;

·        10 hours of home help per week shared with his brother.

4.9. The respondent submitted that it undertook extensive negotiations and collaborations with the complainant and other stakeholders in 2005/2006. It was stated that all options and possibilities, within available resources, were explored and discussed. 

4.10. The respondent submitted that it does not deny that the complainant would benefit from extra personal assistance hours. It was submitted that the complainant has been offered an independent living unit with a named foundation in Waterford that provides personal support workers who are on duty 24 hours a day. There were no similar alternatives in Wexford. It was also submitted that the complainant was offered the option of attending a day service but that the complainant had declined this offer of a service.

4.11. It was submitted that in May 2005 a plan was put in place in conjunction with Wexford County Council for adaptation to houses to allow the complainant to share a support package with his brother. Subsequently, the respondent’s representatives and the complainant and his family met to explore a number of innovative ways to address the complainant’s needs. It is submitted that the current package of care was agreed at this time.

4.12. The respondent denies that the complainant is being discriminated against on the grounds of his disability. It is submitted that the complainant is already in receipt of hours that are considerably in excess of the maximum number of hours being provided to other persons in the area with high dependency needs. It was submitted that a comparable example is a family with three adults who also have a diagnosis of Friedreich’s Ataxia and high dependency needs. It was submitted that this family is currently in receipt of 78 support hours between all three of them.

4.13. It was submitted that the respondent and a named voluntary service provider who provides services on behalf of the respondent have experienced many challenges in delivering services to the complainant. The respondent submitted that the greatest challenge has been the inflexibility of the complainant to work around a shared package of care.  

4.14. The respondent acknowledged that the complainant does not wish to share services with his brother. It was submitted that the current care package provided to the complainant is adequate to allow the complainant to live independently. It was further submitted that the complainant has availed of the respondent’s formal appeals procedure where his appeal was disallowed.  

5. Conclusion of the Equality Officer

5.1. Section 38A (1) of the Equal Status Acts 2000 to 2004 sets out the burden of proof which applies to claims of discrimination. It requires the complainants to establish, in the first instance, facts upon which they can rely in asserting that they suffered discriminatory treatment. It is only where such a prima facie case has been established that the onus shifts to the respondent to rebut the inference of discrimination raised.

5.2. In making this decision I have taken cognisance of both oral and written submissions made by the parties. While the complainant alleges that the less favourable treatment began sometime in 1995/1996, it is clear that the Equality Tribunal has no jurisdiction to investigate matters that took place before the legislation was enacted. As the Equal Status Act 2000 only became law on 25 October 2000, any incident that took place prior to this date is outside the Tribunal’s jurisdiction.

5.3. The complainant must establish that the reason why the alleged treatment was less favourable to him is because of his disability and that a person with a different disability/no disability would not have been treated in such a manner in similar circumstances. It is important to appreciate that this Tribunal has limited jurisdiction to examine complaints of unlawful discrimination. Any less favourable treatment that is the result of any other subject other than the nine protected grounds specified in the legislation is ultra vires, that is, any investigation into such a matter goes beyond the powers ascribed to an equality officer in the Acts and would exceed the functions of the Equality Tribunal.      

5.4. It is clear that the complainant has not been denied a service by the respondent. The complainant is in receipt of a package of care. It is also clear that the complainant deems it to be unsuitable for his needs and feels that he is entitled to a package of care that is delivered in a different manner. It is important to appreciate that it is not for tribunals such as this one to intervene with policy matters of any service provider provided that the service provision is not in contravention of the obligations set out in the Equal Status Acts.  

5.5. I also find that the respondent has engaged with the complainant in a manner consistent with the Acts in its ambition to provide an appropriate service to the complainant. I have found no evidence of any treatment provided by the respondent that is in contravention of section 4(1) of the Acts. I have examined the documentary evidence submitted by the respondent and have found that the respondent did extensively engage with the complainant in relation to his housing and care needs.   

5.6. I note that the complainant has submitted that the questions he was expected to answer during his assessment process were inappropriate for a person with his condition. The respondent has submitted that the test applied was a standard test used on all persons in similar circumstances. I find that this is in accordance with section 16(2) of the Acts and therefore non-discriminatory. I have also find no evidence to support that the manner in which this test was carried out had any negative impact on the type of package of care that the complainant is currently in receipt of.

5.7. I note that the complainant has submitted the Equality Tribunal with letters from a number of named professionals who have expertise in his condition. These letters unanimously support the complainant’s application for full-time personal assistant hours. I also note that he has submitted a number of reports concerning situations where the complainant argues that his needs have been unmet on a number of occasions due to the fact that he has had to wait for a staff response. I note that the complainant submitted that these situations would not have occurred if he had an individual assistant as he has requested. It is clear to me that the type of service the complainant wants and states that he needs would undoubtedly increase the quality of his life and autonomy. However, the fact that the complainant wishes to be viewed independently from his brother and to receive a package of care that is entirely personal assistant lead is not a matter for this Tribunal to address. I note that the complainant submitted on a number of occasions that the reason for his complaint was that he felt that the reason why he was not getting his own individual package of care was because he lives next door to his brother, who also has a diagnosis of Friedreich’s Ataxia. I find that this treatment - having to share a care package with his brother - while creating a situation where the complainant is receiving less independent hours than his witness, does not constitute less favourable treatment in accordance with section 3(2)(d) of the Acts. The reason for this treatment is the fact that the complainant lives next door to his brother, not the fact that he has a different disability from the witness/comparator. This is not a matter covered by the Acts. Further, I find that the respondent is consistent in the way in which it attempts to ensure equitable access for all of its service users in the area and have found no evidence to support the complainant’s argument that he has been receiving less favourable treatment than other service users with similar needs have received in his region.

6. Decision

6.1. In accordance with section 25(4) I have concluded my investigation and issue the following decision:

The complainant has failed to establish a prima facie case of less favourable treatment contrary to sections 3(1), 4(1) and 5(1) on the ground of his disability. Therefore I find in favour of the respondent. 

_______________

Tara Coogan

Equality Officer

25 March 2009