EQUAL STATUS ACTS
Decision No. DEC-S2012-043
PARTIES
A Complainant (on behalf of her daughter, J)
-v-
A Health Service Provider
File Reference: ES/2009/025
Date of Issue: 14th December, 2012
Key words
Equal Status Acts - Section 3(2)(g), Disability Ground - Section 4(1), Reasonable Accommodation - Section 16(2)(a), Clinical Judgment
1. Delegation under the relevant legislation
1.1. On 4th September, 2008, the complainant referred a claim to the Director of the Equality Tribunal under the Equal Status Acts on behalf of her daughter, J. On the 20th June, 2010, in accordance with his powers under section 75 of the Employment Equality Act, 1998 and under the Equal Status Acts, the Director delegated the case to me, Gary O'Doherty, 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, on which date my investigation commenced.
1.2. Written submissions were received from both parties. A hearing was scheduled for 3rd March, 2011 but was adjourned due to exceptional circumstances arising. Further hearings were set but were also adjourned for similar reasons. A hearing of the complaint was held on 22nd May, 2012, and a further hearing was held on 21st June, 2012.
2. Dispute
2.1. The dispute concerns a complaint by the complainant that she was discriminated against by the respondent on the disability ground contrary to the Equal Status Acts in terms of Sections 3(1)(a) and Section 3(2)(g) of the Equal Status Acts and contrary to Sections 4(1) and 5(1) of the Equal Status Acts in that the respondent failed to provide her with reasonable accommodation and discriminated against her on the disability ground by not providing appropriate treatment for J.
3. Summary of the Complainant's Case
Evidence/Submissions of Complainant
3.1. The complainant made the complaint on behalf of her daughter, J, in accordance with Section 20 of the Acts. She submitted that J had an intellectual disability, which she understood to be Autism/Asperger's Syndrome. She submitted that, over time, she noticed that J had difficulties dealing with noise, interacting with other children and maintaining eye contact. She said that she and her husband, Mr. A, sought help for her from an early age from various health service providers. She said that things "got really bad" and gave a detailed account explaining what she meant by this. She described the early interaction of J with the respondent in 2000/2001. She said that Ms B, a nurse working for the respondent, made visits to J but denied that she ended those visits in April 2001 because she would not engage with the respondent.
3.2. The complainant said that J was finally admitted to the respondent's in-patient services in May, 2001. She stated that, prior to J's admittance, the respondent was informed that there was a question of Asperger's with respect to J and referred to notes written by a staff member of the respondent which recorded this. In that respect, she also referred to a case conference on 5th June, 2001 that was attended by, inter alia, herself and Mr. A, as well as Ms. B and Dr. Z, who worked for the respondent. She said that, at that conference, she gave to Dr Z a letter and report from a Dr. Y, another doctor who J had visited earlier that year. She said that this letter, which Dr. Z proceeded to read, stated that J had Asperger's Syndrome.
3.3. The complainant said that J remained under the care of the respondent's in-patient services for seven years. She said that, on 21st May, 2008, she and her sister, along with J and Mr. A, met with Dr. X and Ms. C from the respondent. She said that she was told at that meeting that it had been decided that she had to take J home, though she would have respite care and see a doctor on a regular basis. She stated that she was not ready for that and felt J's discharge would do more harm than good. She denied that J's departure from full-time in-patient treatment was gradual in that context. She stated that she was "conned" into getting an assessment done a few weeks earlier and, in hindsight, said that the purpose of the assessment was to justify J's departure. She also questioned why a psychological assessment had not been done earlier. She accepted that J had been at home for 114 out of the previous 142 days, but said that did not explain why she had not been let home for the previous 6½ years.
3.4. The complainant submitted that J was sent home without ensuring that she had a bed and knowing that they also had another child (a son) who had Asperger's and ADHD. She accepted that a discharge plan was put in place and that Ms. C was appointed to look after J but said that she hardly kept in contact afterwards. She agreed that Dr. W meets J every month and accepted that other assistance has been and is being provided to her. In particular, she accepted that an offer was made to set up J in a house in a named location but she felt that this would have done more harm than good so she rejected the offer.
3.5. The complainant said that J was improving and recognised that a high level of care had been afforded to her. However, she gave a detailed account of services and treatment which, she said, should have been provided to J in light of the report of Dr. Y. She alleged that these services and treatment were not provided to her and she did not know if she came out with the treatment she should have received in that context. In particular, she stated that certain assessments should have been carried out by the respondent but were not. She also raised a number of other issues she had with particular aspects of the facilities and treatment that were provided to J. She added that her son also had an intellectual disability and described the treatment he received from another treatment centre. She said that J did not receive the same kinds of treatment and assessments that her son did.
3.6. The complainant said that J had a right to live within her potential and issues relating to her social skills still needed to be addressed. She pointed to the comparison with J's brother and said that he was getting services appropriate to his needs. She said that J's skills were not what one might expect them to be, giving particular examples of the skills in question. She said that she felt that they were certainly less than would have been the case if the services in question had been provided to her. She stated that there was an ongoing failure to provide J with special treatment without which it was unduly difficult to avail of the respondent's services. She said that she felt that J did not obtain the treatment she required in that context. She accepted that Dr. W had recently suggested certain assessments but she did not to agree to them while the Tribunal case was ongoing.
Evidence of Dr. V
3.7. Dr. V, a clinical psychologist, attended the hearing as a witness for the complainant. She stated that she met with J in 2008 and outlined the tests she carried out on her, the interviews she undertook with her and her family and the reports she read in that respect. She said that she did not have access to reports or working notes regarding J's treatment by the respondent. Nevertheless, she stated that she felt the information she had with respect to J was sufficient to form a view despite her limited observation of her. She outlined the basis of her conclusion that J fulfilled the criteria for Autistic Spectrum Disorder (ASD). She stated that J cannot live independently despite having normal intelligence and needed to be provided with appropriate supports in that context, in particular that she required a supported living arrangement and assistance with living skills.
3.8. Dr. V said there had been no definitive diagnosis of J at the time of her admittance to the respondent's services. She stated that diagnosis is important in that the 'label of ASD' pointed one in a particular direction and one is able to see the patient's particular needs more quickly. She did not accept that autism was a grey area but stated that diagnosis is subjective to some degree and said that it was a complex area during the years in question (i.e. 2001-2008). She said that different medical experts can have different opinions but stated that if they followed the appropriate protocols, it was not a difficult task. She said she did not know what supports were provided to J but, even if the services outlined at the hearing by the respondent were provided, they still did not meet all her needs. She then outlined the programmes, treatment and therapies she considered would have been of benefit to her.
Evidence of Mr. A
3.9. Mr. A described his experience of J's behaviour and gave an account of the history of the family's efforts to obtain treatment for her from a variety of services providers, including the respondent. He said that the letter from Dr. Y, which said that J had Asperger's/Autism, was given to Dr. Z at the case conference following J's admittance to the respondent's services. He said that J probably met with five different psychologists since she was four and none of them mentioned Asperger's prior to Dr. Y. He also outlined the treatment which J's brother has received having been diagnosed with autism and stated that he got a lot of help and is great now, though he was never as bad as J.
3.10. Mr. A said that he thought J benefitted from her time with the respondent. He acknowledged that she was provided with certain supports by the respondent and that she had full access to a range of medical services. He said that the "buddy system" (where the respondent arranges a buddy to engage in social activity with J) was helpful. However, he said that she could have received, and could still receive, more help from the respondent and he could not recall whether some of the services referred to by the respondent were provided to J. He said that she came home for weekends for a while before she was discharged but he had concerns about her fitting back into the family and said that she still needed help coping with things on a day-to-day basis.
Evidence of J
3.11. J said that she got on very well on her courses. She said that she got on with most of the nurses "ok" but she did not get on very well with Dr. Z. She said she thought she was very strict and gave an example of where she thought she was so strict. J said that, on the day of her discharge, Mr. A rang her to say that the respondent was sending her home. She said she had her bags packed. She said that the complainant was anxious about her and was afraid of her going home without any back-up. She said that she found the "buddy system" very good and that she thought she could ask Dr. W for treatment if she needed to.
Final Comments
3.12. In short, the complainant said that the respondent failed to accommodate J in terms of her abilities to access services. In particular, she said that there were never any programmes put in place to deal with her autism. She did not agree that applying the label of autism was not important as she would be labelled either way and what was important was that she received the correct treatment for her disability. She submitted that, because of the lack of intervention, and the fact that the respondent did not acknowledge that J has Asperger's, J's life has been destroyed. She submitted that she is now back to where she was seven years ago. She submitted that she has the ability to live a normal life if only she was given the help and support she needed.
Jurisdictional Issues
Time Limits
3.13. The complainant outlined a number of personal circumstances which militated against sending the complaint in to the Tribunal any earlier than she did. In any event, she applied for an extension of time should same be necessary. She accepted that the notification was served at the same time as the complaint (i.e. the notification was issued on 3rd September, 2011 and the complaint was made on 4th September, 2011). However, she stated that the respondent had a full opportunity to address the issues and no question of prejudice arose in that respect. She also stated that it would be contrary to the spirit of the legislation not to allow the case to proceed. In any event, she stated that it was her case that the respondent's failure to provide J with appropriate care continued up to the present day and was an ongoing failure to provide services.
s.16
3.14. The complainant said that the only clinical opinion given in evidence by the respondent was that of Dr. W and he was not in charge at the time. She said that there was no evidence as to the reasons and/or indicators for the treatment of J before Dr. W started working for the respondent. She added that he (Dr. W) could not give evidence with respect to the basis of Dr. Z's treatment of J. She said that it cannot be the case that clinical judgment covers every single thing that occurred in the respondent's service.
4. Summary of the Respondent's Case
Jurisdictional Issues
Time Limits
4.1. The respondent stated that s.21 was a mandatory provision and is clear in requiring the claim to be made within six months. It said that the Tribunal could not go back to 2001 on that basis and most of the complaint must be out of time. In particular, it stated that it was not a series of acts and that the discharge was the only thing which fell within the time limits (in terms of the six month limit). It said that the only thing that was within time in that context was J's discharge and it submitted that there was no discriminatory treatment of her. It said that the complainant could have taken legal advice if she had wanted. It added that the complainant lodged a complaint with the respondent through its own customer service policies and surely she could have brought an equality complaint at the same time.
s.16(2)
4.2. The respondent stated that the matter was entirely misconceived as it all related to the exercise of clinical judgement which is exempted from the application of the Acts in the context of s.16. It said that it was very, very clear that this was a fundamental obstacle to the complainant succeeding in her claim that J was not treated in the appropriate manner by a series of professionals and by reference to a treatment plan.
Substantive Matters
Evidence of Dr W
4.3. Dr. W gave a detailed account of his interaction with J and of the reports and observations he had read in that respect. He agreed that Autistic Spectrum Disorder (ASD) was referred to in some of the documentation available to the respondent and could not say why these references were not followed up on in assessing J, but did offer detailed explanations as to why that might be the case. He said that ASD was not a black and white issue as far as J was concerned. He gave a detailed account of her condition and said that his diagnosis would be that she had a borderline intellectual disability. He said that the services provided to her by the respondent were probably the best fit for her and that he considered that she had availed of everything that was available at the time. He said that if she came in now they probably would have provided a couple of other disciplines. He outlined J's current treatment and said that she seemed to have made progress since her discharge.
Evidence of Ms. B
4.4. Ms. B stated that she first became involved with J in mid-2000. She said that the complainant and her husband had tried hard to locate the correct services for her. She said she made a number of home visits to her and had tried to arrange appointments for her with Dr N. She described J's behaviour about which she herself had become concerned. She said, however, that her visits ceased in November 2000 as the complainant and Mr A had not engaged with the respondent's services. Therefore, they had been unable to progress her case. She added that the complainant had indicated she wished to pursue other avenues. Nonetheless, she advised the complainant that she could contact her (Ms. B) at any time.
4.5. Ms. B stated that she got a call from the complainant on 16th May, 2001 and she went out to the house that day. She gave an account of what occurred when she did so. She said that the complainant and Mr A asked her to do "anything" and to get her a bed somewhere. She said that J was assessed and taken into the respondent's services. She said that she had no involvement with J after that except for a brief period of clinical supervision. She said she was not at the case conference on 5th June, 2001 and did not see the minutes of that meeting. She said that she passed on J's files and gave her family history to the respondent. She stated that there was no reference to Asperger's or autism in any of the documents she saw, that she was not aware of any letter from Dr Y and there was no such letter on file.
Evidence of Ms D
4.6. Ms D, a Montessori teacher who works for the respondent, described the nature and extent of her interaction with J. She stated that, if she were to go back to 2002 when she first started working with her, she would not change what she did for J, who left the service when most people are not able to do so. She said it would be disingenuous to suggest her treatment might have been any different if she had been identified as having Asperger's as Montessori teaching is tailor-made with an individual programme for each person. She gave a detailed account of her work with J in that context. She said that it was evident that J had not just developed in terms of knowledge and skills, but also in terms of socialising with young people. She described the nature of this development and the progress she considered that J had made, in particular the fact that she had done the Leaving Certificate.
4.7. Ms D said that J was very happy with the services she received in general but made it clear at the end that she was ready to move on. She said that J reached her maximum potential while with the respondent and it provided her with all the facilities and services that she needed. She said that she had one major incident in six years and gave an account of this. She listed the other professionals who were involved in J's treatment. She said that they met quarterly to discuss J's treatment programme and Dr. N met regularly with them in that context. She said that she met with the psychologist about J on a couple of occasions in six years. She said that she was not aware of any assessments and/or proposed assessments of J.
4.8. In short, Ms D said that she considered that J was more favourably treated than other residents. She recalled one particular occasion when J returned from home distraught. She said that she was angry that she felt that she (Ms. D) was stopping her going home. She described her last interaction with J at a Christmas party in 2010. She said J was slightly uncomfortable at this party, but most of the staff she had known were no longer there and she was glad to be going home.
Evidence of Ms. C
4.9. Ms. C said that she first came across J in dealing with her discharge plan at the meeting on 21st May, 2008. She said that she attended with a view to linking in to the provision of community support for J within that discharge plan. She stated that she disagreed with the complainant's account of that meeting. She said that Dr. X talked about how well J had done, said that she was already spending more time at home and said that her discharge would be a good thing for her, adding that J herself wanted to go home.
4.10. Ms. C stated that she did not agree that J's bags were packed that day. In fact, she stated that it came as quite a shock when the complainant said that she was going to take J home straight away. She said that the respondent made efforts to appease the complainant but she was quite strong in saying she was bringing J home. She said that J was upset and could easily have been persuaded to stay but she did not recall her saying that she wanted to leave. She said that there was a level of upset from everyone involved and it was not a good way to end a great seven years. She then gave an account as to why, in her correspondence, she did not include any of the concerns that were expressed by the complainant about the discharge.
4.11. Ms. C gave a detailed description of the support which she stated was provided to J after she was discharged. She also gave an account of her communication with J and the complainant in that respect and said that J's 'buy-in' was very positive. She said that she was involved with J's care until around Spring 2009 when someone else took over the case. She said that J made huge progress and was very co-operative. She said that the discharge plan for J was a typical one.
General comments
4.12. The respondent stated that the complainant relied upon a report from Dr. Y in which he did not come to a definitive diagnosis and which the respondent did not see until after the complaint to the Tribunal was made in any event. It said that, even if it had seen it at the time, this would not have made any difference to J's treatment, as Dr. X came to a conclusion that she did not have autism. It said that she came to that conclusion after interacting with her for several years whereas Dr. V only examined J once. It also pointed to the evidence of Dr. W in that respect and added that J was seen by a whole host of child psychiatrists, none of whom made reference to autism and/or Asperger's. It also stated that labelling her with autism would not have made a difference in how she was treated. It stated that J's brother obtained services from someone else and he was not a legitimate comparator in that context.
4.13. The respondent denied that J had been not let home for 6½ years before being discharged. It said that its intention was not to release J immediately on 21st May, but the complainant requested that she take her home that day. It said that it was abundantly clear that every effort was made to ensure J transitioned back into the community and excellent aftercare was provided. It provided a detailed submission to the Tribunal as to the care that was provided to her, and also pointed to Ms. C's detailed evidence in that respect. It submitted that all of the support outlined in the discharge plan has been put in place.
4.14. In short, the respondent said that this case was an attempt to make out a medical negligence case under the Equal Status Acts. It said that there was no evidence of discrimination and it was abundantly clear that it had done all that can reasonably be expected of it in providing reasonable accommodation to J. It stated that it was satisfied in hindsight that her treatment was appropriate and would not change a thing about it and made a number of submissions to the Tribunal in that respect.
5. Conclusions of the Equality Officer
Time Limits
5.1. It is clear that the complainant's complaint relates to an ongoing failure by the respondent to provide J with appropriate care, beginning in 2001 and continuing to the present day. In that context, it is alleged to be an ongoing act of discrimination and is within time in that context.
Substantive Matters
5.2. Section 38(A) of the Equal Status Acts sets out the burden of proof which applies in a claim of discrimination. It requires the complainant to establish, in the first instance, facts upon which he/she can rely in asserting that prohibited conduct has occurred in relation to him/her. In deciding on this complaint, therefore, I must first consider whether the existence of a prima facie case has been established by the complainant. 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. In making my decision in this case, I have taken cognisance of all the oral and written submissions made by the parties.
5.3. The complainant has made a complaint on the disability ground, and I must consider whether the respondent has discriminated against her on that ground. As the complaint is on the disability ground, I must also look, in accordance with Section 4(1) of the Acts, at whether the respondent did "all that is reasonable to accommodate the needs of a person with a disability by providing special treatment or facilities", and whether "if without such special treatment or facilities it would be impossible or unduly difficult for the person to avail himself or herself of the service." If relevant to considering what is reasonable in this context, and in light of Section 4(2), I must take into account whether the provision of the special treatment and facilities referred to in Section 4(1) would "give rise to a cost, other than a nominal cost" to the respondent.
5.4. In making my decision in this case, I have taken cognisance of all the oral and written submissions made by the parties. The substantive question in the present case is whether there has been adverse treatment of J by the respondent arising out of her disability. In that respect, I note that Section 16(2) of the Acts states that "treating a person differently does not constitute discrimination where (a) the person is so treated solely in the exercise of a clinical judgment in connection with the diagnosis of illness or his or her medical treatment......".
5.5. It is acknowledged that a purposive approach must be taken to the interpretation of any exemptions under the Acts. Therefore, the exemption provided in Section 16(2) must be interpreted in its strictest possible sense. Even in that context, however, it is clear that, in the present case, any aspect of the treatment that J received from the respondent cannot be held to be discrimination if the diagnosis of her condition and/or the decision as to what her medical treatment should be was made solely in the exercise of a clinical judgment and the treatment she did receive was connected to that clinical judgment.
5.6. Therefore, with respect to the present case, Section 16(2) sets an additional barrier to the complainant in establishing a prima facie case as discrimination cannot occur unless she can show that one of the following took place:
i) The decision as to J's diagnosis and/or what her treatment should be was at least partially motivated by something other than a clinical judgment and/or
ii) some aspect(s) of the treatment that J received was not related to that clinical judgment.
If she can satisfy the Tribunal that one or other of these was the case, she must then show that there was adverse treatment of J by the respondent that was related to her disability. For the avoidance of doubt, it should be noted that Section 16(2) must also relate to the application of Section 4(1) to the present case. Thus, reasonable accommodation also does not arise unless the barrier to the complainant posed by the application of Section 16(2) is crossed.
5.7. I am satisfied that Dr. X was aware of the contents of the report of Dr. Y. I am further satisfied that she was aware that the report contained a reference to Asperger's Syndrome and that she knew that the complainant understood that J had Asperger's. It is also accepted that J's treatment was not entirely consistent with the treatment of someone with Asperger's Syndrome. However, what matters is whether Dr. X's assessment of J and what her treatment should be and/or any of the other decisions that were made with respect to J's treatment by the respondent were based entirely on medical and/or clinical considerations and were informed by the professional expertise of the people concerned. If they were, then Section 16(2) provides that there cannot be discrimination.
5.8. In that context, it is irrelevant to the claim before this Tribunal whether Dr. X (and her successors, including Dr. W) took account of Dr. Y's letter or not, so long as the treatment that J received was based entirely on their own clinical judgment(s) with respect to her condition. I am satisfied that it was, particularly as the Tribunal has not been provided with any evidence to the contrary. It should also be said that Dr. Y clearly did not come to any definitive diagnosis in that respect. Furthermore, even if he had, Dr. X was not obliged to follow it, at least as far as the Acts are concerned. In short, there is no evidence that any of the professionals concerned were swayed by anything other than clinical considerations in authorising the treatment that J received.
5.9. It is also clear that J's treatment, both during her time under the respondent's in-patient care and more recently in terms of her aftercare, was overseen by Dr. X and her successors, including Dr. W. There is no evidence that anyone who was involved with the treatment of J acted outside the bounds of what had been authorised by those medical professionals in that context. Therefore, I am satisfied that every aspect of that treatment arose from their clinical judgment as to what that treatment should be. There can be no doubt that all the treatment and services she has received, and continues to receive, from the respondent has been and is connected with that clinical judgment.
5.10. It should be added that it is not for me to make a determination as to the precise nature of J's disability (i.e. whether or not she has Asperger's Syndrome). Indeed, once the treatment in question was carried out solely in the exercise of a clinical judgment, it does not matter what that clinical judgment was as far as the investigation of the Tribunal is concerned. Furthermore, whether the treatment J received was the correct treatment is also not for me to decide. Indeed, it may well be the case that Section 16(2) was inserted into the Acts precisely because the Tribunal is not qualified to second guess the judgment of a medical professional with respect to the correct treatment of an individual in any particular case. In any event, and in all the circumstances of the present complaint, it would be ultra vires for me to consider the matter.
5.11. Therefore, I find that each and every aspect of J's treatment by the respondent, from the time she first availed of the respondent's services up to the present day, has been connected with and is based entirely upon the professional medical opinions of Dr. X and her successors, including Dr. W. In those circumstances, I am satisfied that every aspect of her treatment by the respondent has been carried out solely in the exercise of a clinical judgment and in accordance with Section 16(2)(a) of the Acts. Therefore, in all the circumstances of the present case as they are known to me through my investigation into the matter, the treatment of J by the respondent cannot be considered to be discrimination as defined by the Acts.
Final Comments
5.12. Before concluding, I would like to add that the complainant has clearly taken a highly proactive role in seeking to obtain the best possible treatment for her daughter. It is clear that she believes that she has not been provided with that to date and she indicated at the hearing that she would continue "that fight" irrespective of the outcome of this complaint. Her desire to obtain the best for her child was evident. She is clearly an honest, caring, devoted and determinedly supportive mother. Equally, it was clear to me that, as far as the respondent was concerned, every person who was involved with J's care, including Dr. X and particularly those who gave evidence to the Tribunal, were also motivated wholly and unambiguously by what they considered to be J's best interests. Each and every one of them struck me as being professional, committed and caring.
5.13. In that context, it is particularly regrettable that the matter has come before the legal system of the State for a resolution. I hope that both parties can ultimately reconcile the complainant's determination to advance her daughter's welfare with the respondent's professional judgment on the matter. Unfortunately, it is not within the power of the Tribunal to assist them any further in that respect.
6. Decision
6.1. Having investigated the above complaint, and having concluded my investigation, I hereby make the following decision in accordance with Section 25(4) of the Equal Status Acts:
6.2. I find that the complainant has failed to establish a prima facie case of discrimination on the disability ground in terms of Sections 3(1)(a), 3(2)(g), Section 4(1) and Section 6(1) of the Equal Status Acts.
6.3. Accordingly, the complainant's case fails.
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Gary O'Doherty
Equality Officer
14th December, 2012