Complainant

Respondent

Anonymised Parties

A Complainant

A Minister

Representatives

  Self

Emma Cassidy BL instructed by the Chief State Solicitor's Office

Act

Complaint/Dispute Reference No.

Date of Receipt

Complaint seeking adjudication by the Workplace Relations Commission under Section 21 Equal Status Act, 2000

CA-00046769-001

21/10/2021

The Complainant contends that he was discriminated against by the Respondent on the grounds of disability and age.

In the hearing on 8th November 2022 the Respondent immediately raised an issue as to whether the Complainant had sought to bring a case against the Minister or the health service provider that is also named on the Complainant’s ES1 and Complaint form.

This was clarified with by the Complainant who confirmed that he wished to bring his case against the Minister. I am satisfied that the Minister is on notice of the issues at hand and invited the Minister’s representatives to make a request for an adjournment if they needed further time to prepare a response.

The Respondent’s representative did not think that an adjournment was necessary but also did not think that the Complainant could be effectively cross examine under the circumstances and that the Respondent would have to limit their defense to their submissions.

I was clear that it was up to the Respondent as to what defense they wish to run. I suggested we hear the Complainant and then the Respondent could decide whether they would need a adjournment in order to cross examine.

 At no stage did the Respondent request an adjournment.

The Complainant gave evidence under affirmation at the hearing.

The Respondent made written and oral submissions at the hearing.

The Complainant first identified the preliminary points raised by the Respondent submissions. Namely that the Respondent is not the proper entity to respond to his case and that the health service provider is. He noted the Respondent’s other point that the case had been decided before.

The Complainant argued that these issues are technicalities and accepted that there might be technical issues with the case but that it was important that the process be allowed continue. Particularly as this case may affect other people.

The Complainant had gone to IHREC who refused to represent him because of concerns regarding the issues in challenging a medical decision through the Equal Status Acts.

The Complainant reiterated his view that though there may be technical issues with his case it was still important that I hear the case. I agreed with him and invited him to state his case.

The Complainant outlined to the hearing that in recent years he discovered that he might have not one, but several, different neurodevelopmental disorders. He did a lot of research on the issues associated with these disorders and the options open to adults with these disorders in Ireland.

He read the 2005 disability act and discovered that large sections of it had still not commenced.

Following his research he wrote to a his doctor laying out the basis for his need for assessments. As a result of the Complainant’s research he was very aware of the position now taken in modern medicine that it is not possible or desirable to diagnose one condition at a time. The reason being is that conditions can mask each other and treatments for diagnosed conditions can conflict with any undiagnosed conditions. A full spectrum of potential assessments in needed to overcome this issue which is referred to as “diagnostic shadow.”

Initially the Complainant was told by a doctor that he had asperges but asserts that this is no longer a medically used term.

The Complainant has also experienced terms like “high functioning” being used to describe his situation. He is of the view that this is also outdated and that while intelligence is useful it does not take away from a disability/disorder. The disability/disorder still needs to be managed and treated where possible.

When the Complainant first got this diagnosis he read a book given to him by his doctor and did what research he could. He came to realise the impact of his condition on his relationships and talked to his family who agreed he needed to be more thoroughly assessed for the other conditions he suspected he had. In particular the Complainant was of the view that obtaining diagnosis and support for autism was particularly important.

This was a time sensitive issue. Family history is extremely important to proper diagnosis as the process is not just about the person at the time of assessment but involves gathering a full and detailed history which often relies on family. At the time of his initial diagnosis his parents were both in their 80s and his mother has significant health issues.

The Complainant’s father passed away during the covid-19 pandemic. The Complainant was not able to visit his father in hospital or go to his funeral.

A new clinic specialising in neurodevelopmental disorders had opened in a neighbouring county and the Complainant and his doctor had worked to ensure he could be seen. He attended his first assessment on the day after his father’s funeral in April 2021.

The initial reaction of staff there was deeply disappointing to the Complainant. They indicated that the clinic was primarily for children and that adults could not have the need for such services as they essentially grow out of developmental disorders.

On review the Complainant was concerned to learn that this view is widespread and ingrained into public policy. The position taken by the health service provider is directly contradictory to the American Medical Associations’  Diagnostic and Statistical Manual of Mental Disorders (DMS-5).

Autism in adults is a significant issue regardless of how high functioning they are or are not. Autism in particular affects many different aspects of a person’s life so diagnosing and treating it is extremely important.

The Complainant explained that the view in Ireland remains that there is no need of adult diagnosis or treatment except in severe cases. That adults affected by autism who don’t have an intellectual disability are not seen as in need of help. This fails to recognise that autism can take up to 13 years off a person’s life span and increases the chance of suicide times nine.

When the Complainant engaged with the health service provider he found a lack of people who were qualified or experienced enough to deal with adult autism and other developmental disorders. That situation had been created by a perception that such treatment and diagnosis was only really required for children.

Autism frequently interplays and exacerbates other conditions. The Complainant has anxiety, ocd and depression as well. He has had to fight for an assessment.

At the previously mentioned assessment in April 2021, the Complainant was given a form to fill out to deal with potential diagnosis for ADHD. He only realised this when he got home. He went back to the clinic looking for another form for assessment for autism.

The Complainant was conscious of time for the reasons detailed before. At this point he only had his mother who could provide information from his childhood. He went to the clinic to request the relevant form but was told he had to wait 8 weeks until he could be seen again. At this time he was told that the health service provider does not do autism assessments for adults, and that no one was available who could perform one.

He is of the view that the health service provider needs to have experienced people available to perform this task.

Ultimately the Complainant went privately to Northern Ireland to get diagnosed.

Following his diagnosis for autism the Complainant was then referred to a Consultant in his neighbouring county. This doctor was limited in the medication that he would proscribe to him, he essentially would not proscribe any stimulant medication as it was banned by the Irish authorities.

The Complainant feels that he is left with half a diagnosis and an extremely limited treatment options. He is not on effective medication. What other options exist to him are costly. He has a very limited income. He finds it hard to work due to workplace victimisation in the past.

The Complainant pointed out that if he had been diagnosed as a child he would be allowed more options regarding treatments. Others have had medications and treatments that began when they were a children and continued into their adult life.

It is clear to the Complainant that this scenario has emerged against the backdrop of a system where mental health services were put on the back burner and underfunded. People like the Complainant are not good at advocating for themselves and are not good at engaging the media. As such they are an easy target for cuts.

The Complainant has a significant issue with the assessment procedure and the decision not to do an autism assessment.  The Complainant has read extensively on this issue and particularly the health service provider’s policies. His view is that the landscape is extremely depressing. In 2002 the published policy was on his side and he should have been helped under the policy in place then. However the position has clearly changed. People like him (i.e. adults with developmental disorders who are not intellectually disabled) should not be helped by the health system.  Any attempt by him  to seek diagnostic services from the health service provider is seen as competing with children awaiting assessment in the context of extremely limited services. Seeking help is mischaracterised as a nuisance.

This process has been quite traumatic. He is worried about his relationships and how they are effected by his autism. He is worried about his impulsivity attached to his condition. He finds it difficult to research and find information on what services he can obtain.

He has some services for ADHD open to him but maintains these are not appropriate as they do not take into account his autism, he has concerns that because of this he might receive the wrong advice and treatment from these services. His treatment is fundamentally unequal to the treatment available to those who just have one condition (i.e. ADHD) and have no issues regarding co-morbidity as he does. 

The Complainant is of the view that he should get the same chance in life as anyone else. Medical treatments unavailable to him in the Republic of Ireland are available to him 12 miles across the border.  Ultimately this is determined by politics which is why the Minister is responsible in his view.

The Complainant thinks it is important for him to speak up, not just for himself but for others affected by the same issues.

Government statistics state that there is 2% of people with autism but they won’t properly diagnose this issue by allowing people like him to be seen and counted. Services cannot be provided to people that you pretend are not there.

Just because people like him are not seen or counted does not mean there is not going to be problems affecting them or society. It will manifest in crime and in homelessness.

The Complainant worries about his relationships and whether he might end up homeless if they were to fall apart. He and his wife work very hard at their relationship. He wants people to understand where he is coming from and that when he is reacting certain ways it can be to do with his condition.

He is concerned that people like him, denied the services they need, are going to be further misdiagnosed as they get older and institutionalised unnecessarily in some cases.

He and others with autism do not cope well with transition points. Often the trajectory in their life goes down after milestones are crossed. He was worried about retirement so was trying to be proactive about his health and condition ahead of retirement so he could deal with it well.

He is 55. He isn’t working. His wife is already retired. They have a fixed income while inflation continues to rise.

Ultimately, he is of the view that the issues relating to medication and services available lie with the Minister.

He wrote to his local TD who received a letter back from the health service provider, which was clear that the resources are not in place. This letter reiterated the previously mentioned myths about “high functioning” and the needs of adults with autism.

Fundamentally his case is about challenging the decision not to provide an autism assessment for himself or any other adult.

Such an assessment does not require the same resources as children’s assessments which involve multi-disciplinary teams.

He wonders what his life would have been like if he had been assessed earlier. He had an expectation that in engaging with the health service provider he would have an opportunity to start moving forward again and to give his relationships the best chance at success.

The medication he wants was not proscribed because his doctor thinks the benefit would not outweigh the risk of heart disease.

He and people like him have a right to belong. He never felt that way. He feels people are prejudiced against him and people like him without knowing it, through ignorance. Being denied the assessment for autism was an example of this.  

He thinks people being informed is extremely important. People like him don’t need very much but they need people to understand, when people understand someone they can feel their pain and care about it.

At this point I sought to clarify the key issues the Complainant is seeking to challenge in this case.

These are:

·He is seeking to challenge the denial of autism assessments for adults.

·       He is seeking to challenge the restrictions regarding the medication potentially provided to adults with autism.

·       He is seeking to challenge the misrepresentations made regarding the need for diagnosis and treatment and the cost of same.

·       He is seeking to challenge the misconception that his condition improves with age.

·       He argues that the criteria for treatment is unfair.

·       He is of the view that the treatments provided are unsuitable because they fail to take into account potential co-morbidity issues.

·        Ultimately these matters are political and political policy is determined by the Minister. The buck stops with him.

The Respondent sought to rely primarily on their submissions which are summarised here.

The Respondent argued that it is not named nor impugned in the complaint form . The  Respondent Minister and the health service provider are separate legal entities and the Respondent asserts that given the factual scenario described the Complainant complaint was clearly directed at the health service provider. 

It is respectfully submitted that it is not within the gift of the WRC to substitute/amend a Respondent on behalf of a complainant particularly where no request for same has been made. Moreover, it is clear from the substantive content of the ES1 Form that the Complainant did not intend to sue the within Respondent but properly sought to sue the health service provider.

Section 20 of the Act defines “respondent” as follows: “respondent” means a person who is alleged by a complainant in a case under section 21(1) to have engaged in prohibited conduct.”

The Respondent has no role in the provision of the services referred to by the Complaint and therefore in these specific circumstances it is not subject to 5(1) which states:-

5.—(1) A person shall not discriminate in disposing of goods to the public generally or a section of the public or in providing a service, whether the disposal or provision is for consideration or otherwise and whether the service provided can be availed of only by a section of the public.

The Respondent does come not with the scope of the Act given the factual circumstances advanced by the Complainant. The particulars of service provision in question are solely within the control of the health service provider.

The Adjudication Officer’s decision in ADJ-00035687 and in particular the summaries of the party’s evidence clearly supports the position that the health service provider was and is the proper respondent as service provider and in fact a detailed analysis of the particular service provided is recorded therein including but not limited to the fact that:-

“Every aspect of the treatment of the complainant arose from the health care providers clinical judgment as to what that treatment should be. There can be no doubt that the treatment and services he has received, and continues to receive, has been and is connected with that clinical judgment. The treatment provided was carried out solely in the exercise of a clinical judgment.”

It is further stated by the Adjudication Officer:-

“I concur with the respondent's assertion that Section 16(2) was inserted into the Acts because the WRC 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. I find that as he has been treated in the exercise of a clinical judgment in connection with his medical treatment the respondent has not therefore discriminated against the complainant.”

A hearing on the facts has already taken place and the issue is res judicata and the WRC has no jurisdiction to interrogate and/or adjudicate upon those same substantive matters again.

The Respondent is entirely prejudiced vis à vis the substantive allegations where as a matter of fact it has no knowledge of, direct or otherwise, nor could it have any knowledge of nor ability to impact nor influence the events alleged in the ES1 Form. Indeed, it should be noted that intervention by the Respondent in individual cases the nature of which is described in the ES1 Form is actually prohibited by Section 10B of the Health Act 2004, as amended by Section 6 of the Health Service Executive (Governance) Act 2013, which disallows the Minister from directing the health care provider to provide a service to any particular individual or issue a direction to the HSE to provide a service for an individual who is not eligible to receive it.

The WRC is bound to come to the same decision as that reached by Adjudication Officer Cunningham in her abovementioned

decision wherein she stated that:-

“In this case, the complainant has chosen to make a claim under the Equal Status Act, rather than proceeding by way of judicial review. If he wishes to assert that a statutory regime (i.e. the 2005 Disability Act) violates his personal rights as a citizen, it is open to him to so by constitutional challenge, whether by way of judicial review, or by plenary proceedings. What Section 14 (a) (i) makes clear is that he is not entitled to avail of the Equal Status Act 2000 for the purpose of impugning a statutory regime as one might do for example in a constitutional challenge.”

In the hearing the Respondent’s representatives referred to the Complainant’s evidence and in particular the rules regarding hearsay and expert evidence.

The Complainant has brought the above complaint in order to challenge failings in the Irish health system which he genuinely believes are discriminatory and unjustifiable.

I refer again to the summary of issues identified at the end of his evidence:

1.       He is seeking to challenge the denial of autism assessments for adults.

2.       He is seeking to challenge the restrictions regarding the medication potentially provided to adults with autism.

3.       He is seeking to challenge the misrepresentations made regarding the need for diagnosis and treatment and the cost of same.

4.       He is seeking to challenge the misconception that his condition improves with age.

5.       He argues that the criteria for treatment is unfair.

6.       He is of the view that the treatments provided are unsuitable because they fail to take into account potential co-morbidity issues.

7.       Ultimately these matters are political and political policy is determined by the Minister. The buck stops with him.

The Complainant argues that the various actions being taken by the health service provider relating to the above are ultimately decided by public policy and in particular resourcing. The responsibility for which rests with the Respondent Minister.

In considering these complaints and their relationship to the duties and powers of the Respondent Minister, I must first determine whether they can be considered within the scope of the Equal Status Act.

The Respondent rightly points out that the Equal Status Act concerns the disposing of goods and provision of services to the public. They argue that the Minister is not involved with providing the relevant services that the Complainant takes issue with but that this is the role of the health service provider.

The Complainant argues that the Minister is indirectly responsible and that the discrimination that manifests in the health care provider is ultimately caused by the decisions taken by the Minister.

As such I must first consider whether the Minister’s actions in directing public policy and the budgeting fall within the jurisdiction of this act.

The Respondent has correctly identified the scope of Section 5 of the Act, namely:

5.—(1) A person shall not discriminate in disposing of goods to the public generally or a section of the public or in providing a service, whether the disposal or provision is for consideration or otherwise and whether the service provided can be availed of only by a section of the public.

I also refer to the decision of my colleague in the Complainant’s previous case against the health care provider (ADJ-00035687).

Section 14 (1) (a) (i) of the Equal Status Act provides:

“Nothing in this Act shall be construed as prohibiting (a) the taking of any action that is required by or under - (i) any enactment or order of a court..”

Section 2 of the Interpretation Act 2005 defines an “enactment” as “an Act or a statutory instrument or any portion of an Act or statutory instrument”.

O’Malley J in the High Court Case of G v The Department of Social Protection [2015] IEHC 419, stated the Equal Status Act could not override the terms of another statutory scheme.  

The Complainant has rightly identified serious issues affecting him and people like him and holds the Minister ultimately responsible for these issues. However in reviewing the above it is clear that I have no scope to consider the matter further under the Equal Status Acts. I see no basis for this act being used to second guess the actions of the Minister in carrying out their duty to set public policy and budgets.

I do not find in favour of the Complainant in relation to any of the grounds submitted by him under Section 21 of the Equal Status Act. An award of redress under section 27 does not arise in the circumstances.

Equal Status Act, disability, autism, not upheld.