17 October 2013: Questions to the Department of Children and Youth Affairs, for answer before the meeting of the Committee on Health and Children.

Question 17: Family participation in HSE reforms in disability services

Question 18: Emergency medical card procedures for terminally ill

Question 19: Paediatric hospitals integration

Question 17: Family participation in HSE reforms in disability services.

Can the Minister outline the Department of Health’s strategy and objectives in terms of family participation in the major strategic reforms currently being undertaken by the HSE in the area of disability services?

The HSE and the DOH acknowledge the importance of involving service users, parents & families and wider community in the planning organisation & delivery of services with people with a disability. In this context, the development of a partnership approach between all these stakeholders has been an important part of the model of service over many years. A range of both formal and informal processes are in place to give effect to this strategic objective.

At a national level, the National Consultative Forum (NCF) which was established by the HSE is the mechanism for bringing these key stakeholders together.
The forum includes representatives of the various umbrella bodies representing service providers e.g. Federation of Voluntary Bodies, The Disability Federation of Ireland (DFI), the Not for Profit Business Association, a number of bodies representing families or service users are involved e.g. Inclusion Ireland and National Parents and Siblings Alliance. The National Disability Authority is also represented as are the DOH & HSE.

Similar fora have been developed at regional and local level. In addition to the above, the development of many of the key strategic policy documents have included such representation e.g. the Report on Congregated Settings, New Directions the HSE’s policy document on the development of day services and the Policy on Progressing Disability Services for Children and Young People. As these strategic policies are being implemented, the HSE is ensuring that local implementation groups provide for the involvement of service users and/or parents & families as active participants.

The current process, for implementation of 0-18 Children’s Service model, as outlined below, is a good example of the processes being put in place to ensure full participation by service users, parents & family representatives.

Children’s Services Model:

• Membership of the National Coordinating Group includes Inclusion Ireland CEO and 2 parent representatives
• A subgroup on Communications was established to focus on improving communications with all stakeholders, including parents..
• The programme’s recent Local Implementation Group (LIG) Lead Workshop included a presentation by the Special Needs Parents Association representative on how to involve parents in the LIG from a parent perspective which was extremely very well received. Guidelines on Parent and Service User representation on Local Implementation Groups was developed with input from Special Needs Parents Association and Inclusion Ireland and shared with LIG Leads Subgroup on development Outcome Focused Performance Management Framework for Children and their Families” included a parent’s voice in the working group. Ongoing work being done at local level across the country to hold parent information/briefing sessions in order to inform parents of the proposed changes and to seek parental involvement on the local

Question 18: Emergency medical card procedures for terminally ill.

Can the HSE clarify the procedures in place in the event that an emergency medical card issued on the grounds of terminal illness (and therefore not subject to means test requirement) needs to be renewed after six months, to ensure that the renewal process will be on the same basis as the initial application – i.e. on the provision of evidence from the GP or hospital consultant of the terminal nature of the condition – and the applicant will not be asked to provide details of means?

The HSE can issue a medical card where a Doctor or a Consultant certifies that there is a terminal illness. Where a patient is terminally ill in palliative care, the nature of the terminal illness is not a deciding factor in the issue of a medical card in these circumstances and no means test applies. Given the nature and urgency of the issue, the HSE has appropriate escalation routes to ensure that the person gets the card as quickly as possible. The HSE monitors such cases and can renew the clients’ eligibility if necessary. In such circumstances there is no assessment of means.

Under the provisions of the Health Act 1970, the assessment for a medical card is determined primarily by reference to the means, including the income and expenditure, of the applicant and his or her partner and dependants.

While people with specific illnesses such as cancer are not automatically entitled to medical cards, the HSE can apply discretion and grant a medical card where a person’s income exceeds the income guidelines.

In these cases, social and medical issues are considered when determining whether or not undue financial hardship exists for the individual in accessing GP or other medical services. Discretion will be applied automatically during the processing of an application where additional information has been provided which can be considered by staff or a medical officer, where appropriate.

The HSE set up a clinical panel to assist in the processing of applications, where a person exceeds the income guidelines but there are difficult personal circumstances, such as an illness. The Medical Officer reviews and interprets medical information provided by the applicant on a confidential basis. He/she can liaise with general practitioners, hospital consultant and other health professionals as appropriate so as to determine the health needs of the applicant and his/her family and dependants.

It is important to stress that the medical card system is founded on the “undue hardship” test. The Health Act 1970 provides for medical cards on the basis of means. That is what the law states and we must operate within the legal parameters.

The HSE can also provide a medical card for patients in an emergency where they are seriously ill and in urgent need of medical care that they cannot afford.

Emergency medical cards are issued within 24 hours of receipt of the required patient details and letter of confirmation of condition from a doctor or consultant and are generally requested by a manager in a Local Health Office or a Social Worker.

Emergency cards are issued for six months on the basis that the patient is eligible for a medical card on the basis of means or undue financial hardship, and will follow up with a full application within a number of weeks of receiving the medical card.

The HSE ensures that the system responds to the variety of circumstances and complexities faced by individuals in these circumstances.

Question 19: Paediatric hospitals integration

With the Children’s Hospital Group Board appointed on 2 August 2013 to oversee the long overdue operational integration of the three existing paediatric hospitals in Dublin into a new children’s hospital, can the Minister provided us with an update on progress and the timeline for each phase?

The Children’s Hospital Group Board will oversee the operational integration of the three existing paediatric hospitals in advance of the move to the new hospital and is also the client for the new hospital. I appointed Dr Jim Browne as Chair of the Children’s Hospital Group Board last April. On 2 August I announced nine further appointments to the Children’s Hospital Group Board. The Chairs of the three paediatric hospitals are members of the Group Board. Other competency-based appointments have been made, with further competency-based appointments to be made at a later stage. The first meeting of the new Board took place on 2 October last.

On 13 September I announced that Ms. Eilísh Hardiman had been selected as CEO of the Children’s Hospital Group. This follows an open recruitment process led by the Public Appointments Service. The role of CEO of the Children’s Hospital Group is critically important in driving forward the integration of the three hospitals, and the project as a whole.

The Children’s Hospital Group Board will work closely with the National Paediatric Hospital Development Board on the capital project. The National Paediatric Hospital Development Board (NPHDB) is the body responsible for the design, building, planning and equipping of the new hospital building. Also on 2 August, I announced appointments to the NPHDB which will ensure that the necessary capital development skills are available to drive this priority project to completion, including the appointment of Mr Tom Costello as Chair. These appointments replace the transitional Board of officials from DOH and HSE who had been charged with progressing the project on an interim basis. The key post of Programme Director for National Paediatric Hospital Development Board was advertised on 4 October and will be recruited via open competition. The Programme Director will be the chief officer of the agency, will lead the project and will be responsible directly to the Board for the delivery of this priority project.

Work on developing a detailed project timeline is continuing and I expect to receive an update on this within the coming weeks. This will reflect the urgency and priority of the project and also its scale and complexity. The estimated programme will be kept under continuous review and validation by those to be charged with project delivery.

In the near term, the tender process for the procurement of a new design team is well underway, and the aim is to have the new design team in place by the end of 2013. Pre-application planning discussions have commenced and the aim is to secure planning permission by December 2014 with construction to commence in Spring 2015. A review of urgent care centre(s) configuration is almost complete; the number and location of these satellite centres in the Dublin area is a key decision, as the size, activity and infrastructure of these satellite centre(s) has implications for the main hospital brief. In parallel, St. James’s Hospital is working closely with HSE Estates and the National Paediatric Development Board in regard to the decant phase of the project.

The new children’s hospital is a priority for me and for this Government. Everyone involved in the drive to deliver the new children’s hospital capital project is working to do so by the earliest possible completion date. I am confident that the appointments made to the two Boards will ensure the new hospital is completed as swiftly as possible, with optimal design and value for money.

Services for People with Disabilities – Motion

25th January 2012

I welcome John Dolan from the Disability Federation of Ireland, who is joining us tonight, as well as the aforementioned people. I would like to focus in my statement on what I believe are three fundamental failings in the provision of disability support services. One is that there are currently no independent inspections; the second is that the €1.5 billion of health budget that is spent on disability services is allocated to service providers rather than individuals; and the third is Ireland’s current capacity laws, which date back to 1871. Each of these is totally unacceptable and leads one to question what we have learned from our egregious failings towards vulnerable groups in State care in the past.

We can all agree that the only way to ensure we never repeat our past failings is to understand why they happened and for current and future policy to embrace what we learned. This is exactly what the recent Amnesty International report, In Plain Sight, responding to the Ferns, Ryan, Murphy and Cloyne reports, sought to achieve. Its aim was encapsulated by its executive director, Colm O’Gorman, when he said “The past only becomes history once we have addressed it, learnt from it and made the changes necessary to ensure that we do not repeat mistakes and wrongdoing.” In fact, the report identified a number of causal and contributory factors to the institutional abuse of children in State and church-run institutions, which unfortunately I see as being equally valid in today’s debate: the absence of a voice, the absence of statutory inspections, deference, and the failure of the State to operate on behalf of the people and not interest groups. While the debate we are having is in the context of disability supports and services, it is not really about disability – it is about justice, equality and human rights for all of our citizens.

With regard to the regulation and inspection of disability services, recommendation 11 of the Ryan report implementation plan states that independent inspections are essential. I will quote from the implementation plan, but I will take the liberty of substituting the word “children” with “people with disabilities”.
All services for [people with disabilities] should be subject to regular inspections in respect of all aspects of their care. The requirements of a system of inspection include the following:

– There is a sufficient number of inspectors.
– The inspectors must be independent.
– There should be objective national standards for inspection of all settings where [people with disabilities] are placed.
– Unannounced inspection should take place.
– Complaints to an inspector should be recorded and followed up.
– Inspectors should have power to ensure that inadequate standards are addressed without delay.

We are all aware of the commitment in the programme for Government, which we welcome, to put the draft national standards on a statutory footing. In fact, the second progress report on the Ryan report implementation plan, which was published last year, notes that a new target date of the fourth quarter of 2012 has been set. The report also notes that the commencement of the Health Act 2007 by the Department of Children and Youth Affairs to allow the independent registration and inspection of all residential centres and respite services for children with disabilities is contingent on the aforementioned action being taken. We still have not learned from our past and we still do not have the required systems in place. When will the Minister be in a position to give the necessary mandate and legal power to HIQA to inspect the centres?

In my research I was appalled to find that there has been no official audit of the number and location of centres, so we actually do not know where all the centres are and who is running them. I hope the Minister of State can show me evidence that this is not right. I also ask the Minister of State to explain why interim measures such as instructing the HSE and social services inspectorate to commence inspections of centres where children or those with disabilities live have not been put in place until an inspection regime is operational.
The second issue I want to discuss is the individual resource allocation system. Everyone agrees that we need to provide an individualised budget. We have spoken in the past about deference to the State and the church, but what about the deference that people in receipt of disability services are forced to pay to the HSE and service providers in circumstances in which they are unable to question or provide any input into the services they receive, where they receive them or who provides them? I have heard of cases in which an individual has chosen not to avail of a service, yet the State makes payments to the service provider, so the State is paying for a service that is not being accessed. It does not make sense. As the system currently operates, it seems that people with disabilities are expected to feel lucky and grateful for the supports and services they receive. The supports and services are provided by the State because we value all of our citizens. We recognise that we have different needs at different stages of our lives, and our system should reflect this.

We are all aware of and welcome the commitment in the programme for Government to introduce modern capacity legislation. I will not rehearse what has already been said, but I will give a quote from one of our briefings which clearly shows why the law is so archaic. Frieda Finlay, the chairperson of Inclusion Ireland, described the situation of herself and her daughter. She said: “As the parent of a 38 year old woman with an intellectual disability, who is a citizen by birth of an independent sovereign republic, I burn with anger every day at the thought that her capacity to make basic decisions about her life is governed by an Act signed into law by Queen Victoria and brought in by Gladstone’s Government 140 years ago.” The failure to repeal this law flies in the face of Ireland’s commitment to the right of all people in Ireland to live with dignity and exercise self-determination.

In conclusion, we all know what needs to be done. What we do not need is more reports; we do not even need more debates. We do not need pilot projects or think tanks. We need action and implementation. That is the reason for my disappointment that amendments have been tabled by both the Government and Sinn Féin. I urge my colleagues not to push them to a vote. The original motion that was tabled should be a catalyst for change. Let us show this to be a Seanad motion. It does not have to be an Independent Group motion. Let us collect around this motion and make it a Seanad motion, and let us show a strong sign of unity. That is what I urge my colleagues to do.

Order of Business, 25 January 2012

25th January 2012

I encourage my colleagues to participate in the Private Members’ debate on the motion proposed by the Independent group on disability support and services. I appeal to Members to support the motion as proposed. This is an important debate and I hope the House will support the very clear action points in the motion. It will be led by my colleague, Senator Mary Ann O’Brien.

I recall the Private Members’ motion by the Independent group on 12 October 2011 on criminalising the purchase of sex in Ireland. We are three months into the six-month period indicated by the Minister for Justice and Equality for public consultation. This matter was raised in the Dáil last week by Deputy Kevin Humphreys and the Minister advised that the consultation process would be ready before the end of January. However, I am concerned by the inclusion of a caveat in the Minister’s reply that the publication of the document before the end of January is subject to resources, having regard to compelling priorities including legislative priorities. I fully appreciate the financial times we are in and I know that the Government needs to prioritise its work. However, the debate we had on 12 October 2011 showed a clear link between prostitution and trafficking, particularly in respect of trafficking children for sexual exploitation. The protection of women and children from sexual exploitation must be a Government priority. I ask the Leader to invite the Minister for Justice and Equality to confirm that the consultation document will be published and that the consultation process will commence without further delay.

I also wish to raise whistleblower legislation. The situation of Louise Bayliss has been raised by the media in recent days. Coincidentally, she met me last Tuesday to discuss lone parents, before she heard the news. She is an advocate who has spoken out and we need to remember the five women she spoke out about, who were being put into a closed unit. How do we know how many other people are in that situation if we do not produce whistleblowing legislation? There should also be independent funding for advocacy organisations. This does not concern new funding but the basis of funding for the organisations working as advocates.

Finally, I wish to raise Children’s Rights Alliance report card launched on Monday. Last week, I called for the Minister for Children and Youth Affairs to come to the House and I suggest to the House that this is an excellent basis for discussion. The Government has failed in the report card in regard to St. Patrick’s institution and the continued detention of children in an adult prison regime. The effects of budget 2012 on lone parents and large families and the implications for child poverty were highlighted. The Government got the best grade any Government has received in four years but that does not mean it is good enough. We need to do more. It is a wide-ranging report which looks at all aspects of a child’s life and would provide an excellent foundation for a debate.

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”