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Dáil Éireann díospóireacht -
Thursday, 21 Jul 2016

Vol. 919 No. 2

Topical Issue Debate

Autism Support Services

Autism has been in the news frequently. Last week, a report from the National Council for Special Education stated one in every 65 schoolchildren in the State has a diagnosis of autism, a figure that is much higher than the one-in-100 estimate just three years ago. Despite that, it seems to be increasingly difficult for some children to get the services they need. That has certainly been the experience I have come across in Waterford and the south east.

I was recently contacted by several parents whose children have autism and access a specialist cross-functional autism spectrum disorder team based in Waterford. They have learned, to their utter disbelief and shock, that the team is about to be disbanded.

I will read from an e-mail I received.

I met with my son's speech and language therapist yesterday who told me she’s not allowed to see him anymore as the autism team has been disbanded. There is now no autism-trained speech therapist or occupational therapist that is allowed to see the autistic kids anymore. His speech therapist... has been given a different job that’s not autism related, as has his occupational therapist. Basically, kids with autism have all been put under the same section as all other disabilities. You will be seen according to where you live. Each area has only one speech therapist and that therapist is not autism trained and my son now has to go into her waiting list to see her. More waiting lists! I was told it could be longer than a year before he sees her. The therapists from the autism team are extremely unhappy as they believe that autistic kids need specific help in communication and occupational therapy to help them for their future. How can they learn to communicate if their therapist doesn't understand the way they think and communicate in their own ways? You need to know how to get them out of their little shells which a general therapist will not know how to do.

The autism spectrum disorder team in Waterford have been working miracles with the little resources that are available to them. This specialist approach with cross functional teams working together has shown great results. In addition to the children’s normal sessions this team run training courses for parents which include Early Bird and the Hanen programme. The ASD team also run a number of workshops such as feeding, visuals, sensory processing and sleeping. These training courses and information sessions have been tremendously useful to the parents and are invaluable in relation to supporting parents.

It’s not easy to hear the news that your child has autism, and realise that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? This team in Waterford has filled the void and the support they are giving to the children with autism and their parents and guardians cannot be underestimated.

I also have a constituent who has a daughter aged 11 with autism. She had been advised in December that her daughter’s case was considered urgent and to have a psychological review undertaken. She has been trying to arrange that for her daughter and when she spoke to someone in the HSE recently, she was told that those services have been cut for children aged between six and 18 years of age. She was also advised that there is no alternative available nor are there plans to have a suitable resource replacement. Could the Minister of State explain what is going on? Why are the services being cut back? How can that be considered fair?

I thank Deputy Mary Butler for raising the issue. I am pleased to take this opportunity to update the Deputy on the provision of supports for children with autism in the south east and in particular the services available in Waterford. The programme for a partnership Government commits the Government to improving services and increasing supports for people with disabilities, particularly for early assessment and intervention for children with special needs. Since 2014, the roll-out of the HSE’s progressing disability services for children and young people from zero to 18 programme has entailed targeted investment of €14 million and the provision of 275 additional therapy staff to increase services for children with all disabilities, including children with autism. This national project is currently under way with the aim of providing services to children with all disabilities to be delivered by the children’s disability network teams. They will be based in the community and each child will be allocated to the team nearest their home address. Services will be needs-led rather than diagnosis-led. That is to ensure equity of access across Waterford and throughout community health care organisation, CHO, 5 and also across the country. It will also provide a standardised holistic, family-centred service to children and their families.

The autism spectrum disorder, ASD, specialists will be assigned to the children’s disability network teams and will work from within the teams, rather than as a standalone service. That will mean children will continue to receive the intervention required, even when wait-listed for ASD diagnosis. Children with autism spectrum disorder will continue to receive intervention and families may avail of parenting workshops as appropriate from the network teams. A small cohort of children with autism and complex needs may require one-to-one intervention and that will be delivered by the ASD specialists. In future, there will be only two pathways for all children, including those with autism, through primary care services or through the children’s disability network teams. The HSE provides a range of services for children with autism which may include the following: assessment diagnosis, therapeutic intervention, nursing support, respite services and home support services. Access to service is based on the referral criteria, prioritisation and the particular service model within each discipline required, for example, psychiatry, psychology, occupational therapy, speech and language therapy, physiotherapy and social work services. They are the issues on which we need to focus.

In addition, the HSE may provide grant aid funding to voluntary groups and autism support groups. Support can come from other parents or guardians who have children with ASD and from autism support groups. The key objective is to achieve equity of access and consistency of service delivery, with a clear pathway for children with disabilities and their families to services, regardless of where they live or go to school or the nature of the individual child’s difficulties. I am confident that the additional resources being invested in both primary and disability services will have a positive impact on the provision of clinical services to all children with disabilities, including autism, and those who may currently be on waiting lists. I accept Deputy Butler's point that there is a problem in that regard and I will deal with that later. There are waiting lists to access therapy inputs not just in the south east, but across the country.

The Minister of State said that the autism spectrum disorder specialists will be assigned to the children's disability network teams and they will work from within the teams. I am sure he is well aware that children with ASD have considerable difficulty with change. They take a long time to get know people, places and routines. Anything that upsets that makes the challenge they face even more difficult. The parents are shocked that the HSE has adopted such an approach knowing the damage it can and will do.

Everyone knows that resources are limited. However, there is a dedicated team that is getting great results which supports children and parents on an ongoing basis. The question is why consistency is being replaced with disruption and why specialist skills are being replaced with general skills. Could the Minister of State clarify whether there will be longer waiting lists if the children change to children's disability network teams and that the children will not have to go back to the start again? There is considerable concern in Waterford among parents about the potential effect on their children. What effect will the change have on the children? Is the approach being taken best practice? Could the Minister of State ensure that if services are reconfigured, no child will lose out, even temporarily?

I share the Deputy's concerns about services for children with autism. This morning, I met with Irish Autism Action and many of the same points were made to me. I gave a commitment that I would go back to the HSE and the various Ministers within the sector to deal with the issue. I have an open mind on it. I accept what was said by the Deputy. I do not say this lightly, because I know the facts about the situation in Waterford. There was an excellent team there of one speech and language therapist, one occupational therapist, one liaison worker and three psychologists but there was a problem within the system due to a number of circumstances, including HR issues such as extended leave and maternity leave, and the service was unable to function at full capacity for several years. That resulted in a reduction in the service's ability to provide one-to-one intervention and to carry out ASD assessment and diagnosis. Instead, the remaining therapists provided training and support workshops for parents. I accept there is an internal HR problem that must be addressed.

I share Deputy Butler's concerns about the overall issue. There must be investment. The reality is that services for children with disabilities, and autism in particular, have suffered in recent years. What we are attempting to do is to reinvest and build up the services. However, the services must suit the child and be available, strong and functional.

On the broader issue, I want to focus on ability and not disability. I want to reduce the stigma around autism. I want to include everybody and ensure that children and young people with autism are not discriminated against. We can all then make a difference. We need to invest in the services and that investment has started. I guarantee the Deputy that, in respect of the Estimates, we are going to be working on it over the summer, starting this morning. Autism is a very high priority on my list.

Hospital Procedures

I am raising a matter which I consider to be extremely important and which impacts on patients who are waiting for a cardiac procedure called a transcatheter aortic valve replacement. This procedure involves the replacement of an aortic valve in a less interventionist way than by means of open heart surgery. The aortic valve is replaced by a cardiologist rather than a cardiac surgeon. The valve is replaced through a femoral or other artery instead of via open heart surgery, as I have stated. The reason patients require this type of cardiac intervention is that open heart surgery has been medically assessed as being inappropriate due to the underlying medical conditions of the patients involved. For example, some of them have quite severe cerebrovascular disease, renal disease, arterial disease, underlying respiratory issues or even haematological issues. They cannot get the required treatment via open heart surgery, which was the historic means to make a cardiac intervention. That is impossible for many patients.

This transcatheter aortic valve is the solution for the patients in question. Many of them, as I have discovered through constituency representations, are not getting the intervention they need and deserve. The situation, as it currently stands, at the Mater Hospital is an illustration of total and complete management dysfunction. It is an illustration of the complete dysfunction of the Ireland east hospital group and the short-sighted, irrational and clinically dangerous allocation of resources within our health service.

The information I have received is that there are up to 18 patients who are clinically unwell and sick. They are not clinically able for open heart surgery. They are assessed as needing this valve replacement in the Mater Hospital. They have complex medical and cardiac needs and time is absolutely of the essence. The barrier, however, to them getting their required intervention is not a staffing issue, an issue with theatres or an issue of bed capacity. We have the doctors, the nurses, the theatres, the hospital and the beds. We do not have one thing: the State, the HSE, the Department of Health and the Ministers will not provide funding for more than two valves per month. The consequence of that for many patients is that they are becoming clinically unwell and sicker. Their lives are at risk as a result of an unfair management practice.

The HSE - and, by extension, the Department and its Ministers - is refusing to fund more than two of these procedures per month within the hospital because of the cost of the valve. Patients are left lingering for months, with their lives at risk and their health deteriorating. A rigorous, irrational and completely unreasonable budgetary approach to transcatherter aortic valves means that medical and health teams that are already in place cannot make the intervention they are paid to make. Why? It is because neither the Ministers nor the HSE, as the service provider, will provide funding for the necessary equipment. As a consequence, many of these patients are in our hospitals being managed medically because their underlying symptoms are worsening and they cannot get the valve. It is the most unreasonable and irrational method of allocating funds. I accept that the valve costs more than open heart surgery. However, it is regressive, in the context of our health policy, to limit the quantity of valves when we have the teams in place. We have spoken about recruitment issues in our health service. That is not an issue in this case. The staff are there to perform the procedures and have been telling the patients that they will perform them. They have the theatres but the HSE will not provide funding. I urge the Minister of State to address this issue.

I am taking this matter on behalf of my colleague, the Minister for Health, Deputy Simon Harris, who has asked me to extend his apologies to the Deputy as he is unavoidably occupied elsewhere. The debate gives me the opportunity to update the House on the transcatheter aortic valve implant, TAVI, procedures at the Mater Misericordiae University Hospital, as raised by Deputy Chambers.

Aortic stenosis is the most prevalent valvular heart disease and the third most common cardiovascular condition after coronary artery disease and hypertension. Many patients with advanced aortic valve disease are too high a risk for traditional treatment, such as open chest surgery, due to advanced age or co-existing medical conditions. Catheter-based techniques such as TAVI are, therefore, hugely important as they provide an alternative method for treating aortic stenosis in patients with unacceptably high surgical risks. TAVI procedures are a relatively new development in Ireland, with the first case performed in 2008. In addition to the Mater, TAVI services are now provided at St. James’s Hospital, Galway University Hospital and Cork University Hospital. I understand that funding arrangements to date facilitate a limited number of these procedures to be undertaken each year. The HSE has advised that, so far in 2016, at least 19 TAVI procedures have been completed at the Mater. The HSE has also told me that the Mater manages waiting lists with due regard to the complexity and urgency of the cases presented. Further development of the TAVI service will need to be considered as part of the 2017 Estimates process now underway, in the context of overall competing priorities and demands for health service funding. In the context of waiting lists for this service and for all health services, I wish to emphasise that improving waiting lists for scheduled care is a key priority for the Government. The emphasis in the programme for a partnership Government on the need for sustained commitment and funding to improve waiting times for patients is evidence of this. However, I am aware that waiting list data for June 2016 shows that the numbers of those on lists increased nationally in the first half of the year. The Minister, Deputy Harris, met the HSE national director for acute hospitals on Friday last, 15 July, regarding proposed measures to tackle waiting lists. He has asked the HSE to submit an action plan setting out the specific measures it proposes to implement with hospitals within current resources between now and the end of 2016 in order to achieve tangible improvements in waiting list management. The action plan will focus on measures to improve hospitals' processes in managing waiting lists, to validate all waiting lists and to target the specialties and hospitals with the highest numbers of patients waiting. I want to emphasise the Government’s determination to address undue waiting times for all those in need of our health services, including TAVI procedures, and I am confident that good and steady progress on waiting lists overall can be achieved in the months ahead.

I thank the Minister of State for the response. She has reiterated what I told her about the issue around aortic stenosis and the medical complexities involved. She then mentioned how the Government funds some of the procedures and how there is limited funding for them. Finally, she provided a summary from some manager about what they are apparently doing to address the waiting list numbers, which have rocketed this year. She did not address the specific question around these TAVI procedures at the Mater Hospital. That was all management lingo. She spoke about the 2017 Estimates. That will do nothing for the 18 patients who are waiting today for this procedure. They do not have the six months to the end of the year to survive. That is being realistic about it. She has given no commitment to address the current chronic issue of not funding the piece of equipment needed.

Let me give an example. There is one patient in my constituency who has been in the Mater Hospital for a month. The cost of a bed is €1,000 per day. He is going to be there for more than two months. That could equate to a cost of €60,000 to the State. The valve costs €22,000 and there are negligible staff costs because we already fund them. The problem we have in this health service is that we see the bed capacity issue as a fixed cost. He can stay in the bed. Managers are not necessarily concerned with his medical outcome because if he gets the clinical outcome and procedure, someone else will replace him.

There is no incentive within management to see clinical progress for patients and to cut the waiting list. They do not care whether he is in the bed any longer, because they have left him there and have focused on the estimates and the costs. The clinical outcome could be much improved for him and for others if they were given the valve and the procedure. They then would be discharged from the beds for the benefit of someone else. Instead, he is being left in the bed, which is a cost to the State, to the detriment of his health and to the detriment of the health service overall. The 2017 Estimates and the management lingo about what the Government is doing regarding action plans about waiting times is nonsense. It will not address this specific issue in the Mater Hospital, which is rigid and irrational management procedure regarding the funding of a basic piece of equipment when all the additional costs already are being funded. The Government must tackle management to stop this and I urge the Minister of State to do it now.

I thank Deputy Jack Chambers. The extent to which he is exercised by this important topic is evident. I also am exercised and any Minister in the Department of Health obviously would like to see the €14 billion of taxpayers' money allocated to the Health Service Executive, HSE, is being well spent. This is why the Government is taking waiting lists, including this particular one, so seriously. The Minister, Deputy Harris, and the Department are engaging with the HSE to establish how these waiting lists can be reduced. It is interesting to see the kind of numbers that are being dealt with overall. For example, there are 3.2 million outpatient attendances at hospitals.

That has nothing to do with what I am asking the Minister of State.

It is, however, part of the overall picture of waiting lists.

It is not what I want. I seek a specific picture.

I would like an opportunity to respond. Deputy Chambers, you are a new Deputy and I thought the least you would do is afford somebody the opportunity to answer-----

Through the Chair please. The Minister of State, without interruption.

Yes. I thought Deputy Chambers might also afford me the courtesy of speaking through the Chair-----

I have asked for the Minister of State to be allowed reply without interruption.

-----which would be very helpful.

The Deputy's behaviour has not changed since the very first time I encountered him in the Chamber, when I was in the Acting Chairman's position. In any case, there would be no harm in doing a little bit of an induction course for some of them.

Would you learn to answer questions?

The overall budget of the HSE is €14 billion and while the Deputy alleged it was not being funded adequately, it has received an increase of a further €500 million, which was approved just last week. Yes, there certainly is something wrong with what is happening in the management of waiting lists and we all want to get to the bottom of it. The Deputy is not the only person who cares about this and I reiterate the Government is taking this matter extremely seriously. Not only are there waiting lists in the Mater Hospital but there are others elsewhere the Government also wishes to address. However, it should be given the opportunity because one should remember the party of which the Deputy is a member caused the financial crash-----

Answer the question.

-----which put us into the financial mess we are in.

That was unfair.

Answer the question.

The Minister of State, without interruption.

We are now trying to come out of it-----

She is not answering the question.

-----and do a good job to give back to-----

-----the people the type of health service they deserve.

The Minister of State made it personal; there was no need.

I thank the Minister of State. Everyone's nerves are getting frayed towards the end of the session, of which only another hour or two remains.

Homeless Accommodation Provision

Is the Minister of State taking the third matter?

I was told it was being withdrawn.

That is news to me.

The Deputy who intends to speak on it is present. If he will bear with me for a minute, we will check the office for the Minister. The Minister of State is in the Chamber and Deputy Pringle should proceed.

I thank the Acting Chairman. I thank the Ceann Comhairle for allowing this issue. I believe a topical issue was withdrawn earlier, albeit not this one, which probably is what caused the confusion. As Deputy Maureen O'Sullivan cannot make it, I will raise the matter by myself.

Five families have been told they must leave Lynam's Hotel on O'Connell Street in Dublin by Saturday, as the hotel has gone into receivership and the National Asset Management Agency, NAMA, has appointed receivers to the hotel. I acknowledge Dublin City Council is in negotiations to try to get more time for these families but this system is broken and all the city council can offer families is more of the same inadequate, insecure accommodation for short periods and I believe the Government must now intervene in this particular case. It is important to portray the reality of the situation and I will outline the circumstances of some of the families who are in Lynam's Hotel.

Annette, who is 26 years old, is staying in Lynam's Hotel with her 18 month old daughter, Kayleigh. They were made homeless in March of this year and since then have been on the move between hotels and bed and breakfasts. This is completely inappropriate for a young child, as they live in a single room with no way of getting bottles heated or storing milk and the family is obliged to rely on fast food. Annette has been on the housing list since 2009. She was in private rental accommodation until her landlord decided to sell and gave her 28 days' notice to quit. She was asked to leave the hotel today and has been told she can go to the Gresham Hotel for 40 days but that if it gets busy, she will be obliged to leave there as well and be moved on somewhere else.

Another family - Anna, her husband and five children - have been living in separate rooms in Lynam's Hotel and when schools are open, she must bring her kids back out to Dublin 15 each morning to attend school. Anna had a baby in February. She works part-time and is a participant in a community employment scheme. Her husband works full-time on a zero-hour contract. This family has no cooking or laundry facilities and no security. They are being offered another hotel miles away in Newlands Cross, again with no facilities and no guarantee that they will even get adjoining rooms for the children. They have been on the housing list for eight years. They have been obliged to put many of their belongings into storage and into the homes of family and friends and even were required to sell off some of their furniture because they had nowhere to keep it.

Leanne Heffernan is another resident there who is in the Gallery today. She has two children and has been treated despicably by the State for a long time. Leanne was a 12 year old victim in what became known as the Mr. A case in 2006, when there was public outrage after gaping holes in the law led to the release of her attacker. At the time, the current Taoiseach, Deputy Enda Kenny, described the then Government as a "headless gang of bunglers" for letting down this young victim. Today, she is being victimised again by the State by what one could describe as a different Government of bunglers.

These families are being destroyed. They currently are living hour to hour with very little information, no support and no key worker from the council, which they were promised ten days ago. They seek some form of secure accommodation in order that they can work on getting themselves permanent homes. This is impossible for them under the circumstances as at present it takes all their energy to try to find ways to wash clothes, get decent meals for the children, get them to school and worry about where they will be next week. This system has broken down completely and is letting these families down badly. Moreover, as I have outlined, for some it is by no means the first time they have been let down by the State. I acknowledge that Dublin City Council is in negotiations currently with the receivers to try to get more time and find adequate alternatives but if the Minister of State is serious about dealing with this problem - the Minister, Deputy Coveney, has stated he wishes to end hotel accommodation within the next year - this is an opportunity to do something positive. The Government should intervene today in those negotiations with the receiver, who is acting on behalf of NAMA, and instruct the receiver to lease the building to Dublin City Council.

It is not adequate accommodation, we all know that, but these families would at least have some sense of security and would be able to work on getting themselves out of their situations of homelessness. We must ensure that Dublin City Council leases the property so that we can give them that sense of security. That is the very least we can do to ensure these families are not shunted around between hotels and bed and breakfast establishments across the city.

I thank Deputy Pringle for raising this issue and I apologise for being late.

As the Deputy will be aware, the housing action plan, Rebuilding Ireland, which was launched this week, sets out what we are trying to do in this area. We are trying to end the type of situations highlighted by the Deputy. I understand that the Deputy wants an urgent solution to the issue he highlighted but what we are trying to do in terms of the plan is deal with housing issues for everybody so that we can prevent homelessness into the future.

It is widely acknowledged that accommodating families in commercial hotels is inappropriate for anything other than a short period. This is not acceptable and we must do all we can to prevent it. One of the many objectives of the Government's new action plan for housing and homelessness launched earlier this week is that by mid-2017 hotels will only be used for emergency accommodation in very limited circumstances and not at all, if possible. The intention is to move the existing group of families out of hotels as quickly as possible and to limit the extent to which such accommodation is used for new presentations. The plan provides for early solutions to address this challenge, including the provision of 1,500 rapid-delivery units, some 1,600 vacant units to be sourced by the Housing Agency and the transition of homeless households from emergency into independent tenancies through the Dublin region pilot of the housing assistance payment. Some 550 tenancies are to be delivered in 2016 and 1,200 in 2017. The plan also contains a range of additional services and supports which will be put in place for families in emergency accommodation, such as the families mentioned by Deputy Pringle, including dedicated workers, home-school community liaison, free public transport for family outings and for journeys to school, access to crèches and advice on cooking and nutrition. Ultimately, however, the key to addressing family homelessness is to supply more houses.

In forming the current Government, we were determined that this challenge would be addressed, fully and finally, and so it was positioned as a key element in the programme for a partnership Government. The publication this week of Rebuilding Ireland, well within the timeframe of 100 days set out in the Government programme, underpins our commitment to ending the housing shortage and addressing homelessness. My Department's role in respect of homelessness involves the provision of a national framework of policy, legislation and funding to underpin the role of housing authorities in addressing homelessness at local level.

In accordance with section 37(2) of the Housing (Miscellaneous Provisions) Act 2009, statutory responsibility for the provision of homeless services, including accommodation, rests with individual housing authorities. All housing authorities have wide and flexible statutory powers to assist or make arrangements for the accommodation of homeless persons. This means that operational issues, such as those raised by Deputy Pringle, are a matter for the relevant housing authority, in this case, Dublin City Council. I am informed by Dublin City Council that the hotel in question is but one of many being utilised to provide emergency accommodation to homeless families. I also understand that the hotel in question is, as pointed out by Deputy Pringle, in receivership and that vacant possession is being sought by the receiver as part of that process. I am informed that Dublin City Council is seeking to negotiate an extension of the date for vacant possession with the receiver. This would allow the Dublin Region Homeless Executive additional time to put appropriate alternative arrangements in place for the affected households. These arrangements include sourcing alternative accommodation and support services for the families, such as key workers, which as Deputy Pringle said were promised but have not been delivered. I will make inquiries with regard to that matter and will communicate with the Deputy tomorrow. I am hopeful that these discussions will reach a favourable conclusion shortly. I am conscious that Saturday is the deadline for some of the families and I have asked Dublin City Council to keep me informed of developments in the matter.

On the Deputy's proposal that the hotel be leased, I will discuss that with my departmental officials later this evening. There is logic to the idea. We are trying to look at all available solutions in the weeks and months ahead. While we are confident that we can deal with this issue and have everybody out of hotel accommodation in a year, the latter is 12 months away. We need to find other solutions. I will inquire if the Deputy's proposal is an option. I am not sure if it is but I will raise it. It is certainly worth checking out. As I said, I will communicate with the Deputy tomorrow in respect of the key workers and so on.

I thank the Minister of State for his response, the most important part of which is his commitment to raise these issues. It is important he does so. While the earlier part of the Minister of State's contribution gave a nice overview of what the plan and strategy seeks to achieve, for these families the strategy will fail unless we act now to ensure that this hotel is leased to Dublin City Council. The onus is on us to do that. NAMA is a State agency. The receiver was appointed by NAMA. That the receiver can demand vacant possession and families will have no choice but to vacate is a disgrace. This cannot be allowed to continue. I urge the Minister of State to contact NAMA this evening and encourage it to address this issue immediately. Some families have been told they have to leave the hotel today and others have been told they must do so by Saturday. We should be sending a clear message to those families to stay where they are, that this issue is going to be resolved and that the hotel will be leased to Dublin City Council. This will at least provide them with some form of stability for a while during which time they might be able to source alternative accommodation or it will give the new plan time to work so that such issues can be resolved for families.

I look forward to hearing from the Minister of State tomorrow. I hope the news will be positive. If NAMA fails to agree to lease this hotel, we should tell these families not to leave in any event. We need to put it up to NAMA. We cannot allow this to happen.

As I said, I will do what I can and I will report back to the Deputy tomorrow. I will check whether what he has proposed is an option. This issue has been flagged for some time and it should have been resolved before now. I know that Dublin City Council is trying to negotiate directly. We are still expecting a solution in that regard. I will update the Deputy in that regard tomorrow too.

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