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Position paper on Home Support Services Standards

Voice of Vision Impairment, November 2021

Introduction

Recently, VVI has been engaging with the health services regulator, HIQA, on optimal standards in home support services, including a focus group meeting on November 30th, 2021.

The following position paper comes from HIQA’s questions and the responses of our members, which was augmented by the focus group engagement.

This position paper is compiled by Gerry, Ed, Áine, and Robbie.

What works well?

1.1. Flexibility to Adapt to Clients’ Needs

In the HSE Home-help service the fact that the client is free to tell the home-help what needs to be done, and there isn’t a prescribed list is positive. In England for a while, in some local authority areas, home-helps were prohibited from reading printed material to visually impaired people or anyone who had problems reading print. The lack of such prescriptive requirements by the home-help service is a positive feature.

We do recognise, however. that this needs to be balanced with the benefits to clients, workers, and agencies, to have clear expectations of work.

1.2. Spot Checks

Occasional spot-checks by Health Nurses etc, are essential and welcome on the rare occasions when they happen, but but these need to be done properly and more often (see below).

What would make things better for people using home support services?

2.1 Disability awareness training for all Home Services staff

This training should include the workers themselves, as well as supervisors that are properly trained in how to run the home-help service.

2.1.1. Examples for workers regarding visual impairment

For example, Home-helps will often put away items when tidying, cleaning, or washing. Sometimes this makes such objects very difficult to find when they have been placed in unusual locations. For a visually impaired person, having things moved to a different location can mean that they can’t be found, or that they are knocked down because they are encountered unexpectedly, E.G. a toothbrush an toothpaste placed on a different area of a shelf or, on a different shelf. A cup that is placed just on the edge of a shelf in a press that falls out when the door is opened.

Similarly, where one worker may have the intuition to ask about an out-of-the-way object that is gathering dust, and the visually impaired client may have forgotten that they had such an object in their possession, others may not have such intuition. Perhaps such things cannot be taught, but awareness is a good thing.

For visually impaired clients, the home worker can be a useful pair of eyes. For example, someone had placed a grapefruit in an unusual place in the house of a VVI member, and not knowing this, our member was wondering where the smell of mould was coming from. A home services worker was able to correct the situation immediately on seeing the grapefruit.

Whereas, generally, problematic hoarding can be identified and diplomatically worked with by home support workers, including recommendations of getting appropriate referrals, and working with the client to clear spaces, this skillset takes on another dimension with visually impaired clients who may have a lot of paper clutter that may need disposing of. In such situations, of course, permissions must always be sought before such papers are gone through by the worker in consultation with the client.

2.1.2. Listening

As well as a more formal disability awareness training, there is a Need for workers to listen to the service-user on how they need things done. They are the experts in their needs. For example, homecare workers dealing with a visually impaired person need to leave everything back exactly where they found it, or if not, ask permission before moving an item to another place, explaining reason.

2.1.3. Time-keeping

Not specifically related to disability, but important nonetheless, is time-keeping. Workers should only ever show up at the appointed time, and not unexpectedly. If they are running late, they should first check with the client before arriving, and if something comes up for them unexpectedly, they need to inform the client as early as possible.

2.1.4. Hygiene and First Aid training

Workers should also be trained in safety hygiene and basic first aid training, including cardiac pulminory resuscitation (CPR).

2.2. Regulation and Regular Monitoring

2.2.1. Regulating the Sector

Currently, the home support sector has no independent regulation. This necessarily means that the standards of care on the ground are likely to be significantly varied. The well-being of service-users should not be a matter of luck or chance. Clients and their families need to know that they can depend on a certain standard of quality care with accountability and choice embedded in the system.

At the very least, there needs to be objective benchmarks or measurements for the purposes of assessment of standards.

In so far as is possible, such standards should also apply to family carers, at least in so far as the need to protect anyone from living in squalor and in an abusive situation, and the need to uphold the dignity and Human Rights of everyone in our society.

2.2.2. Matching Workers and Clients

There should be a practical acknowledgement of the Importance of flexibility regarding particular needs of clients and particular talents of workers. Such optimal matching of clients and workers could be bart of the disability awareness training in 2.1 above.

For example, a worker may have a particular gift at befriending, and certain clients would be likely to benefit more from such talents. Other clients, on the other hand, may prefer their own company and space, and just need practical assistance. Indeed, some clients may be neurodiverse, with particular boundary needs, that may suit the talents of other workers.

As part of the matching process, it might be a good idea to also factor in compatible interests or hobbies etc., further facilitating a mutually warm relationship between client and worker. Matching skills such as language proficiency would be of similar mutual benefit.

2.2.3. Direct Line between management and service-user

There should be a direct line of communication between the service provider and the service receiver in order that the service can be monitored regularly to ensure that a quality service is being given and the service recipient has the opportunity to inform the service provider that the individual employed by them is suitable for the provision of services for that particular service recipient.

2.2.4. Accessible Modes and Formats of Communication

The format of communication by the service provider with the service user must be in accessible format, with provision made for accessible communications in the opposite direction (cf. Disability Act, S28; CRPD, Art. 9; Equal Status Act (2000, Ss. 4, 5). Options may include large print, braille, but also include phone calls and other forms, such as constntual consultation visits,

2.2.5. Written Record

There are reports of home-helps who are supposed to provide an hour’s work but who only stay for half an hour, which is missed by management, since There is often no communication with the client by the home-help supervisors about the standard of the service”.

The staff member of the service provider should keep a diary of tasks completed at the dwelling of the service recipient, which can be periodically submitted to the contractor for review or checking.

a copy of the same journal should besigned off on, or given to the customer or close family member who is referenced as a close contact so that the service recipient can confirm same. Also, that in the event that the service person is not suitable, there should be the option of replacement by another staff member to provide the home care hours .

This does not negate the idea of a care plan, but means that flexibility can be built into care-plans where they exist.

2.2.6. Anti-Bullying Awareness by Management

It is also important that such a link is in place to ensure that bullying doesn’t take place. Bullying can be in different disguised forms: using the individuals credit card for purchasing goods other than the goods required by the service recipient, Acquiring possessions of the service recipient as they don’t appear to have a use for such goods, services in their present circumstances (see also 2.6 below).

2.2.7. A Red Flag Mechanism

As part of the regulatory system, there needs to be a mandatory mechanism whereby records of complaints against an individual worker are maintained, including across agencies. It should not be possible for workers who have been found to have been negligent on more than one occasion to simply be moved around or passed on to clients until ones are found that don’t complain. If a worker is negligent with one client, there is a high probability that that client is not the only one, and this should also be borne in mind when a worker has been found to have been negligent or unprofessional with one client.

2.2.8. External Reviews – Independent Monitoring of Standards

A VVI member reports that, “In our local area a survey was conducted to gauge client satisfaction. It was conducted by individuals who were not trained to carry out such work. The survey questions were put to the client in the presence of the home-help whose services were being assessed”.

Solution

Spot-checks by adequately trained personnel (independent or management), should occur at regular periods, e.g., at least once a year or on request, and not in the presence of the worker.

Obviously, all entry to the home by anyone involved in the service-provision or its monitoring, must be predicated on the consent of the service-user. This also presumes prior arrangement of a visit, and not someone just showing up at the door of a service-user, unexpectedly.

Unless a problem or problems are found, such spot-checks should be confidential (between management and the service-user).

2.2.9. Moving On

The service recipient should have the right to change their home assistant in the situation that they do not feel comfortable with the arrangement and communicating this to the service provider. There should be no stigma about either side wishing to move on to another worker/service-user.

2.3. Other Communications

2.3.1. Workers’ Holidays, Illness, replacements and trainees

To quote a VVI member, “In our area when a home-help goes on holiday there is rarely any cover. People are left without the service until the person returns from holiday. No official notification Is given about a home-help taking a holiday. it is left to the home-help to inform the client”. Similarly, a worker may have to take sick-leave or retire.

Our members report cases where such information has not been passed onto them at all, so that they expect a worker to arrive, and nothing happens for a fortnight or so, or even, a worker has taken sick-leave, has not been replaced, and the client has not been informed.

When people are being trained they are often sent out with an existing home-help to a client without the clients consent or knowledge that a trainee will be accompanying the home-help (see also 2.6 below).

When workers are changed the client is not necessarily officially notified, again, it is left to the existing home-help to inform their client.

2.3.2. Respecting Close Connections between Workers and Clients

One worker states that she can go to somebody as a home-help or carer, (she does both) and she may know that person for a number of years but isn’t always told when they have died. Often as a carer she is looking after somebody in their home and then they may go into hospital. She doesn’t get told if they die. Also, sometimes people are found dead int their homes and she still isn’t told even if she has been going to that person regularly. This happened recently and when she complained she was told that she shouldn’t get close to her clients.

If you have a situation where carers and home-helps are too afraid to get too close to their clients because of what may happen to them, then you essentially have a service without anyone who does care. These people are not taught how to distance themselves and neither incidentally are doctors and nurses. But if the people providing the care are not properly nurtured then they can’t provide an optimal caring service to their clients.

2.4. Insurance

There are reports of home-helps who frequently break crockery ETC. There appears to be no proper insurance in place to cover damages of clients’ property

2.5. Sufficient Time Guaranteed

The service recipient should be entitled to a sufficient quota of hours of service to ensure that a quality service is given, The allotted hours should not be reduced by the loss of hours due to staff having to reduce time due to travelling between clients or due to the case of a particular client requiring extra attention in a particular occasion.

2.6. Specific Designated Workers, and no-one else.

Staff service provider contracts should specify that the member of staff and they alone, should engage with the service receiver, thus eliminating any other personages from entering the dwelling of the service recipient such as other family members or friends of the service provider staff member unless with the explicit permission of the service receiver (see also 2.2.4, and 2.3.1, above).

2.7. Need for Comprehensive System

Our members perceive a need to co-ordinate or otherwise dovetail home help into personal assistance. For example, a person might like to go into town to shop for items in Dunnes etc., and have lunch there etc.

Similarly, while it is pointed out in the scoping document that certain medical services such as nurses, physiotherapists etc are not included, the individual may require management assistance of their circumstances due to incapacity caused by a long-term impairment or medical conditions which require ongoing treatment and which need organising on a local basis rather than having to travel extended journeys for minor pre op testing, i.e. individual from midlands has to travel to have procedure done in C.U.H. but is also required to attend appointment at C.U.H. at 8am on a Sunday prior to surgical procedure for Covet19 test. Logically, the individual could be tested locally and the results passed on to the Team in C.U.H. All the details involved in such arrangements could be managed in house so as to streamline service.

Remote PA systems such as AEIR should be supported by the HSE, or whichever statutory body is responsible for PA services.

The right to live independently in a community is universal. Among other things, this means that there should be no age cut-off points for the provision of personal assistance.

2.8. Customer Services Charter

That the service recipient be made aware of their customer rights and the content of a customer service charter which sets out the parameters of the quality of service the individual is entitled.

2.9. Better Pay and Conditions for Workers

2.9.1. General Pay and Conditions

Home service workers getting properly paid and most of the payment for their work not going to an agency would be very welcome. Poor wages and conditions inevitably leads to poor turnover and generally less quality of interactions.

2.9.2. Replacing the “Agency” Model

Workers should have the same employment rights as is normal in other sectors. The sharade that they are “self-employed” contractors with an agency needs to be ended once and for all, and for all such workers to be treated as employees of the agencies, i.e., how things are in to all intents and purposes. Happier workers make for happier clients.

2.9.3. Travel Costs.

Travel costs to and from clients, as well as any travel costs occurring during the official care time, need to be factored in as part of a worker’s remuneration. Such costs should never be borne personally by the worker.

Similarly, enough time should be given to workers between jobs for a break and for travel to the next job.

3. What are the important outcomes?

  • Most of all, the dignity of the service-user be always uppermost. They need respect from the system as well as from their individual carers.
  • The service-user lives in a safe home (e.g, clean and tidy).
  • Their well-being be maintained – e.g., depending on client, cooked dinners, walks, shopping, etc.
  • In so far as is possible, that the independent living of the client is supported
  • Clients should be included as part of the home help service rather than an appendage to it. Using the principle of “Nothing about us without us”, and the obligations on the State under the Convention on the Rights of People with Disabilities, disabled people, through their representative organisations (also known as Disabled Persons Organisations), should be prioritised in all consultations on standards and policies in this area.
  • Need for an Independent evaluation of privatisation, not just from a cost-effectiveness standpoint, but also recognising that such services as provision of care is qualitatively different from the production or processing of widgets, so sectoral profit-margins are not the bottom line. The outsourcing of State services in the past twenty years should be intrinsic to such a review, as well as the associated higher regulation costs when there are multitude of private players vs. an accountable service provided by the State (e.g., as with the equivalent provision by local authorities in Britain).

By Gerry, Ed, Áine and Robbie (21 Dec 2021)

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No next stop audio announcements on 50% of the Dart fleet since 2017

Blind and partially sighted passengers rely on on-board audio announcements when travelling on trains, buses, and trams, etc., in order to know where we are, and in order to know what stop to get off at. Other passengers also find this useful, whether they are napping, reading an eBook, or new in town. However, if a visually impaired person gets off at the wrong stop, they are not only completely lost, but placed in a dangerous situation, literally with unexpected pitfalls and obstacles, and no knowledge of how to escape or find help. Even getting to the platform on the other side of the track in order to get the next train going in the other direction is extremely difficult to do if you are blind and unfamiliar with a station.

Many of us began noticing a high number of audio announcement faults on the Dart from 2017, and raised these with Iarnród Éireann, as well as the accessibility difficulties encountered in trying to identify the carriage vehicle id for subsequent investigation and repair.

The good news is that a new system will be installed by early 2023. The bad news is that it will have taken an incredible 6 years (2017-2023) to resolve.

VVI (Voice of Vision Impairment), is not only dismayed at the excessive delay in resolving the issue of no next stop announcements on 50% of the Dart fleet, but we also have serious concerns regarding the implications this has for other public transport modes, including bus and tram. There appears to be little regard for forward planning in terms of built-in obsolescence, future-proofing, and disability-proofing our public transport fleets so that they are safe and accessible for all passengers; but worst of all, there is no light at the end of the tunnel, in that such lack of foresight and planning appear to be endemic to the several statutory bodies dealing with Ireland’s public transport system.

Photo of Siemens (LHB) Dart and Toyyu Car Dart
Photo above of Siemens (LHB) Dart on the left and Toyyu Car Dart on the right.

To be or not to be, board the Siemens (LHB) Dart vehicle id 8115 on the left with audio announcements or the Tokyu Car Dart vehicle id 8621 on the right with no audio announcements.

Some background

The Dart is made up of 142 electrical multiple units (EMU), 74 of which were supplied by LHB in Germany, and went into service in 1984. The remainder were supplied by Tokyu Car in Japan, and went into service between 2001 and 2005.

The original German LHB Darts were subsequently refurbished by Siemens (which included a passenger information system) and went back to service in 2008/2009. The audio announcements on these units, thankfully, remain in working order.

However, the same cannot be said for the fleet of 68 Dart EMU ordered by Iarnród Éireann-Irish Rail from Tokyu car in Japan between 2000 and 2004. Divided into 3 classes (8500, 8510 and 8520), the bulk of these units entered service in 2004/2005, and these were the first Dart units to feature a passenger information system (PIS) with next stop audio announcements.

The passenger information system (PIS) equipment for the 8500 and 8510 class units was supplied by Vemisa, and the 8520 class units by Ikusi – both suppliers are still in business.

These systems were maintained by Quaestor in East Wall, Dublin.

Towards Replacement of passenger information system and manual announcements.

In 2019 – two years after the audio announcements began to disappear – Iarnród Éireann confirmed to VVI that it was seeking funding from the National Transport Authority (NTA) to replace the passenger information system on the 68 Tokyu Car Dart’s as they were life-expired and could not be repaired.

VVI suggested in the interim that Dart Drivers could make manual next stop and destination announcements until a new system was procured/installed.

Previously we highlighted Iarnród Éireann Drivers on the Cork to Cobh and Middleton lines making manual next stop announcements on their early 1990’s diesel commuter trains which don’t have an automated audio announcement system. We also highlighted Drivers on Intercity and commuter Trains making manual announcements when the audio announcement system was either out of order or when there were no Hosts or Customer Service Staff (CSO) on board.

Iarnród Éireann cited the significant number of stations on the Dart line (31 versus 11 on the Cork Commuter Routes), and mentioned the possibility of announcements only at hub stations, subject to agreement with Driver representatives. Two years later however, and four years since the audio announcements began to go quiet, no progress has been made.

Dept of Transport, Tourism & Sport Accessibility Consultative Committee Meetings.

The Department of Transport, Tourism & Sport (DTTAS) hold regular meetings of a “Accessibility Consultative Committee” and the minutes of these meetings are available online from 2018 to 2021.

While we don’t have access to the minutes from meetings in 2017, it is clear the Dart audio announcement (PIS) issue was on the agenda at previous meetings as early as 2017.

At the meeting on 28th of March, 2018, the accessibility update from the National Transport Authority refers to “Possible interim measures to address difficulties with audio/visual announcements on DART pending replacement of the existing system, e.g. an app – NTA to raise with Irish Rail.”

At a meeting on the 18th of September, 2019, the “DTTAS advised that 47% of the DART fleet requires an upgrade of its Passenger Information System and Irish Rail is developing a proposal on the necessary upgrade work for submission to the NTA for funding. Following a tender process, it is understood the work will take approximately 2 years to complete.”

At a meeting on the 22nd of Janury, 2020, “Dept of Transport, Tourism & Sport (DTTAS) Work Programme – Quarters 3 and 4 2019 (Action 8) DART Passenger Information System. Target is to award contract for 17×4 car sets in 2020, with a view to installation in 2021. This had previously been stated to be one of the key public transport projects for people with disabilities.”

Tender issued.

On March 15th, 2020, when funding was secured from the NTA, Iarnród Éireann issued a tender.

“…The existing 8500 EMU fleet are fitted with passenger information systems (PIS) equipment supplied by Vemisa (8500 and 8510) and Ikusi (8520). Both systems are now obsolescent and require to be replaced with modern, reliable and best in class systems. The new replacement systems will consistently and reliably provide accurate and timely information; provide good visibility/readability (displays) and deliver good intelligibility (audio)…”

Iarnród Éireann

Tender awarded.

On December 10th, 2020, Ikusi were awarded the contract to replace the passenger information system.

While the awarding of the contract is very welcome news, it was, however, long overdue, since 50% of the Dart fleet will have been operating with no audio announcement for 2017, 2018, 2019, 2020, 2021 and 2022 (6 years).

Questions that need to be Answered.

Why the excessive delay?

Could this happen again on a different fleet?

The LHB (Siemens) Darts, for example, use a passenger information system from Telvic.

Bus Éireann, Dublin Bus, Go-Ahead and Luas also have passenger information systems. Indeed, the original 3000 class Luas trams operating on the red line, for example, date back to 2003.

At least most of the equipment in Dublin Bus is 2014 and newer. The supplier, Innit, are pretty big in Germany, so hopefully they offer good support. But should we really be leaving such vital accessibility to chance?

We need to know if the audio announcement systems on any of these (LUAS, Dublin Bus, Bus Éireann, or other trains), are life-expired and if so, are there projects in place to replace them?

The current and urgent DART example shows up an issue whereby even if the NTA funded a replacement project tomorrow, between procurement, installation and commissioning, we are looking at a time frame of at least 2 years. How it has taken 6 years at Iarnród Éireann is an issue that needs to be investigated so that sucha delay does not happen again, with Iarnród Éireann, or with any other service-provider.

Where does the book stop? Was it an NTA funding issue?

Was it because the issue wasn’t one of the long term action minutes at the DTTAS Accessibility Consultative Committee meetings and therefore disappeared from scrutiny so to speak?

Either way, both the DTTAS and NTA were clearly aware of this and appear to have sat on it.

What we are requesting

  1. We would like some accountability in the form of an investigation to get to the bottom of this neglectful mess.
  2. We look for the assurance (with proof) that the same dangerous systematic situations are not about to befall other transport fleets.
  3. We look for an interim measure, such as manual driver announcements, even at hub stops, on the DART line until the broken half of the DART fleet is fixed in 2023.
  4. We request that certain low-tech fallback systems be introduced on fleets to mitigate against the loss of these essential audio announcement systems through fault or obsolescence, and we in VVI are here to fulfil our particular role as a DPO, under the Convention on the Rights of People with Disabilities, including our prioritisation in such consultations.
Photo of LHB Siemens Dart
Photo of LHB (Siemens) Dart EMU # 8140 with working audio announcement system
Audio announcements on Siemens (LHB) Dart journey from Pearse to Glenageary (3m24s.). 

Photo of Tokyu Car Dart
Photo of Tokyu Car Dart EMU # 8601 – audio announcement system not working (above).

No audio announcements on Tokyu Car Dart journey (8m24s).

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What is inclusion?

In the video below listen to Robbie Sinnott from Voice of Vision Impairment answer questions as part of Dublin City Council’s Inclusion and Integration Week, 2021. We have also included the full transcript at the bottom of the page.

We are not born disabled.
Many of us have impairments,
And because of this, we are often disabled by society
We are being disabled by prejudice
We are being disabled by bad design
We are being disabled by bad planning

So, while diversity is cause for celebration,
Being disabled is not.
Make disability history.

Be aware.
Know your rights.
Join us in VVI
info@vvi.ie

Full transcript

Dublin City Inclusion and Integration Week – Questions and Answers series

Inclusion and Integration Week, 2021

Question 1: What does integration mean for you?

Robbie: Integration is about being equal in humanity. Being disabled is not an identity. Being disabled is something that is done to a person by society, by attitudes, by design. So we really need to do away with disability because it is being disabled that causes disability is a social construct.

Question 2: What does social inclusion mean to you?

Robbie: Social inclusion means the disappearing of the barriers and obstacles that stop me from living exactly the same life as my sighted counterparts. Social inclusion would be good design, good planning. And it would be listening to the needs of people with a visual impairment through their DPO or through their representative organisation.

Question 3: What is the most positive aspect of inclusion and integration within Dublin City?

Robbie: There’s a great acceptance among most ordinary people of diversity and that’s not necessarily shared by the systems and institutions who like to box tick. But it’s certainly there among ordinary people, which is fantastic.

Question 4: How can Dublin improve its inclusion and integration in Dublin City?

Robbie: By basically doing what it’s told to; what Ireland has ratified; what it’s signed up to under the convention and the rights of people with disabilities. And by prioritising disabled persons organisations, representative organisations in their planning. And basically planners are there to plan not just for people like themselves. They’re there to plan for everybody. And my need to access my city is a human right to safely access the streets outside and around my home. That is a human right and it’s as equal as anybody else’s.

Question 5: Would you agree Dublin welcomes diversity? Why?

Robbie: Well I think Dubliners welcome diversity and their brilliant at it. Dublin City Council doesn’t necessarily welcome diversity. It has its own idea of diversity in a wallpaper sense. Yeah, it likes it, you know. In terms of colour or taste. Possibly. But when it comes to hard tax, when it comes to the things on the ground, for instance, making things accessible to disabled people, like accessible and safe streets for disabled people. They are not remotely interested in hearing us whatsoever. They have their own idea and it’s far from disability proofed and it’s far from safe. It’s very disabling. The attitude is disabling and their plans are disabling.