Voice of Vision Impairment, November 2021
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?
- What would make things better for people using home support services?
- 2.1 Disability awareness training for all Home Services staff
- 2.1.1. Examples for workers regarding visual impairment
- 2.1.2. Listening
- 2.1.3. Time-keeping
- 2.1.4. Hygiene and First Aid training
- 2.2. Regulation and Regular Monitoring
- 2.2.1. Regulating the Sector
- 2.2.2. Matching Workers and Clients
- 2.2.3. Direct Line between management and service-user
- 2.2.4. Accessible Modes and Formats of Communication
- 2.2.5. Written Record
- 2.2.6. Anti-Bullying Awareness by Management
- 2.2.7. A Red Flag Mechanism
- 2.2.8. External Reviews – Independent Monitoring of Standards
- 2.2.9. Moving On
- 2.3. Other Communications
- 2.3.1. Workers’ Holidays, Illness, replacements and trainees
- 2.3.2. Respecting Close Connections between Workers and Clients
- 2.4. Insurance
- 2.5. Sufficient Time Guaranteed
- 2.6. Specific Designated Workers, and no-one else.
- 2.7. Need for Comprehensive System
- 2.8. Customer Services Charter
- 2.9. Better Pay and Conditions for Workers
- 3. What are the important outcomes?
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.
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.
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”.
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.
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)