“YOU HAVE TO take into consideration people before profit.” This is the guiding principle that inspired Margaret Auma and the Great Care Co-op new model of care in the home.
Issues with pay, transport and uncertainty over hours are prevalent in the private sector, according to Auma, one of the co-op’s board members as well as a home carer. She previously worked for a private home care provider. “They can give you three hours a week and you can’t live on that.”
The Great Care Co-op is a migrant-led and carer-owned home care cooperative which hopes to tackle these issues by setting up local groups of carers who work near where they live. They were developed with the help of the Migrant Rights Centre Ireland (MRCI) and launched a pilot in Dun Laoghaire last month.
We give [carers] good pay and a pension which the agencies don’t do. We want people who live locally to work in an area for us.
Auma hopes that the new co-op model “takes off and can make a difference”, adding that there is too much of a focus on profits in the sector. She wants to show “other home care companies and agencies how things should be done differently and how they should mind carers and clients”.
This new co-operative model is trying to buck the trend towards private for-profit providers which often offer poorer pay and conditions. Many, including the MRCI, are calling for regulation of the sector in order to improve conditions for workers.
Over the past number of weeks, Noteworthy has taken a deep dive into the home care sector. In the third and final part of this investigation, we examine the impact that lack of regulation is having on home care and discover what’s in store for the future of the sector. We examine how:
In the first part of this investigation, we showed that many carers took a pay hit and felt unsupported by their employers during the pandemic. In part two, we examined the pay and conditions of these vital frontline workers, as well as the profits made by providers
‘Thrown in the deep end’
The negative impact of the lack of regulation on the sector featured in the first two parts of this investigation and was blamed for poor pay and conditions of carers and healthcare assistants as well as some issues that arose during the pandemic.
Another major consequence of the regulation absence is that there is no legal requirement for HCAs and carers outside of the public sector to have full formal training.
Part-qualified carers are currently allowed to work in private and nonprofit home care providers, even for HSE contract work. This is in spite of the fact that the healthcare assistant role in the HSE requires candidates to hold the relevant QQI level 5 qualification, unless they have an equivalent healthcare qualification or are currently employed in the role.
When asked about the difference in qualifications between private agencies and the HSE, a spokesperson for the HSE stated: “Qualification requirements for home support workers employed by private agencies is detailed in tender arrangements”.
A recent study conducted by UCD as well as HCA and Carers Ireland found:
Within the private sector many do not continue their training to attain a full level 5 award which leads to gaps in knowledge and practice.
To remedy this, “urgent regulation throughout all sectors and settings” was recommended.
This study also found that 39% of the carers and HCAs were “being asked to do tasks against their conscience” and 30% agreed “that they were asked by management to do tasks that were morally wrong”.
Linda Byrne, home carer in the private sector, said there is a lack of support from private home care providers. She said that some home carers are “thrown in the deep end” without even doing the course “and then they’re terrified”. Her first day was scary as she “had no experience and never looked after anybody like that before”.
A HSE review of the role and function of HCAs in 2018 identified that there was “variable standards of training for HCAs, very little continuing and in-service education, lack of governance/oversight for HCAs in community, no parameters of practice set, confused accountability and role confusion with other related grades”.
It also stated that “all of these contribute to risks and impact negatively on patient safety”.
Anyone can call themselves a healthcare assistant
Even though many carers are fully qualified, “there is no register or regulation” and their “title is not protected”, explained Marie Butler, healthcare assistants’ sector organiser for SIPTU.
This means that anyone can call themselves a HCA, unlike in the nursing or doctor profession.
The 2018 HSE review of HCAs stated that because there is no national register for HCAs, there is “no knowledge on numbers trained [or] employed, making workforce planning nearly impossible”.
Carers and healthcare assistants across all the sectors we spoke to were largely supportive of a register for the profession.
A registry should improve the conditions of those working in the sector, according to Allison Metcalfe of HCA and Carers Ireland. “You should be rewarded as you get extra qualifications, until you get your full qualification, and that’s what a registry would bring.”
Brian Rusk, who works as a healthcare assistant in a private nursing home, argued that it is essential to ensure quality of care and encourage continuous professional development. “If a carer was to abuse a resident in a home or hospital setting, there’s nothing to stop them setting up at another nursing home.”
Lack of resolution of these big ticket items has been “driving the confusion and deterioration of workers rights”, according to Butler of SIPTU. “If these were resolved, it would permeate down and resolve workers rights issues as well.”
There are thousands of support grade workers in the community providing care to very vulnerable people and there is no regulation, no registration and there doesn’t appear to be any Department of Health policy around it.
Tender process needs an ‘overhaul’
Another problem in home care that needs to be resolved is the HSE tender process, according to MRCI’s Aoife Smith, who is also the director of the Great Care Co-op.
Choice is needed as “it’s not a one-size-fits-all model”, said Smith. Private companies are going to want to keep “the status quo so they can maintain their hold on the market”, but not-for-profits can “offer something else and be a counter voice”.
Another home care model that does not fit into the current tendering system is the online platform, Home Care Direct, which enables people to employ carers through the site. Carers set their own rates, hours and have full control, explained founder Michael Harty.
We are trying to make caring a more attractive career and empower carers to be able to work directly with families.
For HSE-funded home care, “you’ve got to use the limited list of approved providers”, explained Harty. He feels that this needs to be expanded.
In the UK, local councils provide personal care budgets, which are means tested, to people who need help to pay for care. The council pays this money directly to the person in need of care, or a nominated third party, so they can employ their own care worker directly or through a care provider as well as buy equipment and other supports.
Making home care a statutory right
The biggest change expected in the home care sector in the near future will be the introduction of a statutory home care scheme, but there isn’t consensus about the way this should be implemented.
“Progressing the development of a statutory scheme for the financing and regulation of home support services is a key priority for the Department and of the new Programme for Government,” according to a spokesperson for the HSE.
The Department of Health stated that the original commitment by Sláintecare for the establishment of the scheme was 2021 but “progress on the development of the scheme… has been impacted by the ongoing work and diversion of resources as part of the response to Covid-19”. It is however “committed to bringing forward this work as a priority”.
Instead of separate systems, Family Carers Ireland suggest the introduction of a more broad-ranging entitlement to long-term care. This would involve “a needs assessment of the cared-for person and the carer”, explained Catherine Cox, head of communications and carer engagement at the organisation.
This would include supports such as respite for the carer, equipment needed for safe care as well as provision of home care. If it’s a situation where staying at home is not possible, “then they would look at the other options such as nursing homes or long-term care”.
This is similar to what Mervyn Taylor, chief executive of Sage Advocacy, is calling for. This advocacy service supports vulnerable adults and is against a home care scheme being in a separate silo from the nursing home system. “We think all that will do is consolidate the position of the nursing home but we need to bias the system towards care in the home.”
A Commission on Care was promised in the Programme for Government which will ‘assess how we care for older people and examine alternatives to meet the diverse needs of our older citizens’. That is “one possible way where they could look at new models of care, including a single care model in line with what Sláintecare recommended”, added Taylor.
Liam O’Sullivan, chief executive of Care Alliance Ireland, blamed a lack of political will for lack of progress to date. “Home care is more complicated to organise,” he explained.
“The sector should move a lot more quickly so people don’t fall into nursing homes by default.” In the current system “it’s almost easier to say that people are suitable for nursing homes”.
In a report last year, the Joint Committee on Health recommended that legislation underpinning the provision of home care be enacted and that “appropriate resources are provided to enable” this to happen by next year.
Ireland is ‘behind the curve’
The same report by the Committee “agreed on a requirement for regulation”. Almost everyone that Noteworthy spoke to said that this should be one of top priorities for the Government.
Home carer Laura* told Noteworthy that lack of regulation means that “private home care agencies just make up the rules as they go along and are not held to account by anybody.” This compounds issues such as low pay, unqualified carers working and poor communication in the sector, she added.
For the last seven years, the Health Information and Quality Authority (HIQA) has been calling for specific regulation of home care, according to its chief executive Phelim Quinn.
People in receipt of home care services are as vulnerable, if not more vulnerable, than people residing within long-term residential care.
Quinn said that “Ireland is very much behind the curve in terms of regulation of home care” compared to other European countries and the UK which have been “regulated for a significant period of time”. He cited Northern Ireland which has had regulation in this area for over a decade.
HIQA was lined up to be established as a regulator in 2016 but there is still no mechanism for oversight of home care services. A bill to provide for regulation of home care providers and give additional powers to HIQA was introduced by then Senator Colm Burke and debated in the Seanad that year but it did not proceed any further and lapsed with the dissolution of the last Government.
Two weeks ago, Burke, who is now a TD, introduced an almost identical bill to the Dáil and it can now proceed to be debated. This bill includes sections on assessment of needs, training requirements, accessible complaints procedures, protection from abuse as well as handling of money and property of the care recipient.
When speaking in the Dáil, Burke said that in 2011 a Law Reform Commission report recommended that a legislative framework be put in place relating to people who provide home care as well as adequate regulation.
Home care regulations have to be developed as part of the statutory home care scheme. In the last few months, the Department of Health has asked HIQA to develop national standards for home care. Quinn said they will be “starting that process relatively quickly”.
Regulation does not mean that inspectors will be arriving on the doorsteps of people receiving care. Instead, it involves “interaction between a regulatory body, such as HIQA, and the home care provider, to make sure that policies, procedures and other controls are in place”, explained Quinn.
Rather than having regulations for just home care and residential care, “regulation on the entire continuum” is needed “from the point of social care right through to long-term residential care”, according to Quinn, as “some services fall between the cracks”.
It’s also in line with Sláintecare as it is trying to promote a care pathway for older people. You would regulate along that pathway as opposed to regulation in sections. The regulatory framework would match the service model in place.
Policy needed to help smaller providers
However, some have concern over the introduction of over burdensome regulation and the impact it might have on smaller providers.
Home Care Direct’s Harty is concerned that if a statutory right to home care and regulation comes in, that’s going to “make it even more lucrative for providers of home care”.
At the moment, it is budget-led, but if a statutory home care is introduced, then the Government is underpinning payments, he explained. “That’s hugely attractive for investment funds” and other corporate businesses.
If you want to ensure that more of those funds go to carers rather than the corporate bottom line, you have to bring in specific policies to enable that. Otherwise, we’re just going to exacerbate the problem.
Harty suggested that by providing choices such as social enterprises, local carers working directly with families, carer co-ops, “it increases the chances of carers getting more money”.
In part two of our investigation, Noteworthy found that the top three home care companies who received over €110 million between them from the HSE last year, are owned by companies based in Switzerland, the United States and Belgium.
Over half of the members of the representative body for private for-profit providers, Home and Community Care Ireland (HCCI), are SMEs. Joseph Musgrave, its chief executive, said he talks to providers all the time who are worried about regulation.
“It needs to be proportionate and it needs to be robust,” he said. However, he is looking for a lead-in period so that providers can have “a roadmap to compliance”.
Sage Advocay’s Taylor is predicting that “regulation will boost the large private provider”. This is due to the high cost involved in regulation which will drive out competition, he explained.
“The call for regulation should be looked at with a skeptical eye.” Taylor believed that there is a need for regulation because there are some reasons for concern in the sector but the dominance of large franchise providers also has to be considered.
HIQA’s Quinn acknowledged that the introduction of regulation could be problematic for some in the sector, such as smaller community-based home care providers. He said that this occurred when regulations for disability services were introduced, as “some providers felt that they didn’t have the capability or capacity to meet the standards or regulations”.
A 120% increase predicted
The home care sector had a lower number of coronavirus outbreaks and cases compared to the residential care sector, including nursing homes. This had led those in the sector to predict further growth in home care in the coming years.
One such forecaster is Cox of Family Carers Ireland who feels that reduced capacity due to social distancing in hospitals and nursing homes as well as people removing family members from nursing home care due to concerns about Covid-19, will increase the number of people needing home care. She added:
This will only add to the already overburdened home care service.
Because of this, Family Carers Ireland are calling on an additional €123 million for home care supports as well as the establishment of an integrated statutory scheme for the provision of home and long-term care.
Currently, there is a statutory entitlement to nursing home care, under the Fair Deal scheme, but there is no such entitlement to home care. Access to the current service is based on assessment of the person’s needs by the HSE.
The Government predicts the demand in home care will rise due to Ireland’s ageing population as the majority of home care here is provided to people over 65 years. A capacity review by the Department of Health indicated a 120% increase in home care provision over the period 2017 to 2031.
However, current demand does not meet supply, with around 6,000 people on the waiting list for home support services, according to the HSE.
No opening up of permits for carers ‘at this time’
One issue that needs to be addressed in order to accommodate this growth is a labour shortage in the sector. “Recruitment and retention has been the number one challenge for the home care sector, with pay and conditions the other,” MRCI’s Aoife Smith explained.
These entities are linked together, according to Smith. This has not been helped by the closure of the work permit system over a decade ago for non-EU workers to enter care and domestic work “despite population ageing and increased demand in recent years”.
In a submission to the Government last November on employment permits, the HCCI estimated “that the home care sector would require an additional 6,000 healthcare assistants (HCAs) among the HSE and HCCI members in 2020 alone”. It called on HCAs to be placed on the Critical Skills List and to be removed from the Ineligible Occupations List.
In a statement to Noteworthy, the Department of Business, Enterprise and Innovation said that healthcare assistants would not be removed from the ineligible occupation list as part of the review which is currently underway but it may “revisit the issue at a later date”.
An opportunity for change
So what does the sector need to do to cope with this increased demand and a potential introduction of a statutory scheme? Change. That’s the common consensus that emerges when talking to carer and home care organisations.
Almost everyone within the sector that Noteworthy spoke to feels that given the impact of the pandemic on nursing homes as well as the movement by the HSE towards community care, this is the perfect opportunity to improve the sector for carers, those receiving care and providers.
“There is a huge appetite for change” at a Department of Health level, according to HCCI’s Musgrave. “There’s a recognition that we really need to get our skates on to move things forward.” However, having not heard anything on home care from the new Ministers or the Taoiseach, he isn’t sure whether to be optimistic or pessimistic about future progress in the sector.
Metcalfe of HCA and Carers Ireland had hoped for more progress to date. “Now is the time that Sláintecare are working towards regulation. Now is the time to make changes.”
*Names have been changed due to requested anonymity
The other two parts of this investigation are out now. Part one revealed how home carers became the forgotten frontline workers of the pandemic. Part two examined the pay and conditions of these vital workers, as well as the profits made by home care providers.
This investigation was carried out by Maria Delaney of Noteworthy. It was proposed and funded by you, our readers, as well as with support from the Noteworthy general fund.
Due to the volume of issues raised by carers about the home care sector when they answered our call-out, we decided to expand the investigation into a three-part series. If you would like to help towards the cost of this additional work, please support the general fund here.
Noteworthy is the investigative journalism platform from TheJournal.ie. You can support our work by helping to fund one of our other investigation proposals or submitting an idea for a story. Click here to find out more >>