People of all ages with an intellectual disability are highly vulnerable to the effects of Covid-19, as disability services face a myriad of concerns in this crisis. Catherine Reilly reports
In recent weeks, intellectual disability services have started converting day centres into isolation units as part of their response to the Covid-19 pandemic.
The aim is to limit infections in residential centres and community homes by establishing dedicated isolation spaces in, for example, day service settings.
“It is a very challenged sector that are rising to support people as very best they can,” Ms Alison Harnett, Interim Manger at the National Federation of Voluntary Service Providers Supporting People with Intellectual Disability, told Medical Independent (MI).
However, a regulatory notice issued by HIQA on 31 March has caused much dismay in the sector, which considers resolution an urgent matter.
The notice requires services to register these isolation units as ‘designated centres’ within 28 days of opening, which services say would involve unworkable requirements. HIQA and Minister of State for Disability Issues Finian McGrath appear to be in disagreement on the issue (see panel below).
The disability sector is facing many challenges. These include lack of personal protective equipment (PPE), funding and staff shortfalls. A key concern is that residential settings may become a significant source of clusters if these matters are not quickly addressed, as has happened in nursing homes.
MI understands the disability sector has communicated these urgent matters via the vulnerable persons subgroup of the national public health emergency team.
Speaking to MI on 2 April, Minister McGrath said he was “particularly concerned” about the potential for outbreaks in residential settings and that he had raised the issue at cabinet two weeks previously.
Thirteen per cent of the population have some form of disability and within this group,“we have a lot of people with respiratory and health issues”.
“We have to be very, very careful about the residential homes for people with a disability. We have over 2,000 people in the long-term residential [institutional setting] homes and that could be an issue.” There was “a lot of planning going on in the background”, he said.
Approximately 23,000 people attend day services (including those with a physical disability). The Minister said these services are staying in regular contact with service-users and families by telephone and other means.
An undisclosed number of emergency residential places are held in reserve (for example, for situations where a family carer is unwell). “If it hits a high figure we are in trouble, there is no point in saying we are not. But we do have a set of emergency residential places for those situations.”
He acknowledged there are many pressing issues and needs, including access to PPE and training.
People with an intellectual disability of all ages are particularly vulnerable to adverse outcomes associated with Covid-19, warns Prof Mary McCarron, Professor of Ageing and Intellectual Disability at the Trinity Centre for Ageing and Intellectual Disability.
There is very high prevalence of multimorbidity across the entire adult life course, according to data from the intellectual disability supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA, 2017). Multimorbidity starts earlier and increases with age (63 per cent in those aged 40–49 years; 72 per cent in those aged 50–65 years; and 86 per cent in those aged 65 years and older).
Older people with Down syndrome are particularly at risk with many having pre-existing cardiovascular and respiratory problems (see panel below).
Other risks include the fact that concepts such as social distancing will be difficult for some people with an intellectual disability to understand and adhere to.
Prof McCarron said the disability and social care services were facing multiple challenges, including lack of availability of PPE.
“I hope the supplies we are getting from China, that we have a way of ensuring that they also reach the ID [intellectual disability] services. That is going to be really important because from speaking with the ID services across the country this is one of the biggest challenges at the moment,” she told MI on 31 March.
She stressed the need to rapidly scale-up and ensure the relevant skills are in place in the healthcare and social care systems.
This would include staff being trained to recognise the symptoms of Covid-19 and signs of deterioration. Currently there is variability in access to nursing expertise at residential centres for people with disabilities.
“In some centres there may be [nursing staff], but in other centres there may not be,” Prof McCarron told MI. “In those centres where there is not, it is a particular challenge for them, in trying to upskill the staff and bring in the nursing expertise that is going to be required to support patients if they get [Covid-19] and they are not deemed appropriate to transfer to the acute system.”
Ireland has specialist nurses in intellectual disability, which is an advantage, but this resource is very stretched.
Prof McCarron also acknowledged the “very stressful situation for family care givers who are trying to support their family member, and we need to see what supports we can offer families and be prepared that [if a] family carer gets Covid-19 that a system of supports are available.”
She urged that testing facilities are made as accessible as possible and staff have the required communication skills.
In addition, test results for people with an intellectual disability should be made available “in as timely a manner as possible” given difficulties they may have in understanding the need for self-isolation, potential emotional upset, and non-compliance.
As of 31 March, the priority symptomatic groups for testing were expanded to include staff and residents of nursing homes “and other residential care settings”.
Admission to hospital without a family member or carer will be a huge departure from standard practice.
In acute care settings, Prof McCarron said telecommunications should be available to link people to family members or carers. However, she noted IDS TILDA data which showed many people with an intellectual disability had limited technology skills and needed significant support to use these forms of communication.
“Yes they are important means and resources that we should be using but also recognising the fact that for people with ID, these may be challenging for them to use.”
In the UK, there was recent controversy when the National Institute for Health and Care Excellence (NICE) published guidance on identifying patients who need critical care during the Covid-19 pandemic. This guidance included use of the clinical frailty scale to determine suitability for critical care. Health authorities have since clarified that this scale has not been validated for people with learning disabilities, and should not be used for this group.
The Department of Health has published an ‘Ethical Framework for Decision-Making in a Pandemic’. According to the framework, everybody will be cared for once the healthcare system reaches capacity, but they may not all have the same access to different levels of medical intervention.
Decisions on who should be prioritised to receive intervention should be based on the “underlying rationale of maximising the benefit that can be gained from the limited amount of resources available and giving due attention to the fair distribution of benefits and burdens”.
The guidance from the Department is “certainly to be welcomed”, according to Prof McCarron. But there are anxieties for a population historically subjected to attitudinal bias and prejudice “that has devalued their lives and reduced their timely access to appropriate healthcare”.
“Certainly there will be anxiety and there has been anxiety in terms of … the lack of understanding perhaps of underlying intellectual disability and various value systems perhaps, that may result in inequitable access to people.”
“We have to understand we may have somebody with an intellectual disability who prior to getting Covid-19 may never have washed, dressed, or shopped independently, but would have been perceived as physically well and having a good quality of life and were enjoying their lives. So the concern would be if we were to utilise the likes of the clinical frailty scale that it could automatically put people into the frail category. So we are cautioning against the use of that.
“It happened in the UK [guidance] and concern was expressed in respect to that. I think the most important thing is we take each person on a case by case basis and we look at whether this person can benefit from this intervention and we have got to consider their pre-morbid health status, their will and preference if we know it, and their multiple morbidities.
“What we have to understand as well is survival rates are poor [for people admitted to ICU] and particularly poor for people who are older, frailer and with multiple morbidities. So we have to make sure we are not subjecting people with an intellectual disability to procedures where their outcome is likely to be very poor.”
Mr Mark O’Connor, Community Engagement Officer at Inclusion Ireland, echoed many of the issues raised by Prof McCarron.
There was concern about what happens to a person with an intellectual disability if their family carer becomes unwell, he told MI on 31 March.
“The other worry is if the person with the intellectual disability has to go to hospital. It is upsetting enough getting the illness, but then to be maybe taken away from the family, the routine, strange people wearing strange clothes and masks…”
At a minimum, Inclusion Ireland would like to see appropriate communication channels being established so that the person in hospital can see their family or carer via apps.
Lack of PPE is a big problem, particularly when caring for people in self-isolation.
“Some of these families are already getting personal protective equipment because of the caring role – it might involve the use of gloves and gowns already, but those are in extremely short supply. The PPE for family members in those situations, especially for the medically frail individual, is something that is getting reported to us as a great worry.”
Strict restrictions on movement are particularly difficult for people with very high support needs. For sensory reasons they may have a great need to be outside, according to Mr O’Connor.
“If those people are confined to the home for vast portions of the day it can have a knock on effect. We are well aware that these families are often told if there is an incident in the home, phone 999 – those services are to the pin of their collar at the moment.
“A couple of the preventatives would be if there was remote behavioral, speech and language or occupational therapy support into the families – we have asked the HSE for this and we don’t know if it is going to be forthcoming.
“The other thing is if those families were able to get some sort of permit or exemption … even to access just a walk or a run down the beach with their dog or in the forests or so forth, that might be more than 2km away from their home, just to get out to these sensory-friendly and wide spaces where they can get out and satisfy their sensory needs.”
He also urged “creative thinking” on ensuring people’s day-to-day needs are met.
“There are quite a few folks with high support needs who are accessing day services, they are at home now. We are led to believe some people are getting a minimal amount of support, maybe being taken out for a walk and so forth, but the day services are gone and the residential services are pretty much in lockdown.”
Options could include virtual entertainment and activities.
Infection control advice
Providers are informing HIQA about “challenges and concerns” including managing an increased risk of infection in congregated settings.
“Often residents who live in these settings have lived there for many years, are elderly and many have underlying health conditions,” said HIQA’s spokesperson.
Another issue is the availability of isolation facilities should a person with a disability in a community-based home become ill.
“Most of those houses do not have sufficient space for isolation and alternative places will be required.”
HIQA is not currently undertaking inspection activity. However,it is monitoring centres “closely” through regular contact and reviewing information such as statutory notifications.
“Should we identify issues of risk, we may undertake an inspection to ensure the safety of residents.”
HIQA has established an infection control advice hub for residential social care services, which will provide assistance and advice to centres in terms of assessing their infection control arrangements.
“We are also working with Government in the preparation of emergency legislation to ensure that vulnerable people using services are safeguarded and protected,” said the spokesperson on 31 March.
In regard to this legislation, HIQA was asked for advice on how key safeguards in health and social care services could be maintained during the emergency. “We provided advice, for example, on the establishment and rapid registration of new services, and on maintaining safeguards when services are employing new staff (ie, Garda vetting).”
Meanwhile, according to Ms Harnett at the National Federation, a positive development amid the crisis is the “unprecedented amount of collaboration and really good working between the HSE, disability services and the umbrella groups. We are involved with them in developing specific guidance for the disability sector.
“But the amount of guidance coming out, in itself, is challenging for organisations to absorb and ensure they are in place on the ground.”
HIQA regulatory notice on new isolation units causes alarm
The innovation of creating isolation units in day centres, which are closed under State control measures, has met with a level of regulation that has dismayed disability services.
These units aim to create extra capacity for isolation, where space is limited in residential centres and community-based homes.
A senior disability service manager told MI “we had empty day services and felt they should be used for the cause, if needed. We have no intention of keeping it going as a residential service, it is just an emergency response.”
However, at press time, HIQA had mandated that services must apply for these units to become ‘designated centres’ within 28 days of opening. The Authority regulates residential centres for people with disabilities, although it does not yet have jurisdiction over day services.
On 31 March, the Authority’s Chief Inspector of Social Services Ms Mary Dunnion issued a regulatory notice that acknowledged there “may be situations during this health emergency, where for the safety of residents, a provider may consider opening an unregistered designated centre”.
“While the opening of an unregistered designated centre contravenes the Health Act, 2007 as amended, I recognise that this is an unprecedented situation in the Irish health and social care sector.”
These units can open but applications for designated centre status must be made within 28 days of opening.
Within the sector, many consider that such registration requirements will create extra footfall in the units, increasing infection risk, and over burden staff who are already under major pressure. Many in the sector feel that meeting all of the legally-required standards will be impossible in the current crisis.
Speaking to MI on 3 April, Ms Alison Harnett, Interim Manager at the National Federation of Voluntary Service Providers Supporting People with Intellectual Disability, commented: “I know that HIQA would like to see everyone supported in the best way possible and they are working within the framework of the law. But we are working within our constraints and we really feel the setting up of these units is very important to the life and health of the people we support. So it is an urgent issue to be worked through.”
She said it was “a disappointment” that emergency legislation was not introduced to address the situation.
In a statement to MI on 2 April, HIQA said one of the purposes of regulation is to ensure people with disabilities are accommodated in safe, secure and comfortable centres. “At a time such as this, these safeguards are even more important.”
The Chief Inspector of Social Services had taken action to reduce the regulatory and administrative burden on providers where possible, they said.
“For example, new arrangements have been put in place to enable providers to open additional centres in response to emergencies, the process for extending the size of centres has been simplified, and the Chief Inspector has provided guidance on minimum requirements for the submission of notifications. HIQA will continue to look at ways of easing the administrative burden on providers within the current legal requirements.”
However, HIQA’s notice was not supported by Minister McGrath, who told MI that regulatory “flexibility” is needed in a “national crisis”.
People with Down syndrome ‘may not show typical symptoms’
It is not yet known if people with Down syndrome are significantly more vulnerable to contracting Covid-19. However, they are vulnerable to other respiratory viruses such as respiratory syncytial virus (RSV), according to Down Syndrome Ireland.
“We do know that they may be less able to tell us when they are sick, and that they may not show typical symptoms,” Ms Nicola Hart, Head of Member Services, Down Syndrome Ireland, informed MI on 2 April.
People with Down syndrome may have abnormal temperature regulation and may also experience difficulty recognising and communicating that they are unwell.
Following recent correspondence from HSE Chief Clinical Officer Dr Colm Henry, Down Syndrome Ireland has reassured families “ there is an awareness of difficulties and differences” and GPs are able “to consider referral for testing and treatment even if typical symptoms are not all present.”
According to the organisation, Dr Henry advised that a GP will be able to refer individuals for Covid-19 testing if they fit the case definition or if they clinically judge that specific conditions pertaining to the individual case are such that fever may be masked and there is evidence of an acute respiratory infection.
If people with Down syndrome do become ill, they are likely to be extremely vulnerable to respiratory complications, noted Ms Hart.
“When faced with a new disease that has a specific impact on the lungs, we believe that families are right to be concerned and to seek active management.”
The organisation fully support prioritisation of healthcare staff for Covid-19 testing and considers family carers also provide healthcare in many instances. As soon as there is capacity, “we would like to see them have access to rapid testing.”
Supports need to be in place to ensure prompt access to emergency respite care in safe environments, it said.
It also advised that care workers may not all have the equipment or training to prevent contagion in disability services. “This needs to be remedied immediately for the protection of the many vulnerable people in these settings.”