Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750337866.pdf (Ireland)
Trinity Centre for Ageing and Intellectual Disability Impact of COVID-19 on people with intellectual disabilities A submission to the Special Committee on COVID-19 Response Professor Mary McCarron, Director, Trinity Centre for Ageing and Intellectual Disability June 2020 About Prof Mary McCarron Mary McCarron, PhD, MA, RNID, RGN, BNS.

F.T.C.D is Professor of Ageing and Intellectual Disability and Director of the Trinity Centre for Ageing and Intellectual Disability.
She has held many senior leadership roles with Trinity College Dublin including Head of the School of Nursing and Midwifery from 2009-2011 and has served on the Senior Management Executive of the University from 2011-2019 as Dean of the Faculty of Health Sciences.

Professor McCarron is a committed ageing research leader and an international expert in the fields of intellectual disability & ageing, dementia, and end-of-life care.
She is the founder and Principal Investigator for the first ever Longitudinal Comparative Study on Ageing in Persons with Intellectual Disability (IDS-TILDA) to be conducted in Ireland or internationally.

She also leads a large longitudinal study on dementia in people with Down syndrome spanning over 25 years.

She has extensive clinical experience in the field of Intellectual Disability and is Policy and Services Advisor on dementia to the Daughters of Charity Disability Support Service.
Her award-winning approaches on environmental design and technology innovations are improving quality of life for people across the continuum of dementia.

As its Executive Director, Professor McCarron is leading the establishment of a National Memory Service for people with an Intellectual Disability.

She has been recognised internationally for PPI and her translational approaches, and, in 2019, was awarded the inaugural HRB impact Award.
She holds a visiting Professorship to Duke University and has over 150 publications.

SCC19R-R-0391 D 1.

INTRODUCTION This submission on the lives of people ageing with an intellectual disability (ID) does not call for new policies or new strategies; it identifies the strengths that exist within the current policy landscape and calls for the accelerated implementation of what has already been agreed, within the context of COVID-19.
The submission draws on: a) the wide-ranging data that we have gathered over the past twelve years on Ireland's ID population through IDS-TILDA (Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing); and b) listening to people ageing with ID themselves about what they would like to see as the ID sector attempts to, in the words of the UN, ‘build back better’.

2 SCC19R-R-0391 D Impact of COVID-19 on people with intellectual disabilities 2.
IDS-TILDA and People Ageing with ID Throughout the pandemic, it has been stated that people with ID are a vulnerable population.

This is true in that many are at an elevated risk of morbidity and death due to underlying health conditions.

Having ID in and of itself, however, has not been identified as a risk for COVID-19, and caution is needed not to introduce bias or stigma.
Concern was expressed at the beginning of the pandemic response, that disability might be used as a criterion upon which to make clinical decisions about treatment.

Thankfully, the HSE clinical guidance and the Dept of Health principles that were issued directly addressed that disability alone should not be a criterion for treatment decisions.
2.1 Data from IDS-TILDA IDS-TILDA puts Ireland in the privileged position of having in-depth data on the health and wellbeing of people over the age of 40 who have ID, which it has been gathering over the past twelve years.

This overall population is approx.

10,500 people and has been increasing as longevity increases.
While the study does not, as yet, have data on COVID-19, what has been documented is that multimorbidity (co-occurring diseases) was found in 71% of the older ID population in Ireland, higher than rates reported in the general older population (59%).

It starts earlier and increases with age.

Multimorbidity has placed people with ID at heightened risk for COVID-19.

Multimorbidity Extremely high prevalence of multimorbidity in adults with ID across the entire adult lifecourse.
IDS-TILDA identified multimorbidity for 71% of the older ID population in Ireland.

This is higher than rates reported in the general older population and it starts at an earlier age (59% for the general older population).

Mulitmorbidity starts earlier and increased with age: • 63% in those aged 40–49 years to • 72% in those aged 50–65 years and • 86% in those aged 65 years and older Multimorbidity is highest among those with more severe levels of ID.
Having ≥4 chronic conditions was associated with Down syndrome.

Older people with Down syndrome are particularly at risk, many having pre-existing cardiovascular and respiratory problems, confounded by a 55% risk of dementia in those age 55+ increasing to 88% in those age 65 years and older Women with ID are at a higher risk of multimorbidity than men.
3 SCC19R-R-0391 D While the pandemic has been a difficult and distressing time for many in society, people ageing with ID are already much more likely to be dealing with an emotional or mental health condition.

COVID-19 and the uncertainty and fear surrounding it, undoubtedly created greater strain on that section of the population.
Psychological risks Mental health concerns are more significant for older people with ID: • Over half (52%) reported a diagnosis of an emotional or mental health condition • 15% of this population have anxiety • Comparable rate of depression was double that of the general population (10% versus 5%) Older people with ID have smaller social networks and fewer social supports than the general population.
Disruption to their routines and contacts due to COVID-19 places them at greater risk for social isolation and loneliness, potentially leading to poorer mental health outcomes.

For those living at home with an ageing parent, who are themselves among the highest COVID-19 risk groups, this may have proved a very anxious time.
Social Isolation Older people with ID have smaller social networks and fewer social supports than the general population: • They do not have partners or children of their own to support them at times of crisis • Many who live at home with family co-reside with ageing parent carers, who themselves are among the higher risk groups for COVID-19 Restrictions on visiting and visitors will often not be understood, increasing risk and a sense of social isolation.
Much has been done publicly over the last few months to deliver clear public information campaigns that inform and reassure.

Low levels of literacy and numeracy among this population, however, raised concern that the campaigns were not reaching people with ID.

TCAID, along with a number of the larger ID services, responded by developing easy-read information with pictures that are appropriate for people with ID.
Many people ageing with ID will also need increased support to understand and adhere to guidelines on handwashing or physical distancing.

Accessible information Many older people with ID have great difficulty accessing and understanding information about risks and prevention advice: • 88% cannot access to the internet.
• 75% have difficulty using a computer • Over 80% have low levels of literacy and numeracy 4 SCC19R-R-0391 D Impact of COVID-19 on people with intellectual disabilities 2.2 Responding to COVID-19 in people with ID There was an immediate need to create a forum where COVID-19 issues could be discussed, and guidance could be shared on best approaches to the disease.
Trinity Centre for Ageing and Intellectual Disability (TCAID) was a critical partner in a national consortium running no- cost webinars from the beginning of April about COVID-19, to help health and social care staff within ID services respond to the pandemic.

That partnership included the All-Ireland Institute of Hospice and Palliative Care, the Daughters of Charity Disability Support Service, St Francis Hospice and Tallaght University Hospital.
In total, the webinars attracted more than 5,000 online participants.

They provided a forum using key experts to assist the ID community to understand and manage critical issues such as advanced care planning, perspectives on hospitalisation, infection control, maintaining wellbeing for those isolating or cocooning and recognising how difficult this is likely to be for people with ID due to the prevalence of mental health problems and anxiety reported above.
One example of particular concern expressed during the webinars was the possibility of a person with ID being admitted to hospital in isolation without access to either a support worker or a family member.

The reality that someone with ID (or indeed anyone) might die alone in a strange setting was unbearable to staff and family caregivers.
With agencies such as the HSE and HIQA working with TCAID on this response, the value of online training and forums were newly understood and valued, and these mechanisms should be more formally established and supported for the future.

2.3 Listening to people with ID What also emerged from speaking to people with ID who were restricted within their homes was a resilience and an ingenuity in adapting to the pandemic.
Matched with this was their support staff’s ability to create alternative activities and life-enhancing pursuits.

What also emerged is that, having experienced another type of life, that many people with ID did not necessarily want to return to Day Services when they reopened and were hoping to negotiate more variety in their week.

2.4 Further IDS-TILDA research on COVID-19 TCAID is currently adding a number of new questions on COVID-19 to IDS-TILDA.
This means that IDS-TILDA will be able to understand issues like rates of infection or testing and hospitalisation for people with ID in the context of other health conditions, place of residence, age, gender and level of ID.

Analyses from these data will be available by the end of 2020.

5 SCC19R-R-0391 D 3.


Recommendations for Action In a United Nations policy brief (A Disability-Inclusive Response to COVID-19, 2020), they challenge countries to emerge from the pandemic with improved arrangements for people with disabilities, to ‘build back better’.

Underpinned by research from IDS-TILDA and listening to people with ID, service providers and carers, a number of recommendations have emerged to address the health and wellbeing of people with ID during the pandemic.
3.1 RECOMMENDATIONS CONCERNING ACUTE CARE 3.1.1 Resume non-emergency health services By necessity, the response to COVID-19 meant that a range of other health-related services were postponed or stopped.

There is a worry that the specialist responses to the health needs of people with ID may not be reactivated with the same urgency as those for other groups.

One example is the pilot National Intellectual Disability Memory Service, of which TCAID was a partner.
People ageing with ID are at a much higher risk of developing dementia at an early age.

This service was due to be introduced in March 2020 to provide a national diagnostic centre.

The halt in outpatient clinics has left families angry and frustrated.

There is a need for planning and perhaps additional resources to ensure that health services such as this can return safely yet swiftly.
There are similar concerns for the availability of health screenings, and for access to occupational therapy, physiotherapy, mental health and other psychosocial services.

Planning and resources will be needed.

3.1.2 Facilitate the best care pathways for people with ID It is necessary to understand the benefits and burdens of hospitalisation for persons with ID.

Admission to hospital is not the first line of defence; it is the last line of defence.
Some individuals, acutely sick with COVID-19, may benefit from transfer to the acute hospital system but, for others, transfer to an acute hospital may be a very traumatic experience.

Decisions to transfer must consider the person’s pre-infection health status, their will and preference (if known), the presence of multi-morbidity, overall health status and general frailty.

No decision on the value of care should be based upon perceived frailty resulting from ID alone.
To avoid crisis decision-making, Advanced Care Plans should be in place for those most at risk, for example, older individuals with multiple morbidities.

In preparation for a possible next wave of infections, expansion of telehealth options to include tele-support and tele-therapy will greatly expand opportunities to care for people in their homes and avoid transfers to hospital.

Equally, protocols to permit the presence of a care worker or a family member will improve in-hospital outcomes.
Frontline staff and family caregivers need specific training on how to recognise, document and alert healthcare professionals of COVID-19 symptoms as early as possible, and on how to sensitively, yet closely, monitor and aid individuals showing symptoms.

The HSE Health 6 SCC19R-R-0391 D Impact of COVID-19 on people with intellectual disabilities Passports for people with ID are a useful initiative.
Mobile disability hubs, tele-conferencing facilities linking to the acute hospitals and or palliative care services, and an ID-specific hotline are also needed so that frontline staff can get support and advice, if required, from RNIDs (Registered Nurse in Intellectual Disability) and other relevant health care professionals.

Hospitalisations that do occur will benefit from RNIDs being assigned to the acute hospital setting to assist with communication between clinicians and patients with ID.
3.2 RECOMMENDATIONS IN ID SERVICES 3.2.1 Accelerate movement to community settings The policy-driven movement to family and to smaller environments with fewer residents may have proved vital in restricting the spread of COVID-19 among this population.

With staff care workers being the most likely, though unintended, carriers when people with ID were cocooned, keeping day-to-day contact restricted to a small number of staff meant less likelihood of exposure.
Decisions to limit the movement of staff within group homes and across the organisations may have also proved critical to limiting infection.

For those still living in larger congregated settings, more needs to be done in the short term to realise smaller living situations.

As an RNID myself, I am particularly proud of the role RNIDs have played across the country during this pandemic, but I also wish to commend care workers and others in the field of ID.
Nevertheless, more training is needed for staff to recognise their own symptoms and to stay at home if symptomatic.

Adequate personal protective equipment (PPE) must be available if achievements in this first wave are to be built upon in subsequent outbreaks.

Similarly, I commend services that identified isolation areas within homes or across the service where individuals with suspected or confirmed symptoms could continue to be cared for with dignity and respect.
Such strategies should be encouraged and built upon for the future.

3.2.2 Accelerate the redesign of Day Services in line with New Directions policy IDS-TILDA has previously identified that over 80% of people with ID use formal Day Services.

Interestingly, people with ID who participated in the TCAID COVID-19 webinars indicated a desire to reconsider their participation in Day Services after restrictions were eased.

The HSE New Directions policy is encouraging such changes.
COVID-19 may have unintentionally provided an opportunity to advance such changes.

We should not miss the opportunity to listen to people with ID, respond and further redesign services.

7 SCC19R-R-0391 D 3.3 RECOMMENDATIONS FOR SUPPORTING CAREGIVERS 3.3.1 Ensure that family caregivers are supported as restrictions are lifted Regardless of numbers in community and other settings, many people with ID continue to reside at home with family members, particularly for children and young adults.
COVID-19 has challenged these families.

Many families, without access to respite, Day Services or outside social support, have been cocooning at home.

Considering how many older people are the primary carers for someone ageing with ID, it is vital to ensure better support for older people who are primary carers in the event of that carer becoming infected or dying from COVID-19.

In times of stress on health expenditures, home care packages and other community supports are often among the first to be cut.
COVID-19 has highlighted again how much we depend upon family carers and how vulnerable these caring situations may be.

Home care packages, respite and Day Services should be prioritised in future planning.

3.3.2 Ensure that social support is available to people with ID and their families People with ID have smaller social networks and fewer social supports than the general population.
We have already seen that disruption to their routines and contacts due to COVID-19 placed them at greater risk for social isolation and loneliness, potentially leading to poorer mental health outcomes.

Families have faced similar challenges.

There is now an opportunity to plan for how support can be provided for families should further restrictions be enforced in the future.
3.3.3 Provide care for the carers of those who have died The ID sector did not experience the large numbers of fatalities that were expected at the beginning of the pandemic.

Every death, however, from COVID-19 is a tragedy; those with ID who died left behind grieving family, friends and staff.

Preliminary data suggest that existing relationships between ID services, hospitals and palliative care services were both useful and strengthened during the pandemic.
With further encouragement from the HSE, the palliative care of people with ID and supports for their families, friends and staff carers may be further strengthened.

3.4 RECOMMENDATIONS AROUND POTENTIAL FUTURE RESTRICTIONS 3.4.1 Prioritise COVID-19 testing and follow-up for people with ID Prolonged or unnecessarily long periods of social isolation while waiting for COVID-19 testing or test results were particularly challenging for people with an ID and their caregivers.
Such testing was a difficult and unpleasant experience.

Clinics doing the testing must be accessible with both easy-read materials available and trained staff able to make reasonable accommodations for people with ID.

In the future, there should be expedited 8 SCC19R-R-0391 D Impact of COVID-19 on people with intellectual disabilities reporting of test results by health professionals experienced in communicating with people with ID and their carers.
3.4.2 Ensure ongoing supply of Personal Protective Equipment After the prior difficulties with supplies of PPE, there must be steps to ensure PPE is available for both those working and living in ID services but also to family carers who are providing care at home to someone infected.

3.4.3 Make life for those in isolation or cocooning more bearable Isolation was difficult for many people with ID.
Staff and families must be supported in the development and implementation of innovative strategies and techniques, such as making one’s room/isolation area feel like ‘home from home’ with the use of familiar things, personal items, their chair, social stories, access to their favourite music ,TV programmes, easy-read materials and a daily calendar to add structure to the day.
There is evidence that social connection with valued friends and family members was possible using Skype, Zoom and other digital media platforms; but not for everyone.

It will not happen, however, until such time as people have access to digital devices and broadband in the ID services.

Data from IDS-TILDA has highlighted lower levels of access to digital devices for this population.
As the general population turned to digital devices for work, entertainment, telehealth and social contact, there was not a similar transition for many people ageing with ID.

Few have access to digital devices.

Many community-based group homes also did not have broadband access.

New steps and resources are needed to address their digital exclusion.
3.4.4 Encourage Active Transport for people with ID It is not appropriate to leave people with ID stuck indoors, continuing to cocoon, while the rest of society attempts to navigate some type of return to social interaction.

‘Active transport’, such as walking and cycling, is one of a number of health promotions policy trends that would benefit people with ID.

IDS-TILDA data has documented, however, that many people with ID continue to be dependent on family members or service providers for transport.
It will be important to resource similar promotion of walking and cycling options for the ID population.

9 SCC19R-R-0391 D 4.

Summary As we enter a less restrictive but uncertain time, we must ensure that the factors which protected many in this population are better understood in advance of a second wave of infection.

Now is an opportunity for the implementation of existing policy.

There is no need for further debate or working groups.
RECOMMENDATIONS CONCERNING ACUTE CARE • Resume non-emergency health services • Facilitate the best care pathways for people with ID • Support virtual access to acute care and other health and mental health services by people with ID • Sustain ethical decision-making around COVID-19 responses RECOMMENDATIONS IN ID SERVICES • Accelerate movement to and support of people with ID in the community and in their family homes • Accelerate the redesign of Day Services in line with New Directions policy • Enhance risk protection preparation within ID services RECOMMENDATIONS FOR SUPPORTING CAREGIVERS • Ensure that family caregivers are supported as restrictions are lifted • Offer supports for carers and families of those with ID such as social supports and grief support RECOMMENDATIONS AROUND POTENTIAL FUTURE RESTRICTIONS • Prioritise COVID-19 testing and follow-up for people with ID • Ensure ongoing supply of Personal Protective Equipment • Make life for those in isolation or cocooning more bearable • Increase access to digital infrastructure for ID services • Encourage Active Transport for people with ID 10 SCC19R-R-0391 D Impact of COVID-19 on people with intellectual disabilities The Trinity Centre for Ageing and Intellectual Disability (TCAID) aims to address the inequalities and health disparities that occur for people with intellectual disability as they age.
We do this by conducting rigorous engaged research on the physical and social determinants of health and wellbeing, and translating findings to inform models of policy and practice.

Trinity Centre for Ageing and Intellectual Disability (TCAID) Trinity College Dublin, the University of Dublin Lincoln Gate Dublin 2 +353 1 896 3332 www.tcd.ie/tcaid/ @ageingwithID 11 SCC19R-R-0391 D