We are aware of families’ concerns about the current testing guidelines for Covid 19 and how they may impact on people with Down syndrome.
We have received clarification from the HSE that the clinical judgement of a GP will be respected in terms of Covid 19 testing for children and adults with Down syndrome.
Dr Colm Henry, Chief Clinical Officer with the HSE, in a letter to Down Syndrome Ireland said: “In addition to advising on management, your 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.”
We also contacted the Health Protection Surveillance Centre, who create the guidance that is online and disseminated to GPs via their HSE representatives. They have also advised us that their team of specialist doctors have been made aware of the current testing guidelines for Covid 19 and how they may impact on children and adults with Down syndrome.
The advice remains the same and that is to self-isolate if symptomatic to break the transmission of virus and seek medical advice from your GP or specialist team if attending a specialist service. Non-symptomatic vulnerable groups are advised to significantly restrict their movements with specific advice for the most vulnerable groups (https://www.hpsc.ie).
It comes after we requested confirmation from Minister for Health Simon Harris and HSE CEO Paul Reid that the particular needs of people with Down syndrome be taken into consideration when getting people for testing. We made the following request:
People with Down syndrome are an ‘at risk’ group for flu complications and may also be particularly vulnerable to Covid 19 coronavirus complications.
We request confirmation from the HSE that people with Down syndrome can be tested without showing signs of fever. People with Down syndrome can experience abnormal temperature regulation, so may be significantly unwell without a fever. We would like you to confirm that they are eligible for testing even if symptoms are atypical.
We are asking all medical professionals to listen to families’ concerns if they believe that an adult or child with Down syndrome is seriously unwell and may need testing for Covid 19, as they may present differently and may have difficulty communicating how sick they are feeling.
We are also calling on the government to follow the WHO guidelines to ensure that health and social care for people with disabilities are supported during this crisis. These guidelines are outlined below.
We are aware that a booklet is being prepared for delivery to every household. We would like confirmation that this will be available in alternative formats as advised by the WHO. We are happy to offer our help to prepare the easy read materials if needed.
Here is a resource made by a doctor who is also a parent of a child with Down syndrome which includes tips for triaging and treating a child with Down syndrome.
Further policy information:
This is very specific on measures needed to support people with disabilities in this crisis. The action plan published by the government is relatively vague in detail concerning people with disabilities.
Relevant health information:
Children’s Health Ireland (CHI) at Crumlin: A Guideline for the Management of Respiratory Complications of Down Syndrome in Children in Ireland
- Advocate medical, Adult down Syndrome Center: Temperature Regulation in People with Down Syndrome
- IrishHealth.com: COVID-19 and intellectual disabilities
Summary of WHO recommendations:
WHO Recommended Actions for Governments
Ensure public health information and communication is accessible
- Include captioning and, where possible, sign language for all live and recorded events and communications. This includes national addresses, press briefings, and live social media.
- Convert public materials into “Easy Read” format so that they are accessible for people with an intellectual disability or cognitive impairment.
- Develop accessible written information products by using appropriate document formats, (such as “Word”), with structured headings, large print, braille versions and formats for people who are deafblind.
- Include captions for images used within documents or on social media. Use images that are inclusive and do not stigmatize disability.
- Work with disability organizations, including advocacy bodies and disability service providers to disseminate public health information.
Undertake targeted measures for people with disability and their support networks
Work with people with disability and their representative agencies to rapidly identify fiscal and administrative measures, such as:
- Financial compensation for families and caregivers who need to take time off work to care for loved ones. This could include paying, for a time-limited period, family members for the support provided during normal working hours.
- Financial compensation for families and caregivers who are part of the casual and self-employed disability workforce, who may need to self-isolate, and where coming to work would place people with disabilities at greater risk of infection.
- Adoption of flexible, work-from-home policies, along with financial compensation for the technology required to do so. COVID-19
- Financial measures (commonly within a broader-based economic stimulus package) that include people with disabilities, such as lump-sum payments for qualifying individuals, tax relief, subsidization of items and/or leniency and allowable deferral of common expenses.
- Appropriate action by schools and other educational facilities to ensure continued education for students with a disability who may be required to study from home for longer periods.
- Provision of a hotline in multiple formats (e.g. telephone and email) for people with disabilities to communicate with the government, ask questions, and raise concerns.
Undertake targeted measures for disability service providers
Work with the disability service providers to identify actions for the continuation of services and priority access to protective equipment:
- Ensure that agencies providing disability caregivers have continuity plans for situations in which the number of available caregivers may be reduced.
- Work with disability service providers to reduce bureaucratic recruitment barriers while still maintaining protection measures, such as police checks for caregivers.
- Consider short-term financial support for disability services to ensure they remain financially sustainable if they experience a downturn in their operations.
- Provide a hotline for disability services to communicate with the government and raise concerns.
- Prioritize disability caregiver agencies for access to no-cost personal protective equipment, including masks, aprons, gloves and hand sanitizers.
- Ensure that caregivers of people with disabilities have access to COVID-19 testing alongside other identified priority groups.