Disabled People call on HSE to provide clarity and direction in relation to provision of supports during Covid19 public health emergency

ILMI calls on HSE to show leadership and ensure universal approach to Personal Assistance in the pandemic

Today (Thursday 25th March) ILMI called on the National Public Health Emergency Team (NPHET) and the HSE to provide clarity and direction to address serious concerns that Leaders have in relation to their Personal Assistance Service (PAS) in relation to Government emergency planning in relation to COVID19 (Coronavirus).

“As a Disabled Person’s Organisation (DPO) Independent Living Movement Ireland (ILMI) has been inundated with serious concerns from Leaders from across the country, who are currently in receipt of Personal Assistance Services (PAS) during the COVID19 pandemic” said ILMI Chairperson Des Kenny.

“We are calling on the HSE to provide clear direction on the maintenance of standard PAS for all Leaders during the COVID-19 pandemic. This needs to be nationwide direction applicable to all PAS delivered by all service providers. The HSE needs to ensure that clear information in relation to their services is communicated directly to Leaders. During recent online discussions, ILMI members have repeatedly raised that they have not received any relevant information in relation to their service and how it will be continued during the Covid19 public health emergency” added Mr Kenny.

ILMI acknowledges the recently published ‘Guidance for Health and Social Care Workers’ document from the HSE but from consultation with members, it appears that not all service providers are applying it or notifying disabled people of its contents.

“Delivery of the Personal Assistance Service to allow disabled people to live their lives does not allow for social distancing rules to be followed and clear direction from the HSE is now required to ensure the health, safety and wellbeing of both Leaders and PAs during this pandemic

The PAS is a vital service for many disabled people to live their lives. However in Ireland PAS still operates on a piecemeal basis as a pilot project, with policies and standards differing based upon geographical location and service provider. What is needed now in this Public Health crisis is for a clear, uniform, universal approach led by the HSE to ensure that no one’s service is hindered due to lack of clarity of how best disabled people can continue to lead their PAS” added Mr Kenny.

During online consultations with disabled people from across the country, ILMI members have raised the following concerns:

The need for the HSE to provide clear direction on the maintenance of standard PAS for all Leaders during the COVID-19 pandemic. This needs to be a blanket nationwide direction applicable to all PAS delivered by all service providers.

If a Leader is diagnosed with COVID-19 and instructed to self-isolate how will this impact upon their PAS? Will there be emergency staff deployed to provide a service? If so what level of service will be provided, how will these staff be trained and by whom? PAS is a specialised service that is based on meeting the specific needs of each disabled person. If a Leader is diagnosed with COVID-19 it is likely that they will not be in a physical state to effectively communicate and train a new PA. Therefore the need for specialised staff is paramount to maintaining a safe service for all disabled people.

If a Leader is diagnosed with COVID-19 and needs in-patient hospital care what level of support will be available in the hospital setting? Under standard hospital procedures a PA would normally accompany a Leader and provide assistance on the range of tasks required, which hospital staff would not be in a position to provide. With the restrictions imposed by COVID-19 will it still be possible for a PA/designated person to attend hospital with the disabled person, wearing all necessary protective equipment? This is particularly relevant to Leader who have profound impairments or have difficulty communicating and may require the services of their PA to effectively communicate their medical directions.

Personal Protective Equipment (PPE) must be provided to all Leaders. This must include hand sanitiser, gloves and masks. Many Leaders have a range of underlying health issues, which make them particularly disposed to contracting COVID-19. Many of the required elements of PPE are no longer freely available to purchase and where they are, they are priced beyond the reasonable price brackets that would allow for disabled people to purchase them.

Information for Editors:

What is a Leader?

A Leader is a disabled person who employs directly or indirectly (through a service provider) Personal Assistants. A Leader takes full responsibility for the instructions given to the Personal Assistant, for the actions and consequences that follow from these, for training and day-to-day management of the service. The Leader is in charge.

The Personal Assistance Service (PAS) is a tool that allows us to live independently. The PAS enables us to do all the tasks that we cannot do for ourselves. It provides us with the freedom and flexibility we need to live our lives as we chose. A Personal Assistant (PA) is hired to assist us with a range of day-to-day tasks that we cannot physically do for ourselves.

With PAS we are in control and direct the PA to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising. A PA does not “look after” or “care for” us. We delegate these tasks to our PAs and in doing so take back control of our lives.