Opinion: The sector requires a government which invests in and values people rather than simply cutback services

In January 2020, all non-profit organisations providing services to people with intellectual disabilities received notification from the Health Service Executive that they were to receive a 1% cut. In money terms, this equates to €20 million a year being taken out of direct service provision. This was a devastating blow to a sector, already on its knees from a lack of government investment. 

A campaign to reinstate this funding was launched through the National Federation of Service Providers and fell mostly on deaf ears. Finally, under increased pressure, then Minister for Health Simon Harris agreed to reinstate the 1% cut, but no one has seen a sniff of this to date.

In mid March, day services for people with intellectual disabilities were physically closed as concerns over Covid-19 swept through the country. The focus shifted to keeping people who lived in residential facilities safe and staff from day services were redeployed to residential facilities to strengthen residential support teams.

From RTÉ News, a report on how those with intellectual disabilities have coped with Covid-19

The following weeks saw stringent infection control measures being introduced and implemented. Strict visitor restrictions were put in place and frontline workers were declared heroes.  According to the National Federation of Service Providers, levels of infection among people with intellectual disabilities in residential settings in non profit organisations  were "exceptionally low".

While the battle to defeat Covid-19 was being fought within residential facilities, many non-profit organisations saw the immense pressure and stress that families of people with intellectual disabilities and autism were under. They began to develop online sessions for day service attenders and provide social distancing supports to extremely vulnerable individuals. 

While really appreciated, these titbits of service are not enough. People with disabilities and their families need ongoing support and require a day service five days a week that is appropriate to meet their needs.

From RTÉ Radio 1's Morning Ireland in July 2019, a report reveals basic human rights are not being met in HSE residences for people with mental illnesses and intellectual disabilities.

The vulnerable people that are affected have reached a stage where they require and deserve to be given definitive dates for when day services will reopen. They also require clarification about what this reopening of day services means in terms of hours of support. They also need to know that this is backed by the financial resources required.

Instead, we've seen is a complete lack of leadership in this area. At the end of May, the HSE issued the Framework for the Resumption of Adult Disability Day Services followed by the Guidance to Support the Framework for the Resumption of Adult Disability Day Services in early July. But what use are documents to non-profit organisations when they have been allocated no resources to implement the radical changes that are required? Ironically during the same week these guidelines were unveiled, outgoing Taoiseach Leo Varadkar was unable to confirm when day services would reopen. If the current Tanaiste was unable to navigate the HSE document without finding the answer to this very important question it beggars belief what was actually written in this 72 page report.

What are we not being told? The scary truth is that the HSE are demanding that organisations repatriate day service staff out of residential services in order to reopen day services. According to the Health Information Quality Authority and public health experts, this move will increase the risk of people that live in these facilities contracting Covid-19, especially if staff are being asked to work across multiple locations. Yet the HSE are currently demanding a date for this to repatriation to commence. Are people in residential services, their families and our frontline heroes who fought so valiantly to date about to lose the battle at the final hurdle? 

People with disabilities, their families and service providers have to fight long, exhausting and retracted battles to increase services and supports 

The key challenges that no one is addressing need to faced up to. Firstly, the influence of politics within the disability sector is not visible. People with disabilities, their families and service providers have to fight long, exhausting and retracted battles to increase services and supports and always appear to have to beg from the crumbs that are left on the table. The result of this is layers of exclusion and social disadvantages caused by successive governments not including the welfare of people with disabilities on its agenda.   

Secondly, it is clear that we need to be able to practice a new paradigm of leadership within the state and the HSE. We require an agenda which invests in people with disabilities so they can be given every opportunity to enjoy life as Irish citizens.

The views expressed here are those of the author and do not represent or reflect the views of RTÉ