Families and frontline staff must be consulted about assessment of need problems

Pervasive and abject policy failure across our disability sector is causing immense suffering to many families

Disability campaigner Cara Darmody will hold a 50-hour sleep-out at Government Buildings to highlight the worsening crisis with assessment of need. Picture: Sam Boal/Collins

On Tuesday, Cara Darmody, a remarkable 14-year-old disability activist from Ardfinnan in Co Tipperary, begins a 50-hour sleep-out in front of Government Buildings. She is taking this action to highlight the worsening crisis with assessment of need, with more than 15,000 children now overdue an assessment.

Despite her youth, Cara has been highlighting this issue for years. She was moved to campaign on behalf of children with additional needs after witnessing the lack of services available to her two young brothers, who are autistic and have intellectual disabilities.

There are many other families like Cara’s, who have watched their children being failed and have felt compelled to become activists and campaigners. All to secure basic services and supports which children with additional needs are entitled to as a right. In a country as rich as this one, it is shameful that so many children have been failed so consistently and so comprehensively.

The assessment of need scandal sits within a broader context of pervasive and abject policy failure across our disability sector, which is causing so many families immense suffering. 

Successive governments have paid lip service to addressing this disaster in disability services and the additional needs education system, but it has never been a real priority. This chronic neglect, over many years, has left families at the mercy of a disjointed patchwork of supports for their children.

The 2005 Disability Act provided children with a legal right to an assessment of need within six months. In reality, more than 90% of assessment of needs are completed outside this legal time-limit. 

Instead of charting out any credible plan to address this, the HSE seems to be resigned to this shameful situation getting much worse — with waiting lists expected to grow from more than 15,000 to 24,000 by the end of the year.

After completing an assessment of need, families are often faced with a further abyss of prolonged waiting to access therapies. Many feel they have no other option but to seek these privately, if they can afford to. Children with mild-to-moderate developmental issues or disability may be referred to Primary Care Services, while children with more complex difficulties are referred to Children's Disability Network teams.

Waiting-lists for Cork / Kerry primary care psychology exceeded 6,000 earlier this year and waiting-times were close to six years for some children. Waiting lists this long effectively mean there is no service.

The HSE cites recruitment difficulties as the main source of the crisis and has even created a new layer of management to address this. It fails to mention the main difficulty is its failure to fund necessary posts over many years, and an over-reliance on unqualified assistant psychologists.

Any analysis of the failings in primary care and Children's Disability Network teams needs to acknowledge there are huge issues of burnout and low morale among staff and, consequently, poor retention. These clinicians are often working in services that have been hollowed out, when it comes to staff and resources, and are dealing with unmanageable waiting-lists.

The main roadblock to staffing services is the Government’s Pay and Numbers Strategy, which is proving to be, in some cases, as restrictive as the official recruitment embargo that preceded it. It has been roundly criticised by all the main unions as putting a stranglehold on service development.

The HSE is increasingly referring assessment of needs to private clinicians at an average cost of €3,300 per assessment. What we need to see is proper workforce planning and a comprehensive recruitment drive to meet the level of need at all stages of service provision. This would provide continuity of care for service-users and better morale among existing staff.

Behind all these waiting-lists figures are families languishing through what feels like one purgatory after another — waiting endlessly for an assessment before then being placed on further waiting-lists for support, with no end in sight.

The crises in disability services and additional needs provision are not inevitable. Poor political decisions got us into this crisis, but the right ones can get us out. What we need is for disability services to be treated as a priority. 

Coupled with that, we need to see reform that is driven by meaningful and sustained engagement with the families and frontline staff who are at its epicentre. I would strongly encourage ministers Norma Foley and Michael Moynihan to also engage with clinicians who have left primary care and disability services and get their perspective on how to address this crisis.

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Above all else, we need to see much greater investment by Government in these essential services for our disabled citizens. We should not have to rely on the remarkable courage and determination of campaigners like Cara Darmody to make that commitment.

• Liam Quaide is a Social Democrats TD for Cork East and the party’s disability spokesperson. He worked as a clinical psychologist before his election to the Dáil