New autism protocol due to start in July is still at recruitment stage, HSE confirms

Autism campaigner Cara Darmody during a 50-hour protest outside Leinster House last month over the delays families and children face in accessing assessments of need. Picture: Sam Boal/Collins

Work on a new autism protocol was expected to start in July, but it is still just at the recruitment stage, the HSE has said.

This protocol is part of a bigger plan to address long delays facing families who want an assessment of need for a child with disabilities.

The legal target of a six-month turnaround is frequently missed, with figures shared with Sinn Féin last month showing an average time of 24.3 months.

The Departments of Health and Disability are promoting this new approach as a solution, or at least part of the solution. The protocol also offers a State system for adult assessments for the first time.

The HSE is in charge of the roll-out.

At the launch in May, chief executive Anne O’ Connor said: “Implementing the protocol in the HSE Health Regions will begin in [the third quarter of the year, July to September], supported by in-reach teams."

However, this week, a spokeswoman said: “Recruitment of staff for the in-reach teams commenced in July."

The plan is to have 11 expert teams help staff in disability, mental health and primary care services with the new approach.

She said this meant “a more effective and coherent service for autistic people”.

Ms O'Connor could not say how many staff had been hired for each team. It can take months for people to move from one role to another because of giving notice, or being vetted.

“Implementation planning within the regions will commence in September,” she said, including referral pathways. 

Each regional healthcare area will have a group with HSE managers, clinical staff, and people with lived experience of autism. 

Webinars are set for September and October covering HSE regions. These will be for people with lived experience, service user groups, clinicians and service managers. 

Overall, she said, the protocol will be "the preferred assessment route for autism, enabling more timely assessments conducted by competent practitioners".

The protocol will also promote access to the required services and supports, she added.

In response, the national autism charity AsIAm welcomed recruitment as a key part of the changes.

Chief executive Adam Harris said: “Autistic children and adults must have access to a high-quality, timely autism assessment. 

“The success of the protocol will rely heavily on input from autistic people, clinical input and governance and critically successful resourcing and recruitment.” 

However, he said: “It is of critical importance to understand the autism protocol is in no way a substitute for the statutory right to access an assessment of need.” 

A review of the Disability Act, including assessment of need, is under way already, with a public consultation open until September 9.

Mr Harris said during these changes, “the right for those accessing an assessment of need to access an autism assessment as part of this process must be protected in law”. 

He also called for the in-reach teams to include "standalone resourcing and a team" for over-18s. 

“The autism protocol commits to providing a pathway for adults to access autism assessment for the first time. Should this succeed, it requires dedicated, focused resourcing,” he said.