Over 1,000 children in Western Trust area awaiting autism assessment - Derry MLA as new strategy launched

SDLP MLA Mark H Durkan has welcomed the Department of Health’s publication of a new autism strategy for 2021 and 2022 as it emerged over 4,400 children are waiting to be assessed in the north - around quarter of them in the Western Trust area alone.
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Over 500 local children in the west have been waiting over a year for assessment.

Mr Durkan said improved provisions and support for autistic people and their carers must be a priority, including addressing the ever-increasing waiting lists for assessment.

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He was speaking after the publication of the cross departmental interim strategy.

SDLP Foyle MLA Mark H Durkan.SDLP Foyle MLA Mark H Durkan.
SDLP Foyle MLA Mark H Durkan.

In response to an Assembly question from Mr Durkan, the Department of Health have confirmed that currently, over 4,495 children are waiting for an Autism Spectrum Disorder (ASD) assessment in Northern Ireland.

The Foyle MLA commented: “I welcome the publication of a vital interim autism strategy, to create an informed and better understanding of the challenges facing individuals with autism and their families. This is undoubtedly a necessary piece of work and a step in the right direction.

“However, it is clear that autism services across the North are at breaking point- the figures from the Department of Health relating to ASD assessment waiting lists for children, are testament to a system in chaos.

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“In the Western Trust area alone, there are currently 1,085 patients on the waiting list; 527 of which have been waiting in excess of a year for assessment. That is 1,085 children struggling in a class of their peers, frustrated with the added turmoil of lockdown, left without the additional support they desperately need. That is 1,085 families battling for answers, trying their utmost to secure assistance for their child. The system has failed each and every one of them.

“Last year, I wrote to the Health Minister calling for increased investment in autism services, in part to navigate the impact of the pandemic. This is an area marred by historic underinvestment, funding thus far has failed to match the increase in demand, year on year, for autism support and services. These staggering figures are in part borne out of the pandemic, compounding already dire waiting lists.

“It is unconscionable that children and their parents are living with uncertainty, without an ASD statement and more importantly without critical support. Particularly this year which for many families of children with autism or awaiting diagnosis, the impact of lockdown has hit harder. Not having that crucial diagnosis or the assistance that comes with it, is distressing in itself but now their chance of getting that diagnosis has been pushed even further down the road.

“It is imperative that areas of underinvestment such as in autism services are redressed by the Executive. We need to create a fit for purpose system, a system of understanding that meets the needs of autistic individuals and their families to cope with the repercussions of Covid-19 and beyond. That begins with early diagnosis. No child should be neglected on colossal waiting lists, fighting for support to which they are entitled.”

The report commits to:

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*Implementing a new framework of care to deliver a proactive, integrated and streamlined pathway for children and young people across the region and provide a range of early intervention approaches and support to meet their needs and that of their families and carers;

*A review of Adult Autism Services will be undertaken to determine how future, sustainable provision of care and support can be standardised across the regions;

*Mental Health service pathways and structures will be improved following the implementation of a new ten year mental health strategy. This will provide better access to support for autistic people, their families and carers throughout their lives.

*Support children and young people by promoting emotional wellbeing, strengthening self-esteem and resilience with a strong focus on promotion, prevention and early intervention;

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*Through the phased implementation of a new Special Education Needs (SEN) Framework improve participation and empowerment for all children going through the SEN assessment process. Ensure that autistic

people are supported throughout their education;

*We will deliver focussed training that will enable our workforce to respond to the specific needs of people with autism and how they view their environment;

*We will actively and meaningfully engage autistic people and their families in the co-design of new employment and skills supports;

*We will have well planned, whole life transitions to ensure that autistic people are supported throughout their lives;

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*We will provide more responsive support and development of skills to enhance employment opportunity; and

*We will develop and co-produce policy and services, as appropriate, in collaboration with autistic people, their families and carers to enable lived experience to shape future services.

*We will provide training to equip the workforce, particularly those in our frontline services, with the skills to understand the needs of autistic people and how this impacts on a person’s life and to provide surroundings where they can feel safe and supported within the environment;

*We will work in partnership to develop a new Supporting People Strategy to facilitate and deliver high quality housing support and promote independent

living to those most in need; and

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*We will provide opportunity within our communities to support autistic people and their families and enable them to experience greater social interaction and activity in an accessible way and feel connected to their environment.

Health Minister Robin Swann has also stated that key improvements in the provision of services and support for those with autism and their carers must be a priority for society here.

Speaking following the publication of the strategy for action, he said: “We as a society, have made significant strides in developing improved support and developing better understanding of the needs of autistic people, their families and carers but much still needs to be done,” the Minister said.

“This Interim Strategy seeks to set future direction towards building communities where autistic people, their families and carers can feel safe, included, valued and understood.

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“The vision for this strategy is ‘to respect, to listen, to involve’ and this can only be achieved through partnership working and involving people with lived experience of autism, so that we, as a society, can be better informed and have a greater understanding of their needs.”

The Minister said that whilst the interim strategy had gained much from ongoing stakeholder engagement this had been constrained by the emergence of the Covid-19 pandemic.

He gave a commitment however: “To build on the work thus far with the development of a fully co-produced autism strategy later this year.

“It is my hope that this will commence a period of renewed partnership working across our communities and collaboration across government to shape and influence actions that can truly make a difference and improve quality of life for all.”

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The interim strategy will be based around three strategic outcomes:

*A healthy life with access to services on an equal and timely basis to provide early intervention and support to best meet the needs for individuals and families;

*A life with opportunities to live as an active citizen to support autistic people and their families through continued support in education and employment and as they transition through life stages; and

*An independent life with greater understanding and choices which provides opportunity for autistic people to live safe and independent lives within our communities and where they are met with respect and understanding.