Forgotten voices

I Am Still Not Okay - I Am Still Forgotten

It is 18 months since families supported by the National Autistic Society NI worked with the BBC on the award-winning Spotlight programme “I am Not Okay” and the launch of the campaign “Forgotten Voices” by the families in the programme and the National Autistic Society. There was widespread shock and anger from the public that families of autistic children with high support needs and distressed behaviour were not given the support they needed and were living in continual crisis. The aim of the Forgotten Voices campaign was to ensure that respite facilities for those families in crisis were reintroduced, and that additional residential and overnight respite beds were added to the system.

Ministerial Response

The Minister met with the families on numerous occasions and £13.1 million recurrent funding was promised to children’s disability services to enable these needs to be met. The Forgotten Voices campaigners welcomed this money, believing that it would be spent on helping those families with high support needs.

We are sorely disappointed that this was not the case:

· It is not clear how much of the 13.1 million allocated has been spent, but we are aware that any money which has been spent has been predominantly used for activities and services which do not benefit those with high support needs

· Too many families remain on the ‘edge of care’ and we suspect the alleged reduction in those figures suggested by the various Trusts in briefings is due to issues such as children aging out of the system and unrecorded changes in criteria for documenting children deemed on ‘edge of care’

· Overnight respite has not been restored to pre-covid levels (which was, in any event, wholly inadequate to meet needs)

· No plans for new residential facilities have been made for those families who need it

· A culture that blames families rather than supporting them still pervades

Outcomes for Families who took part in the
Spotlight “I Am Not Okay” Programme

Belfast Trust:

· One family has received a residential placement

· One family has been ‘aged out’ of the system and has been promised an adult placement currently being built and which might be available in September. While in Children’s services, no overnight respite was found that could support his needs.

South Eastern Trust:

· Three families from the SE Trust were promised residential placements to suit their children’s needs. One required a full-time placement and two sought ‘shared care’ placements. These were to be provided in a repurposed facility called Redwood. One family commenced their ‘shared care’ placement in January after numerous delays. The other two families are still in limbo - one still residing in an unsuitable placement in Lindsey House and the other one with no plans for admission and who will age out of the system in November. The CEO of the SE Trust in a verbal briefing to the Health Committee stated these families would have places in Redwood by the end of March. This is not the case.

The families who took part in the Programme and the Campaign have been very clear this was not “just” about them, but the aim was to highlight and address the systemic failures in the Trust’s children’s disability services for those with high support needs. In 18 months and, despite allocation of recurrent funding, the DoH and the various Trusts have not met the needs of three of the five families whose situation has been highlighted at the highest level. We now ask, how will your party help to address this systemic failure?

You can watch the I AM Not OK spotlight programme here BBC One - Spotlight, I Am Not Okay - Spotlight

For more information, please contact Shirelle Stewart

Autistic children and young people with high support needs are being failed by Northern Ireland’s health and social care system. They can’t get residential care or short breaks because of a chronic lack of places in Northern Ireland. They and their families are unseen, unheard and forgotten.

Here are four of their stories:

Theo’s story

Danny’s story

Rudy’s story

Eoin’s story

The recent BBC Spotlight highlights how families are being failed by a system supposed to support them.

Testimonials

"We feel that planning and funding for services for the children with the highest support needs has been non-existent. Our children, mostly non-speaking and not seen often in public because of their challenges, have been at the bottom of the pile when it comes to support from the very services that are meant to help them."

Parent -

Autistic children and young people in our communities who have some of the highest levels of need are being denied support. These include children and young people who do not use speech and need round-the-clock support. Without it, they might become incredibly distressed, leading to harm to themselves or others. Families can be pushed to the brink, trying to fill in the gaps of support and are being denied access to short breaks because no places are available. The health and social care system should support any autistic child when they need it. But there is a comprehensive failure of the system to give these children support.

Short breaks support is woefully inadequate across Northern Ireland and it is those requiring the highest level of support who cannot access appropriate services. Many short break services have been repurposed as full-time residential homes as families have hit crisis. But even so, there are currently no available residential placements in Northern Ireland.

With the repurposing of respite centres, more families are hitting crisis and so the vicious circle continues. The Department of Health and the Health and Social Care Trusts are failing in their duty of care to these children, young people and their families. They have failed to plan and commission appropriate services and the most vulnerable in our society are forgotten.

It’s time for this to change. It’s time for Northern Ireland to work for autistic children.

We are Campaigning for Change

Please sign our Petition calling on the First and Deputy First Ministers to:

Provide immediate access to short breaks and residential care for those families currently in crisis
Provide the resources needed for the commissioning of services to support autistic people with high support needs and their families such as short breaks and residential placements
Set up a dedicated strategic taskforce to address the reforms needed to support autistic people with high support needs