'Treated like ghosts' : Autistic young people with learning disabilities being abandoned - Derry parents

While in England the legislation for the Education Health Care Plans (EHCP) runs from 19-25 years old to provide support for young adults with additional needs, thre is no such provision here. At present, Alma White’s groundbreaking #CalebsCauseNI / Can You See Me campaign for her son, is calling on Stormont for Post-19 legislation for all young people with additional needs her in Northern Ireland.

The Journal has spoken to the parents of autistic children with additional needs who are working in tandem with Alma White. Denise Geary and Caroline Campbell were two of the five parents who set up Circle of Support (COS) in Derry for autistic children and their families.

Caroline, one of the COS Directors, said: "COS has now gotten to a place where we always wanted it to be. It is parent-led and has gone from supporting our five families in 2011 to supporting around 900 families. Through constant funding applications, COS now has staff employed to provide amazing opportunities and activities for autistic children and their families. But it feels like we are starting all over again as our own children, who are among the thousands in the north, become adults.”

Caroline added: "Currently our children have a Statement of Special Educational Needs in school, which is a legal document that protects them, but this stops for all students with additional needs when they reach 18 or 19. As one principal has put it, it is then like a “cliff edge” and contrasts greatly with their siblings’ future.”

With her daughter approaching school leaver age, Denise and her husband have visited several Day Centres for adults with a learning disability, provided by and funded by the Western Trust and regulated by RQIA.

Denise said: “Unfortunately none of the Trust’s learning disability Day Centres seem suitable for our daughter due to her autism needs and her young age.

“We were quite shocked to be informed that there is no dedicated service for provision for young autistic adults with a learning disability within the WHSCT and nothing within the statutory services for dual diagnosis.

“We then visited some of the Day Opportunities, funded by Self Directed Support (SDS) in the absence of specialist facilities. These seem more appropriate to meeting her autism needs but the big concern is that my daughter would not manage a placement in Day Opportunities without a one-to-one support worker, which we have been told the Trust does not often fund.”

There is support available for young people who are autistic or for young people who have a learning disability, but there is no dedicated service in the WHSCT for young adults who have both.

If a suitable placement cannot be offered by the Trust, parents are given a ‘Managed Budget’ to employ a personal assistant or agency staff to help look after an autistic learning disability adult but the families state that this alternative option does nothing to address the isolation of those young adults and puts the onus on families to secure and manage suitable support.

Caroline said: “After leaving school our autistic learning disability young people who cannot access services are often left sitting at home for the rest of their adult lives and the parents’ lives too. Many parents and carers are forced to give up their work and career to look after them which can cause significant stress for families financially, mentally and emotionally.”

Caroline added: “No-one will ever come looking for my son. It is like he is a ghost, invisible and doesn’t exist.

“We are constantly being told by the Trust and politicians that there is a ‘gap’ in services for our autistic learning disability young people. It seems that it is too complicated for anyone to do anything about it."

Denise has been in constant contact with Alma White and is co-ordinating the response along with other parents in the north west. The local parents have held meetings with numerous politicians including Colum Eastwood, Mayor Lilian Seenoi-Barr and MLAs Mark H Durkan and Ciara Ferguson have also committed to look into the matters being raised.

The Journal understands a number of politicians have contacted the Western Trust seeking clarity over the issues raised.

Caroline said: "There is no joined up approach. The Government and the Trusts needs to look at the Day Opportunity projects that do exist and try to meet the needs of all young adults with additional needs.’"

Michelle O’Neill, First Minister, recently visited the Hub in Derry, a Day Opportunity facility for young people with additional needs, and saw first-hand the massive difference the Hub makes to the quality of life, happiness and mental health of the young adults that attend.

“Our autistic learning disability young adults may require extra one-to-one support to avail of Day Opportunities and to develop social skills, life skills, friendships, access education and entertainment, have people to engage with them but they too deserve to have a rich and fulfilled life,” Caroline said.

Denise added: “Parents feel that we have to campaign because more and more families are in a similar situation where their children will be left sitting at home with no future."

At present there is no onus on the government to do anything for these young people, the parents said.

Many parents from Derry will be among those gathering at the gates of Stormont tomorrow, Wednesday, at a protest rally organised by Alma White urging politicians to introduce the Post-19 legislation needed.

Alma White is also running a ‘Help create new legislation for Post-19 Special Educational Needs Northern Ireland’ petition on Change.org

The Journal asked the Western Trust and several departments to respond to the issues raised by families here.

A spokesperson for the Western Health and Social Care Trust said: “We would be happy to meet with the families concerned.

“In Learning Disability Services the Trust is not commissioned to provide day care provision for needs on the basis of autism alone but based on individuals with a learning disability. This would be similar to all Trusts in Northern Ireland.

“We understand that day care can be challenging for some of our service users particularly with more complex needs, however, we endeavour to make day provision environments as bespoke as possible with the input of our multi-disciplinary teams.”

The spokesperson continued: “The Trust’s Adult Autism Service, is a service for those who do not access Intellectual Disability Services. The Adult Autism Service is not commissioned to meet the needs of individuals with significant co-morbidities due to the limited workforce. The Adult Autism Service is primarily resourced for diagnostic assessment and short term support and intervention.

“When an individual is assessed as requiring a support package based on substantial / critical need and risk, they are provided with same. This is mainly associated with day opportunity. There is also a resource for Cedar Contracts which promotes community access and social inclusion.

“The Adult Autism Service recognises the increasing complexities and needs of those who have a diagnosis of Autism and is working closely with colleagues in the Department of Health on this issue.”

The Department of Health meanwhile said it is aware of longstanding challenges in supporting people with complex needs throughout transitions as they leave school and navigate adulthood.

"The Autism Strategy 2023-2028 and the Autism Strategy Delivery Plan 2023 - 2025 are cognisant of this,” a spokesperson said.

“Work is underway across all government departments and public bodies to implement the Autism Strategy Delivery Plan 2023- 2025, taking account of the extremely challenging financial context.

“The Learning Disability Strategic Plan 2022 has progressed significant work to improve Transitions. A Regional Protocol for Transitions has been developed for children and adult HSC services to provide a standardised approach. The Department is finalising a service model for learning disability, applicable to those with comorbid Autism, which will improve and diversify the assistance available to people supported and their families, including management of transitions.

“The Department of Health also co-chairs a Transitions Working Group with the Department of Education, which includes the Department for Communities and Department for Economy. This is reviewing the process for children with a Statement of Special Educational Needs and/or disability who are leaving education.”

A Department of Education spokesperson said: “Clear and appropriate pathways for young people moving from education into adulthood is a key theme within the End to End Review of Special Educational Needs.

“We conducted a survey of practitioners and parents to better understand their experience of the current process and seek their views on potential solutions for the future.

"We will continue to engage directly with practitioners, parents and young people who are going through or have gone through the transitions process to help inform recommendations on how we can improve pathways for young people with SEN.”

A spokesperson for the Department for the Economy meanwhile said: “Minister Murphy is clear that every young person should be able to access opportunities and fulfill their potential. He is aware that there are issues relating to the availability and accessibly of provision for young people with SEN beyond the age of 19 and the significant impact this can have on those individuals and their families.

"The Minister intends to engage with relevant parent and stakeholder groups, including providers, to listen to and understand their concerns. He is keen to promote access to existing programmes and will work with Ministerial colleagues to identify possible improvements to support these young people and their families.”

You can sign the petition here: https://www.change.org/p/help-create-new-legislation-for-post-19-special-educational-needs-northern-ireland?recruiter=864688559&recruited_by_id=c5562b30-2e20-11e8-aa98-b1ad825cb26d&utm_source=share_petition&utm_campaign=petition_dashboard&utm_medium=copylink