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Inclusion Ireland comment on the appointment of Independent Support Liaison Officer by the Department of Health

Reacting to the appointment of an Independent Support Liaison Officer by the Department of Health in relation the allegations made on the RTÉ Investigates Prime Time programme, interim CEO of Inclusion Ireland, Lorraine Dempsey, said:

“We welcome the appointment of Mr Donie O’Shea as the Independent Support Liaison Officer who will engage directly with the families involved in recent allegations on the RTÉ Prime Time programme regarding dossiers on autistic children. Mr O’Shea is well versed in the challenging experiences that families have had in pursuit of supports for their children with disabilities.

“On a day such as World Autism Awareness Day where Minister Rabbitte has just announced the development of an Autism Innovation Strategy, we also need a firm commitment that the State culture of adversarial litigation rather than that of investment and intervention is consigned to the past. The State knows its obligations which are set out in our Constitution, legislation, and the United Nation Convention of the Rights of People with Disabilities. It is time that it lived up to them and not put children with disabilities and their families through the torment of having to take legal action.”

The Department of Health announcement is available here.

Teacher allocation freeze ‘effectively a cut’ for special education

Inclusion Ireland have described the proposed allocation of special education supports for the 2021/2022 school year – a freeze at the previous year’s levels with no increased allocations, as effectively a cut for children with special educational needs.

Last week the Department of Education informed schools that existing Special Education Teacher Allocations would be maintained for schools for the coming academic year. No school profiling to assess the need for supports will be undertaken this year.

Speaking today, Lorraine Dempsey, interim CEO of Inclusion Ireland, said: “There is serious concern around the allocation of Special Education Teacher Allocations for next year, and we fully support the school management bodies who have raised this issue with the Minister for Education.

“Freezing allocations at existing levels is effectively a cut in support for developing schools – they will be forced to do much more, catering for a new intake of students, with the same resources, and ultimately it’s the children with additional educational needs who will lose out.

“This decision must be reviewed and, at the very least, the process for applying for additional supports must be simplified and fast-tracked. Children with additional educational needs really lost out during the pandemic, and this year will be vitally important for them. Teachers and schools must have every support they need to assist them.”

Inclusion Ireland welcomes DPC investigation into Department of Health

Inclusion Ireland today welcomed the decision by the Data Protection Commissioner (DPC) to open a statutory inquiry into data collection processes by the Department of Health.

Speaking following the announcement by the DPC, Loraine Dempsey, interim CEO of Inclusion Ireland, said: “We welcome this morning’s announcement by the DPC that they are opening a statutory inquiry into data processing practices at the Department of Health. We hope that the investigation is completed quickly to reassure families that their personal data is not being held for inappropriate purposes.

“After the Prime Time exposé, every family who has interacted with State agencies or advocated on behalf of a child with a disability is wondering if their information has been retained, or collated. Faith in the system has been seriously damaged.

“The Department of Health must act quickly to restore trust, by contacting all families affected by this issue as soon as possible. They must also make supports available to the families affected by this, many of whom will be understandably upset.”

RTÉ Investigates: Faith in system seriously damaged following dossier revelations

Inclusion Ireland, the national association for people with an intellectual disability, said today that the RTÉ Investigates programme, aired last night on Prime Time, has seriously damaged faith in the system among people with disabilities and their families.

The programme detailed how the Department of Health has been secretly using information from private doctor consultations to build and maintain dossiers on families who were involved in legal actions against the State.

Speaking this morning Lorraine Dempsey, interim CEO of Inclusion Ireland, said: “We have been contacted by many parents extremely upset and distressed at what they saw last night. We know that 50 children are affected by this investigation, but every family who has interacted with State agencies or advocated on behalf of a child with a disability is now wondering if their information has been retained, or collated. Faith in the system has been seriously damaged by the revelations.

“The Department of Health must act quickly to restore trust, by contacting all families affected by this issue as soon as possible. They must also make supports available to the families affected by this, many of whom will be understandably upset.

“We welcome that the Data Protection Commissioner has been in contact with the Department of Health already. We’re calling for a full independent investigation into this practice to establish how widespread it is, how many people are affected, and if people’s rights to privacy have been breached. There are question marks under equality laws as to whether children with autism have been targeted too.

“Finally, we need to refocus on the basics here – and ask why parents needed to take legal action against the State to vindicate the rights of their children. The State needs to focus on providing the supports and services required for children with intellectual disabilities and autism to live full and happy lives. It has to stop treating vulnerable families as hostile for seeking help.”

The RTÉ story can be found here

Online Course: Living Well programme for Caregivers

Are you a caregiver?

Building Better Caregivers: classes are highly participatory, where mutual support and success build the participants’ confidence in their ability to manage their caregiving tasks and maintain a fulfilling life.

What is the Living Well programme?

Living Well is a FREE online group programme, delivered over seven workshops (1.5hrs x 1 introduction & 2.5hrs x 6). This is a self-management programme is for caregivers with the aim of improving your quality of life to better manage your daily health. Living Well can help you develop the skills and confidence to manage your health condition(s). It is delivered by two trained leaders, one or both of whom are peers who are or have been family caregivers.

Why join the Living Well programme?

People who are supported in this way increase their knowledge, skills and confidence to better manage their health in partnership with their health care provider. Subjects Taught:

  • Caregiver stress
  • Dealing with difficult care partner behaviours
  • Getting help
  • Making decisions about treatment, housing, etc.
  • Communicating effectively with family, friends, and health professionals
  • Dealing with caregiver and care partner difficult emotions
  • Planning for future needs and more

When:

Starting on Monday January 25th – 10am-12.30pm for 7 Weeks – Finished

Starting on Tuesday March 30th – 7.00pm – 9.30pm for 7 Weeks – Places Available

Starting on Wednesday April 7th – 3.00pm – 5.30pm for 7 Weeks – Places Available

How: For more information or to register, contact the Living Well Coordinator Leah Harrington: 0873654392 Email: leah.harrington@hse.ie or Visit: www.hse.ie/livingwell

See brochure below!

Department of Health dossier revelations ‘a gross breach of trust’ for families and children

Inclusion Ireland, the national association for people with an intellectual disability, has described revelations by RTÉ Investigates today that the Department of Health compiled secret dossiers on autistic children and their families as a ‘gross breach of trust’, and called for the families affected to be notified.

The investigation, which will be broadcast on RTÉ Prime Time tonight, revealed that the Department of Health has been secretly using information from private doctor consultations to build and maintain dossiers on families who were involved in legal actions against the State.

Speaking today, Lorraine Dempsey, interim CEO of Inclusion Ireland, said: “While we await the full details to be broadcast tonight, the details we’ve seen so far this morning constitute a gross breach of trust for families and autistic children. It is highly disturbing to think that sensitive information is being collated in this manner – when families are at a low ebb and seeking help from the State, to be potentially weaponised later during legal disputes.

“How can families have confidence in a system that exploits their vulnerability in this way? How can they trust a system that shares confidential medical information without their consent or knowledge? The families affected must be notified – their personal data is their own.

“We need to know how widespread this practise is – does it extend further in the Department of Health? And the Department of Education? Is this standard practice in State bodies? We need a fully transparent investigation into this issue by the Data Protection Commissioner – not least for the families affected.”

The RTÉ story can be found here.

Seminar Series: Future Planning for Young People with Intellectual Disability, Post School Options

Future Planning for Young People with Intellectual Disability, Post School Options

Webinar Series in April 2021, Tuesdays 11-12. Use this link here to register.

April 6th, Decision Making

Alison Doyle from Caerus Education will present an overview on post school options in Ireland.

April 13th, Education

Des Aston from the Trinity Centre for People with Intellectual Disability will present on third level options.

Speakers from five of the programs from the Inclusive National Higher Education Forum will also present.

April 20th, Employment

Marie Devitt from the Trinity Centre for People with Intellectual Disability will present on the Pathways to Employment Programme and a student will share his experience.

Des Henry from WALK will present on employment and training options and students will speak to their experience.

April 27th, Community Supports

The Muiriosa Foundation, a HSE Service, will present on the policy of New Directions for a person living in community.

Avril Webster, a parent, and active in the newly formed Inclusive Living Network, will speak about an alternative vision for life in the community.

 

Please submit questions prior to the event to Petria Malone, petria@inclusionireland.ie, 086-8373454

For further information on Inclusion Ireland, click here or explore membership here.

The poster is available here.

The Easy to Read version is available here.

Disability and Carers Groups secure commitment from Ministers Foley and Madigan for increased supports and consultation to ensure children with additional needs are the priority moving forward

Groups highlighted to Ministers members anger and disappointment at being left behind in the return-to-mainstream school plan
The four leading advocacy groups representing students with additional needs, Inclusion Ireland, Down Syndrome Ireland, Family Carers Ireland and AsIAm, met today with the Minister for Education, Norma Foley TD, and Minister for Special Education and Inclusion, Josepha Madigan TD. The groups requested the meeting to highlight the anger of families of some 20,000 children with additional needs in mainstream school who were de-prioritised by the Department in the first phase of the re-opening of mainstream schools.
The Department of Education had previously committed that children with additional needs, in special schools, classes and mainstream, would be the priority group for the return to school and secured NPHET approval for this decision prior to the initial planned reopening on the 20th January. Subsequently, a decision was taken to prioritise whole class groups over students with additional needs and so whilst children from Junior Infants to 2nd class and 6th year students returned to school on Monday, children with additional needs between the ages of 9 and 17 remained at home.
Speaking after the meeting, a spokesperson for the four organisations said:
“We communicated to the Ministers our deep disappointment both at the lack of in-school support for many children with additional needs, who cannot engage in education remotely, and the Department’s failure to communicate the decision and its rationale to families. The organisations emphasised the need to ensure that children with additional needs became the priority for the Department moving forward.
“We are conscious that even as children return to school in the weeks ahead, many will have lost key coping mechanisms and have greater support needs in school during the transition period. The Department has committed to an enhanced Summer Provision Programme and to work to secure as many schools participation in the programme as possible. The Ministers also agreed to ensure that the supports available to families through the Supplementary Scheme are communicated to schools and families and that work will continue to enable the service to operate through schools and from school buildings, outside of school hours.”
The groups requested and secured agreement from the department that children with additional needs voices must be heard on an ongoing basis by Departmental officials moving forward and the Ministers have agreed to establish a formal mechanism, with a terms of reference, to consult with our groups on relevant policy issues and programmes moving forward to ensure that the lived experiences of children and their families are at the heart of the decision making process moving forward.

Advocating For Your Child – CFN Information Sessions March 2021

Our 2021 Connect Family Network Information Sessions started yesterday with an introduction to the UNCRPD presented by Guillaume Jacquinot and Barry Lynch, Inclusion Ireland Team. Thank you to all who attended.

Our next 2 presentations will be on Education – Advocating for your Child. Due to the current restriction both sessions will be online via Zoom and in the evening time which we hope will suit families busy during the day with home-schooling. All are welcome.

The first session, in partnership with Involve Autism (Dublin 6, 6W and Surrounds) will be on Wednesday 3rd March 7pm – 8pm. You can register in advance by clicking here.

After registering, you will receive a confirmation email containing information about joining the meeting. Full details here.

The second Education – Advocating for Your Child presentation, in partnership with Parent Led Autism Network PLAN Dublin 15, will be on Wednesday 24th March 7pm to 8pm. Please Register in advance by clicking here.

After registering, you will receive a confirmation email containing information about joining the meeting.
Contact mary@inclusionireland.ie or Alex at admin@inclusionireland.ie or 01 8559891 for information or support with registration. Full details are available here.

For more information about future 2021 Information Sessions click here.

We have partnered with family support groups around the country to organise and share information about events. With their help we can reach a wider audience and give people with disability and their family members a stronger voice. Thank you to our 2021 event partners.

No consultation on changes to school re-opening plan that will negatively affect 20,000 children with additional needs – Disability and Family Carer Groups

No consultation on changes to school re-opening plan that will negatively affect 20,000 children with additional needs – Disability and Family Carer Groups

Representative groups waiting over a month for engagement from Government on special education issues

Four leading advocacy organisations representing children with special educational needs and their families, AsIAm, Down Syndrome Ireland, Family Carers Ireland and Inclusion Ireland, have criticised the Government for making significant changes to plans to re-open schools on a phased basis with no prior consultation with disability representative organisations. The changes announced this evening will negatively affect almost 20,000 children with additional educational needs.

The announcement, made by Taoiseach Mícheál Martin, will see approximately 20,000 students with additional needs fall behind almost 300,000 students in Junior, Senior, First and Second class in the order of returning to school, despite the Government repeatedly stating that children with additional needs would be prioritised.
Speaking following the Taoiseach’s address, a spokesperson for the groups said:

“We are incredibly disappointed for thousands of children and families we represent who, having been told repeatedly by Government that their return to school was the absolute priority, now find themselves completely de-prioritised. The fact that this has come with no prior consultation with their representative groups only adds insult to injury. We have repeatedly sought to engage with Government and with Minister Foley to highlight the issues facing children with additional educational needs in mainstream classes and more specialist settings but have received no substantive engagement or correspondence in over a month.

“To be clear – we recognise the need to get all children back to school, and the impact school closures is having on all groups. But they are having a significantly more severe impact on children with additional educational needs, who cannot access remote learning in the majority of cases. These children need to be the priority – but now they are being told that they won’t be back until everyone is back. There is a sense from Government that the mission was accomplished when the partial re-opening of special classes and schools was announced, even though the majority – over 20,000 students with additional needs – attend mainstream classes and have not returned to school. Despite the announcement of a supplemental support scheme – which parents have found inaccessible and unworkable for many– these children are still waiting for progress.

“There is a sense tonight that children with additional needs have been left behind, their interests relegated and de-prioritised. We are once again requesting clarity for these children from Government tonight – and calling on the Government and the Department of Education to drastically improve their communications and engagement with representative groups, which has been critically lacking in recent weeks.”

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