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Tuesday 5th of September 2023

Inclusion Ireland were saddened, shocked but not surprised to read the ‘Nowhere to Turn’ report released by the Ombudsman for Children today.

The report details the harrowing circumstances where children with intellectual disabilities and their families are left with nowhere to turn other than admitting their child to hospital when they need support. The stories in the report speak of children being ‘medicated’ or chemically restrained and children spending months in a ward in hospital even though they have no medical reason to be there. This is an abject failure on behalf of the state to plan for children’s futures.

Derval McDonagh, CEO of Inclusion Ireland states:

‘Sadly, this has been happening for years. In 2023, it is a stain on our country that children with intellectual disabilities have to go through this trauma, especially when their families have cried out for help, often for years.

Many of these children cannot rely on speech to communicate and need support in all aspects of their daily life. This does not make them any less of a child – although their treatment is dehumanising. Band aid solutions are not the way forward, they might provide some support in the short term but do nothing to support the child in the long term to have a decent quality of life as part of a supported loving family.

The only solution is a careful plan with each child and family that takes into consideration their unique circumstances and needs. Planning with children and families needs to happen as early as possible, with tailor-made solutions for each child. Sadly in the system we have currently, we continue to lurch from crisis to crisis landing to emergency responses which cannot by their nature focus on the rights and dignity of the child.’

Where is the child’s voice in all of this? We are calling on Government to publish, in advance of the budget, the Disability Capacity Review Action Plan. This at least goes some way towards beginning the process of planning with people over time, rather than fire fighting. We have to do better by these children.

Inclusion Ireland will write to the various Ministers and the HSE today again and highlight our call for immediate, urgent action. We will also push for the development of a children’s advocacy service, children must be supported to have their voices heard.

 

The full report ‘Nowhere to Turn’ is available on the Ombudsman for Children website at this link: https://www.oco.ie/library/6483/#

 

For further information contact Caoimhe Suipéil, Communications Officer, Inclusion Ireland at 086-2265813 or caoimhe@inclusionireland.ie 

As we enter the planning phase for Budget 2024, it is important to reflect on the real-world issues facing people with intellectual disabilities and their families.

People with intellectual disabilities have waited long enough to have their rights fulfilled, five years after Ireland ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD).

Budget 2024 provides an opportunity to invest in people. Significant reports and strategies were published throughout 2021 and 2022 namely:

• The Cost of Disability Report
• The Disability Capacity Review
• The Housing Strategy for Disabled People 2022-2027

 

As of yet, only one implementation plan has been published – The Housing Implementation Plan – which was published on the 22nd of June 2023. Without a plan we lurch from crisis to crisis, when what we need is to have creative and rights-based supports in place for people.

In putting together this submission we consulted with people with intellectual disabilities and their families. We received 615 responses to the survey: 115 were from people with intellectual disabilities, 252 were family members of disabled children and 228 were family members of disabled adults.

The top 3 priorities for people with intellectual disabilities are:

1. Housing and Independent Living Support
2. Money and the Cost of Disability
3. Employment and Training

Transport was also highlighted in the comments as one of the concerns for people.

The 3 top priorities for family members of a child with an intellectual disability are:

1. Access to Services
2. Education
3. Cost of Disability

 

The 3 top priorities for family members/supporters of an adult with an intellectual disability are:

1. Housing and Independent Living Support
2. Employment and Training
3. Access to Services

 

“Whatever funds are made available should be about advancing the human rights of people with intellectual disabilities as equal citizens. What is also clear is that creativity and a more radical view of support is required, the old ways simply do not work for people anymore.” – Derval McDonagh, CEO of Inclusion Ireland.

We need a budget which is focused on equality, human rights and belonging. We call on the Government to listen to the words of people echoed throughout this budget submission and to respond by putting forward a budget that acknowledges the right of people with intellectual disabilities to live equal, dignified lives into 2024.

You can access our full Budget Submission for 2024, our Survey Infographic and Accessible Information video at the below links:

• Inclusion Ireland Budget Submission 2024
• Budget 2024 Survey Infographic
• Budget Submission 2024 Information Video

You can access the Code of Practice for Journalists here.

You can access the Code of Practice for Self-Advocates here.

Each Year the Government bring out a report they call the Budget.

The Budget tells us what the Government will spend money on for 2024.

We want to know what you think.

We want to know what is important to you.

There are 3 options for filling out the survey, on the first screen please choose whichever option is most relevant to you:

1. Person with an intellectual disability
2. Parent/ supporter of a child with an intellectual disability
3. Parent / supporter of an adult with an intellectual disability

Please fill this survey out by Sunday 21st of May.

This is the link to the survey: https://www.surveymonkey.com/r/MCL96T5

Thank you for taking part.

We are pleased to put in our submission for the Statement of Strategy 2023-2025 from the Department of Housing, Local Government and Heritage. The Strategy Statement serves as a framework for the department’s work, structured around the department’s mission and six strategic goals. It provides information on how progress in achieving those goals will be monitored, by identifying measurable outputs, outcomes and performance indicators. You can read more about it here

The housing crisis faced by disabled people in Ireland needs an ambitious strategy. People with intellectual disabilities and their families have waited too long.

Every day at Inclusion Ireland we hear the stories of the impact on people’s lives. Carers fearful about who will support their loved one when they die. People with intellectual disabilities are stuck living in situations that are unsuitable, inappropriate and a denial of their basic human rights.

The Statement of Strategy for the period 2023 to 2025 has to address these diverse needs through a multi-faceted approach. If the compelling recommendations of the Disability Capacity Review are not implemented in the short term, this lack of action will result in an increase in the provision of emergency responses that fall far short of our obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

For the period 2023-2025, the Statement of Strategy needs to focus on accelerating the implementation of the Disability Capacity Review and act on the following areas:

• Making adequate investments (410 million euro recommended for Budget 2023) to meet the housing needs as specified in the Disability Capacity Review. This will ensure that people living at home with their families can move into a home of their own, with whatever support they need to do so. This has to include people who may need minimal support to live in a home of their own to people who need around the clock or intensive support to live independently. No one can be left out of this  plan based on their support needs.
• Increased investment should be made during the next 5 years to ensure that people inadequately placed in congregated setting and nursing homes can all be supported to move out. Specific action plans need to be in place to accelerate both the decongregation and the move of people inappropriately place in nursing homes. To deliver on this objective, a comprehensive and creative workforce planning strategy needs to be urgently implemented.
• More clarity is needed around the number of people moving from congregated settings and nursing homes into the community every year. Clarity is also needed on the part of the budget allocated to this goal along with the exact number of people with an intellectual disability on the Housing List.

 

Service providers are currently lurching from crisis to crisis with little scope to properly plan with people around the most critical aspect of many of our lives; a home to call our own. The right to a home, in a community of our choice is something many people take for granted but is a distant dream for too many people with intellectual disabilities. This strategy needs to acknowledge this and set out ambitious steps which will reassure people with intellectual disabilities and their families that Government is responsive to their most fundamental needs.

We are delighted to launch our report ‘The Pathway to Inclusive Education’

In late 2022 we hosted a seminar ‘The Pathway to Inclusive Education.’ This in-person event brought together people with intellectual disabilities, disabled people, Disabled Persons Organisations, family members, people working within the education sector, policy makers and politicians.

You can read the full report from the seminar here: The Pathway to Inclusive Education – Conference Report and Inclusive Education Alliance Formation 2023

You will also find an accessible video version of the report here: https://youtu.be/zcGmq_AzWck

Inclusion Ireland will continue to campaign for a fully inclusive model of education in line with the UNCRPD and UNCRC.

If we are to realise the vision around all children going to school together, with whatever supports and accommodations they may need, then this will require a movement for change, one we are invested in fully at Inclusion Ireland.

As part of the seminar, we also  introduced work around the development of an “Inclusive Education Alliance”. The pathway towards a fully inclusive model of education will require a movement for change. We want to create opportunities for people to come together and collaborate on this journey.

If you would like to become a member of the Inclusive Education Alliance email info@inclusionireland.ie  and a registration form will then be sent to you to complete.

 

We have completed our submission as part of the Review of the Education for Persons with Special Educational Needs (ESPEN) Act 2004.

 

In this submission we highlighted the key points below:

 

– The EPSEN Act must be reviewed in relation to state commitments under the UNCRPD and then commenced without delay.

 

– The name and language of the act should be changed to “The Inclusive Education Act”- removing references to “special educational needs” which will then include all children in the state.

 

– The parts of the EPSEN Act 2004 that give the statutory right for children to have an assessment of their education needs and access to the supports identified in such assessments need to be commenced.

 

– We are calling for a fully costed, cross government multi-annual Inclusive Education 10-year plan. The journey towards an inclusive education model will require significant additional resources, attitudinal change, fully accessible and flexible school buildings and supported, skilled school staff.

 

– We are calling for the Disability Act to be reviewed in parallel with the EPSEN act. These two pieces of legislation have to be effective and work together so that children can access their rights.

 

– We call for specific amendments to the act including additions around rights-based training for educators as well as reference to seclusion and restraint in the Act.

Seclusion and restraint remains a children’s rights issue that Inclusion Ireland continue to advocate on.

Right now, there are no guidelines or legislation protecting children from these harmful practices, including being secluded on their own or restrained in some way throughout the school day. We know most schools support children in ways that are rights focused, sadly however we do not know the full extent of where children are experiencing restraint or seclusion as there is no data gathered by the Department of Education or the National Council for Special Education (NCSE). The United Nations on the Conventions on the Rights of the Child, UNCRC recently looked at Ireland as a country being monitored in terms of Children’s rights and they called Ireland out on the issue of seclusion and restraint and the need to ban such practices. We are asking questions now around when the Government and the Department of Education will act on this issue?

You can read our notes on ‘(The need for) Statutory guidance on seclusion and restraint in educational settings’ below to see what Inclusion Ireland calls for : 

(The need for) Statutory guidance on seclusion and restraint in educational settings.

 

DPCN Coordinator – Fixed Term Contract