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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 

Wednesday 16th of August 2023

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.

In putting together Inclusion Ireland’s Budget Submission for 2024 we consulted with people with intellectual disabilities and their families.

Housing was one of the main concerns for people who completed our survey. Our survey found that:

• 72% of people with intellectual disabilities said that they were living with their family and 40% of these individuals wanted to move out.
• 51% of respondents who support people with intellectual disabilities said that the person was living with a family member, with 15% of respondents living with a parent over the age of 70.
• Only about a third of people who said they wanted to move house were actually on a housing waiting list. Nearly half of those on the housing list had been on it for more than 5 years including nearly 20% of people who are waiting over 10 years.
• Respondents who support people with intellectual disabilities were asked to identify the main barriers to housing and independent living. Our respondents pointed to a lack of:
  • 41.5% support package/services.
  • 11.5% funding for Personal Assistant hours.

Article 19 of the UNCRPD reaffirms the right of people with disabilities to live independently, to be included in the community with the supports needed to live a good life.

Around 3500 people are still living in congregated/institutional settings (2,279 according to HIQA Annual Report 2022) or unsuitably placed in nursing homes (300 according to the Wasted Lives Report) while thousands of others are living with families, including older family carers, and have been waiting for many years to move into a home of their own.Beyond the numbers, much of the current model of service provision is outdated and disempowers people with intellectual disabilities. “Services” need to be deeply transformed to better allow the allocation of funds to beneficiaries and their advocates/ families through personal budgets and creative community-based models of support.

There is a need for a transition from “service provision” where the disabled person passively “receives” a service towards a person led approach in the way in services are designed, provided, and monitored.

We call for a fully costed and funded plan to support the remaining residents from congregated settings and inappropriately placed in nursing homes into community settings over a five-year period.

This plan would include:

• A number of places for services available:
  • 450 residential places for people coming from congregated settings
  • 300 places for people moving out from nursing homes
  • 90 new supported living packages to match demographic changes
  • 20% increase from current levels of provision of personal assistance hours and home support
• An increase in the number of personalised budget arrangements allocated so that people can continue to live in their own homes and/or with family members leading self-directed lives outside of “traditional/residential” arrangements.
• Ensure the training of all staff working with disabled people in services around the UNCRPD and a rights based, inclusive and community first approach.
• Fund organisations which have a track record of delivery on community and rights-based approaches.
• Capacity building/training and support must be made available to individuals who require it to support their independent living. This should include managing a home budget, home maintenance, community inclusion, using transport, etc. Funds should be made available to provide this practical support.
• Review the criteria to grant access to personal assistance hours. Personal assistance should be based on needs, not diagnosis.

“A disabled person should be able to access supports to live independently regardless of their level of impairment or support need once they reach the top of the housing list. The new housing strategy for disabled people has to ensure equity of access to housing, no matter what level of support a person needs, otherwise the strategy is potentially discriminatory.”

Derval McDonagh, CEO, Inclusion Ireland

You  will find Inclusion Ireland’s full Budget Submission for 2024 on our website here: https://inclusionireland.ie/wp-content/uploads/2023/07/Budget-Submission-2024-Final.pdf

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

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 are fearful about who will support their loved ones 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 euros 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 settings and nursing homes can all be supported to move out. Specific action plans need to be in place to accelerate both the congregation and the move of people inappropriately placed 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 the Government is responsive to their most fundamental needs.

Inclusion Ireland are delighted to launch a report on Communication as a human right: Report on Alternative and Augmentative Communication Seminar October 19th 2022 Final 1. The report follows a seminar on Alternative and Augmentative Communication, held in partnership with Irish Association of Speech and Language Therapists which was led by AAC users themselves. The seminar celebrated the ways in which people communicate other than speaking, through their gestures, signs, eyes and technology.

You can access the full report here: Report on Alternative and Augmentative Communication Seminar October 19th 2022

In the spirit of AAC and supporting people to communicate in the way that they choose, we have also created a summary video which you can watch here.

Alternative and Augmentative Communication (AAC) users, experts and policy makers explored the pathway to ensuring everyone’s communication is valued and everyone gets the support they need to access their rights. This included examining good practice, barriers to AAC and putting forward recommendations to improve access and use of AAC in Ireland. The event was also attended by representatives from the HSE and the National Council for Special Education, bringing together the policy and practice in our education and health sectors:

The recommendation included actions around the areas of:

• Collaboration between the sectors of Health and Education
• Policy and Guidance Development
• Resources to improve Access to AAC
• Funding Pathways of AAC
• Culture and Attitudes around ACC throughout the lifespan of the user
• Training in and Knowledge of AAC
• Representation and Visibility of AAC users
• Importantly at the seminar AAC user Aisling Mason quite simply said: “My AAC reader lets me live the life I want to live”

This report captures the positive stories of AAC, the barriers to AAC, and the solutions to making it more widely accessible, available and accepted by all.

Derval McDonagh CEO of Inclusion Ireland says, “People have a right to communicate in the way that suits them best. We must honour and value the use of AAC just as we value when people use speech to speak up. Our voice goes beyond speech and AAC shows us this. We commit to following up on all of the actions we outline in this report and to continue to work alongside AAC users to advocate for change until every person who needs AAC has access to it, with the support they need to be heard”.

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.

Inclusion Ireland has worked with civil society organisations and the Children’s Rights Alliance, to ensure that children with intellectual disabilities will be included in representations to the United Nations Conventions on the Rights of the Child (UNCRC) Committee this week. A delegation from Ireland will present on Tuesday 23rd January and Wednesday 24th of January in Geneva. The Children’s Rights alliance issued an alternative report called “Are we There yet” in which it details the impact on children of the lack of rights and supports in many areas of Irish life. The key areas of concern Inclusion Ireland have for children with intellectual disabilities include:

No representative advocacy for children with intellectual disabilities
Most children with an intellectual disability in Ireland do not have access to independent advocacy services and supports causing children and their families to struggle to navigate a complex system through health, social care, education and services and supports. Children must engage with multiple teams to access the services they need. There are little to no wrap-around supports which could contribute to the holistic development of each child so they can have their rights upheld. Opportunities for children with intellectual disabilities to participate in decisions and matters that impact on them and have their voices heard are too limited, they are often overlooked and forgotten

Difficulty accessing inclusive education
The EPSEN Act 2004 is currently under review, many parts of it have not been commenced and some provisions contained in it go against UNCRPD which Ireland ratified in 2018. Human rights instruments have moved on since 2004 and we must change education to make it fully inclusive for all.

2% of pupils (16.000) are access their education through special schools and special classes. The majority of these pupils have an intellectual disability. In special schools there is no access to career guidance, limited choice of subjects, and often no formal examination or pathway to achieving certification within the framework of the current curriculum. This leads to low expectations as to what can happen after education in terms of further education and training and opportunities for employment.

Many children travel over an hour each morning to go to their special schools, when there are often multiple mainstream schools closer to home. This level of travel can have substantial detrimental effects on both the physical and mental health of the child.

Children with an intellectual disability are still experiencing seclusion and restraint in school. Children can be secluded from the classroom or restraint, in a number of forms, used at school which precludes children from accessing their right to education. It should be noted the Irish authorities have not yet published long awaited guidelines on seclusion and restraint which will provide much needed direction in the education sector on this important issue.

Lack of children’s therapeutic services
Children are experiencing falling through the cracks due to lack of access to mental health services for children with an intellectual disability. The level of Mental Health Intellectual Disability (MHID) services remains at 33% for Adults and 12% for Children and Adolescent Mental Health (CAMH-ID) of what was envisaged by the previous mental health strategy “A vision for change”

Children also experience a severe lack of therapeutic services Inclusion Ireland conducted a Parent survey with more than 1000 families and found:

Over 50% of the families of children surveyed are not in receipt of any service.
Many parents reported that their child spent a significant time on a waiting list for services. 85% wait for more than a year.
Tamara Byrne, self advocate and youth affairs spokesperson for Inclusion Ireland says; “For a long time adults with intellectual disabilities didn’t have their voice heard. People thought we couldn’t speak up. People often think that about young people too but they deserve to have access to advocacy, inclusive education and therapeutic supports so they can have the same rights as everyone else and be the best they can be”.