Improving the quality of life of persons with intellectual disabilities and their families

Expected Outcome:

This topic aims at supporting activities that are enabling or contributing to one or several expected impacts of destination “Staying healthy in a rapidly changing society”. To that end, proposals under this topic should aim to deliver results that are directed at, tailored towards and contributing to several of the following expected outcomes:

• Persons with intellectual disabilities and their families enjoy an improved quality of life, are empowered and have more independence through the support of innovative research.
• The scientific community develops innovative solutions - medical, technological, digital or others - to reverse and/or reduce the severity level of the intellectual disability as soon as possible, especially in children, improving the health and autonomy of persons with intellectual disabilities and relieving their carers.
• Policymakers, health and care services, patient organisations, funders, the scientific community, and other relevant bodies are informed of the research advances and best practices addressing the health and needs of persons with intellectual disabilities and help reduce the impact of those disabilities on individuals, their families and society.

Scope:

The scope of this topic is set by the definitions provided by ‘The international classification of diseases’ - World Health Organization (WHO) ICD11 under ‘6A00: Disorders of intellectual development’^[1]and under ‘20: Developmental anomalies’ ^[2]including disorders of intellectual development, such as ‘LD40: Complete trisomies of the autosomes’^[3]and ‘LD90: Conditions with disorders of intellectual development as a relevant clinical feature’^[4]. Moreover, the three types of autism with disorders of intellectual development (6A02.1, 6A02.3 and 6A02.5) under ‘6A02: Autism spectrum disorder’ ^[5] are also within the scope of this topic.

The focus of this topic is human-centred on the persons with long-term intellectual disabilities^[6] and their formal and informal carers, including families. The life expectancy of persons with intellectual disabilities has increased in the last 20 years, which makes it even more important to analyse the role of their families acting as informal carers (e.g. ageing parents).

The objective of this topic is to explore new ways to improve the quality of life of persons with intellectual disabilities and their families and to reduce to the maximum possible the negative impact of the disability in their daily lives from different perspectives, such as medical, technological, digital or others. A key element to improve their quality of life is to prevent the worsening of the disability or conditions originating it. Thus, research needs to look from different perspectives into finding the causes of the disease(s) originating the disability and/or reducing as much as possible its level of severity.

Innovative solutions are needed to provide novel medicines, diagnoses, treatments, protocols, technologies or digital solutions, etc. that can help in an early stage to prevent the worsening of the intellectual disability and/or related co-morbidities, reverse or reduce it, and to improve the autonomy of affected persons and relieve their carers.

Research actions under this topic should address several of the following areas:

• To properly diagnose as early as possible the disease(s) causing the intellectual disability or conditions worsening them, especially in the case of children, and paying attention to sex and gender-related differences and diagnostic biases.
• Deliver the necessary medical treatments, diagnoses, medicines, protocols, technologies, digital solutions, habilitation and/or rehabilitation services, etc. that can help preventing the worsening of the intellectual disability, reversing it or reducing its severity, while supporting the empowerment of the person with intellectual disabilities. Any health technology or medical intervention developed for human use must comply with the relevant regulatory requirements and be based on sound scientific evidence to ensure safety and efficacy.
• Tackle comorbidities or other disabilities that persons with intellectual disabilities may suffer from, with awareness of sex and gender-related differences.
• Provide evidence-based approaches for transitional care for young adults with intellectual disabilities, addressing also sex and gender-specific challenges and needs, the transition from paediatric to adult care being perceived as complex to navigate.
• Promote the empowerment among persons with intellectual disabilities and their caregivers, and whenever possible remove barriers persons with intellectual disabilities face for their participation in society. If applicable, with the support of assistive technologies and digital solutions, ensure optimal autonomy of persons with intellectual disabilities, facilitate and improve the treatment of persons with intellectual disabilities, and help also the family members and close carers to better support persons with intellectual disabilities. Such technologies must adhere to the relevant standards and be grounded in scientific evidence.
• Propose innovative solutions for high quality, accessible - including cognitively accessible - and affordable care services, to allow carers of persons with intellectual disabilities to better balance their work and family lives. The role of informal/unpaid carers, especially family members, is of key importance for persons with intellectual disabilities. For many persons with intellectual disabilities, the lack of care services and insufficient support for families and personal assistance undermines their quality of life and their rights and possibility to live as independently as possible.
• Develop innovative integrated care strategies - strengthening patient-centred care - to improve the Quality of Life of persons with intellectual disabilities of any age, and their families, paying special attention to persons with intellectual disabilities with the highest vulnerability because of their high dependency on carers (formal and/or informal), multiple disabilities and need of adapted and special care (medical, social, educational and psychological dimensions).
• Develop guidelines in order to provide adequate support and training for caregivers, formal and informal, especially for those providing care for persons with intellectual disabilities and/or living with them, and also addressing the issue of prevention of and protection from violence since persons with intellectual disabilities are both vulnerable to violence and abuse and can be violent towards care givers and family members.

Applicants are encouraged to include patients, their families and carers in the different stages of the research. Likewise, it is encouraged to involve stakeholders from within and outside the intellectual disabilities sector, in particular policymakers and public authorities, citizens and civil society organisations, end-users and service providers.

This topic requires the effective contribution of social sciences and humanities (SSH) disciplines and the involvement of SSH experts, institutions as well as the inclusion of relevant SSH expertise, in order to produce meaningful and significant effects enhancing the societal impact of the related research activities.

All projects funded under this topic are encouraged to participate in networking and joint activities, as appropriate. These networking and joint activities could, for example, involve the participation in joint workshops, the exchange of knowledge, the development and adoption of best practices, or joint communication activities. Therefore, proposals are expected to include a budget for the attendance to regular joint meetings and may consider covering the costs of any other potential joint activities without the prerequisite to detail concrete joint activities at this stage. The details of these joint activities will be defined during the grant agreement preparation phase.

Projects are also encouraged to explore potential complementarities with projects funded under the Cluster 2 topic HORIZON-CL2-2025-01-TRANSFO-09: “Good practices for increased autonomy of persons with disabilities, including physical, mental, intellectual and sensory disabilities” are encouraged.

Applicants invited to the second stage and envisaging to include clinical studies^[7] should provide details of their clinical studies in the dedicated annex using the template provided in the submission system.

[1] Disorders of intellectual development are a group of etiologically diverse conditions originating during the developmental period characterised by significantly below average intellectual functioning and adaptive behaviour that are approximately two or more standard deviations below the mean (approximately less than the 2.3rd percentile), based on appropriately normed, individually administered standardised tests. Where appropriately normed and standardised tests are not available, diagnosis of disorders of intellectual development requires greater reliance on clinical judgment based on appropriate assessment of comparable behavioural indicators. See also https://icd.who.int/browse/2024-01/mms/en#605267007

[2] https://icd.who.int/browse/2024-01/mms/en#223744320

[3] https://icd.who.int/browse/2024-01/mms/en#948835301

[4] https://icd.who.int/browse/2024-01/mms/en#775270311

[5] https://icd.who.int/browse/2024-01/mms/en#437815624

[6] Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others (Art. 1 of the Convention on the Rights of Persons with Disabilities - https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities).

[7] Please note that the definition of clinical studies (see introduction to this work programme part) is broad and it is recommended that you review it thoroughly before submitting your application.