Resources search

Listen Include Respect: International Guidelines for Inclusive Participation

Inclusion International
June 2022

Expand view

The Listen Include Respect guidelines help organisations understand what they need to do to make sure people with intellectual disabilities are included in their work.

​They were written by Inclusion International and Down Syndrome International.

Over 1,500 people with intellectual disabilities and their families from almost 100 countries helped write them.

The Convention on the Rights of Persons with Disabilities (CRPD) tells us that all people with disabilities have the right to “meaningful participation.”

“Meaningful participation” is what happens when people with intellectual disabilities get everything they need to be fully included, participate equally, and feel valued.

These guidelines will help organisations to make this happen.

Barriers to inclusive employment for self-advocates and families

BIALIK, Kimber
MHIRI, Manel
June 2022

Expand view

This article is about the barriers to inclusive employment that people with intellectual disabilities and families face in Kenya, Uganda, Nigeria, and Bangladesh.

Through the Inclusion Works Project, we worked with our members in Kenya, Uganda, Nigeria, and Bangladesh to talk with self-advocates and family members about employment.

We had 3 consultation meetings with self-advocates and 3 consultation meetings with families – we talked to 54 self-advocates and 45 family members about access to inclusive employment in their countries.

Some of the barriers that they told us about were discrimination from employers, lack of access to education, unfair pay, issues with safety and security at work, and being pressured to choose self-employment.

This article explains some of the issues accessing inclusive employment that people with intellectual disabilities and their families told us they face in low- and middle-income countries.

The article also gives recommendations for how organisations doing work on inclusive employment can work towards addressing some of these barriers and being more inclusive.

 

 Journal of International Development, Volume 34, Issue 5

Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

Expand view

Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

Expand view

This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

Frequently Asked Questions: Questions you have about inclusive education but didn’t know whom to ask

INCLUSION INTERNATIONAL
June 2021

Expand view

Inclusion International is often asked what we mean by “inclusive education”. Here are the most common questions from our members together with our responses. The responses are based on the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and General Comment 4 issued by the UN CRPD committee, which outlines the implications of the CRPD for inclusive education.

Questions:

  • What is inclusive education?
  • What are the differences between exclusion, segregation, integration and inclusion?
  • What are the key ingredients of an inclusive education system?
  • What are some of the steps toward achieving inclusive education?
  • What is the difference between an inclusive education system, an inclusive school and inclusive classroom/practices?
  • What is meant by the “twin–track” approach to funding inclusive education?
  • What is the difference between accessibility and reasonable accommodation?
  • How can teachers provide equal opportunities for all students within their allocated classrooms?
  • Is transforming special schools into resource centres a good strategy for moving towards an inclusive system?
  • What is sometimes called “inclusive education” but is not?
  • What are the benefits of inclusive education for students with disabilities?
  • Is inclusive education good only for students with disabilities?
  • Is inclusive education more expensive than segregation?

The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

Expand view

Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

Expand view

This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

Expand view

Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

Expand view

Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

Expand view

Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Perspectives on access and usage of assistive technology by people with intellectual disabilities in the Western Cape province of South Africa: Where to from here?

BOOT, Fleur H
KAHONDE, Callista
DINSMORE, John
MACLACHLAN, Malcolm
2021

Expand view

Background: Whilst assistive technology (AT) can play an important role to improve quality of life, health inequity regarding access to appropriate AT for people with intellectual disabilities (ID) is still very much present especially in low resource countries.

 

Objectives: This study focused on exploring factors that influence access to and continued use of AT by people with ID in the Western Cape province of South Africa and to suggest potential implications of these findings and actions required to promote access to AT.

 

Method: A qualitative approach was used to explore the experiences of people with ID and providers of AT. Face-to-face interviews with 20 adults with mild to profound ID, and 17 providers of AT were conducted and the data were analysed thematically.

 

Results: People with ID within the study setting faced many challenges when trying to access AT and for those who managed to acquire AT, its continued usage was influenced by both personal characteristics of the user and environmental factors. Important factors that influence AT access and use for people with ID found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify AT need and (3) AT training and instructions to support the user and care network.

 

Conclusion: With the perspectives of both the providers and users of AT, this study identified priority factors, which could be addressed to improve AT access and use for people with ID in the Western Cape province.

Greek Secondary Education Teachers’ Views on Inclusive Education of People with Intellectual Disabilities

GIAVRIMIS, Panagiotis
2021

Expand view

Purpose: This paper aimed to investigate Greek secondary education teachers’ views on people with intellectual disabilities, their inclusion in the typical educational system, and the dimensions of social and educational exclusion that may be associated with it.

 

Method: The qualitative research design involved semi-structured interviews with 18 Greek secondary school teachers.

 

Results: It was revealed that people with intellectual disabilities face educational exclusion for two reasons. The first is because the structure of the education system itself cannot meet their increased needs, and the second is due to the fact that a percentage of secondary education teachers feel negative about their inclusion in the typical education system.

 

Conclusion and Implications: The implemented policy for the co-education of people with intellectual disabilities in Greece is not effective due to endogenous difficulties. It is necessary to orient the educational policy towards an education for all without "filters" of social exclusions.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

Expand view

Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic

FESTEN, Dederieke A M
SCHOUFOUR, Josje D
HILGENKAMP, Thessa I M
OPPEWAL, Alyt
2021

Expand view

Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.


Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.


Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.


Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

Expand view

Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

Expand view

An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

Expand view

Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

Expand view

This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

Funding ≠ Inclusion: Segregation and CRPD Non-Compliance in Official Development Assistance

Inclusion International
November 2020

Expand view

This two-page summary resource compiles key data on the CRPD-compliance of Official Development Assistance (ODA)-funded programmes. This analysis was originally published in Inclusion International's 2020 report, Excluded from the Excluded, which revealed that 36% of projects that included people with intellectual disabilities in 2018 used methodologies that promoted segregation.

 

This summary resource profiles key data on the CRPD compliance of ODA-funded programme methodologies by thematic area - including livelihoods, education, emergency response, and service provision programmes. The summary resource also shares key recommendations for organizations implementing programmes to ensure CRPD-compliance.

Pages

E-bulletin