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Disability Inclusion Helpdesk Report : What works in mental health services and community interventions to support people with mental health conditions and psychosocial disabilities: a rapid evidence review

MILLS, China
AHLENBÄCK, Veronica
HAEGEMAN, Emma
September 2019

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Summaries on the findings from the following queries:

What works to develop quality services and community interventions to support people with mental health conditions and psychosocial disabilities and wellbeing for all, across the lifecycle?

What are examples of effective interventions in this area?

How do we provide mental health support to children with psychosocial disabilities in school?

QURESH, Onaiza
August 2019

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Question & problem

It is estimated that approximately 10-20% of children, adolescents and young people (under the age of 18) worldwide have a disabling mental health condition. Approximately two-thirds of the global youth population goes to school for a significant proportion of the day. The idea of delivering mental health support in the setting has gained prominence as a way to increase the coverage and accessibility of mental health support for children. While there is a wealth of evidence around school mental health approaches in HIC, there is limited information with regards to their impact in low- and middle-income settings. This evidence brief explores what has worked for the delivery of school mental health initiatives in diverse settings, as well as evidence-based recommendations to strengthen them.

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

India inclusion summit 2018

March 2019

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India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

Kazakhstan: Education Barriers for Children with Disabilities

HUMAN RIGHTS WATCH
March 2019

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The video reports that most children with disabilities in Kazakhstan are not getting a quality, inclusive education and that although the Kazakh government has taken some important steps to better protect the rights of children with disabilities, much more needs to be done to ensure equal access to education for all children.

Cases of children with Downs Syndrome, autism and arthritis are highlighted.

Adapting an education program for parents of children with autism from the United States to Colombia

MAGANA, Sandy
TEHERO HUGHES, Marie
SALKAS, Kristen
MORENO ANGARITA, Marisol
2019

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One of the lingering aspects of coloniality in the Americas is paternalism. In Latin America, this power structure plays out among people with autism spectrum disorder (ASD) through beliefs that people with disabilities need to be protected and guarded at home, and that they are unable to learn and function in society. We developed a program to empower parents of children with ASD through peer education to help their children realize their potential. This program was implemented in the United States (US) for Latino immigrant families and then adapted for use in Bogotá, Colombia. In this paper, we discuss some of the ways the manifestations of colonialism have influenced the adaptation of this program from North to South. For example, in Colombian society it is not common to use non-professionals or peers to deliver scientific information because within a paternalistic society there is ‘respeto’ (respect) for persons who are older, male and have credentials. Therefore, promoting the use of peer-mothers in this context was a challenge in the adaptation that warranted compromise. We explore and discuss similarities and differences in the adaptation and delivery between North and South and problematize the idea of Latinos in the US versus Colombia.

 

Disability and the Global South, 2019 Vol.6, No. 1

Visual supports

NATIONAL AUTISTIC SOCIETY (UK)
2019

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Visual supports can be used to communicate with people on the autism spectrum. They are adaptable, portable and can be used in most situations.

Visual supports can help to provide structure and routine, encourage independence, build confidence, improve understanding, avoid frustration and anxiety, and provide opportunities to interact with others. They can make communication physical and consistent, rather than fleeting and inconsistent like spoken words can be.

Different types and uses of visual supports and where to find resources are reported. See some examples and read some top tips.

Adolescents with disabilities: Enhancing resilience and delivering inclusive development

JONES, Nicola
PRESLER-MARSHALL, Elizabeth
STAVROPOLULOU, Maria
July 2018

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This report takes stock of evidence from LMICs, drawing on findings from a thematic evidence review combined with emerging findings from the Gender and Adolescence: Global Evidence (GAGE) survey and qualitative research baseline studies in Bangladesh, Ethiopia, Jordan and Palestine. These interviews involved more than 6,000 adolescents and their caregivers – including approximately 600 girls and boys with physical, visual, hearing or intellectual impairments, alongside service providers and policy actors. The report draws attention to the multiple and intersecting capabilities that need to be supported in order for adolescents with disabilities in LMICs to reach their full potential. It goes beyond a focus on their access to education and health services, and also considers their rights to psychosocial wellbeing, protection from violence, mobility and opportunities to participate within their communities, as well the skills, assets and support they need to become economically independent once they transition into adulthood. 

Psychosocial disabilities in the Middle East. K4D Helpdesk Report.

BOLTON, Laura
May 2018

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This desk based review reports on the then current best estimates of psychosocial disability in the following countries in the Middle East and North Africa: Lebanon, Jordan, Occupied Palestinian Territories (OPTs), Iraq, Syria and Yemen. Factors influencing prevalence of psychosocial disability in each of these countries, and whether conflict was an important factor were considered. Prevalent forms of psychosocial disability and how might they differ by country were reviewed. How prevalence and form of psychosocial disability differ across the following demographic characteristics: gender, age, religion, ethnic group was addressed. The state of provision, both state and non-state, for those with psychosocial disabilities in these countries, and variation of eligibility and access to provision/services across demographics (e.g. age, gender, religion or ethnic group) were also considered.

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

2018

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Articles include:

  • Inclusive Education in the global South? A Colombian perspective: ‘When you look towards the past, you see children with disabilities, and if you look towards the future, what you see is diverse learners
  • Services for people with Communication Disabilities in Uganda: supporting a new Speech and Language Therapy profession
  • Frida Kahlo and Pendular Disability Identity: A Textual Examination of El Diario de Frida Kahlo
  • Health Information-Seeking Behaviour of Visually Impaired Persons in Ibadan Metropolis, Nigeria
  • Online Collective Identities for Autism: The Perspective of Brazilian Parents
  • Transnationalizing Disability Policy in Embedded Cultural-Cognitive Worldviews: the Case of Sub-Saharan Africa
  • Portrayal of Disabled People in the Kuwaiti Media

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

Autism spectrum disorders

WORLD HEALTH ORGANISATION
April 2017

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This fact sheet provides key facts and an overview about autism spectrum disorders. Associated epidemiology, causes, assessment and management, social and economic impacts are briefly covered. The human rights of people with ASD are discussed and the WHO Resolution on autism spectrum disorders (WHA67.8) is introduced.

Autism and eating issues: an interview with Dr Elizabeth Shea

THE NATIONAL AUTISTIC SOCIETY
January 2017

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Dr Elizabeth Shea is Clinical Psychologist at the Birmingham Food Refusal Service. Elizabeth kindly agreed to be interviewed for Network Autism when she attended the XI Autism-Europe International Congress hosted by the National Autistic Society in 2016.

In this video Elizabeth discusses some of the common eating issues that autistic people may experience. She explores why autistic people may struggle with eating issues and outlines how professionals can best support them.

Individual interview questions

1. Can you tell us how you first became interested in autism?

2. Can you tell us about your current work?

3. What are the most common eating issues that you see for autistic people?

4. Can you highlight some of the reasons why autistic people may develop eating issues?

5. What are the most effective treatments for eating issues for autistic people?

6. What advice would you have for professionals working with autistic people who maybe struggling with eating issues?

Satellite classes: A promising model for educating children and young people on the autism spectrum

CROYDEN, Abigail
et al
2017

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Results of research into attempts to provide the best of both mainstream and specialist education for autistic children are presented. The ‘satellite class’ model of supported inclusion is where the strengths of a special school education are kept in place for selected autistic pupils as they transfer to dedicated classes within mainstream ‘host schools’. The schools studied were all within the London borough of Tower Hamlets, UK.

Advances in Autism, vol.3, no.3, 2017 Special issue: Improving access to healthcare

2017

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Special issue: Improving access to healthcare. The aim of this special issue is to stimulate discussion and new research on the health and health care of people with autism spectrum disorder. In a co-productive approach, we give people on the autism spectrum, their families and health care providers a voice to open an exchange between professionals and people with lived experience. The guest editorial is freely accessible. There are six papers:

 

  • Autism and healthcare
  • Quality of health and health services in people with fragile X syndrome: perspective of their parents
  • Transition tools and access to adult primary care
  • Systemic-attachment formulation for families of children with autism
  • An online ASD learning module for pediatric health care professionals
  • Pain in Rett syndrome: peculiarities in pain processing and expression, liability to pain causing disorders and diseases, and specific aspects of pain assessment

The autism employment gap report

The National Autistic Society
September 2016

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For nearly a decade, the full-time employment rate of autistic adults has stagnated. A survey we carried out in 2007 indicated that just 15% of autistic people were in full-time paid work. Shockingly, in this year’s survey, the figure was just 16%.

 

A similar number are in part-time employment, giving an overall employment rate of 32%. And while full-time work won’t be right for everyone on the autism spectrum, four in 10 of those working part-time feel under-employed. Others feel they are in low-skilled work and employers don’t see their abilities. They see their autism. They see a problem.

 

Meanwhile, employers have told us that they are worried about getting things wrong for autistic employees and that they don’t know where to go for advice. Autistic people are overloaded by too much information at work, and employers don’t have enough.

 

The UK Government has made a very welcome pledge to halve the disability employment gap by the end of this Parliament, meaning that they have to shift the disability employment rate from 47% to 64%. But the autism employment gap is even wider. For the number of autistic people in work to reach 64%, the Government will need to commit to doubling the number of autistic people in employment by 2020.

 

Both Government and employers need to take specific action to make this happen – without it, recent history tells us that autistic people will continue to be left behind

Living in fear: experiences of hate crime and discrimination amongst people with learning disabilities and autism

BRADSHAW, Jill
RICHARDSON, Lisa
May 2016

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The views and experiences of people with learning disabilities and autism living within one UK unitary authority (Medway, Kent) were explored.  Aspects investigated were: how many people victimisation affects; who is affected by victimisation; what type of things happen to them; and the impact of victimisation on their quality of life.  The focus groups were: 7 groups with people with intellectual disability and autism (31 people); 4 groups with family and paid carers (33 people).  A survey was completed by: people with intellectual disabilities and autism (220 surveys) and family or paid carers (35 surveys).  27 individual interviews were carried out. 

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