Pan-African Experiences of Autism: Transforming Rights into Reality – A Practical Conference

 

Pan-African Experiences of Autism Conference

Click on the link below for the full Conference Programme as a PDF

Pan-African Experiences of Autism Conference Leaflet

Background

There are very few studies on autism in the African context but it is clear that specialist autism support services are limited across the continent – and in some areas are non-existent. Just 53 publications were identified in a recent review of research into autism in Africa (Franz et al, March 2017), but findings suggest a substantial need for large-scale clinical, training, research and awareness-raising programmes to improve the lives of people who live with autism in Sub-Saharan Africa. The UN Secretary-General has urged the international community to focus on autism globally, to address stigma, lack of awareness and inadequate support structures.

Globally many autistic children and adults are living difficult lives, denied education, support and acceptance, and often prevented from participating in family and community life. In resource-poor settings in particular, the lack of opportunities for support and education, accompanied by the profound and isolating stigma that can accompany disability, can put individuals and families in intolerable and often dangerous situations.

Generating Support & Action for Change

To genuinely improve the everyday lives of people living with autism there is an urgent need for increased support for awareness-raising programmes and for sharing the latest developments in good practice, including in education, in research and in social care. As elsewhere, this complex process of social change necessarily involves multiple agencies – within the education sector, at NGO level, from within the community and at government policy level.

This is a practical conference aimed at developing working partnerships to transform rights into reality. The conference will bring together a selection of best practice and perspectives from African countries, with the aim of providing opportunities for individuals, organisations and others to share experiences, information and to plan genuine strategies for transformative action.

The event will look at what is working, how we can strengthen, support and widen best practice, what research needs should be prioritised, identifying resources and forming partnerships to build capacity in education, training, social care, awareness-raising, and to explore future networking possibilities.

The conference will be aimed firmly at action and at developing future collaborative partnerships – international, continental, regional and national – to contribute towards the enhancement of capacity.

If you are interested in attending the event please outline your interest in a sentence or two and email:

mike@disability-africa.org

There is no charge to attend the Conference.

Funding for Disability Awareness in Schools

With funding from The Big Lottery’s Awards for All, Stepping Forward has joined forces with Just Different to provide innovative, exciting and educational Primary and Secondary workshops on disability and difference.

Workshops sessions are specifically designed to engage children and young people into thinking more imaginatively about the world they live in, and the diversity of the people within it. Created and presented by disabled adults using a variety of simple interactive methods, the workshops encourage children onto a path of learning that is captivating and enlightening.

If you are a school in Berkshire and the surrounding counties and would like a free disability workshop at your school, please get in touch with us at info@stepping-forward.org.uk. We will be offering workshops from the school year commencing September 2017.

Supporting School Transport for Special Needs School, Sierra Leone

Stepping Forward is trying to raise £8,000 for a bus for the Hosetta Abdulai Special Needs School in Freetown, Sierra Leone through crowdfunding at:
The school is for children/young people with learning disabilities, including cerebral palsy and autism.  Many of the children require personal care and are non-verbal.  A significant number have severe epilepsy.  The School is the most appropriate available provision for the children but most of the pupils simply cannot get there.
There are 73 boys and girls on the school register but some days there are only 3 children at the school due to transport problems.  Families face many obstacles to getting their children to school: the daily transport costs for two people (pupil and parent/carer) to travel to school is prohibitive for most families and the average journey in Freetown takes two hours each way. This does not allow time for the parent/carer to work in the day before returning to collect the child.
We have raised £3,000 so far for a bus to take the children to school and now need to find an additional £5,000. The used mini-bus that we plan to buy is in Freetown and has been checked by a mechanic. It is a 27 seater.  The owner has reserved it for us and has given us until the end of May 2017 to raise the funds to purchase the bus.
We hope that people will  consider supporting the purchase of the school bus – and by doing so supporting the children and young people at the Hosetta Abdulai School to access their right to education.

 

Human rights of people with autism not being met, leading expert tells United Nations

The basic human rights of autistic people are not being met, Professor Simon Baron-Cohen, a world expert on autism, told the United Nations in New York today, to mark Autism Awareness Week.

People with autism account for a significant minority of the population worldwide, yet we are failing them in so many respects

Simon Baron-Cohen

In his keynote speech, Professor Baron-Cohen, Director of the Autism Research Centre at the University of Cambridge, argued that even with the UN Convention on the Rights of People with Disabilities having been adopted in 2006, people with autism still do not enjoy human rights to the same extent as everyone else.

At least 1% of the world’s population is on the autism spectrum, which equates to some 70 million people with autism on the planet.  Autism is a spectrum of neurological disabilities involving difficulties with social relationships, communication, adjusting to unexpected change, dealing with ambiguity, and entailing sensory hypersensitivity and anxiety. Autism also leads to a different perceptual and learning style, so that the person has a preference for detail, and develops unusually narrow interests, and an unusually strong preference for facts, patterns, repetition and routine.

See the full article here:

http://www.cam.ac.uk/research/news/human-rights-of-people-with-autism-not-being-met-leading-expert-tells-united-nations

Overcoming Obstacles to Educational Access

We are pleased to be working with the Hosetta Abdullai Special Needs School in Freetown, Sierra Leone, which provides education to children and young people with intellectual disabilities.

1 girls at schoolboys at school 2

Although there are 73 children registered at the school, there are often only three or four children in attendance. Transport costs and the time taken to accompany children to school are huge obstacles to participating in education. We have agreed to support the purchase of a second-hand bus for the school and now need to raise £8,000 for this purpose. We would be grateful for your support. Our details can be found on the Contact Us page.

Fundraising Ball for Disability Organisations at The Hilton Reading, Saturday 11 November

Stepping Forward plans to once again coordinate this unique event which brings fundraising and networking together to benefit local disability organisations. Can you help us with sponsorship of the event?

The Ball will take place on Saturday 11 November at the Hilton, Drake Way, Reading for organisations working on disability issues in Reading and the surrounding area. Participating and benefiting organisations will be: Parenting Special Children, MS Therapy Centre Berkshire, Reading Mencap, Berkshire Phab, The Engine Shed and Autism Berkshire.

John Williams (http://www.mysonsnotrainman.com/), comedian and writer of sell-out show and forthcoming book ‘My Son is Not Rainman’ will once again be our MC. We hope that the new Mayor of Reading will open the event. Guests will be able to dance to all the hits (Stevie Wonder, The Killers etc!) provided by our award winning band.

 

Committee on the Rights of Persons with Disabilities: where are the diverse voices & experiences of women with disabilities?

We support those calling for appropriate gender representation on the Committee on the Rights of Persons with Disabilities. UN Women’s statement of 1 July is here UN Women statement on the Committee on the Rights of Persons with Disabilities and below:

UN Women statement on the Committee on the Rights of Persons with Disabilities

Date: 01 July 2016

UN Women recognizes the unique and intersecting challenges that women with disabilities face. This makes it all the more critical that women with disabilities are fully represented on panels, committees, human rights treaty bodies and across all areas of leadership so that their voices are heard. It is therefore regrettable that the Committee on the Rights of Persons with Disabilities (CRPD) will have just one female representative. The recent election process for nine positions resulted in all-male appointments for 2017, despite the candidature of three women for the positions and despite the terms of Article 34.4 of the Convention on the Rights of Persons with Disabilities that “The members of the Committee shall be elected by States Parties, consideration being given to … balanced gender representation.” UN Women joins the many voices that have expressed concern regarding the new composition of the Committee on the Rights of Persons with Disabilities, in which the diverse voices and experiences of women with disabilities have been diminished. UN Women calls for no panel or committee to be assembled without the representation of women. The UN Global Compact made important advances in this area during the 60th session of the Commission on the Status of Women in March 2016, with the introduction of the UN Global Compact Panel Pledge, which urges men who are asked to serve on all-male panels to decline or to suggest a woman colleague instead. The upholding of the principle of balanced gender representation is especially vital for women with disabilities, who often encounter multiple and intersecting forms of discrimination. It is estimated that one in five women lives with disability, and that the prevalence rate of disability for women (19.2 per cent) is higher than for men (12 per cent). These women are two to three times more likely to experience early and forced marriage, early pregnancy and female genital mutilation. Women and girls with disabilities also face unique educational, economic and political barriers. UN Women hopes that States Parties, in close consultation with persons with disabilities and their representative organizations, will support the nomination of women to the CRPD to redress the current situation and achieve balanced gender representation in 2019. Additionally, UN Women invites the CRPD to continue to explore the intersectionality of gender and disability, including through the general recommendations of the Committee on the Elimination of Discrimination against Women. Without adequate representation of women on panels and committees, the voices of half of the population are not being heard. Due to the inextricable nature of human rights and women’s rights, a balanced gender representation remains crucial to ensuring balanced and sustainable outcomes. – See more at: http://www.unwomen.org/en/news/stories/2016/6/committee-on-the-rights-of-persons-with-disabilities#sthash.Cazk1P7w.ptlVwyfs.dpuf

 

Mazars Report on the deaths of people with a learning disability or mental health problem at Southern Health NHS Foundation Trust

This important report, which has wide-ranging implications, can be found here:

https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

Some of the report’s main findings are:

  • Many investigations were of poor quality and took too long to complete
  • There was a lack of leadership, focus and sufficient time spent in the Trust on carefully reporting and investigating deaths
  • There was a lack of family involvement in investigations after a death
  • Opportunities for the Trust to learn and improve were missed.

Of the 1,454 deaths recorded at the Trust during this period, 722 were categorised as unexpected by the Trust. Of these 540 were reviewed and 272 unexpected deaths received a significant investigation.  The report does not specify how many investigations there should have been, but draws attention to the limited number of deaths that were investigated in different categories.

NHS England has fully accepted the findings of the final report, following a period of review which included an independent verification of the methodology used.

 

The LB Bill & Why It Is Important

The #LBBill is an idea to change the law for disabled people so that they have more control over what happens in their lives. Help is urgently needed to achieve that.

The #LBBill needs to be promoted urgently to all the MPs (new and old) now in Westminster. You can read the latest draft by clicking here https://lbbill.wordpress.com/draft-lb-bill-v-2/

As with everything #JusticeforLB it has been developed organically and collaboratively, gathering feedback from far and wide including hundreds of disabled people, family members and allies. You can watch a short film (6 mins) about the #LBBill, where it came from and why it’s important here – click and scan down the page to see the film:

https://lbbill.wordpress.com/

A private members’ bill is a proposal for a new law from a backbench MP, by contrast to the majority of bills which are put forward by the government. There is a guide to private members bills on the Parliament website.

There are several different types of private members’ bill, but only one type stands any realistic chance of becoming law. This is a ‘ballot bill’ which is introduced by an MP who is drawn in the private members’ bill annual ballot. This ballot is taking place next week, on Thursday 4 June.

The reason getting drawn high up in the ballot matters is that only the first six or seven MPs will get the time required for their bill to be debated in Parliament. So the answer to the question ‘which MP do we want to sponsor #LBBill?’ is a very simple ‘any of the top MPs drawn in the ballot, the higher the better’.

It is important that all MPs are informed about the #LBBill and encouraged to support it. If the bill can get a well-placed sponsor he or she will need to convince dozens of their Parliamentary colleagues to support the bill to get it through the various stages and on to the statute books.

Please lobby your MP now, and if next week your MP is one of the lucky ones chosen high up in the ballot, get in touch with the LB BIll team (details below) and together you can plan further about how to approach them to request their support to be an #LBBill sponsor.

More information about the LB Bill can be found at https://lbbill.wordpress.com/ and on twitter @justiceforLB