Stakeholder Engagement Feedback from the Regional IMFAR at Stellenbosch

STAKEHOLDER ENGAGEMENT FEEDBACK REVIEW:

On the 7th of September 2017, an autism stakeholders’ engagement was held
before the SA-ACAPAP conference at Spier, Stellenbosch. The purpose of this
engagement was to invite all interested parties to collaborate and contribute
towards a more unified focus with regards to establishing what the priorities and
goals should be over the next 5 years, for the Autism Community in South
Africa and Africa as a whole. Prior to this, an online form was shared to all
interested parties, to invite feedback from those unable to attend this meeting.
Together, this feedback has been summarised to share preliminary goals that
have been tabled. The aim is to share this with the Community, to allow for
further feedback and input. This will then be followed up by a final summary
review, which will be shared to all interested parties.

1. COLLABORATION AND NETWORKING
One of the most common goals was the highlighting of a more collaborative and
unified approach to services and support. Some specific suggestions included
service providers working within a shared network; the development of a
possible overseeing body to ensure Quality and effective services; as well as
working towards a more collaborative and inclusive approach, both across
Autism community participants, as well as government departments and other
relevant organisations. Furthermore, there was an expressed need for
“#ACTUALLYAUTISTIC” approved services and support. Some specific
suggestions were discussed, such as using existing ‘best practice’ services as
models, as a way of building consistency, as well as working towards increasing
reach of services (i.e. not reinventing any wheels).

2. MONITORING AND EVALUATION
Part of this collaborative approach also included the recommendation of the
development of a committee, to monitor and evaluate services. The
recommendation was to have a multidisciplinary board that includes
professionals, government representatives (education, social development,
health, higher education & training, etc), autistic adults and other relevant
stakeholders. The overall mission would be the review of courses, training and
interventions to review and assess quality, encourage evidence based practice,
monitor implementation, guidelines for quality and improvement, sharing of
best practices and other constructive standards.

3. AWARENESS AND ADVOCACY
Despite the incredible strides taken over the past few years regarding increased
awareness and advocacy of the Autism across the community, advocacy and
awareness are still a high priority for the next 5 years. Again, a more nationwide
collaborative approach was encouraged. Recommendations included locally
relevant information that is indicative of our diverse community; awareness that
is reflective of the full spectrum, a focus on ensuring access to information
regarding ASD at an early stage of life, for example at neonatal clinics. An
overarching recommendation was the importance of self-representation being
involved in decisions regarding nationwide awareness campaigns.

For awareness and advocacy to have a widespread impact, it is imperative that
there is more Autism related influence in terms of policy and legislation that
impacts on the Autism community. This incorporates greater awareness of
existing policies, in order to further empower the community.

4. SELF REPRESENTATION
A significant priority for collaboration, advocacy, monitoring/evaluation and all
the other key issues discussed was that of self-representation. It became
increasingly clear that Autistic adults feel excluded from much of the
consideration, organisation and implementation of Autism related services and
campaigns. This included consulting with adult self-representatives prior to
national campaigns, as well as setting up support groups or a mentorship like
experience to offer further support to those in the Autism Community.

5. EDUCATION, LEARNING OPPORTUNITIES AND LIFELONG
PLANNING
It was felt that Education- from birth onwards- was another priority over the
next 5 years. Suggestions included having more Autism friendly early
intervention centres; additional learning environments for higher needs learners,
as well as development of guidelines for home-based learning. Overall, it was
highlighted that there is a large need for greater access to all services for the
South African community, regardless of area. This includes better follow up
services, development of technology based learning, greater awareness of
Autism across mainstream schooling, along with the exploration of the rights of
all students.

A secondary part of the need for education was with regards to the link from
schooling to adult services and beyond. This includes a more constructive
transition from childhood to adulthood, with further opportunities towards
employment and independent living. Furthermore, there is a need for
accommodation of adults into employment opportunities and residential
facilities. There was a recommendation to establish a mentoring structure to
facilitate skill acquisition for those wanting to learn more vocational and related
skills. Moreover, there was a focus on future planning, namely retirement,
social integration and other transition and life-long empowerment skills.

6. INTERVENTION AND TRAINING
Quite a large focus was on the development of more widespread available
interventions. This included offering services while awaiting placement and
referral, early intervention, family based intervention, respite programs and the
sharing of good practice.

Part of this priority to ensure access to quality and affordable services also
works hand in hand with the importance of ensuring quality training across all
services. There is a great need for specific training on Autism for all
professionals, from teachers, to government departments, health professionals
and any other related professionals that are involved in the Autism community.
It was felt that a more eclectic model should be adopted, that includes evidence
base practice while still incorporating local needs and socioeconomic
limitations. Given our need for capacity building, suggestions included more
‘train the trainer’ teaching models, low intensity high quality, technology and
online based training opportunities that are cost effective and easily accessible.
This includes the vital importance of parent education and empowerment.
Other, more specific training was also discussed, including medical professional
training, corporate training, general tertiary education training, as well as
diagnostic training. Moreover, it was recommended that Autism screening kits
and other helpful tools should be more widely and openly shared to increase
access to helpful resources. This directly relates to the importance of research to
ensure quality education, intervention and training.

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