by Lucía Murillo and Chiara Servili.

autismo

No one tells you being a mother or a father is going to be that hard: more responsibilities, time seems to be going faster, and tasks increase. Everything seems to be even more complicated when you are a mom or dad of a child with special needs.

However, to reduce stigma associated with having a child with special needs, disability awareness campaigns around the world are meant to open the conversation to the needs of families and individuals with developmental delays or disorders, such as autism.

At the same time, this conversation highlights the need to provide appropriate support to these families to address their concerns. Unfortunately, in many low-resource settings, the majority of families do not have access to the health care services they require.

With this knowledge, the World Health Organization (WHO), in collaboration with Autism Speaks, has developed a Parent Skills Training that will offer parents and caregivers some fundamentals skills that will help them adopt evidence-based strategies to better support their children during interactions in the home and community. The program targets autism but is not autism specific and, thus, may be utilized broadly by families who have children between the ages of 2-9 experiencing developmental delays and challenges.

There is no question that parents are the most knowledgeable about the needs of their children and, as such, they are key partners and key resource persons in the implementation of comprehensive health and wellness plans. The goal of this program is to have non-specialists in the community (e.g. community health workers, teachers, and peer parents) provide a series of both group and individual trainings to families addressing themes such as promoting communication, learning through play, addressing challenging behaviors, and reducing parent stress.

The non-specialists would ideally have some background or experience in child development and working with families. In order to ensure that the program is delivered in a consistent manner, these non-specialists would be supervised by expert Master Trainers. Through this training, parents and caregivers will learn essential skills to feel more confident in being able to address challenges in their children’s development, and also develop a greater understanding about child development in general and how their child learns best.

This training model is an example of a strategy in the public health community referred to as “task shifting” (or task sharing). Task shifting  is when tasks or services that are traditionally delivered by highly-trained specialists are redistributed in the community to less specialized workers so as to maximize coverage and meet the community needs more efficiently. While specialists are always needed for a comprehensive system of care, Parent Skills Training will be a means to offer support to more families, including families that live in communities with limited resources.

In a meeting at the WHO in April this year, professionals, government representatives, and parents from 18 countries convened for an initial orientation to the PST. This meeting allowed different countries the opportunity to provide feedback that was reflective of how the training would work in their contexts. This feedback is being used to further improve the program before regional trainings and field trials are rolled out in the coming months. Aside from community engagement, a key factor for the successful implementation of the program will be government involvement and support. In our experience, the sustainability of new programs is largely dependent upon the buy-in from the government sector, and its integration into existing infrastructure and systems.

The Parent Skills Training program is just a start in attempting to address the needs of the global community in relation to service delivery for children and families affected by autism and other developmental delays. In fact, it was developed as just one solution to the call to action from the United Nations General Assembly and the World Health Assembly in 2012 and 2014, respectively, having adopted resolutions to address the socioeconomic needs and service gaps experienced by the global autism community.

Autism Speaks recognizes the continued need for services that benefit individuals of all ages, including within the school, community, and employment sector. We will continue to work in partnership with international autism communities to address these challenges in a way that serves different communities and enriches the overall lives of our loved ones.

Do you have a child with special needs? What’s your experience with it? Do you think the Parent Skills Training program could help you? If so and you are interested in joining a multi-national PST field trial, please write to us, here in this blog and we will write you back. Don’t forget to follow us on twitter @BIDgente.

Lucia Murillo, Ed.D., is the Assistant Director of Education Research at Autism Speaks. She is responsible for developing, managing and implementing Autism Speaks’ efforts. Prior to Autism Speaks, Lucia spent over ten years working in autism research, early intervention, and providing relevant, cultural services to children and their families both community-based and in-home.

Chiara Servili, MD, MPH, works for the World Health Organization.

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