Autism Capacity-Building in the Developing World
The Foundation for Autism Support & Training – ARCHway to Independence and the Center for Autism Support and Training (CAST) in partnership with the Pacific Institute for Research and Evaluation (PIRE), World Autism Organization (WAO), Foundation for Africans with Disabilities and Neglect (FADINE), and Autism Community of Africa (ACA) have established an international alliance for the purpose of autism capacity-building in the developing world.
This international autism alliance was spearheaded by Karen Kaye-Beall, the mother of two young adults with autism in Maryland. Karen is the founding director of both the Foundation for Autism Support and Training (FAST-ARCHway, 501(c)3) and the Center for Autism Support and Training (CAST), a company providing therapeutic service, family training and adult lifespan planning services to families who participate in Maryland’s Home and Community-Based Services Waiver for Children with Autism Spectrum Disorders. Over the past 10 years, CAST has employed hundreds of direct support staff who have immigrated to the United States from all parts of the world. A great majority of these staff members are from Africa. CAST’s families have children up to age 21 from all over the world. We are an eclectic, international group. Many have been very lucky to immigrate to the U.S. and as a result, their children with autism have been able to receive some of the best treatments in the world. Still, these families and employees have sacrificed a lot to be in the United States and left loving family behind in their native countries.
It is for this reason that we have taken a keen interest in the subject of autism capacity-building in the developing world and have brought together an alliance of like-minded organizations to try and help the forgotten families with autism in the developing world and least developed economies. The Foundation for Autism Support and Training is a member of the United Nations Global Compact. As such, we are committed to ensuring that the issues, needs, and struggles of people with disabilities, and people with autism in particular, are addressed by international world leaders and stakeholders and included in the new United Nations Millenium Development Goals in 2015. Such inclusion will increase the likelihood that international development efforts and foreign aide will make it to families with autism and related developmental disabilities in a large list of developing nations. This can only be accomplished through greater awareness and information dissemination by interested stakeholders. Other stakeholders interested in exploring participation in this alliance should email Karen Kaye-Beall.
STATEMENT OF NEED
According to the 2011 World Report on Disabilities by the World Health Organization (WHO) and World Bank, more than a billion people in the world today experience disability. People with disabilities have generally poorer health, lower educational achievements, fewer economic opportunities, and higher rates of poverty than people without disabilities. This is largely due to the lack of services available to them and the many obstacles they face in their everyday lives. Despite the magnitude of the issue, both awareness of and scientific information on disability issues are lacking.
As astonishing as it is to believe, today there is still no universally agreed upon definition of disability and little internationally comparable information on the incidence. There have been attempts to establish a definition but there has not been a consensus to accept and apply the definition throughout the world.
While we have a rough estimate of the number of people with disabilities worldwide, no one knows how many people have autism worldwide. In advanced countries, we have seen rates similar (or even higher) to the US rate of 1 in 88 children and 1 in 54 boys. This is an estimated total of 1.5 million individuals with autism in the US.
People with autism and other developmental disabilities are entitled to the same rights as all other human beings and to equal opportunities. Too often their lives are handicapped by physical and social barriers which hamper their full participation in society. This is amplified by gender inequalities in many nations. In nations in conflict or just recovering conflict, individuals with disabilities face all of the conditions of immense suffering and marginalization. Because of this, millions of children, teens, and adults with autism and disabilities in all parts of the world often face a life of segregation, abuse, and debasement.
Although awareness has been raised about disability issues in some of the advanced economies, there remains a pressing need in the developing world to promote effective measures for prevention and rehabilitation of disabilities to create more of a level playing field. Governments are called upon to develop the infrastructure and capacities to address the needs of persons with disabilities, particularly needs related to specialized training in diagnoses, education, vocational training, rehabilitation, staff supports, and housing.
In the past, often families and stakeholders concerned with addressing issues related to autism in remote rural locations could not afford transportation costs to attend conferences in the capital of a country. Now with the latest technology available in teleconferencing and mobile health (mHealth) they can either just go to their local health clinic to view these conferences on a large screen or receive autism training information via cell phone technology. As public awareness increases, we hope to leverage the interests of large mobile technology companies to partner with us to reach out to these forgotten and suffering families. Imagine living in conflict and poverty, not knowing when and where your next meal would be coming from. Then try to imagine at the same time being a parent of a child with severe autism and try to grasp what that combined experience must feel like. It is no wonder there is rampant child abandonment and homelessness for so many children with disabilities in these countries. We need to provide them with a lifeline of training and assistance.
The Center for Autism Support and Training (CAST), along with the Foundation for Autism Support and Training and its collaborators are now providing a way forward to assess autism capacity in any country, whether advanced or developing.
Together, we are able to provide (with appropriate language translations and cultural considerations):
- Convening an initial stakeholder capacity assessment meeting
- Effective, user-friendly autism trainings (train the trainer) for parents, family members, and caregivers
- Epidemiological studies
- Public information campaigns
- Education and disabilities policy development
- Technical assistance on diagnosis, early intervention, provision of direct therapeutic and rehabilitative services, employment and housing
- Technical assistance to expand technological platforms to provide autism training to families and professionals worldwide, even in remote locations.
- Program evaluation
- Lifespan planning
- Working to increase technology infrastructure to bring mHealth to the autism population in the developing and least-developed world.
Every country’s needs are different. There is a huge difference between what a developed country with advanced economies will need and be able to afford and what an emerging/developing country or least-developed country will need and be able to afford. The Human Development Index (HDI), which combines an economic measure, national income, with other measures and indices for life expectancy and education has become a prominent measure. This criterion would define developed countries as those with a very high (HDI) rating, a large amount of widespread infrastructure, and a high general standard of living. It is important to note that many anomalies exist when determining “developed” status by any measure and therefore an individualized approach to international capacity assessment should always be provided.
CAST/FAST’s initial approach would always be to recommend and convene a stakeholder meeting to assess capacity and needs for developmentally disabled populations in general and for autism sub-groups specifically. Any country’s demographic information must be collected. Information must be learned about a country’s services and interventions for people with autism and other developmental disabilities. And since schools tend to be one of the most common settings where disabilities services and supports are offered, information must be collected about a country’s special education system or lack thereof. CAST/FAST has developed a compilation draft of an International Autism Capacity Assessment Survey to gather crucial capacity information. Under specific circumstances, this combined survey may be more effectively divided into four targeted surveys to include answers from (1) parents/families/caretakers (2) government officials (3) professionals/NGOs/service provider organizations (4) education professionals/teachers/special educators. For simplicity’s sake, CAST/FAST’s survey combines questions for all four target groups. We ask that stakeholders only answer questions that they have direct knowledge of and given the demands of any situation, we may simplify and target the survey to address the specific requirements.
Following this stakeholder meeting, CAST/FAST would furnish the sponsoring officials with a summary report which would include information regarding conclusions, recommendations and services to be offered, with the most direct approach recommended to alleviate suffering of individuals and their families with autism and other developmental disabilities. It has been shown that therapeutic approaches aimed at improving the lives of those with autism tend to be equally effective in supporting the needs of those with other developmental and intellectual disabilities; however, services developed to support the needs of people with disabilities in general do not always prove effective in addressing the needs of those with autism. Therefore, CAST/FAST’s emphasis will be placed on developing autism-specific services and training materials.
If sponsors wish to expand the stakeholder meeting beyond on-site participants to reach key contacts country-wide or in remote locations, we are able to offer online conferencing capabilities through iCohere, an affordable, highly configurable collaboration platform for online events and professional communities.
International Autism Capacity-Building Alliance Members
Center for Autism Support and Training (CAST)
Founded by Karen Kaye-Beall, Executive Director, the Center for Autism Support and Training (CAST) was established in 2002 in the US and has employed 45 staff members and grossed $8 million over a ten-year span. CAST has been on contract since 2002 with the Maryland State Department of Education – Department of Health and Mental Hygiene to provide services on Medicaid’s Home and Community-Based Services Waiver for Children with Autism Spectrum Disorders (ASD). Services include staff recruitment, training, and placement in family homes to provide therapeutic support on habilitation goals for children and teens with autism. CAST provides family training for parents of children and adults with ASD. CAST also provides staffing services and training on Maryland Developmental Disability Administration’s self-managed program called New Directions. Kaye-Beall participates on the Maryland Autism Commission’s ASD Adult Services Committee.
Foundation for Autism Support and Training (FAST)
Karen Kaye-Beall is Founder, Director, and Board Chair of the Foundation for Autism Support & Training (FAST). FAST-ARCHway is part of the UN Global Compact, helping to support teens and adults with autism and their families worldwide. FAST launched a year-long parent training initiative in 2011 called ARCHway to Independence which focused on lifespan planning, housing and community living for teens and adults with autism throughout the spectrum. FAST also launched a national public service announcement in 2009 called a Perfect Storm, registering more than 150 million viewer impressions. Finally, FAST has participated in three White House meetings on autism policy.
Pacific Institute for Research and Evaluation (PIRE)
Dr. Allan Cohen, Director of Research for CAST’s ROADMAP, co-founded Pacific Institute for Research & Evaluation (PIRE) in the 1970s. It is now one of the nation’s largest independent nonprofit organizations in public health research and program development. PIRE has the financial strength ($31 million in revenue), management information systems and internal controls needed to ensure the successful management of large-scale international projects. In 2009, PIRE managed over 180 national and international projects in seven countries. PIRE currently has projects in Liberia, Kenya and South Africa. PIRE provides technical assistance, information clearinghouses in many content areas, studies, research and evaluation, public information campaigns, and epidemiological studies. PIRE works in partnership with CAST on autism capacity-building projects.
Autism Community of Africa (ACA)
Autism Community of Africa ( ACA) was founded by Mrs. Brigitte Kobenan, a mother of a child with autism. She also holds the title of Mrs. Congeniality World 2008 and Mrs. Côte d’Ivoire 2008. ACA is dedicated to helping those living with autism in Africa and their families as well as increasing public awareness and providing resources and training in Applied Behavior Analysis.
Foundation for Africans with Disabilities and Neglect (FADINE)
Foundation for Africans with Disabilities and Neglect (FADINE) helps orphaned, disadvantaged, and disabled Cameroonian children.
Racines Heritage Foundation
is a member of the World Federation of UNESCO Clubs, Centers & Associations. Its mission is to promote education and intercultural dialogue and to help improve the lives of those living in communities in need in Africa.
Liberia Renaissance Foundation
Liberia Renaissance Foundation was founded by Dr. Dawn Cooper-Barnes, wife of former Liberian Ambassador to the US. Its mission is to support cultural/economic development in Liberia.
World Autism Organization (WAO)
World Autism Organization (WAO) helps to improve the quality of life for people with autism and their families in all parts of the world. Currently directed by Paul Shattock, the WAO has executive committee members in England, Spain, Kuwait, Denmark, Africa, Ireland and Mexico. WAO recognizes that many of our objectives can only be attained through political change and will work to help politicians and policy makers reach decisions that are appropriate to these ends. Our aim is to maximize the potential of the internet so that people in poorer societies around the globe can participate in conferences and feel part of a caring, global family.
Karen Kaye-Beall, Executive Director
Foundation for Autism Support & Training (FAST-ARCHway to Independence)
Center for Autism Support and Training (CAST)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.