Program on Empowering People with Intellectual Disabilities

pic6Researchers and practitioners have described intellectual disability and autism as a “grand challenge in global mental health.” One in sixty-eight children (and one in forty-two boys) will be diagnosed with autism in the United States this year alone,[1] a figure that exceeds the number of children who will be diagnosed with AIDS, diabetes, and cancer combined.

According to the Centers for Disease Control, autism is emerging as a public health crisis. One million children with autism in the U.S. will become adults in the next ten years. These startling statistics are mirrored throughout most of the developed world. Under-diagnosis and under-reporting are likely to play a role in the disparity in autism prevalence between developed and developing countries. Many practitioners believe that actual autism rates in the developing world could be in line with those in the developed world.

Other forms of intellectual disability that continue to challenge mental health providers include Downs syndrome and Fragile X syndrome. Service providers are also faced with addressing other factors that contribute to the prevalence of intellectual disabilities, such as metabolic disorders, and in some regions, consanguinity—belonging to the same bloodline.

Confronting the Challenge

To address this growing global challenge, researchers have identified the following key areas for investigation:

  • Improving treatments and expansion of access to care
  • Transforming health-systems and policy responses
  • Building human resource capacity
  • Raising awareness globally, especially of the stigmatization and marginalization suffered by this group

Many regions of the world lack appropriate educational and medical services for children with an intellectual disability. Where appropriate services are available, these may not extend beyond childhood. But an intellectual disability acquired in childhood is in most cases a lifelong condition. Therefore, gains made through childhood interventions and early supports need to be followed through to adolescence and adulthood.

Professor Paul Shattuck, author of one of the few studies focused on adolescents, has noted that although significant efforts to address the needs of children with intellectual disabilities and autism have been achieved, “…there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”[2]

This serious deficit in planning for the adolescence and adulthood of those with intellectual disabilities leaves them highly vulnerable.

There is consensus among practitioners and other stakeholders (in particular, parents) about the compelling need for sustainable, culturally sensitive, community-based program models that address the needs of children and adolescents with an intellectual disability and autism.

Program Activities

  • PEPID is currently documenting the history and work of the Palestinian Happy Child Center, a grassroots initiative that offers educational and medical services to children with special needs.
  • PEPID is also developing a cross-cultural research study to identify needs of adolescents and young adults with an intellectual disability as they transition from special education to adult services.

 

[1] http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

[2] http://news.wustl.edu/news/Pages/21858.aspx