THE 3rd week of January is National Autism Consciousness Week and all government and non-government agencies are encouraged to undertake activities that will increase awareness about autism spectrum disorder and how it affects individuals, families and the society as a whole.
This year's observance of the 18th National Autism Consciousness Week from January 19 to 25, 2014 is quite significant as it coincides with the celebration of the 25th year of advocacy of the Autism Society Philippines.
During the NACW opening program last January 19, spearheaded by the ASP, the theme "Katuparan ng Karapatan ng Pilipinong may Autismo: Isulong mo, Ngayon Na!" was repeatedly chanted by thousands of families, schools, government agencies and private entities who almost filled the 18,000 seats of the SM MOA Arena.
As committed advocates, what exactly are the rights that we should ensure for the improvement of the quality of life of persons with autism in the Philippines? Ms. Dang Koe, chair emeritus of Autism Society Philippines, stated that we should push for implementation of laws on 1) mandatory newborn screening; 2) comprehensive needs assessment; 3) inclusive education; 4) public servants with special skills; 5) community-based rehabilitation programs; 6) comprehensive sensitivity training for schools and workplaces; and 7) creative mechanism for funding.
Newborn screening is very important for early detection and intervention of autism spectrum disorder.
According to Republic Act 9288, "Newborn Screening (NBS) is a public health program aimed at the early identification of infants who are affected by certain genetic/metabolic/infectious conditions. Early identification and timely intervention can lead to significant reduction of morbidity, mortality, and associated disabilities in affected infants."
Although this law, passed in 1996, makes newborn screening mandatory, there are only four government facilities/newborn screening centers in the entire Philippines that implement this program (http://www.doh.gov.ph/content/newborn-screening.html). I think that for most private hospitals, newborn screening is optional, depending on the choice of the parents.
We must also push for availability and affordability of evaluation procedures for children with ASD. Diagnosis and needs assessment is important in determining what medical and educational intervention is necessary for children with ASD. A check-up with a development pediatrician, an occupational therapist or a speech pathologist may be expensive for most families; hence, the government should have a program that would provide these essential services.
Aside from diagnostic and evaluation services, there should also be focus on inclusive education, which is aligned with the "education for all" initiatives of the Unesco/World Bank. Children with ASD will have better lives if they are given special education at the earliest possible time. Inclusive education can only be achieved if our public school teachers are properly trained to handle children with special needs together with regular kids. Our barangay health workers at the health centers should also be well-trained on how to handle children with ASD.
It would be ideal if every municipality in the Philippines implements a community-based rehabilitation (CBR) programs to provide therapy and special education particularly to families who cannot afford private services. A CBR program involves a partnership between the government and the private sector and involves the parents and the entire family in providing basic education, employment, health and social services for individuals with special needs.
We also call for nationwide sensitivity trainings for students and professionals, including workers and frontliners in public places such as malls, hospitals, churches and transportation facilities. This would probably put an end to bullying and make persons with ASD less vulnerable to ridicule.
The Philippine government should also set aside some funding for worthwhile projects that would benefit persons with ASD. For example, the City Government of Mandaluyong has been cited as a model for having a database of persons affected with ASD which helps them determine the extent of their CBR programs and the proper allocation of budget.
The ASP has unfolded some basic rights that our children need. During this National Autism Consciousness Week, let us pause and reflect on what can we do to make these rights real for persons with ASD. In our own little way, we can do something for them... right now.
Jane Ann S. Gonzales is a mother of a youth with autism. She is an advocate/core member of the Autism Society Philippines and Directress of the Independent Living Learning Centre (ILLC) Davao, a centre for teenagers and adults with special needs. For comments or questions, please email email@example.com).