Shifting people’s attitudes away from discrimination and indifference and toward acceptance and inclusion.
Children with disabilities are among the most neglected, vulnerable, and invisible children in the world. In the Philippines, an estimated 5.1 million children are living with disabilities. Yet programs and services for the Filipino disability sector remain insufficient. The 2020 survey of the Sub-committee on Children with Disabilities of the Council for the Welfare of Children, entitled “Situation of Children with Disabilities in the Context of Covid 19,” reported that 48% of respondents were unable to access essential education services and learning resources, while 33.4% were unable to access habilitation/rehabilitation services.
In the Philippines, issues in accessing services for children with disabilities include unavailability of programs in remote areas and lack of transportation to access sites where programs are offered, the inclination of trained professionals to work in major cities or other countries, exorbitant professional fees, lack of schools with qualified special education teachers, irrelevant curriculum and inadequacy of teaching materials, low school enrollment of children with disabilities, low recognition and prioritization of children with disabilities, and the family’s dependence on teachers and therapists as sole educators of their child.
The effects of a disability extend beyond the child to include the entire family. Cultural stigma associated with disability identity persists; families may experience overt and perceived forms of discrimination that prevent them from spontaneously participating in community activities.
Home-based programs that feature collaboration between the family and a professional can help children with disabilities overcome barriers to reaching their full potential. Through a home-based early intervention program, the family gains knowledge and understanding regarding the nature of their child’s disability while learning to care for and support the child. Although societal discrimination and other challenges may persist, a home-based program can help create an enriching home environment, supporting caregivers by providing information to inform their choices and tools to help them engage in activities that promote the child’s independence, productivity, and participation in the community from infancy through adulthood. The child then applies the skills and behaviors they learn in the home setting to the neighborhood, school, recreational facilities, and other public places, enabling them to engage in social interactions and participate in the community.
A home-based program paves the way for the child to gain socially appropriate behaviors and functional skills and contribute their abilities and talents to the community. This intervention program is a necessary strategy for shifting people’s attitudes away from discrimination and indifference and toward acceptance and inclusion and, thereby, positively transforming societal mindset.
The family receives a needs assessment and training on the specific disability and how to work on goals for the child in the home setting, particularly in terms of behavior, structured teaching, and use of augmentative and alternative forms of communication. Occupational, speech, and physical therapists provide training for implementing the various therapies at home. Also, the family is referred to parent support groups, local government agencies, and non-government organizations to increase their access to services such as formal diagnosis; health and medical check-ups and/or procedures; occupation, speech, and physical therapies; and school and center-based programs. Through the program, the family could also seek financial assistance if needed.
Frequency and duration of the services varies based on the accessibility of the service providers or community workers, the availability of the family, and their financial resources. Therefore, frequency could be as often as once or twice a week or only once a month or once in three or six months (especially in remote areas). Duration of the program could be a minimum of six months to one year, depending on the progress towards the individualized goals of the child and the family’s engagement in the process. After goals are completed, the home-based program could continue targeting new goals or skills to address the growing and/or varying needs and abilities of the child and family.
Unfortunately, there is a dearth of government and NGO-initiated home-based programs for children with disabilities in the Philippines. Only a few Filipino schools/centers, organizations, or professionals carry out these activities. Nevertheless, those families, teachers, community workers, and other professionals who have implemented home-based programs report promising outcomes. These personal experiences, such as those of the Malapad family shared below, demonstrate the potential of home-based programs for children with disabilities and their families.
Life changed for Evert Malapad when his 2-year-old daughter, Mae-Mae, was diagnosed as being on the autism spectrum. Seeking help to address Mae-Mae’s loud and extended bouts of crying for unknown reasons and her delays in expressive language and gross motor skills, Evert and Apple, his wife, brought their daughter to a developmental pediatrician. Although the next five years of their Mae-Mae’s life were dedicated to special education classes, occupational therapy sessions, and speech therapy sessions, her overall development continued to be delayed. When encouraged to try a home-based program that emphasized parents’ involvement as teachers for their children, the couple did not hesitate to try it. Eventually, they decided that Evert would give up his lucrative career as an automotive technician in order to be their daughter’s teacher at home.
The demands of teaching Mae-Mae every day struck Evert like a ton of bricks. He was physically exhausted from teaching his hyperactive daughter, continued to question his decision to give up his career, struggled with the effects of shifting from two sources of income to one, and experienced discrimination and judgment from people they encountered whenever they taught Mae-Mae in public settings. However, Mae-Mae’s swift progress encouraged Evert to persevere. After six months on the home-based program, Mae-Mae had acquired the basic skills of sitting and waiting; the family relationships were stronger, characterized by mutual respect, concern, support, and a deeper family faith life; and Evert had experienced significant personal growth, marked with a patient, persevering, resourceful, resilient, and hopeful attitude.
In fact, the success Evert experienced with the home-based program encouraged him to give back to the community by taking further studies in education and honing his skills as a work and life skills teacher to youth and adults with disabilities. Currently, he is active in different advocacies in the country. He became the president of a local chapter of the Autism Society Philippines and also a member of its Board of Trustees. In his desire to empower families, professionals, and other stakeholders, Evert conducts seminars and training activities on home-based programs and preparing persons with disabilities for employment. He also joins meetings, consultations, and focus group discussions conducted by government agencies and civil society organizations to lobby and advocate for the rights of persons with disabilities.
By implementing these measures, governments can contribute to the enhancement of home-based programs for children with disabilities, ultimately improving their overall well-being and quality of life and ensuring that they become active contributors to the community.
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Ranilo S. Sorongon is manager of the Down syndrome project of NORFIL Foundation, an organization that works with and for children who are abandoned or neglected and those with disabilities and their families. He is also helping the Philippine Community Based Inclusive Development Network. He authored the guidebook Ensuring the Meaningful Participation of Children with Disabilities and is a staunch advocate for the rights of children with disabilities.
Maria Yolanda Michelle Bautista-Abundo is the Learning Support Coordinator of Maria Montessori Children’s School Foundation, Inc., an inclusive school. She directs all facets of the work to support the school’s special needs policy. She was part of the research team that conducted a study on the “Determinants of Employability of Persons with Down Syndrome,” commissioned by NORFIL Foundation, Inc. Partners for Inclusive Development.
Rosalyn Marie Gison Sorongon conducts orientations and trainings for parents and professionals on autism and other developmental disabilities, and on home-based programs. She was a consultant for NORFIL Foundation, Inc. Partners for Inclusive Development (NORFIL PFID) on their home-based programs for indigent Filipino children with disabilities and their families in different parts of the country.
Lei-lani David is a volunteer trainer and developer of digital talking books using the Digital Accessible Information System (DAISY) Format Standard and was a documenter for a training series conducted by the International Disability Alliance for the members of the Philippine Coalition on the United Nations Convention on the Rights of Persons with Disabilities. She has been doing project-based consulting for NORFIL Foundation, Inc.
