Bridging the information gap towards inclusive governance

By Abner Manlapaz, Senior Associate of Center for Inclusive Policy and Persons with Disability Affairs Office of Batangas Province

Inclusion and participation of persons with disabilities in their community remains elusive, despite the Convention on the Rights of Persons with Disabilities (CRPD) , the Sustainable Development Goals (SDG) and other international instruments and frameworks. To be more responsive and accountable to the general welfare of the people, the powers, authority, responsibilities, and resources of local government were increased to deliver specific basic services and facilities indicated in the Local Government Code of the Philippines.
To address the unmet needs of persons with disabilities, Persons with Disability Affairs Office (PDAO) are mandated to collect relevant data on persons with disabilities, formulate and implement policies, plans and programs amongst other functions as indicated in R.A. 10070 .

Inspired by the methodology used in the National Disability Prevalence Survey (NDPS 2016) of the Philippine Statistics Authority (PSA), the Government of Batangas province is currently piloting the Disability and Needs Assessment System (DNAS) in selected local government. The DNAS aims to (1) Provide better access to the disability card as stipulated under R.A. No. 9442; (2) Gather data on support needs of children, working adults and older persons with disabilities to enable better case management and more effective referral to existing services; (3) Collecti relevant data on persons with disabilities and their support needs for the development of policies and programs, projects and activities in support of their inclusion; (4) Create an understandable, transparent, consistent methodology to improve confidence in the system of delivering the disability ID card; and (5) Connect with other existing databases such as PRPWD, CBMS, DDRRM to optimize case management, policy planning and monitoring.

1. Background
   The Philippines collects disability data in censuses, surveys and administrative data. A huge jump in disability prevalence was seen between the 2010 and 2020 Philippine census, from 1.57% (1.443 million) to 8.7% (8.46 million). The National Disability Prevalence Survey 2016 report said that prevalence of severe disability amongst 15 years old and above is 12 percent.
   The Magna Carta for Persons with Disabilities as amended by Republic Act (R.A.) Nos. 9442 and 10754 provides discounts and tax exemption privileges to persons with disabilities who have identification card issued by the local government where persons with disability resides. This prompted the establishment of national database of persons with disabilities also known as “Philippine Registry for Persons with Disabilities.”

Though the number of persons with disabilities in PRPWD has increased from 530,916 (as of June 27, 2022) to 1,212,395 (as of Sept. 12, 2023), the number of persons with disabilities with a disability ID card who are in the national registry is low. In a study conducted to determine the cost of raising children with disabilities in the Philippines, it was estimated that only 325,000 children with disabilities have disability ID card while 1.27 million children with moderate and severe functioning difficulties identified in the study do not have the ID . This has serious implications for the wellbeing of children with disabilities as it means that they will not be able to access entitled services such as the PhilHealth benefits for children with disabilities.
With the passage of the Local Government Code of the Philippines , local government units (LGUs) were given more powers, authority, responsibilities, and resources for a more responsive and accountable governance essential in the promotion of the general welfare of the people. The Code explicitly enumerated the different basic services and facilities for which each LGU is responsible.

In this framework, the Persons with Disabilities Affairs Office (PDAO), as the institutional mechanism for implementing programs and services for persons with disabilities in every province, city and municipality, needs an information system to identify unmet needs and barriers faced by persons with disabilities for appropriate policy and program responses.
Despite various laws to promote social inclusion of persons with disabilities, they continue to be in a disadvantage situation. Persons with disabilities and their families face multiple financial burdens: (1) higher expenditures on general items such as food, clothing, shelter, health care, etc.; (2) disability-related Extra Costs ; and (3) opportunity costs , etc. that result in higher rates of poverty, lower levels of education, poorer health conditions and lower rates of employment.

In 2019, The Persons with Disability Affairs Office (PDAO) of Batangas province requested technical assistance from the Center for Inclusive Policy (CIP) to develop and pilot the disability assessment system to (1) Enhance access of persons with disabilities to obtain the Disability ID Cards by creating an understandable, transparent, and consistent methodology; (2) Gather data on the support needs of- and barriers faced by children, working-age adults, and older persons with disabilities; (3) Support case management and referrals to programs and services; (4) Help in the development of policies, projects, programs, and activities based on the collected data; and (5) Connect with other existing databases such as PRPWD, Community-Based Monitoring System (CBMS), Disaster Risk Reduction Management (DRRM). Through these activities the assessment system can be used to better implement policies, monitor them, and provide analytical tools that can assist with future policy development.. The project which is piloted in selected cities and municipalities representing different income class and from different districts of the province developed the assessment tools.

Based on various consultations and the experience of the pilot local government during the rollout of the tools, all five local governments are being supported to establish the system in their localities. Moreover, during the various presentations of DNAS as a tool to improve access to disability ID card and case management to support access to services, many local government expressed interest to use the system in their localities. They have requested training to enable them to use the system.

The Philippine Development Plan (PDP) 2023-2028 indicated that the government will establish disability cash grants to cover disability. Additionally, to fully implement the mandatory membership and exclusive package in PhilHealth. (Pp.113/460). In support of the legislative agenda to establish Disability Support Allowance (Pp.120/460), The Congress is working on the passage of Disability Support Program whereby Disability Support Allowance and other disability support services will be available to persons with disabilities.

2. The Project
   Before the CRPD, disability assessment was based on impairment alone, leading to high dependency on medical diagnosis as basis for disability determination. In countries where there is insufficient number of medical specialists, requiring medical diagnosis as proof of disability brings additional barriers to persons with disabilities and their family who are already overburdened with numerous access issues in various areas of socioeconomic life. In fact, for some people, it makes accessing disability benefits impossible. Moreover, at times a medical diagnosis offers little information regarding the person’s needs. People with the same medical diagnosis can have very different functional limitations.

To improve the access to the disability ID card, the National Council on Disability Affairs (NCDA) issued an Administrative Order to ensure that persons with an apparent disability will not be required to submit a certificate of disability from a physician or doctor to prove presence of disability. However, for persons with non-apparent disability, a certificate of disability issued by specialists or appropriate physicians is required.

The new guidelines for issuing the disability ID card issued by the authorities clearly recognizes that disability determination is not the function of physicians or doctors alone.
While barriers still exist, it is noteworthy to see that progress has been made over the years to improve access to getting the ID. Many local governments recognize that disability determination is not a function that only medical professionals can do. In fact, R.A. No. 9442 recognizes that persons with an apparent disability may use school assessments or disability certificate as proof of disability. In practice, t offices issue the disability ID card based on the visibility of the impairment such as for those who have a physical impairment or impaired mobility or who are totally blind, missing limbs, limping and the like. To institutionalize this practice, the National Council on Disability Affairs issued Administrative Order No. 001 series of 2021 known as the “Administrative Order on the Issuance of Persons with Disabilities Identification Card Relative to R.A. Nos. 9442, 10754, 11215, 10747.

Even though data is being collected when persons with disabilities apply for their disability ID card, there is a data gap in understanding the needs of persons with disabilities. To address this gap, the PDAO Batangas province developed a disability assessment system that each local government could use to identify the support requirements of persons with disabilities to inform planning, implementation and monitoring. In support of undertakings by PDAO Batangas province and CIP, UNESCAP, UNICEF, ILO and World Education-USAID-OKARD CBID provided support to carry out the project.

Effective planning, implementation and monitoring requires a system that collects relevant information on persons with disabilities and reflects the spirit of the CRPD. This information has to be available and usable at the local level with the possibility of being aggregated and used at the national level to inform planning, implementation and monitoring at different governmental levels.

At the start, the project team consulted with key local government officials representing the Local Council, Local Social Welfare Office, Local Health Office, Local Planning Office, Persons with Disability Affairs Office and Organizations of Persons with Disabilities to get their thoughts about the possibility of establishing a Disability and Needs Assessment System to serve as a local registry of persons with disabilities. Furthermore, the registry would inform their policy decisions and the development of programs and services in response to the needs of persons with disabilities. The inputs received served as the basis of the concept note which was further developed through additional consultation with various stakeholders from several local government, national government agencies, professional organizations, and organization of persons with disabilities. Additionally, a Project Advisory Group composed of National Council on Disability Affairs, Department of Health, Philippine Statistics Authority, Department of Social Welfare and Development, Department of Interior and Local Government, Physicians for Peace and U.P. College of Allied Medical Professions was formed to provide guidance to the project team. The information gathered became the basis for designing the Disability and Needs Assessment System.

DNAS comprises 16 components (see Figure 1). The Washington Group Questions (WGQ) were included to enable interoperability to other datasets for better data analysis. For example, since the census and other surveys in the Philippines use the WGQ, having them as part of the assessment tool allows for the comparison of the population of people being assessed to the general population. The WGQ are not used to determine eligibility, but rather to serve a statistical link to other data sets so they can be used jointly.
Various components of DNAS serves different purposes. The disability documents, health conditions, and the different functioning domains (e.g., self-care, hearing, etc.) is the basis for identifying who is eligible to obtain the disability ID card. Proof of disability is being compared to the functioning assessment to verify presence of disability. If there is no functionial difficulty, excluding those with cancer and rare disease, further assessment will be conducted through the Validation and Case Management Team. Home and community activities including attitudinal barriers provides information on the experience of persons with disabilities within their home and community. Information on available support that they received is also collected to determine where the support is coming from e.g., family, government, non-government including organizations of persons with disabilities.

Clusters of components have specific purposes. They perform three major functions: (1) eligibility determination, (2) case management ad referral to services, and (3) policy and planning development. For the first function, DNAS will determine if the applicant is eligible to obtain the disability ID card. It can also be used to determine eligibility for any social protection programs that may already exist or will be developed in the future e.g., the Disability Support Allowance program. Secondly, DNAS has the capability to provide information for case management to support access to services e.g., enrolment to PhilHealth, referral to financial assistance program such as Assistance to Individuals in Crisis (AICS) program. Lastly, data generated by DNAS can be used for policy planning and development (see figure 2).

In addition to DNAS being a breakthrough that will revolutionize what a disability registry should look like, it is also relevant to current policy on who is eligible to obtain the disability ID card (see Figure 3). As mentioned above, the disability assessor will make an assessment whether the applicant has an apparent disability or not. If there is an apparent disability, the disability assessor will verify if the disability is apparent even if the applicant is submitting a medical certificate indicating an apparent disability. Additionally, the assessment should report functional difficulties, otherwise, the disability assessor may opt to refer the application to the Validation and Case Management Team for a decision. For non-apparent disability, the disability assessor has to evaluate the medical certificate submitted if there is no discrepancy to the current policy. Excluding cancer and certain types of rare diseases, the presence of functioning difficulty will confirm the applicant’s eligibility to obtain the disability ID card. Otherwise, the disability assessor has to refer the case to the Validation and Case Management Team.

As seen in Figure 3, determination of disability depends on whether it is an apparent or non-apparent disability. In the future, when policy on disability determination changes, the system can be modified without changing the information being collected. However, it will be very challenging if categories of disability keep changing as it will be difficult to maintain old and new datasets, not to mention, the modification in the program code and the confusions it may bring to the people.

Additionally, the system can generate information on what assistive devices and technology are needed, as well as human assistance, the applicant’s experiences in accessing facilities and services, etc. For example, the datasets can provide information on the educational status of children and the reasons why they are not attending school. Another example is the employment status and reasons why they are not working. Another interesting example is in disaster risk reduction (DRR).

Future development of the system will allow DNAS to provide information on whether a person with disability has mild, moderate or very high support needs. This kind of information can be used for developing social protection programs targeting different degree of disability.

For now (see Figure 4), DNAS can assist in the identification of persons with disabilities eligible to obtain the disability ID card based on current policy. It can also generate datasets for uploading to the Philippine Registry for Persons with Disabilities to contribute in building the national registry. Additionally, other datasets can be generated based on government reporting mechanism such as the Local Government Disability Data Compliance Report. Collected information will also inform local government who needs support to access services and what are the current unmet needs that needs to be included in the plan (see Figure 5.