3.2.1 Coordination gaps between DEPD and health department.

The governance and leadership of the Department of Empowerment of Persons with Disabilities (DEPD) evolved from the prior Special Education Department, which was an independent entity before the enactment of the SEPD Act in the province. The special education department became the custodian of DEPD and prioritize special education, instead of disability-inclusive health in the province. Health is an independent provincial department.

Effective implementation of the Sindh Disability Act 2018 requires strong intersectoral collaboration between Department of Empowerment of Persons with Disabilities (DEPD) and health departments. The DEPD is a provincial government department responsible for implementing legal frameworks, policies and programs related to the rights, inclusion, and welfare of people with disabilities in Sindh. However, the health department is currently responsible for delivery of health services in the province. Our interviews reveal ongoing coordination gaps between DEPD and the health department, leading to inadequate collaboration and a lack of focus on prioritizing and implementing inclusive health initiatives. A government official highlighted these limitations:

"We cannot make health policies and provide care... Health is an independent department. We can only do collaboration and coordination with other departments. Implementation of the health policies is the responsibility of the health departments." (Government Official, Karachi)

Similarly, an NGO worker stressed the absence of structured mechanisms for collaboration:

"There is no real collaboration between the DEPD and the Health Department to implement inclusive health services. Each department works separately. There should be a designated focal person in every department to lead efforts and provide updates to DEPD." (Disability Activist, Hyderabad)

A health department administrator highlighted systemic exclusion, noting the lack of formal engagement in disability-related initiatives:

"We were never called in the meetings [inclusive health], and we also never receive any letter related to [inclusive] health services for people and children with disabilities. We can equip our system if we have been informed through official correspondence of such [inclusive] initiatives." (Health Department, Sukkur)

Participants highlighted that lack of intersectoral coordination widely affects children with disabilities, such as early screening, referral, rehabilitation, and continuity of care depend on structured collaboration between disability, education, and health sectors that are currently absent in the province.

3.2.2 High turnover and policy disruptions.

Frequent transfers of government officials have been a serious hinderance in implementation of the Act and delivery of health services. Regular changes in leadership lead to discontinuity and reduce institutional memory, complicating efforts to incorporate disability-inclusive priorities into the health sector system. A government official pointed out this ongoing systemic issue.

"The frequent transfer of bureaucrats and government officials disrupts policy implementation. It takes time for new officials to understand the scope of their work and establish collaboration with other line departments. These challenges delay the execution of disability-inclusive policies particularly for children."(Government Official, Karachi)

Participants consistently noted that each leadership change necessitated a period of adjustment as new officials needed time to understand the Act’s mandate and its importance for child healthcare. However, before significant progress could occur, many were replaced or transferred, resulting in a cycle of stalled implementation. As one respondent explained, officials often defaulted to existing agendas rather than introducing disability-inclusive initiatives:

“Every leadership has its own priorities. Once someone gets an idea of this new disability-inclusive act mandate, they are transferred or replaced. Flagship initiatives are usually prioritized, and no new initiatives are taken by officials. (Disability Activist, Karachi)”

For children with disabilities, high turnover of officials is particularly harmful, because of disruption and delays in continuity of child specific services, such as early intervention services, and child inclusive care pathways.

3.2.3 Weak private sector involvement.

The Sindh Disability Act 2018 mandates private sector involvement in disability-inclusive services, but actual implementation is limited. Despite these legal requirements, private hospitals and clinics show low awareness and participation due to poor incentives, awareness, and lack of commitment, especially when majority of population, for different reasons, don’t go to the public health facilities. As one government official acknowledged:

"We have been working on it to engage the private sector to provide free healthcare services to disabled children and others… However, various proposals are taken into consideration, and it may take some time to materialize them." (Government Official, Hyderabad)

A physician from a tertiary private hospital further highlighted information gaps:

"We do not provide free healthcare services to children with disabilities because the government did not share such information and SOPs with us. We have collaborations with some NGOs that sponsor the cost of consultancy for children with intellectual disabilities." (Healthcare provider, Karachi)

A disability activist explained the consequences of such systemic gaps

"Many private hospitals are approachable and provide specialized care. The caregivers of such children can’t seek treatment from private hospitals because they are too expensive and don’t provide free services to anyone." (Disability Activist, Dadu)

The governance and leadership challenges limit the translation of the Sindh Disability Act into practical, child-centred healthcare actions within routine health services.

3.3.1 Lack of budget allocation for disability-inclusive care.

Dedicated financial investment is crucial for implementing disability-inclusive healthcare, but the government has not allocated funds for infrastructure, equipment, or workforce training. The authority responsible for developing opportunities for people with disabilities, DEPD, lacks the necessary funds to carry out mandated initiatives and perceives inclusion as expensive. As reflected by a healthcare provider:

"Disability-friendly health facilities require budget allocation to improve infrastructure, hospital equipment, and healthcare provider training. Focusing on children [with disabilities] requires even more resources due to their unique needs." (Healthcare provider, Karachi)

A government official also confirmed the lack of designated health-sector funding to DEPD. The health-related budget is directly transferred to district health authorities instead of DEPD

"We allocate a separate budget for special education. Special children also receive some free medicine as other children receive from public hospitals. There is no specific budget allocation for it [disability]. I never heard about budget allocation to DEPD to take initiatives for overall and children with disabilities." (Government Official, Karachi).

3.3.2 Lack of health insurance for children with disabilities.

Although the Sindh Disability Act 2018 mandate provision of health insurance to people with disabilities, including children. However, there is no established structured insurance program in the province. The lack of comprehensive financing mechanisms exacerbates existing inequalities. A worker from an NGO stressed:

"The health insurance system is not launched in our province. Free health insurance must be given to children. These children are more vulnerable and experience multiple diseases. The healthcare expenses are higher for children with disabilities as compared to other children." (Disability Activist, Dadu)

A physician similarly noted the reliance on families’ own resources:

"I do not know about free health insurance for such children. Other provinces have some insurance and social security plans, but we don’t have this. Parents often cannot afford rehabilitative services… rehabilitation services are costly, and poor parents cannot afford them from private sectors." (Healthcare provider, Sukkur).

The government has been working to establish health insurance coverage, but currently, there is no free insurance mechanism that directly benefits children and their well-being. Government officials have described ongoing negotiations with private insurers, but coverage has yet to be secured:

"The government has been working on the feasibility of affordable insurance for the disabled population, and we will start free health insurance for children with disabilities soon. Currently, we are negotiating with private insurance companies, and providing health insurance coverage is a challenging task." (Government Official, Karachi).

Inadequate budget allocation and the absence of health insurance undermine the realization of the Sindh Disability Act for children with disabilities highlighting financial barriers for child healthcare.

3.4.1 Missing disability-disaggregated data.

Sindh’s HIS lacks disability-specific indicators, constraining evidence-based planning and monitoring for inclusive health system strengthening. A government official explained:

"Patient data is collected only from a clinical domain. Our information systems do not capture essential socio-demographic characteristics, disability status, or vulnerabilities, making inclusive health planning difficult." (Government Official, Hyderabad)

Integration of disability-disaggregated data within HIS is necessary to support compliance with rights frameworks and to guide inclusive policy reforms. Most facilities still maintain manual records, excluding disability-related variables.

4.1.1 Weak newborn screening and referral mechanisms.

Newborn screening is crucial for early detection and intervention for impairments and so is mandated under the Act. However, our findings show that most healthcare facilities lack organized screening protocols. Healthcare providers are unaware of standardized guidelines, and there is no follow-up system for referred cases. As one provider noted:

"When a baby has an obvious physical impairment at birth, we just tell the family to see a Child Specialist. But honestly, there’s no system in place to check if they actually go or get the consultation they need." (Healthcare provider, Dadu)

Additionally, most women in rural areas seek perinatal care from private or primary health facilities, where advanced scanning and diagnostic services are unavailable. Financial barriers further restrict access, as many women cannot afford the necessary second-trimester scans recommended for screening fetal anomalies for disability prevention. A gynecologist highlighted the lack of availability and awareness of these recommended scans for identifying abnormalities during pregnancy:

"Some scans and tests should ideally be done in the second trimester to check for problems in the fetus, but in our area these scans aren’t available. Many women are also unaware of their importance because no one informs them." (Healthcare Provider, Hyderabad).

4.1.2 Inaccessible health facility infrastructure.

Health facilities of all levels in Sindh lack accessible infrastructure and accommodation. They often lack ramps, accessible seating, sign language interpreters, or adjustable medical equipment for children with disabilities. A disability activist explained:

"Mothers sit on the floor, holding their disabled children for hours. Our hospitals do not have sanctioned seating arrangements or separate queue for people and children with disabilities.” (Disability Activist, Karachi)

Another disability Activist also shared the similar perspective.

“Nobody prioritizes to provide services to children with disabilities on priority...they receive services as other children receive from hospitals and clinics”. (Disability Activist, Sukkur)

Our interviews highlighted that while some newly constructed private hospitals have begun incorporating ramps to meet accessibility requirements, these measures remain limited in scope and often inadequate for persons with disabilities. Participants emphasized that such initiatives are frequently undertaken to satisfy building approval requirements rather than to genuinely improve accessibility. As one disability activist observed:

“Now some private health facilities make slopes instead of proper ramps to fulfill the requirements. These slopes are not accessible to children and cause major injuries if someone tries to use them.” (Disability Activist, Karachi)

Healthcare providers also pointed out the gaps in equipment and services:

"The sign language to guide deaf people is not placed in health facilities. The hospital equipment is not adjustable for children, and this causes a lot of challenges to treat children, especially those with physical and intellectual disabilities due to lack of safety features." (Healthcare provider, Sukkur)

4.2.1 Limited provider awareness of disability inclusive care.

Healthcare providers often lack awareness of the needs of children with disabilities, resulting in delayed or unsuitable care. Additionally, some providers view disability-inclusive services primarily as targeted toward adults’ priority. One provider stated:

"We don’t have a mechanism for adults [with disabilities], so how can we provide such services to children? First, we should think about adults, and then we can do it for children." (Healthcare provider, Dadu).

Our interviews highlight that training gaps exist among healthcare professionals, particularly in communication, inclusive care and behavioral management skills. Many providers rely solely on attendants for patient history rather than engaging directly with children. A pediatrician shared:

"We always communicate with the attendants of children who are deaf, non-verbal, or autistic. These children always come with someone because we don’t understand them. We diagnose their conditions based solely on the history provided by the attendants." (Healthcare provider, Hyderabad).

Another participant emphasized the need for behavioral change and capacity-building training of healthcare providers regarding inclusive care:

"Physicians and staff often avoid attending to children who are difficult to handle. Some children with disabilities have hygiene issues or struggle to cooperate during consultations. As a result, some physicians choose not to examine them and instead refer them to another provider or delegate the prescription to an assistant." (Healthcare provider, Karachi)

4.3.1 Shortage of disability-specific medical supplies.

Healthcare facilities lack essential supplies such as pediatric wheelchairs, adaptive hearing aids, rehabilitation materials, and other disability-specific equipment. Additionally, there is no organized system to provide free corrective surgeries or medical assistance, causing families to depend on out-of-pocket payments. A healthcare provider noted:

"We don’t have AT devices for children. Parents have to buy everything themselves, which is unaffordable for many." (Healthcare provider, Karachi)

A government official confirmed the lack of structured support:

"The government has not set any mechanism to provide free surgery services and AT devices at any hospital”. (Healthcare provider, Hyderabad)

4.3.2 Limited access to affordable assistive devices and technologies.

Assistive devices are essential for mobility and independence, yet their availability in public facilities for children is absent. Caregivers often rely on private suppliers, where costs and child specific affordable devices is the major concern. A disability activist stated:

"Assistive devices are so expensive in the private market that most parents [of children with disabilities] either don’t get or rely on outdated or second-hand devices." (Healthcare Provider, Karachi)

A physician emphasized the challenges posed by children’s growth and the need for customized devices:

"Children are growing rapidly, and they need appliances according to their growth pattern and age. Based on the severity of disability, children need customized assistive devices. In our area, children do not get even basic devices to support their basic needs." (Healthcare provider, Sukkur).

Our interviews highlighted that these children require growth related and customized assistive devices as they grow older. However, the absence of public provision, lack of awareness, and high out-of-pocket costs limit children’s functional development.