Exploring Wait Times for Pediatric Habilitation and Rehabilitation services for children who are Neurodiverse in Durham Region, Ontario.

This is a scoping review protocol that we are pre-registering on OSF. 1.0 Introduction Neurodevelopmental and neuromotor conditions encompass a wide range of disorders that impact children's functioning and quality of life1. Common conditions under the umbrella term of neurodiversity include autism spectrum disorders (ASD), learning disabilities such as dyslexia, neuromotor disorders including cerebral palsy, and developmental disabilities such as Down syndrome and fragile X syndrome1. These conditions affect neurological development and are often associated with challenges in intellectual functioning, communication, motor skills, and learning1. The early years of a child's life, up to the age of eight, are critical for developing cognitive, social, emotional, and physical skills2. This period is marked by important neuroplasticity, making the brain receptive to new learning and adaptation2. While this developmental phase is crucial for all children, it holds particular significance for those with neurodiverse conditions. For these children, this period of plasticity offers both a window of opportunity and a critical time for habilitation and/or rehabilitation services2. According to the WHO, habilitation and rehabilitation are two distinct yet connected constructs3. Habilitation services focus on helping patients develop new abilities that have not yet been acquired or that are unable to develop naturally3. Rehabilitation services are aimed at helping patients regain functioning and skills lost due to injury, illness, or disability4. Examples of these services include but are not limited to, physical therapy, occupational therapy, and speech-language pathology. These interventions aim to support individuals in learning, maintaining, or improving functional, daily-life skills4. In the context of habilitation and rehabilitation, the early integration of these services for children is important for improving overall development5. Early habilitation and rehabilitation can leverage brain plasticity to significantly improve various domains of functioning and well-being5. For instance, evidence suggests that in children with cerebral palsy, early physical and occupational therapy can enhance motor skills and overall functional independence by taking advantage of the brain's plasticity during critical developmental periods6. These early interventions have been associated with better long-term outcomes, reinforcing the importance of timely services6. According to the International Classification of Functioning, Disability, and Health (ICF), functioning is an umbrella term for body function, body structures, activities, and participation7. In the context of the neurodiverse population, it considers a child's health conditions, abilities, and environmental impacts on their development7. By addressing these aspects, habilitation and rehabilitation services can assist children with neurodiverse conditions to enhance their physical abilities, improve their communication and social skills, and boost their cognitive development7. 1.1 The problem Despite the critical need, pediatric habilitation and rehabilitation services in Canada face significant challenges, particularly for children with neurodiverse conditions8. These challenges include long waiting times to access health care, underfunding, resource shortages, increased demand driven by population growth, and challenges in service accessibility8. In terms of long waiting times, there are currently over 90,000 children in Ontario who are on waiting lists for community and school-based child development, habilitation, and rehabilitation services9. Additionally, more than 28,000 children are waiting for specialized care, and only one out of every three children can access community-based child development programs9. The waiting period for speech-language pathology services can surpass three years, resulting in a substantial delay in early interventions10. Due to the pandemic, the waiting time for healthcare services for children has increased significantly, now exceeding that of adults by more than double11. Although there is rising demand, funding for these services has not kept pace with the rising numbers of children with neurodiverse conditions. As a part of the 2021 Budget and Ontario’s Action Plan, Ontario has allocated $240 million over a period of four years to increase essential habilitation and rehabilitation services11. However, this funding is insufficient to meet the growing demand or effectively reduce delays in care for children11-12. Geographic disparities also play a role, with children in rural and remote areas facing greater access challenges compared to urban centers13. Particularly, the Durham Region, located within the Greater Toronto and Hamilton Area (GTHA), has significantly increased in population. As of the 2021 Census, Durham's population reached approximately 696,992, marking a 7.92% increase since the 2016 Census13. Notably, the Durham area shows varied growth among its municipalities, as Oshawa and Clarington have experienced significant population increases13. As the population grows, so too does the demand for services. Children’s Treatment Centres (CTCs) play a vital role in providing habilitation and rehabilitation services for children with physical, developmental, and communication needs in Ontario14. These centres provide a range of habilitation and rehabilitation services, including physiotherapy (PT), occupational therapy (OT), and speech and language therapy (SLP), for individuals up to 19 years old. Although over 180,000 children and youth with special needs receive services at CTCs annually14, it is mentioned that the provincial pediatric health care system is underfunded and underserviced15. In February 2023, the Children’s Health Coalition submitted a report to the Ontario Ministry of Finance highlighting the diminished access to services that needed to be urgently addressed. As of May 2022, more than 40,000 children were waiting to access ambulatory care services from pediatric hospitals, and 90,000 children were waiting for community- and school-based child development and rehabilitation care15. 1.2 Pediatric Habilitation and Rehabilitation for Children Who Are Neurodiverse in the Durham Region Grandview Children's Centre (Grandview), a ministry-funded Children's Treatment Centre (CTC) in Durham, Ontario, plays a crucial role in delivering specialized services to children with various needs within this geographic area16. Grandview's main activities involve delivering habilitation and rehabilitation services by conducting assessments, developing treatment plans, and providing ongoing therapy to children with various needs17. The organization aims to deliver meaningful and efficient client outcomes, foster a connected team, and collaborate with partners to support the overall development and well-being of children with special needs17. The centre also engages in community outreach and education to raise awareness about pediatric habilitation and rehabilitation and support for families17. Grandview's services align with the International Classification of Functioning, Disability, and Health (ICF) framework, emphasizing the importance of optimizing individual functioning and societal inclusion as part of a child’s development and quality of life (QOL) 18. At Grandview Children's Centre, the demand for services is steadily increasing, leading to an annual increase in the number of children and youths being serviced18. The current demand for services at Grandview is approximately 10,000 children and youth19. However, there are over 11,000 additional children on the waiting list for their services19. This number highlights the significant demand for pediatric habilitation and rehabilitation services in the region, driven by a growing population and the increasing need for specialized care for children with physical, communication, and developmental needs19. As the sole Children’s Treatment Centre in Durham Region, Grandview offers a comprehensive range of programs and services tailored to meet the diverse needs of children and their families. These services include occupational therapy (OT) to enhance functional skills, physical therapy (PT) for improving mobility and physical capabilities, and speech-language pathology (SLP) to address communication challenges. Additionally, Grandview provides both community-based rehabilitation, which focuses on delivering services in home or community settings, and school-based rehabilitation, aimed at supporting children within their educational environments. To meet the increasing demand, Grandview is expanding by combining its Oshawa site and several satellite locations into a larger main facility in Ajax20.. It will also keep three satellite locations in Clarington, Port Perry, Oshawa, and the Whitby Abilities Centre to make services accessible across the region. These changes aim to reduce service gaps, improve access to care, and support families in Durham Region20. 2.0 Objectives Synthesize the available literature on the duration of and factors associated with wait times for Canadian children with neurodevelopmental/neuromotor symptoms to receive habilitation and rehabilitation services The results of my research will generate evidence to inform policy and guide advocacy. This may be used to engage the Provincial Government to develop solutions to long pediatric rehabilitation wait times. This work aligns with the Make Kids Count initiative by the Children’s Health Coalition, which includes Empowered Kids Ontario and Grandview Kids’. This work may highlight local care inequities and foster partnerships between organizations like Grandview Kids, Ontario Tech University, and the Regional Municipality of Durham, enhancing resources, innovation, and service access for children and their families. 1. Morris-Rosendahl, D. J., & Crocq, M. (2020). Neurodevelopmental disorders

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