On October 30, the Select Standing Committee on Children and Youth released its report on a special project for children and youth with neuro-diverse special needs with a focus on eligibility and assessment processes. The Developmental Disabilities Association was a community organization that had an opportunity to share input as part of the public consultation process.
The report acknowledged and included our input in the following:
Barriers to Accessing Assessment:
- “There are several barriers to accessing assessments, with one of the most common being waitlists. Several organizations, parents, and caregivers shared that long waitlists for assessments mean that many children do not receive a timely diagnosis and access to services in the important early intervention stage … The Developmental Disabilities Association observed that children who do not receive a formal diagnosis before starting school may enter the education system unprepared with little or no additional supports or resources for them or their caregivers.”
- “Many families explained that they turned to private assessments because waitlists for public assessments are lengthy; however, they noted that only some families are in the financial position to be able to afford this option as private assessments can cost between $2,000 to $3,000. In some cases, there are waitlists for private assessments as well, although these are generally shorter than public assessments. Organizations, including Kids First Pediatric Therapy and the Developmental Disabilities Association, noted that some private clinics make diagnoses and then recommend private therapy at their agency which may be a conflict of interest.”
Diagnosis-based Eligibility and Funding:
- “The Committee heard repeatedly from parents, caregivers and organizations about gaps and inequities with eligibility for funding and services, particularly with respect to the use of diagnoses to determine eligibility. Many highlighted that children with ASD receive funding for supports and services while children with other diagnoses and conditions, including FASD, ADHD and gifted learners, do not receive similar levels. As such, families are often anxious to pursue and receive specific diagnoses such as ASD to trigger funding. The Developmental Disabilities Association reported that psychologists sometimes diagnose a child who has intellectual disabilities or mental health disorders with ASD so the family can receive funding for necessary therapies or other assistance.”
- Another common issue was missed time at work due to a lack of sufficient support and services, particularly for children with neuro-diverse needs other than ASD, and needing to keep up with appointments and assessments … The Developmental Disabilities Association observed that families are expected to homeschool or pay for specialized education when children are sent home from school because they do not have adequate supervision, or they demonstrate challenging behaviours. Those who cannot afford private school may feel pressed to quit their jobs to look after their child.”
As a result, the report has also outlined 16 recommendations:
- Enhance universal screening during 18 month immunization appointments, and explore opportunities for additional universally accessible screening between the ages of 18 months and five years, to improve early identification and long-term outcomes of children with neuro-diverse conditions.
- Allow speech language pathologists to directly refer children for assessment of neurodiverse conditions to support early identification.
- Require ministries and other publicly funded organizations and service providers to publicly set benchmarks for reducing assessment and service wait times and publicly report on outcomes on an annual basis.
- Conduct a public awareness campaign on the full range of neuro-diverse conditions with a focus on reducing stigma, and improving access to assessment and services.
- Perform a cost-benefit analysis of allowing registered pediatric psychologists to bill MSP directly.
- Ensure services and supports in the early years and within the school system are based on need and functional ability and provided prior to diagnosis.
- Promote a positive learning environment for all children by ensuring that the Ministry of Education’s inclusion policy is observed and enables children with neuro-diverse special needs to be part of the school community while accessing individualized education.
- Conduct a labour force review of all professions serving children and youth with neuro-diverse special needs, including examining open positions, service wait times, compensation and post-secondary training.
- Based on data from the labour force review, increase and expand access to occupational therapy and speech-language pathology services.
- Provide incentives and/or rural-based post-secondary programs to attract early childhood educators, speech-language pathologists, pediatric therapists and other professionals to rural, remote, and northern communities and to those professionals willing to travel to provide services in these communities.
- Expand the use of telehealth to reduce travel and improve access to services for families.
- Create a single electronic health record for children with neuro-diverse special needs that can be accessed by service providers (such as child development centres) throughout the child’s life.
- Improve transitions to school by beginning transition planning earlier and providing families with the flexibility to delay their child’s kindergarten entry by one year.
- Implement transition planning involving both community-based therapy teams and school-based therapists during the transition to school.
- Establish community-based family navigator positions, in child development centres where they exist, and a comprehensive website in multiple languages to help families navigate assessments, supports and services, including helping to identify next steps, connecting them to providers, peer support groups and other families and facilitating contracted group services.
- Provide more funding for, and increase access to, respite care across the province.
We are very pleased that the Standing Committee solicited input broadly and considered the perspectives of families, professionals, agencies and government employees. The Committee’s recommendations are thoughtful, constructive and can lead to a positive transformation in the way we as communities support children and youth with diverse abilities/special needs. DDA is looking forward to developing innovative, inclusive solutions for infants, children, families and adults as we move forward.
For more details, read the full report on Children and Youth with Neuro-Diverse Special Needs.