Gaps in autism services persist as referrals continue to rise
Autism professionals, families and stakeholders have highlighted gaps in services that persist in Bermuda for those on the spectrum, emphasising the need for early assessment and diagnoses — and legislation ensuring they are mandated.
Following questions from The Royal Gazette about some of the concerns raised in the community, a spokeswoman for the Ministry of Education revealed that its Child Development Programme had observed a “significant increase in annual referrals” for developmental assessments, more than doubling since 2019, and that there are at present 66 children under the age of 5 on the wait list.
Early intervention is often critical to achieving better outcomes for those with autism, while delays in services can contribute to setbacks.
The Government has assured that gaps in the free CDP services, including the lack of a dedicated psychologist to carry out assessments and diagnoses, are being addressed.
These services are available from a few private entities, though insurance companies require diagnoses prior to providing coverage.
According to professionals working for autism charities in Bermuda, some families are opting to travel overseas to access diagnostic services — though wait lists are common worldwide.
Jahnae Harvey, the executive director of Tomorrow's Voices, a charity offering clinical services using Applied Behavioural Analysis, an evidence-based, data-driven therapy, and social programmes to those on the autism spectrum, said that access to financial support can be a challenge and that legislation could help to alleviate associated costs while mandating equal access to services.
Dr Harvey told the Gazette: “Some individuals are covered by insurance and some are not, and not all of the insurance companies provide coverage.
“One of the biggest issues is lack of legislation specific to individuals with disabilities, including those with autism.
“We need legislation to ensure equality of support and to ensure individuals are accessing the medically recommend services.
“People get their diagnoses and recommendations, but there is no legislation to say they should be getting those things. It would ensure early intervention services, reaching children at the sensitive periods of development and ensuring safeguards.
“If you have the legislation then the diagnostics and everything else would fall in line.”
Tomorrow’s Voices subsidises more than 80 per cent of its clinical fees to help reduce financial barriers.
As part of the Government’s restructuring, an additional psychologist post has been established and is to be filled alongside an existing vacant post within the programme.
The ministry spokeswoman said: “Once engaged, these two psychologists will support the provision of developmental assessments and ongoing monitoring.
“In addition, a screening programme manager role has been introduced. Collectively, these new posts, together with other organisational changes, have been implemented to respond more effectively to the evolving needs of children and families across Bermuda.”
Sherri Bucci, the president of Bermuda Autism Support and Education, a local autism charity, spoke to the Gazette in April 2024 about service gaps then, saying work needed to be done to make the CDP “truly operational”.
Ms Bucci has now said: “There appears to be limited public awareness of any meaningful progress in this area. There has been little transparent communication or publicly measurable progress.
“Families are still waiting and children are still missing out on time-sensitive supports that can significantly improve long-term outcomes.
“The most serious and persistent delays are occurring at the assessment stage, which is required for a formal autism diagnosis. These delays continue to leave families in limbo during the most critical developmental period of their children’s lives.
“As the prevalence of ASD is increasing, the capacity to diagnose ASD early has been very limited, especially for families who are unable to afford private diagnostic services.
“These families depend on the CDP for diagnosis and families have been experiencing long waits for services.”
She said Base welcomed the plan for two CDP psychologists but questioned when it would be realised.
1. A paediatrician identifies if an individual falls within developmental norms or not. The paediatrician writes a recommendation for diagnosis and makes a referral, either locally or overseas, based on the wait list
2. The individual will take part in the diagnostic process — a combination of observation and patient questionnaires
3. Recommendations are provided as a result of the diagnosis
4. Recommendations are enforced
5. Services are sought
* Information provided by autism charity Tomorrow’s Voices
Speaking to the increase in autism referrals at the CDP for developmental assessments, the ministry spokeswoman said that there were 30 in 2022 and 33 in 2023, compared with an average of 11 to 15 referrals between 2019 and 2021.
She said pending securing the services of a full-time psychologist, the CDP relies on three private-sector psychologists to conduct developmental assessments.
Ms Bucci described the use of these psychologists as “a stopgap measure,” adding: “It is disappointing to families still on long wait lists for assessment.”
The ministry spokeswoman said: “The Government remains focused on mitigating barriers and reducing the burden on families by ensuring that services are provided locally and free of charge.
“The Government of Bermuda remains firmly committed to providing free diagnostic services for all children in Bermuda. The organisational restructuring of the CDP represents a significant step forward in advancing its mission to deliver high-quality early intervention services, as well as comprehensive support and guidance to families.”
The CDP at present provides developmental screening services for children aged 18 to 48 months.
Developmental assessments are offered to families referred by a paediatrician or where concerns are identified through the screening process.
On diagnosis, individuals with autism are given tailored recommendations for different arms of a multidisciplinary team including speech and language pathology, occupational therapy and physiotherapy.
The ministry spokeswoman added: “At present, the Department of Health provides screening-related services in speech and language pathology, occupational therapy and physiotherapy. As a result of the restructuring, these services will now also be incorporated within the CDP’s service offering.”
Ms Bucci said this was “excellent news”.
“Having all early intervention services under the one programme will open up the opportunity for a more multidisciplinary approach to early intervention,” she explained.
“This approach is progressive. It is more sustainable and family centred.”
She questioned the timeline for the reorganisation of CDP.
Dr Harvey said Tomorrow’s Voices is looking to expand its services to include speech and language pathology in its offerings.
Ms Bucci said that the consequences of not gaining early intervention services can include isolation, poor social skills and communication, joblessness, greater dependency on others and increased mental health issues such as debilitating anxiety.
Dr Harvey added: “If you are not catching things in the sensitive periods, it will be more challenging to retroactively address.”
Clinicians at Solstice, a private mental wellness centre, say that while awareness of autism and neurodiversity has grown in Bermuda, families continue to face significant barriers to timely assessment and support.
Solstice assesses both children and adults, and offers a wide range of evidence-based autism interventions.
Laura Thomas, a child psychologist at Solstice, explained that delays after early identification can have serious consequences for children.
Dr Thomas said: “Some children are flagged through developmental screenings as potentially neurodivergent, yet long waits for assessment can mean they are unable to access the school supports they need.”
The team said the insurance approval process is one of the biggest obstacles in Bermuda. Before testing can begin, insurers frequently require multiple reports and pre-authorisations. Gathering these documents and waiting for approval can take weeks or months, slowing the assessment process and leaving children without help during critical periods.
Dr Thomas noted that quality assessments must be comprehensive.
“A neurodevelopmental assessment should include cognitive testing so that ADHD, specific learning disabilities and autism are considered together.”
Kelly Madeiros, managing director at Solstice, said capacity across the island fluctuates depending on specialist staffing.
“Wait lists are very dependent on whether qualified clinicians are available to conduct neurodevelopmental assessments,” she said.
“There have been periods when Solstice did not have clinicians with this specific expertise, which increased pressure on the few agencies able to provide testing.
“At present, Solstice has qualified clinicians in place and only a slight wait list, and we are putting processes in place to complete assessments efficiently.”
She said her team insists that stronger coordination between schools, insurers, public services and private providers is “essential”.
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