HSE Autism Review

This is a copy of the submission by the Irish Society for Disability and Oral Health to the HSE Autism Spectrum Review

September 2017

 

Introduction

Access to dental care ensures that all people have the opportunity to receive essential treatment, avoid infection and live without dental pain.  For people with autism spectrum disorder (ASD), dental services may need small but impactful adaptation to meet their needs.  This submission is by the Irish Society for Disability and Oral Health, a group of dental professionals committed to improving the oral health of people with disabilities in Ireland.  The submission begins with an overview of dental services that people with ASD engage with in Ireland, followed by examples of what would be considered good and poor practice in oral health care for people with ASD.  Recommendations for services that would enhance the lives of people with ASD concludes the submission.

 

Dental Services for People with ASD in Ireland

The oral health care needs of people with ASD vary greatly.  While many people with ASD may only need access to a supportive dental professional, social realities, poor communication, behavioural issues and co-morbidities mean that for some people with ASD, greater expertise and supports are needed.  Therefore, a range of dental services are needed to ensure access, dictated by need, for people with ASD in Ireland.  However, only a limited number of dental professionals within the HSE dental service provide tailored approaches to care and even fewer private practitioners offer dental care to people with ASD.  The hospital dental services support patchy primary care services with secondary and tertiary care.  There is very limited training available in the support of people with ASD and dental staff usually have little or no involvement with the multidisciplinary team in relation to preventive care.  Access to sedation services is a lottery and treatment under general anaesthetic is often the only treatment option, often involving lengthy waiting times. 

 

Examples of Poor Practice

Barriers to care are particularly problematic in dentistry as is evident from the reports of parents seeking appropriate dental care for their autistic children.  As dental professionals with an interest in providing oral health care for this group, such barriers in our experience include:

  • Not knowing how to find a dentist who is suitably skilled and experienced
  • Feeling disempowered in interactions with publicly-provided dental care
  • Feeling unheard when conveying the nuances that are so important to successful outcomes
  •  Having no say in how often or in what way dental services are accessed.

The following real-life example represents one experience with an unusually good but still imperfect outcome

John, who has ASD and is non-verbal, recently moved from England where his teeth were regularly cleaned under sedation in order to control his gum disease.  In Ireland, his oral hygiene deteriorated because his local HSE dental service could not offer this kind of treatment without general anaesthesia and oral hygiene was not a priority in his residential care unit.  John’s mother knew that general anaesthesia would be very traumatic for him and was not, therefore, a suitable option.  John visited an ISDH member and the utilisation of standard autism-aware communication techniques proved very successful. However, he now has to cross 3 counties every 6-8 weeks for cleaning that does not rely on drugs to make dental care acceptable and keep his mouth healthy.  His medical card only covers 2 cleanings each year and his parents pay for all other cleaning visits. 

 

Examples of Good Practice

There are nationally and internationally recognised principles of oral health care for people with ASD including the following:

 

  • Early intervention dental services with dental services being linked into the multidisciplinary team
  • Access to appropriate and timely primary care ‘dental homes’ for children with ASD
  • Access to secondary and tertiary care services such as sedation or general anaesthesia when required.  These services need to be designed to accommodate and support patients with ASD in the often stressful hospital setting
  • Desensitisation programmes to allow patients to sequentially cope with dental assessment and interventions and make them comfortable in the dental setting.  Acclimitisation to the dental environment can also be performed in the school environment by non-dental professionals
  • Applied behaviour analysis programmes to break down and reinforce steps of the dental visit to enable coping and required behaviour
  • Social stories and visual pedagogy to enable patients to prepare for the visits and understand what is happening
  • Environment adaptation to reduce sensory insults and help patients to feel more comfortable in the dental setting.  Sensory rooms have also been used to aid relaxation before and after dental treatment
  • Access to conscious sedation in the primary care setting, where the patient can feel most at ease in familiar surroundings with familiar staff, instead of requiring referral to remote specialist centres. 

 

Recommendations for Improved Oral Health Services

The Irish Society for Disability and Oral Health, in keeping with the Government’s commitment to mainstreaming, would recommend the following in order to improve oral health care services for people with ASD in Ireland:

  • Professionals working with people with ASD should be conscious of the need for appropriate dental services, including the need for specific, patient-centred care pathways.  Dental awareness should be incorporated into early interventions related to ASD with inclusion of dental services as soon as possible 
  • Undergraduate and postgraduate dental curricula should include a component to enable future dental professionals to deliver oral health care to people with ASD with confidence at their level of experience
  • The HSE should support the education and training of existing dental staff, ranging from incorporation of basic ASD-supportive skills for all staff to more advanced training in areas such as conscious sedation for staff managing more complex cases
  • The HSE should ensure equality of access to sedation and general anaesthesia services throughout the country
  • Dental referral pathways should be developed to allow a seamless patient journey from primary to secondary to tertiary care, depending on individual requirements
  • The HSE should consider reform of the Dental Treatment Services Scheme to cater for the greater dental needs of people with disabilities such as ASD, particularly in relation to the management of periodontal (gum) disease
  • The HSE should promote public awareness of the dental services available to people with ASD in each local HSE area, in order to improve access to appropriate care
  • The HSE should engage with partner organisations such as the ISDH, in order to continuously evolve services. 

The HSE ASD Review is a very welcome first step in this regard.

ISDH