Person-Centered Service in Dental Treatments for People with Disabilities A Work Model Dental Clinic | Beit Issie Shapiro
03 Dental Clinic | Beit Issie Shapiro Person-Centered Service in Dental Treatments for People with Disabilities A Work Model
04 Writing and professional content Dr. Shalhav Malamud, Professional Director, Dental Clinic Hadassa Granot, Administrative Director, Dental Clinic In collaboration with the dental clinic staff and multidisciplinary team at Beit Issie Shapiro Knowledge management, structuring and editing Dr. Benjamin Hozmi, Ms. Lital Shani and Ms. Yael Yoshei Library science Ms. Tova Eliasaf, Beit Issie Shapiro's Knowledge Resource Management Editing of the Hebrew Version: Mr. Doron Sheffer Translation and Editing: Ms. Karen Gilbert Layout: Nili Goldman Production: New York New York (Israel) Ltd. This model was written as part of Beit Issie Shapiro’s accessible healthcare program in partnership with The Azrieli Foundation © All rights reserved to Beit Issie Shapiro – Publishers Do not reproduce, copy, photograph, record, translate, store in a database, transmit or receive in any way or means electronic, optical or of any kind the material contained in this book. Commercial use of any kind in the material contained in this book is strictly prohibited without written permission from the publisher. March 2024
05 This dental care model for people with disabilities was dedicated by the Koschitzky, Gitler and Goldstein families as a living legacy for years to come. In loving memory of Dr Celeste Massouda-Jacobs z”l, a devoted dentist and a beautiful soul.
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07 Content Executive Summary ........................................................... 11 Introduction ..................................................................... 15 Background ........................................................................................... 15 The Beit Issie Shapiro Dental Clinic ....................................................... 17 Vision and Mission ................................................................................ 17 Ethical outlook ....................................................................................... 17 Clinic Staff Training and Guidance ......................................................... 19 The Services Provided at the Clinic ......................................................... 19 Accessibility of the Clinic ........................................................................ 22 Corporate Clinic ...................................................................................... 23 Knowledge Development and Dissemination .......................................... 23 The Working Model for Person-Centered Dental Services ................ 24 Part A | Theoretical Introduction 27 The Autistic Spectrum ........................................................................... 27 Disability characteristics ............................................................................ 27 Unique dental characteristics and needs ..................................................... 29 Unique challenges and intervention methods ............................................. 30 Intellectual Developmental Disorder ..................................................... 32 Disability characteristics ........................................................................... 32 Unique dental characteristics and needs .................................................. 35 Unique challenges and intervention methods ........................................ 36 Physical Disability ................................................................................. 37 Disability characteristics .......................................................................... 37 Unique dental characteristics and needs ................................................ 37 Unique challenges and intervention methods ........................................ 39 Dementia ................................................................................................ 40 Disability characteristics ............................................................................ 40 Unique dental characteristics and needs ................................................ 41
08 Unique challenges and intervention methods .............................................. 42 Mental Disorder .............................................................................. 45 Disability characteristics ........................................................................ 45 Dental characteristics ............................................................................ 45 Unique challenges and intervention methods ..................................... 46 Part B | Description of the Working Model at the Dental Clinic ............................................................... 49 The Model ........................................................................................ 49 Person-Centered Service ................................................................. 50 Adapted Dental Treatment ............................................................. 52 A Multi-Disciplinary Approach ......................................................... 54 Part C | Using the Model .................................................... 55 Practical Aspects and Work Process .................................................. 55 The Work Process at the Dental clinic ............................................... 56 Preparation for treatment ................................................................. 57 Receiving a referral and conducting an initial inquiry ..................................... 57 Matching the appropriate dental team and the treatment setting for the patient .................................................................................... 61 Preparation for the treatment proces ............................................................ 62 The Treatment Process ..................................................................... 63 First appointment at the clinic, examination and assessment ........................ 63 Adjustment appointments ................................................................................ 65 Determining the treatment plan and its implementation .................................. 67 Referral for consultation with relevant specialists if required .......................... 68 Use of aids ........................................................................................................ 69 Use of pharmaceutical methods ...................................................................... 75 Preparing the patient for the next appointment .............................................. 79 Completion of treatment, follow-up and periodic treatments ............ 80 Documentation and learning from successes and challenges ........................ 80 Prevention and follow-up - encouraging preventative care, teaching proper tooth brushing, and periodic treatments ................................. 82
09 Part D | Intervention Using a Multi Disciplinary Approach .............. 85 Communication and speech therapy in dental treatment ................... 85 Communication in the therapeutic process ..................................................... 85 Speech therapy and assistive technology ......................................................... 88 Occupational Therapy .......................................................................... 92 Behavioral analysis and behavioral support techniques ....................................... 97 Drama therapy .................................................................................................. 102 Part E | The Human Element in Adapted Dental Treatment ......... 105 Clinic staff ............................................................................................ 105 Professional director ...................................................................................... 105 Administrative director .................................................................................. 107 Administrative staff ........................................................................................... 109 Professional staff (dentists, hygienists and dental assistants) ......................... 110 Training of the professional and administrative staff .......................... 111 Administrative staff - imparting knowledge in the field of disabilities and adapted dental treatment ........................................... 112 Professional staff - imparting theoretical and practical knowledge in the field of disabilities and adapted dental treatment ................................. 112 Administrative staff - imparting knowledge in the field of disabilities and adapted dental treatment ....................................................... 112 Professional staff - imparting theoretical and practical knowledge in the field of disabilities and adapted dental treatment ................................. 112 Implementation of a person-centered service approach among the service-providing staff at the clinic ............................................................ 113 Part F | Ethical Aspects of Adapted Dental Treatment ............. 115 Part G | Patient Satisfaction Survey ...................................... 123 Conclusion and Recommendations ..................................................... 125 References ........................................................................................... 127 Appendices .......................................................................................... 135 Appendix 1 - Health Questionnaire ...................................................... 136 Appendix 2 – “Nice to Meet You” Questionnaire .................................. 139
11 Executive Summary In Loving Memory of Dr Celeste Massouda־Jacobs z"l Dental treatments serve many purposes: the functional (ability to chew), the phonetic (ability to pronounce sounds correctly and clearly) and the aesthetic (appearance). Receiving high-quality medical care, including dental care tailored to patients’ needs, significantly affects health and quality of life. In terms of function, dental care has a daily impact - it’s fundamental to a person’s independence. In terms of phonetics, dental care enables communication with the environment. And in terms of aesthetics, dental care has a major effect on self-image, self-confidence and inclusion in the community. Nevertheless, there is a critical lack of dental clinics in the community which are able to provide treatment that is adapted to people with disabilities. The dental profession’s exposure to the disabilities field is very limited, and training provided at schools of dentistry does not impart sufficient knowledge for dentists to adapt dental treatments to people with disabilities. As a response, Beit Issie Shapiro established an adapted dental clinic in 1989 in the belief that people with disabilities have the right to dental care that is of the same standard and quality as dental care for people without disabilities. At the same time, Beit Issie Shapiro recognized the special needs of people with disabilities and understood that specific expertise is required to provide them with accessible and high-quality dental care. The experience and insights gained over the past thirty years at our adapted dental clinic gave rise to the comprehensive working model “Person-Centered Dental Care for People with Disabilities”. The model is based on three pillars: 1. Person-Centered Service: This ethical concept views the patient as a person who has come to receive a service. It assumes that the patient is “an expert on his own life”, and therefore should be a full partner in the process. The person-centered intervention model (Rogers, 1951) is based on empathy,
12 congruence and unconditional positive regard, with no judgment. These values guide our dental clinic’s work. 2. Adapted Dental Treatment: This approach aims at mitigating barriers in the encounter with people with disabilities. These barriers are a result of the patient’s physical and/or intellectual disabilities and individual needs. By removing these barriers, we aim to enlist the patient in cooperating in dental treatment so we can aid him/her in the best possible way without needing to use general anesthesia. Adapted dental treatment requires a deep familiarity with each patient’s disabilities and individual dental needs, awareness of any special requirements, and the expertise to make the right adaptations to ensure that treatment is successfully completed. 3. Multi-Disciplinary Approach: The use of a multi-disciplinary approach enables a relationship to be gradually established with the patient. We need to understand the patient and their disabilities and address any barriers so that patients feel comfortable to cooperate. People with disabilities often have barriers and difficulties that affect their ability to receive the dental treatments they need. These include, for example, sensory sensitivity, severe anxiety and fear of the unfamiliar dental environment or the medical instruments that are used during treatment. These barriers can lead to a resistance to treatment and a lack of cooperation from the patient. To mitigate these barriers, we draw from a variety of fields i.e. occupational therapy, speech therapy, behavioral analysis and techniques for behavioral support in dentistry that enable the patient to get acclimated and very gradually begin the treatment process. This guide describes the dental clinic at Beit Issie Shapiro including its history, the people it treats, its professional staff and their approaches. It also presents the working model that developed there. In the first section we review the disabilities about which we have gained considerable clinical experience - the autistic spectrum, cognitive and developmental disabilities, physical disabilities, dementia, mental health and psychiatric disorders. This section describes the dental treatments, special challenges and intervention techniques related to those impairments. The guide’s second section describes the different components that comprise the model.
13 The third section deals in depth with the model’s implementation and details the working principles and practices that guide the dental clinic’s work from the moment the patient contacts the clinic, through to the treatment’s conclusion. The dental care model uses a multi-disciplinary approach that draws from speech therapy, occupational therapy, behavioral analysis, behavioral support and drama-therapy techniques. A full description of the multidisciplinary approach that is used for all stages of treatment is presented in the fourth section of the guide. The guide’s fifth section relates to the professional team and staff training required for an accessible and disability-friendly dental clinic. Person-centered dentistry relies on a multi-disciplinary staff who are knowledgeable about and committed to the principles and values of accessible and disability-friendly dentistry. Section six deals with the ethical aspects and dilemmas of accessible dental treatment. Many patients require assistance in making decisions, and in many cases are unable to make decisions for themselves or understand the information that is presented to them. Such cases necessitate legal arrangements in which the patient’s representative is authorized either to make decisions on their behalf and consent to treatment, or to serve as a support for decisionmaking and consent. This section of the guide also raises common dilemmas and suggests ways of dealing with them that are in keeping with social values while adhering to the law and the rules of medical ethics. The guide’s seventh and final section outlines the results of a survey that the dental clinic conducted among patients from 2020 to 2021. The survey’s findings show considerable satisfaction on the part of the patients and offer encouragement to the dental clinic’s staff as they continue to provide treatment in the spirit of the model. This working model used at Beit Issie Shapiro’s dental clinic will continue to develop based on patients’ changing needs to which we are attentive. As this guide describes, we developed new approaches and tools, and over the years our expertise has expanded and improved.
14 This guide was written with the aim of improving the quality of life of people with disabilities, ensuring their basic right to receive high-quality dental care that is adapted to their needs. Its purpose is to raise awareness of the need for accessible and disability-friendly dental care for people with disabilities, and to share the model developed at our dental clinic with the broader professional dental community and policy-makers in the field. Elements of the model are already included in Tel Aviv University’s dentistry degree in order to expose the students to this accessible, disability-friendly dental model. It is our hope that the extensive knowledge, expertise and tools that we developed at Beit Issie Shapiro’s dental clinic will be implemented at dental clinics run by health-care providers, private dental clinics and hospitals throughout Israel to successfully treat people with disabilities in the community. While the model described in this document was developed specifically for people with disabilities, its values and guiding principles can be of value to any dental clinic that aims to provide person-centered dental care to all their patients.
15 Introduction Background Approximately 20% of Israeli residents are people with disabilities (Barlev, 2023). These disabilities affect their functioning and integration in the social sphere and in many areas of life, such as education, family and community involvement. Some require services specially adapted to their needs, including healthcare and dental care. Until the mid-1980s, dental care services in Israel were physically and financially inaccessible to the majority of people with disabilities. Most had to go to ordinary dental clinics to receive treatment from staff who were untrained in treating people with disabilities and therefore unable to meet their particular needs. The treatment that was provided was basic maintenance and restorative dental treatment, with no attention paid to prevention, or guidance regarding oral hygiene or preventative treatment. Furthermore, many parents reported that they had difficulty finding dental clinics where their children with disabilities could receive dental treatment at all. It should be noted that both in the past and nowadays dental schools provide almost no learning opportunities relating to treating people with disabilities. In the training for various dental specialties, with the exceptions of pediatric dentistry and oral medicine, this important subject is not touched upon at all. This increases the shortage of skilled personnel with experience in adapted treatment for people with disabilities. Seeing the need for adapted services for people with disabilities in the community, at the end of the 1980s, two dentists – the late Dr. Trevor Segal and the late Dr. Brian Brodie – conceived the idea of establishing a community dental clinic specifically for the treatment of people with disabilities. The clinic was established at Beit Issie Shapiro in 1989 at the initiative of Mrs. Naomi Stuchiner, founder of the organization, and was one of the first community clinics of its kind in Israel (that was not part of a hospital or residential institution). Over
16 the years, other adapted dental clinics have been set up, mainly in institutions for people with intellectual developmental disabilities. These clinics (which have since been privatized by the state) primarily serve people who have been recognized by the Disabilities Administration of the Ministry of Welfare. The dental clinic at Beit Issie Shapiro was founded on the basis of the principles of the person-centered approach, whereby the patient is there to receive a service, which is provided as a right and not out of pity. The patient is entitled to adapted interpersonal and professional treatment, provided with dignity, trust and empathy. He is also entitled to be an active partner with decision-making abilities during the treatment process. This approach is consistent with the changes that have taken place in recent decades in social policy in Israel, and in the passing of laws that enshrine the rights of people with disabilities. In 1998, the Equal Rights for Person with Disabilities Law, 5758-1998 was passed. According to the basic principle in the law, the “rights of people with disabilities and the obligation of Israeli society towards these rights are founded upon recognition of the principle of equality, on recognition of the value of a person – created in God’s image – and on the principle of respect for all human beings” (section 1). However, the law includes only limited reference to the area of health. On December 13, 2006, the Convention on the Rights of Persons with Disabilities was adopted by the United Nations General Assembly. The State of Israel ratified the convention in September 2012. Article 25 of the Convention deals with the area of health, and states that: “States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation…” (Commission for Equal Rights of Persons with Disabilities, 2019). This guide to a person-oriented dental service gathers together the experience of the Beit Issie Shapiro dental clinic accumulated over the 32 years of its operation. It is our hope that the dissemination of this knowledge documented here will lead to the improvement of treatment in existing clinics for people with disabilities, and to the best possible adaptation of dental clinics to serve patients with disabilities.
17 The Beit Issie Shapiro Dental Clinic Vision and Mission The idea that led to the establishment of the Beit Issie Shapiro dental clinic arose out of the belief that people with disabilities have the right to receive healthcare services at as high a standard as any other person. It was also the result of the approach that recognizes the special characteristics and needs of people with disabilities, and the need for specialized knowledge that is required in order to provide them with a suitable and high-quality solution to their needs. The Beit Issie Shapiro dental clinic operates within the community to provide the best person-centered, comprehensive dental care for people with disabilities. The ethical assumption is that treatment should be “with” and not “on.” The clinic works to promote adapted, accessible and high-quality dental treatment to people with disabilities, which includes a wide-ranging and multi-disciplinary solution under one roof. The clinic serves as a center for the development of specialized and innovative treatment methods, and encourages learning and the acquisition of knowledge and tools in the field of dentistry for people with disabilities. This is all on the basis of the principles of human dignity, choice, equality and excellence. Ethical outlook The ethical and professional approach at the Beit Issie Shapiro dental clinic is to strive to avoid performing treatments under general anesthesia as much as possible, and this includes increasing the participation of the patient with the assistance of unique tools developed and implemented by the staff. In addition to the medical implications associated with dental treatment under general anesthesia, there are also ethical aspects that should be addressed and that support the approach employed at the clinic. The person-centered approach sees the patient as an active partner, with his own desires, sensitivities and choices. None of these can be expressed during treatment under general anesthesia. In the spirit of the value of equality, which
18 guides our work, just as the percentage of patients treated under general anesthesia in the general population is relatively low, so, too, we strive to avoid the use of general anesthesia as far as possible for people with disabilities. We see the expressions of challenging behavior, which may occur during treatment, as a language through which the patient is trying to report his desires, feelings and needs. Therefore, instead of suppressing these behavioral expressions using general anesthesia, the team displays an empathic approach aimed at following the patient’s preferences and adjusting their work to these needs and desires, as much as possible. Our experience has shown that this therapeutic approach provides many benefits to the patient, including: • Learning from and dealing with challenges – The patient’s active participation in receiving dental treatment as an opportunity for him to learn ways to deal with difficulties and challenges, and to reduce his dependence on external mediation for calming and self-regulation. • Learning from successes – When the patient experiences success and takes an active part in the implementation of the dental treatment, there is a greater chance of improvement in his ability to cope in future treatments and in other areas of life. The staff also works to reflect his previous success back to him in future treatments. • Increasing choice – Many patients that present for dental treatment experience over-protectiveness in their day-to-day lives from many people in their environment. By including the patient in the dental process, we encourage him to express his needs and desires and decrease his dependence on his environment. Person-centered treatment requires staff availability, time and resources to enable the patient to acclimate to the clinic, the staff and the therapeutic process, while conscious and actively participating as much as possible. Treatment under general anesthesia is performed in cases where it is evident that it is the last resort for providing treatment and is in the patient’s interests. Indeed, at Beit Issie Shapiro dental clinic, 6% of patients are treated under general anesthesia as t, compared to50% of patients with disabilities in other clinics around the world (Akpinar, 2019).
19 Clinic Staff Training and Guidance One of the clinic’s biggest challenges was to develop a team with appropriate professional knowledge to treat people with disabilities. Since there is almost no training in the field of disabilities in the formal teaching institutions, training had to be done on the job, and knowledge had to be accumulated and gathered on the basis of the work performed in the clinic. The working method conveyed to the clinic staff should relate to the patient himself, to his family and to his caregivers (his support and care team, and sometimes the various frameworks of which he is a part). The content offered should relate to the following categories: • Acquisition of theoretical and practical knowledge in the field of disabilities and knowledge about adapted dental treatment: Training of the professional staff on the subject of disabilities, and in-depth training in the area of dental needs for the purposes of adapting the dental treatment, treatment methods and accessibility of the service. Alongside the theoretical training of the professional staff, practical training is also given that includes observation of treatments, clinical discussions and supervised work experience. • Embedding a person-centered service approach among the staff providing the service at the clinic: Imparting knowledge and teaching relevant fundamental concepts in the area of person-centered service, which places the patient, his feelings and his needs at the center, and is provided with an empathic approach, without judgment and with authenticity and honesty. In addition, providing tools for day-to-day practices that are compatible with this ethical approach. Emphasis is placed on quality of service and communication with the patient, and choosing from a diverse range of solutions to suit the patient. The Services Provided at the Clinic The clinic operates in five key areas: 1. Teaching proper dental hygiene habits The clinic staff emphasizes the great importance of oral and dental health education, proper, balanced nutrition, and the prevention of diseases such as tooth decay and gum disease. The work approach is proactive prevention by teaching and early detection. This is in order to prevent the development
20 and advancement of dental problems, which can be accompanied by pain, and potentially make the problems harder to treat. Therefore, the clinic staff encourage the patients to come for regular check-ups and X-rays, and for plaque removal as needed (sometimes this is required every 3-4 months). The dentists and dental hygienists at our clinic make sure to provide appropriate instructions for proper and effective tooth brushing, and in some cases, they also provide nutrition guidance. 2.Dental treatments Examinations, maintenance treatments (fillings, root canals and extractions) and oral rehabilitation. 3. Implants and restoration using implants Another area in which the Beit Issie Shapiro dental clinic was a pioneer was the field of implants. In many cases, people with disabilities lose their teeth at a relatively young age and a suitable solution needs to be found for them. In the past, many professionals believed that there was no justification for restorations using implants in the treatment of people with disabilities, and the restoration that was commonly prescribed was removable dentures. Professionals in the field of dentistry objected to restoration using implants due to professional biases and the costs of treatment relative to the expected benefits. One argument was that the success of this high-quality and advanced treatment depends to a high degree on maintaining good oral hygiene, and the majority of the patients find this very difficult. The idea of permanent restoration using implants at the Beit Issie Shapiro dental clinic arose out of the difficulty that some of the patients had with acclimating to removable dentures, and the professional view that implant supported prostheses would be more beneficial for them. Follow-up of the first implants at Beit Issie Shapiro showed that the success rates for restorations using implants among these patients was similar to those among patients without disabilities. This was despite the fact that it seemed that our patients had inferior starting conditions with low prospects for success. As a result, our professional opinion was that there was no reason to prevent restoration using implants despite the difficulty in maintaining good oral hygiene among people with disabilities, just as this treatment is not avoided in other cases
21 where the success rates of such treatment are reduced (such as in the case of smoking). In view of this, and due to the great importance that we saw in adding this treatment option to the clinic, the late Dr. Udi Yogev (who served as director of the clinic for many years) initiated and led the introduction of restorations using implants to our clinic. This initiative strengthened our ability to implement the principle of equality in both kind and quality of the service to people with disabilities. Currently this treatment approach is popular and widely accepted in other clinics as well, and has become part of the ordinary treatment and restoration routine. 4. Orthodontics Orthodontics is the specialty in dentistry that deals with straightening teeth and jaws. Orthodontic treatment is very common among children, and these days also among the adult population. Orthodontics is important both from a medical and an aesthetic perspective. The development of this field at the clinic began in collaboration with the Department of Orthodontics at the School of Dental Medicine at Tel Aviv University. After a few years, it was decided to bring this service into the clinic, and currently the service is fully provided at the clinic by orthodontic specialists. The clinic has had much success in this field and is becoming more and more popular among people with disabilities. Over the years, the clinic staff has developed special methods for dealing with the challenges related to the specific characteristics of the patients, some of whom have complex disabilities or sensory sensitivity, which make it difficult for them to cooperate in long and complex treatment processes. For this reason, choosing suitable candidates for orthodontic treatment requires excellent diagnostic skills. The experience accumulated by the clinic has enabled us over the years to expand the pool of beneficiaries from this treatment. Here, too, the guiding principle is the principle of providing a service similar to the accepted service among people without disabilities. 5. Treatment under general anesthesia Treatment under general anesthesia is one of the ways that dental treatment can be carried out. The decision to use this treatment method is made after serious consideration by the medical team, with the involvement of the
22 patient (as far as possible), his family (or his legal guardian) and his care team. Dental treatment under general anesthesia requires a highly skilled team that has appropriate training and extensive experience. It is suitable for people with disabilities whom it is impossible to treat in any other way because of behaviors that prevent cooperation in receiving treatment. Among people with disabilities, this tool is used more commonly than among those without disabilities. According to a 2019 study, approximately 50% of patients with disabilities that attend non-specialized dental clinics are referred for treatment under general anesthesia (Akpinar, 2019). The working model at the Beit Issie Shapiro dental clinic strives to minimize the use of general anesthesia, and only around 6% of the clinic’s patients are referred for treatment under general anesthesia. For patients that have difficulty cooperating but require extensive treatments, general anesthesia will enable the planned treatment to be performed to the highest standards and in a short time frame. In cases where the patient’s general state of health does not meet the criteria set by the Ministry of Health for being able to receive treatment at a community clinic, they are referred to hospital clinics. Accessibility of the Clinic The clinic was built taking into consideration the patients’ physical needs, without any stairs and with wide doorways. The clinic has a waiting room and two spacious treatment rooms that are specially adapted for people using wheelchairs. In addition, the clinic operates in accordance with the Ministry of Health licensing rules for dental treatment under general anesthesia, which set out conditions and requirements relating to the building, such as the need for wide emergency exits that allow the entry of a gurney, and easy access for emergency vehicles. Furthermore, the multi-sensory environment of the clinic is tailored to the needs of the patients. For example, a “vibrating bubble tube” was installed in the waiting room to create a pleasant atmosphere. It stimulates the patient’s senses, generates a sense of calm, and thereby increases the patient’s ability to cooperate. The walls of the clinic were painted in calming colors and suitable
23 furniture was chosen. All these elements were designed to make the wait easier and to lower the tension levels leading up to the treatment. Corporate Clinic The Beit Issie Shapiro dental clinic is a “corporate clinic” which operates pursuant to the Corporate Clinic Procedures, under the license and supervision of the Ministry of Health. The Clinic is also authorized to provide dental treatments under general anesthesia. It is subject to the regular reviews of the Ministry of Health, and the District Dentist, and complies with strict standards and audits. This is both on the professional level and on the level of the dental materials used, the required cleaning and sterilization standards, as well as note-taking and documentation protocols. The clinic holds all the required insurances both at the elementary level and at the level of professional liability. Knowledge Development and Dissemination The clinic also considers it important to identify needs, and to provide information and reach out to the community. The clinic offers training to patients, parents and caregivers on the subject of maintaining proper oral hygiene. The clinic also runs seminars, courses and professional development days for dentists and hygienists, with the aim of implementing the working model that has been formulated at the clinic over the years – a model that will be presented in this guide.
24 The Working Model for Person-Centered Dental Services As an organization generating social change, Beit Issie Shapiro sees itself as having a duty to develop models for interventions in areas where there are unmet needs. Once they have been found to be effective, we strive to disseminate the models developed in the organization as widely as possible, so that they will be implemented in the broader professional community. Over 32 years of work at the Beit Issie Shapiro dental clinic, a working model for person-centered service has been developed. This approach has led to maximum cooperation on the part of the patient and to a reduced need for the use of general anesthesia during treatments. Person-centered treatment means giving respect to the patient as a person, an empathic approach and a lack of judgment, and building trust and transparency during the treatment (Rogers, 1951). This approach sees the clinician as having a right and an obligation to see himself as a service provider who has a dialogue “with” the patient, rather than “about” him. The service provider is obligated to be attentive to the patient’s needs and preferences, and to focus more on his strengths and less on his disability. Person-centered dental service requires adaptations of the physical, sensory, communication and cultural infrastructures for the patient. The information given to the patient is made as accessible to him as possible. The dialogue with him refers to the elements of the treatment process in simple language, in line with his cognitive abilities. This approach increases motivation for treatment, as well as choice, and sees the building of trust as a central value. This unique working model, its key components and the method of implementing it will be described in this guide. In our work we have seen that this ethical-professional approach has the power to transform the dental treatment experience into one that is respectful, reduces anxiety and increases control and participation on the part of the patient during the provision of treatment. Writing this guide is a natural part of the process of developing models for interventions that promote quality of life for people with disabilities, and the dissemination of information that has been developed at Beit Issie Shapiro. The timing of the writing is the result of a sense that valuable, unique knowledge
25 has accumulated at the dental clinic, and this knowledge should be shared with the professional community, with the hope and desire to make adapted dental treatments accessible to a variety of populations, thereby improving their physical and mental well-being. As stated, the dental clinic was established in 1989, and since then thousands of patients have been successfully treated there. In writing this guide we hope that people with disabilities that need dental treatment will know that we have a therapeutic solution for their needs. At the same time, there is still a shortage of adapted dental clinics in the community. See, for example, the report on the hearing that took place in the Israeli Knesset in 2011 on the subject of dental treatments in Israel (Hearing on Discrimination of People with Disabilities in the Community with respect to Dental Treatments) in which they warned about the serious shortage of accessible dental clinics, and set out the implications of this shortage (Knesset News, 2011). It is our hope that dentists who are exposed to the content of this guide, and to the extensive knowledge that has accumulated at our clinic, will know that providing adaptations to patients with special needs is possible and beneficial, and will open up their clinics to people with disabilities.
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27 Part A | Theoretical Introduction Disability characteristics, dental needs, unique challenges and intervention methods for people with disabilities The Beit Issie Shapiro dental clinic provides care to a broad community of people with disabilities. This section will set out dental characteristics, and unique challenges and needs of the main groups that seek treatment at our clinic, about whom we have accumulated a great deal of experience. While this section reviews the unique dental needs of different groups and focuses on specific diagnoses, under a person-centered approach the clinician will focus on getting to know the unique characteristics of each patient, including his strengths and anticipated therapeutic challenges, and will strive to adapt the treatment as far as possible to the person, and not to his diagnosis. The Autistic Spectrum Disability characteristics Autism spectrum disorder (ASD) is a prevalent neurodevelopmental disorder that appears at a young age and persists throughout life; it is characterized by social communication difficulties, rigid and repetitive behavior patterns, and atypical responses to sensory stimuli (McPartland, 2016). Hallmayer et al. (2011) believe autism is caused by a combination of genetic, medical and environmental factors (Hallmayer et al., 2011; Taniai et al., 2008) and manifests in difficulties in a range of spheres. The key areas are difficulty in social cognitive development, language comprehension, play and sensory integration, as well as eye contact and difficulty interpreting intentional language (Happe, 1991; 1993). The term ASD (Autism Spectrum Disorder) was chosen as an inclusive term for all disorders on the spectrum. This clinical term replaces the term PDD (Pervasive Developmental Disorder), which was used in the past and
28 included Autism, Asperger’s syndrome Disintegrative Disorder and PDD (NOS) (Not Otherwise Specified). The current definition according to the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, produced by the American Psychiatric Association, (American Psychiatric Association, DSM-5 Task Force [DSM-5], 2013) includes the following criteria: 1. A persistent deficit in social communication and interpersonal interaction across multiple contexts. The deficit is manifested in the present or can be learned from the person’s developmental history. The deficit in socialemotional reciprocity is expressed in difficulty holding a conversation, reduced emotional sharing and lack of ability to initiate or respond to social interactions. It also includes a deficit in non-verbal communication used for social interaction, such as reduced or no eye contact, improper use of body language and sometimes lack of facial expressions and non-verbal gestures. In addition, there is a deficit in developing, using and understanding emotional connections, such as difficulty in adjusting behavior to suit context, difficulty in imaginative play, difficulties making friends, up to a complete absence of interest in peers. 2. Restricted, repetitive areas of interest, activities or patterns of behavior, as manifested in the present or by past reports, by at least two of the following four descriptions: a.Stereotyped or repetitive motor movements such as hand waving. b.Inflexible adherence to routines, repetitive and stereotyped use of objects, such as lining them up; use of speech routines such as echolalia (repetition of words spoken by another person); quoting and memorizing words and sentences; behavioral fixation and rigid adherence to routines and to certain verbal patterns; and objection to change (difficulties with transitions, rigid thinking and ritualistic behavior). c. Highly limited areas of interest that are abnormal in intensity or focus (preoccupation with part of an object or a particular object, endless repetition of a particular behavior or story). d.Hyper- or hypo reactivity to sensory stimuli or unusual interest in a particular sensory stimulus (lack of response to pain or temperature, inappropriate
29 response to a certain sound or texture, smelling or touching of a particular object, fascination with light stimulus or repetitive movement). 3. The symptoms must appear during the early developmental period. 4. All the symptoms cause significant clinical impairment in the person’s social, occupational and functional sphere. 5. The disturbance cannot be explained by intellectual disability or global developmental delay. The social and communication difficulties should be at a low level compared to the person’s overall developmental level. Unique dental characteristics and needs There are specific oral features of autism that may have an impact on the need for dental treatment: 1. People with autism prefer soft, sweet food and tend to store the food in the mouth instead of swallowing it (pocketing) due to poor tongue coordination. 2. People with autism may avoid going to the dentist and may not initiate appointments. One of the reasons for this is their apparent inability to connect unpleasant sensations (toothache) with the fact that there is a dentist who can fix the unpleasant sensation. In addition, most need detailed and personalized instruction from skilled staff on the subject of maintaining dental hygiene. Lack of education and instruction by dental staff and lack of regular visits to the dentist may lead to a patient’s impaired oral hygiene due to lack of awareness of the importance of maintaining good hygiene. Furthermore, there is a sense of helplessness or lack of guidance for the family and caregivers to mobilize the patient to maintain dental hygiene. 3. Poor manual skills that manifest in ineffective brushing and use of dental floss and other aids, increasing the risk of cavities. 4. Difficulties in maintaining dental hygiene due to problems with sensory processing – the sensation of the toothbrush touching the mouth or the toothbrush bristles touching the gums or teeth, as well as the taste and texture of the toothpaste may cause an unpleasant feeling.
30 5. Medications that are commonly taken by people with autism (such as antidepressants, antipsychotics and stimulants) may cause various gum diseases that can manifest in gum inflammation characterized by redness and bleeding in response to light touch. These medications may also cause mouth dryness and may increase the risk of cavities (Dao et al., 2005; Krause et al., 2010, Romer et al., 1999; Kopel, 1977). 6. Harmful habits, such as bruxism (teeth clenching and grinding), tongue thrusting, scratching the gums with a finger or another instrument, and lip biting are also risk factors for oral diseases among people with autism (Al et al., 2015; Chandrashekhar & Bommangoudar, 2018). 7. Accidents involving a tooth fracture (mainly permanent upper incisors) due to developmental coordination disorder which is common for people with autism. In addition, there are children, sometimes adults, with autism, who eat non-food items (PICA) such as stones, metal and other hard objects. Sometimes they do this for sensory stimulation for self-soothing. These actions may cause significant damage to the teeth to the point of fractures (Udhya et al., 2014; Altun et al., 2010). 8. Use of the drug Phenytoin, which is generally given as a supportive treatment for autism, may cause delayed teething (phenytoin-induced gingival hyperplasia). 9. Harmful habits (such as putting objects in the mouth, tongue thrusting) sometimes cause malocclusions – abnormal intermaxillary relationship (Jaber, 2011). Unique challenges and intervention methods Feelings of discomfort and anxiety that accompany a visit to the dentist and a dental clinic are intensified for a person with autism. The difficulties in verbal and non-verbal communication, difficulty acclimating to unfamiliar social situations, changes in the dynamics of their daily routine and problems with sensory regulation may cause a lack of cooperation. This can manifest in emotional outbursts, anger and harmful self-conduct that can lead to avoiding going to the dentist and postponing treatments.
31 It is difficult to mobilize the patient to cooperate in the treatment due to difficulties with social and communication interactions. It is also hard to develop joint attention, which means a lack of curiosity for the environment on his part and an inability to share information using spoken language and eye contact. It is very important to remember during an examination or treatment that people with autism have differing levels of abilities in the areas of intelligence, communication and functioning. Adapted dental treatment requires familiarity with the disability and at least one appointment to get to know the patient, which is crucial both so that the patient can become familiar with the environment and the staff and so that the clinician can obtain an initial impression of the patient, his temperament and his family. Indeed, treatment approaches that have positive outcomes for one patient may turn out to be ineffective for another patient. It is worth remembering that despite people with autism’s desire to build personal relationships, the way in which they do this is not always well understood by the staff and can delay the provision of treatment. Alongside the dental diagnosis and outlining the treatment options, the dental staff must also identify the patient’s methods of communication and adapt their approach to suit his behavioral and communication characteristics. A study conducted in the United States (Loo et al., 2009) found that among the commonly used and recommended approaches for dental treatment for people on the autistic spectrum are parental presence during the treatment, use of the “tell, show, do” technique, giving short, clear instructions and using verbal positive reinforcements. Regarding the structure of the appointments, it was recommended that appointment duration and exposure to unpleasant sensory stimuli should be kept to a minimum due to limited attention spans among people with ASD. In addition, it was noted that it is a good idea to plan short, well-organized appointments with a waiting time of less than 15 minutes. Regarding the dental environment, the article noted that environmental elements are extremely important in determining the level of comfort for people with autism during stressful medical events. Discussing aspects relating to the work carried out during the treatment in front of the patient should be avoided. Soft lighting and music may be helpful. Loud or unexpected noises may cause behavioral responses that will delay treatment processes. Everyone involved in the process should minimize activity and presence in the room, and
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