Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Attention to hearing impaired children at a specialized center in Brazil,
aiming at their social and educational inclusion

Dr. Telma Flores Genaro Motti
Hospital de Reabilitação de Anomalias Craniofaciais, Universidade de São Paulo, Bauru, SP, Brazil
telmotti@centrinh o.usp.br

Dr. Maria Benedita Lima Pardo
Universidade Federal de Sergipe, Aracaju, SE, Brazil
mbpardo@infonet.com.br

Dr. José Alberto de Souza Freitas
Hospital de Reabilitação de Anomalias Craniofaciais, Universidade de São Paulo, Bauru, SP, Brazil

Summary

The Hospital for Rehabilitation of Craniofacial Anomalies (HRAC) of University of São Paulo is located in Bauru, State of São Paulo, Brazil. It is an internationally recognized specialized reference center for the treatment of facial malformations and visual and hearing deficiencies. It is a public and free service that assists patients coming from all over the country, adding up, by the beginning of 2005, about 62 thousand registered cases, from which nearly 20 thousand attend the Program for Hearing Impairment. It is the aim of this work to present this Program, which began in 1985 and is now organized into four centers with specific objectives: a Center for Hearing Investigations, a Center for Care of Hearing, Speech and Visual Disturbances (Cedalvi), an Educational Center for the Hearing Impaired Individual (Cedau), and an Integrated Center for Professional Rehabilitation and Habilitation (Nirh).

The Hospital for Rehabilitation of Craniofacial Anomalies

The Hospital for Rehabilitation of Craniofacial Anomalies (HRAC) of University of São Paulo, in Bauru, State of São Paulo, Brazil, is an internationally recognized, specialized reference center for the treatment of facial malformations. It is a public and free service that assists patients coming from all over the country. Since 1985, it also assists patients with hearing impairment aiming at the diagnosis, prevention and rehabilitation of the individual, using all available resources and technological progress, such as fitting of hearing aids and cochlear implant surgery, associated to speech therapy and pedagogical, educational, psychological and social attendance.

Attendances are performed by an interdisciplinary team comprised by otolaryngologists, pediatricians, neurologists, geneticists, audiologists, speech therapists, psychologists, pedagogues, social assistants, nurses, nutritionists, technical and support people. The work philosophy adopted by the Hospital is the humanization of the patient, who is considered as a whole and cared for all his needs related to the deficiency. This attention is also extended to the patient’s family, once this is how patients may be accepted and educated. Follow-up is provided on a regular basis, to assess the clinical condition related to hearing ability and update the hearing aid used, besides addressing the psychosocial and educational development.

Hearing loss and its implications in child development

Hearing loss is an important sensorial deficit that corresponds to total or partial inability to understand through hearing. As hearing is a fundamental ability for human communication, speech and language acquisition, when sound and object recognition and the interiorization of concepts do not exist, normal education and global child development are impaired, either if it happens before or after language acquisition. A child that is deaf since its birth or since an early post natal stage will not be able to speak normally; however, if he or she receives a suitable early care, a cognitive and communicative performance similar to that of a hearing child may be obtained. However, parent knowledge on deafness and methods for rehabilitation between oralism and bilingualism is of utmost importance for child development. Thus, early diagnosis and initiation of habilitation or rehabilitation are means to reduce the consequences of hearing impairment.

The diagnosis of hearing impairment in children comprises a complex process, involving several procedures and specialists from different areas. The experience of professionals in the area shows a consensus that the sooner the diagnosis and rehabilitation, the better results will be achieved, such as development of communication that is sufficient for social interaction, school performance, and professional occupation. After diagnosing, educational measures may be introduced to relieve the hearing impairment, reducing the severity of the problem by means of technological resources for utilization of residual hearing and development of speech and language. For the family, early approach allows better understanding of anxiety and better insertion of the child into the social environment. Thus, the diagnosis allows parents to get maximum advantage of their child’s condition, even though the child and his or her environment must be assessed and respected.

What are the reason and objective of diagnosis to education? The main reason is that the early identification of a hearing impairment is important for the development of a child, aiming at his or her integration, conditions being respected and knowledge access being warranted, through the effective use of amplification, stimulation and professional attendance.

During evaluations and directions, professionals should perceive the individual as a whole, not focusing just one variable, being careful that diagnosis, prognosis and the indication of therapeutic or preventive procedures do not impair child acceptance by parents.

Remembering that individuals that bear a deficiency may be changed by educators’ actions, and that they have their own characteristics, values, and life histories, professionals must be attentive to the individual, environment and family, considering them as important aspects, which have information and contributions to offer. Diagnosis may be explored by maximum usage of opportunities to provide information for the professional, absorbing an educational role to direct the family on how to impel the child development. The family exerts an important role in the development of a hearing deficient child, but this role greatly depends on the information provided to the family by the diagnosis team and on how this information is absorbed.

Services offered at HRAC

Services for hearing impaired individuals at the Hospital are organized in four centers:

1) Center for Hearing Investigations, designed for differential diagnosis and for researches, cochlear implants being its most important activity;

2) Center for Care of Hearing, Speech and Visual Disturbances (Cedalvi), where the diagnosis, selection of hearing aids, follow-up and directions to patients and their families are performed;

3) Educational Center for the Hearing Impaired Individual (Cedau), holding the auditory-oral approach and designed to give support to children so that they may follow regular teaching;

4) Integrated Center for Professional Rehabilitation and Habilitation (Nirh), which assists, through by Sign Language, patients that show any difficulty in oralism, aiming at the alphabetization and preparation for work.

The greatest volume of attendance is registered at Cedalvi, currently amounting to nearly 19 thousand cases of hearing impairment, 14 thousand being followed at present. This Center assists about 100 patients a day, forty new cases a week.

This work aimed at showing the work performed at Cedalvi as to the diagnosis and selection of hearing aids, the routine for fitting of hearing aids and follow-up for re-assessment and directions.

The work philosophy chosen is an interdisciplinary and global attention towards the individual, especially children, considering social and familiar environments. The principle directing the performance of all specialized professionals in the different areas, summing up their knowledge and experiences, under secure directions, help parents to accept and overcome the problem, so they may cooperate for a satisfying prognosis related to life quality and to social and educational inclusion.

The Diagnosis of Hearing Impairment and Fitting of Hearing Aids at Cedalvi

The history of Cedalvi shows that, with the increase in the service and patient request, the program, which already offered early stimulation, speech therapy by Verbotonal and Total Communication approaches, besides pedagogical support for children over 7 years old that were not assisted at Cedau, had to make a new direction of attendance and set up a new priority upon the diagnosis, indication and fitting of hearing aids, and follow-up of cases living in other cities in the country.

Attendance is performed on an outpatient basis, by previous registration after medical referral. For the registration, the distance of residence, age and indication conditions are considered, especially for new cases, i.e. patients coming to Cedalvi for the first time.

Five days of attendance are scheduled for accomplishment of all needed procedures, concluding hearing diagnosis and fitting or directions related to the hearing aid. Follow-up is regularly performed, according to the needs and possibilities of each case.

Evaluations may be complemented by other specialties of the Hospital team, such as Physiotherapy, Ophthalmology, Cardiology, when required, as in syndromes or other disturbances.

Scheduling is performed according to a previously established routine, with a sequence of attendance to be followed, one creating favorable conditions to the other, many times producing continuity as a function of the last attendance. Procedures are briefly described below, based on information of professionals.

Procedures for Diagnosis and Selection of Hearing Aids

Before scheduling an appointment at Cedalvi, the individual or his family are registered upon referral from a health professional, generally an otolaryngologist. The registration, generally requested in a written form, consists of information on the individual, complete name, birth date, name of parents, address and telephone number, followed by a case “history”, which may be a letter where the individual himself or his caretaker describes the problem.

The Department of New Cases assesses this document and, if the case is eligible, a file is prepared. Cases are gradually scheduled for routine attendance for new cases, in two or three days, including hearing diagnosis and indication of hearing aids, according to a sequence established by Cedalvi.

The distribution of attendance for registered cases considers the age of the individual and possible disturbances that may suggest other procedures. This distribution is necessary, since some procedures are indicated according to the age of the individual, such as the audiometry of visual reinforcement (VRA) for children aged less than 3 years; for all children under 7 years, a double schedule is offered for audiological procedures, in order to warrant the completeness of diagnosis.

The family is informed on the expected period of attendance and is asked for agreement. Generally, families ask for a time to decide about their conditions and call back to confirm the date or to ask for a new one. When the date is confirmed, the Department of New Cases sends a Handbook of Directions for New Patients, containing dates, attendance schedules, documents that must be taken and directions to the family, in order to minimize situations that may prevent the performance of any procedure. One of these directions is a medical assessment of the child before the trip, so that he or she is not at risk of loosing attendance for health reasons. Further information is also offered, such as services that they may call for the trip, and addresses and telephone numbers of hotels and boarding houses, for when they get to town.

After family consent, the file is sent to the scheduling department, where professionals are scheduled, and plans for daily attendance and administrative control files are made.

At the day of attendance, the patient and his or her family go to the Reception Department, where a clinic dossier is started, which means a portfolio with printed pages containing all information on the patient, as well as the evolution of attendance by all professionals. This procedure consists in ascribing a register number, identification data, personal document presentation and an opening term, signed by one of the parents or a legal responsible, authorizing examination and the use of data for scientific researches.

After completion of registration, the patient and caretakers/relatives go to a meeting with all new patients, which is effectively the first routine procedure.

Descriptions of procedures below were achieved from information offered by professionals and are presented according to the sequence of occurrence: preliminary attendance for diagnosis, assessment attendance for audiological diagnosis, attendance for hearing aid selection, complementary attendance for diagnosis and final procedure, and interview with the Social Work.

Preliminary Procedures

New Patients Meeting

This is a group attendance, performed by a social worker, on a daily basis, at the waiting room and with 8 to 10 new cases, patients and their companions coming to Cedalvi for the first time. Generally, this meeting begins at 7:30 hours and lasts about 45 minutes, divided into 15 minutes for environment preparation and 30 minutes to offer all information. The objective of this procedure is to present the institution, team, and routine of attendance, to inform and elucidate about feeding, housing and community resources, as well as to call the attention of people to the importance of the rehabilitation process.

Initial interview with the Social Work

This is an individual attendance at the rooms of the Social Work Department with the family, which usually lasts 30 minutes. Initial interviews aim at reinforcing the information on the Institution, the routine and the team, and to help with housing and feeding, perform the socioeconomic study, identify and interfere with personal and social difficulties of each patient and family, minimizing or removing situations that may affect the routine and directions, as well as to assess and elucidate the expectations about the routine.

Audiological Diagnosis

Anamnesis

Audiological anamnesis is performed by the Department of Clinical Audiology. Attendance is performed individually, preferably with the patient’s mother, inside one of the rooms of the department, lasting about 40 minutes in the average. Besides scheduling of the clinical dossier, toys may be employed to entertain the child and a figure of an ear, to explain how hearing functions. The objective of the anamnesis is to get information on the child general health and his or her development since gestation, to know about parents’ complaints and to ascertain the child’s hearing behavior, in the presence of sounds, foreseeing the findings of audiometry, thus helping the audiological and etiologic diagnosis and hearing aid fitting.

Otolaryngologic consultation

The doctors of the Otolaryngology team examine the patient while talking with parents or companions during this attendance. This lasts 10 minutes in the average, but may take from 5 to 30 minutes, according to the case. It is performed in a room near the Audiology Department, with the apparatus for otolaryngology, frontal focus, otoscope, and instruments. The objective of such procedure is to obtain an otolaryngologic clinic assessment to ascertain if the child has a hearing impairment or not, if he or she have the conditions to be assessed and treated, if this is the case, in order to give the child conditions to be audiologically assessed, especially performing cerumen withdrawal or indicating treatment in the presence of an infectious state.

Imitanciometry

The measurement of acoustic imitance or imitanciometry is performed by clinical audiologists. Attendance is performed in a room of the department, using a specific appliance for imitanciometry, connected to a phone and a probe at 220Hz, besides olives of varied sizes. This may last for 5 to 30 minutes, depending on the patient compliance and on the need of information from the parents. The objective of imitanciometry is to assess middle ear conditions, by mobility of the tympano-ossicular chain and to help with the differential diagnosis of sensorineural, conductive and mixed hearing deficiencies, and the research about acoustic reflex.

Visual Reinforce Audiometry (VRA)

This procedure is performed by clinical audiologists. It is a procedure performed in a room with an acoustic coating, where there are an audiometer, free ground system, amplifier, microphone, videocassette, two TV sets, and two sound cases. Videotapes are also employed, with child themes, musical instruments for a rhythmic band (bells, small bells, cowbells, drums) and varied toys.   Depending on family questioning, this attendance lasts 20 to 60 minutes, and may be divided in two sessions. The objective of VRA is to assess the minimum level of auditory answers, in children aged less than 3 years or in children that do not allow or do not collaborate with the conventional examination in a cabin, as well as to observe their behavior in the presence of a sound, as it favors a better interaction between patient and professional.

Audiometry

Tonal threshold audiometry (TTA) in children below 7 years, at Cedalvi, is called child audiometry, and is performed by two audiologists of the Department of Clinic Audiology, one of them manipulating the equipment and the other performing the conditioning of the child inside the cabin. Attendance is performed in an acoustic cabin, using an audiometer, phone, adjusting toys and figures for logoaudiometry (speech tests). Its length depends upon motivation, kind and degree of hearing impairment and previous experience of the child. Generally, the period required for children is 20 minutes, so that the child must come back some other times to conclude the examination. The objective of child audiometry is to assess the hearing threshold, which is the least amount of acoustic energy that can be heard by the child and his or her performance in speech, or in other words, to assess if hearing is normal or if there is hearing impairment, determining type and degree, thus concluding the audiological diagnosis.

Ear impression

The ear impression is performed at the hearing aid department, and patients aged less than 12 years are assisted at the child hearing aid department. The procedure for ear impression is performed by audiologists, sometimes in pairs, and lasts 15 to 30 minutes, depending on the child behavior. The impression procedure requires an otoscope, a syringe to apply the mass, silicone mass, oil, gauze and alcohol to clean the syringe, a bowl, which may be a soap-case, to keep the impression, and toys to entertain the child. The objective of this procedure is to make an impression of the auditory duct and of the ear pavilion, for construction of a mold providing complete enclosure; this will position the hearing aid inside the child’s ear and will direct the sound between the hearing aid and the ear.

Hearing aid testing

Selection of hearing aid in children is performed by the audiologists, generally in pairs, when attending children below 5 years. Attendances last in average 1 hour, although the success of the procedure also depends on the behavior and the attention time of the child. Four attendances are scheduled, distributed in two or three days for each child. Several specific tests are performed at the department, alternated in common rooms and in rooms with acoustic coating, with equipments for free ground audiometry, VRA (audiometer, amplifier, TV sets, and videocassette) and sound instruments of rhythmic band with different frequencies, like drums, bells, or little bells, games and adjusting toys. The main objective of the hearing aid test is to complement the process for selection and indication, to assess the child’s performance with different models of hearing aid, to observe which is the most adequate to the child hearing needs related to amplification, to use especial controls and ear molds and, most of all, to choose the best technology (analogical, digital or digitally programmed), in a room situation, with verbal sounds and pure tones and in outside situations, with noise.

Complementary Procedures

Psychology interview

Psychology interview is performed by psychologists of the department. The room has a table, chairs, cupboards, sofa, child table and chair, mirror, toys (including specific Playmobil kits, like a surgical center) and drawing material. Psychological attendance lasts 50 minutes. The objective of this procedure is to assess how the child and family are dealing with the hearing impairment, to help parents as for practical and emotional difficulties, to offer help for their participation in the general development and child rehabilitation and favor his or her integration, as well as to collect data to facilitate the attendance by other professionals of the team, about the child and his or her family.

Nutrition attendance

Nutritionists assess the patient and offer directions to parents or companions, using the Nutrition room of the ambulatory to perform nutrition attendance. Weight and height are registered with a balance in the room or, for children below two years, the balance and the anthropometer of the Nursing Room. Attendance lasts nearly 30 minutes. The objective is to assess nutritional conditions of the child, which may interfere with his or her development and rehabilitation, to offer directions for parents for normal growth and development of the child and to suggest maintenance or change of feeding habits, including specific needs and changes in the ingestion of foods, treatment or rehabilitation of acute, chronic or surgical patients.

Nurse attendance

A nurse performs attendance individually, with the patient and a companion, generally the mother. To register weight and height balances, anthropometric rules, tape measures and a stretcher are used. This lasts 20 to 30 minutes, depending on the child behavior. The objective is to observe, at a first moment, if the child has conditions to be in an ambulatory routine of attendance, that is, if he or she had been in contact with infectious-contagious diseases or if he or she may be a transmission vehicle, as the child might offer a risk for other patients, especially those indicated for surgical routine. The objective is also to observe hygiene conditions, identify health or disease situations, offer directions to parents for promotion, prevention and protection of health, and ascertain if parents have really understood procedures and medical prescriptions.

Pediatric consultation

A pediatric doctor that gave all information for description of this procedure performs consultation. The doctor examines the child, in the presence of a companion, in a room with a table, chairs and stretcher, and uses common instruments, like stethoscope and otoscope. The procedure lasts, in average, 15 minutes. The objective in New Cases routine is to assess and offer curative or preventive medical assistance to children, identify a probable etiologic diagnosis for hearing impairment, and prepare the child for surgery, when this is indicated.

Direction Groups

Psychology Direction Group

A psychologist performs group attendance. It occurs in a room of the Psychology Department, with parents or companions of four to eight children during one hour and a half and occurs two times for the New Case routine. The objective is to counsel and offer directions to parents, solve doubts, and make an intervention to reduce anxiety on the hearing impairment of their children.

Audiology Direction Group

The audiology direction group is designed by audiologists, in a room with a table, chairs, blackboard and panels and lasts in average one hour and a half, with scheduling of four to six children’s parents and companions. Audiologists use a model of hearing aid, a mold for demonstration, posters, and all available information about schools and audiologists specialized in hearing impaired people. The objective of such procedure is to offer directions for parents on the procedure routine, explore claims and difficulties and to solve doubts about hearing impairment and the children. The possible causes, types and degrees of hearing impairment, ear functioning, importance of speech therapy and school and the role of parents are also explained, for a good global development of the child.

Final Procedure

Final interview with Social Work

Final interview with social work is the last routine procedure. It is performed by social workers of the team, lasting 20 to 30 minutes, according to the needs of the family, doubts, directions or dispositions, like reports and letters for presentation. Attendance is performed in a room of the Department of Social Work and drawing material may be employed to entertain the children. Information on schedules of municipal and inter-state buses, and names and addresses of the main representatives of hearing aid in several states are supplied. The objective is to explain the results of attendance routine of New Case, make notice of the assessments, diagnosis and the waiting time for the hearing aid, to prepare a future appointment, so that they are attentive to a new call and, if they will not be able to come, the need to get in contact with the schedule department. They are also remembered about the need to update their address and to seek for alternatives for rehabilitation of their hearing impaired child.

Considerations about Routine Procedures

Analysis of the descriptions of procedures based on interviews with professionals allowed identification of the actions related to children, their parents and the procedure itself. Related to children, when professionals apply the specific procedure. Related to parents’ actions when referring to attendance, the procedure and its results, to seek information, ask for participation, offer directions about the procedures that will be adopted aiming at children development (speech therapy, school), offer directions about routine, the institution and staying in the city, besides observing and inferring upon their difficulties and expectations. Reported actions related to the procedure itself have been the search for information in the clinic dossier about last appointments and the registration of attendance.

Conclusion

The present work is part of a descriptive study that contributes to the possibility of exchanging experiences and reflections among professionals and services that attend hearing impaired people and their families, for the diagnosis, fitting of hearing aid and rehabilitation in education and language. It allows the recognition of the possibility of action of professionals of different specialties, summing up their knowledge and putting them at the service of the needs of parents, as well as to conclude about the convenience of the action of a team, helping parents to accept the deficiency and to maintain practical directions that directly influence the development of their children.

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