Visio - Deafblind International

Transcripción

Inclusion for a lifetime of opportunities
Apresentações
Presentations
Presentaciones
TELEFONIA MOVIL 3G ACCESIBLE Y SORDOCEGUERA
EUGENIO ROMERO REY. UNIDAD TÉCNICA DE SORDOCEGUERA
Se expone en este trabajo la gran ayuda que puede suponer para las personas
sordociegas el uso de la telefonía móvil de tercera generación, la conexión
permanente a Internet que ofrecen y la disponibilidad para acceder a la
comunicación e información en cualquier momento y desde cualquier lugar.
Disponemos de miles y miles de aplicaciones en las tiendas online como
Appstore de Apple, Marked de Android o AppWorld de Blackberry. Muchas de
ellas, por no decir la mayoría, son puramente lúdicas, con infinidad de juegos y,
en muchos casos, estúpidos entretenimientos para matar el rato. Otras, por el
contrario pueden ser enormemente útiles para nuestra vida diaria, como por
ejemplo enviar y recibir e-mail, sms, comunicar y participar en redes sociales,
organizar nuestra información personal, nuestra agenda y nuestros contactos,
tomar notar o apuntar cualquier cosa, ver qué tiempo va a hacer hoy, mañana o
la semana que viene, poner un alarma para que nos sirva de despertador, leer
el periódico, hacer una videollamada, saber dónde estoy, consultar los
movimientos de nuestra cuenta en el banco, realizar una búsqueda de
información sobre cualquier cosa, buscar el significado de una palabra en el
diccionario e incluso también hasta hablar por teléfono…
Excepto esto último, todo lo demás eran cosas que hacíamos desde el
ordenador y que ya era algo habitual en nuestras vidas. Sin embargo, son
cosas que al poder hacerlas ahora desde cualquier sitio y en cualquier
momento, aumentan potencialmente su utilidad.
Vamos a intentar exponer la importancia que puede suponer para una persona
sordociega el poder hacer algunas de estas cosas desde un smartphone
gracias a las herramientas de accesibilidad que lo permiten.
Si quiero leer el periódico lo compro, si quiero ver los movimientos y el saldo
de mi cuenta voy al banco y me lo dicen, si quiero apuntar algo saco el
bolígrafo y lo apunto. También lo puedo hacer de forma alternativa desde
Internet.
Cuando una persona sordociega con capacidad de utilizar la tecnología se la
forma adecuadamente en el uso de la misma, y gracias a las herramientas de
accesibilidad que el sistema permita, llega a ser capaz de hacer alguna de
estas cosas no se trata entonces de una forma alternativa de hacerlo, quizá
sea la única forma hacerlo por sí mismo, de manera autónoma, sin que otra
persona le cuente lo que dice el periódico, le acompañe al banco o le recuerde
alguna cosa. Pero, sobre todo la posibilidad de comunicarse, desde cualquier
lugar y en cualquier momento gracias a la telefonía móvil 3G y sus
herramientas de accesibilidad.
Además de las enormes posibilidades de comunicación e información que
aporta, las plataformas de telefonia móvil 3G son tan dinámicas y con tal
potencial de desarrollo que pueden ser el entorno más adecuado para la
creación de aplicaciones que cubran necesidades específicas de las personas
sordociegas. Siempre que la accesibilidad al sistema se vaya desarrollando en
la misma medida. De momento este camino parece haberse iniciado gracias a
Apple.
Ni Android, ni Symbian, ni Blackberry, ni Windows Phone aportan las
posibilidades de utilización por parte del colectivo de personas sordociegas que
en general permite el IOS de Apple.
Hasta hace poco la accesibilidad a la telefonía móvil permitía a las personas
sordociegas el acceso a los sms y poco más. Pero ahora el gran salto ha
comenzado y vamos a intentar exponer aquí cómo las personas sordociegas se
pueden beneficiar de él.
Todos los sistemas pueden ser utilizados por las personas sordociegas
siempre que estas tengan unos restos de visión útiles y la agudeza que se
conserve permita la funcionalidad suficiente para acceder al contenido de la
pantalla. Pero cuando la persona sordociega es ciega o sus restos no son
funcionales y requieren el uso de software lector, ninguna otra plataforma
permite al usuario un acceso tan completo a las prestaciones que supone
Internet en el teléfono móvil.
El iPhone de Apple incorpora varios recursos de accesibilidad en el propio
sistema operativo y que no aporta ninguna otra plataforma. Incluso con la
instalación de software de adaptación externo en alguna otra plataforma, se
consigue el nivel de accesibilidad que presenta el iOS gracias a las siguientes
herramientas:
-
Un lector de pantallas, VoiceOver, que a través de la lectura por voz y
gestos táctiles y/o braille, a través de un teclado con línea braille
bluetooth, permite el seguimiento completo y accesible de muchas de las
aplicaciones del sistema y de muchas otras que se descargan e instalan.
-
Un Zoom configurable que permite el acceso a todas las zonas de la
pantalla a través de gestos táctiles. También la posibilidad de poner alto
contraste o de ampliar el tamaño de las fuentes y elementos sin ampliar
la pantalla completa.
Siempre que existan restos de audición y comunicación oral siendo ciegos,
quizá puedan hablar por teléfono, pero en todo caso, VoiceOver les permitirá
moverse por la pantalla con el seguimiento táctil que permite la síntesis de voz
para la lectura de los contenidos.
Si existen restos visuales funcionales aunque sean sordos y no puedan hablar
por teléfono, el Zoom y la configuración visual les permitirá comunicarse de
forma alternativa y acceder a la información en general.
Pero a mayor privación sensorial mayores necesidades de comunicación e
información. Por ello vamos a describir como puede utilizarlo una persona
sordociega total a través del acceso por braille.
Para ello se requiere la utilización de un Teclado-Línea Braille. Se trata de
Líneas Braille portátiles que incorporan también un teclado en su diseño. Estos
dispositivos, además de conectarlos al ordenador, también se pueden conectar
a los teléfonos móviles como soporte braille de los lectores de pantalla.
Conectados al iPhone a través de bluetooth ofrecen la información de la
pantalla a través de la línea braille para su lectura, a la vez que desde el
teclado braille permiten la escritura y el movimiento por la pantalla y la
navegación por el sistema y los programas, a través de los comandos y
pulsaciones que lo permite.
Apple soporta la mayoría de estos dispositivos del mercado tiflotécnico: las
Varioconect de Baum, Esys de Eurobraille, Easylink de Optelec, Focus de
Freedom Scientific, etc.
C.R.J. es una persona sordociega total. Nació sorda y quedó completamente
ciega tras la largisima adaptación a la pérdida visual que requiere el Síndrome
de Usher, prácticamente toda su vida. Con sus increíbles ganas de aprender y
de superarse fue aprendiendo todo aquello que ahora le permite utilizar, en
general, la tecnología de la información y la comunicación. Sobre todos los
demás, dos aspectos destacan fundamentales: mejorar su lectoescritura con un
mayor conocimiento del lenguaje, y conocer y utilizar el sistema Braille.
Tiene 66 años, es, y siempre fue ama de casa. Sus estudios son primarios. No
se trata pues del perfil, a priori, más adecuado o que pudiera favorecer el que
las tecnologías más actuales se integren en su vida diaria.
¿Cómo funcionan en conjunto el smartphone y un TLB?
A través de la revisión de la pantalla del smartphone y la ejecución de las
distintas combinaciones de teclas y pulsaciones tendremos, en principio, pleno
acceso al manejo del terminal telefónico desde el TLB. Desde el teléfono solo
se requiere en la práctica realizar la pulsación de la tecla de
encendido/apagado: encenderlo, apagarlo y bloquear y desbloquear la pantalla.
Siempre será conveniente guardar el terminal en el bolsillo o en un lugar de la
ropa en contacto con el cuerpo que nos permita tener acceso a la vibración.
La portabilidad de ambos dispositivos permite llevarlos siempre consigo, de
forma que la persona sordociega tiene acceso directo e inmediato por braille al
iPhone que guarda en su bolsillo, es decir, a todas las utilidades y ayudas, que,
sobre todo para la comunicación, supone Internet. Para cualquier evento en el
terminal este nos vibrará. El usuario enciende su TLB, desbloquea la pantalla
del iPhone y ya está disponible la información en braille para responder a ella.
Podemos revisar completamente la información de la pantalla desplazando el
foco de VoiceOver por la misma, en sentido descendente o ascendente. Este
se irá posicionando sobre los distintos elementos de la pantalla, que podremos
ir revisando de una forma lógica e intuitiva para realizar las distintas acciones,
leer la información y responder a ella desde el dispositivo braille con las
pulsaciones y acciones correspondientes en cada caso.
Las pantallas de las aplicaciones tienen una estructura y diseño similar,
siguiendo un esquema lógico y repetido en su distribución espacial de
elementos e información, lo que permite que el uso sea tan intuitivo y sencillo
como lo es para la gente en general, con la necesaria y correspondiente
formación específica en su uso y dirigida a este objetivo, que cuando la
persona sordociega reúna los requisitos para poder utilizarlo, lo llegue a utilizar
con autonomía.
VoiceOver permite revisar y leer de forma completa las listas de elementos de
las bandejas de correos y mensajes, abrir de forma sencilla cualquier elemento
para leerlo así como acceder de manera rápida y práctica a la posibilidad de
responder, reenviar, crear o borrar los distintos correos electrónicos.
Con el acceso permanente a Internet gracias a la red de datos móviles 3G la
persona sordociega no solamente podrá recibir y responder sms por la red
gprs, sino que además, activando las notificaciones push del correo electrónico,
la persona sordociega puede recibir un mail prácticamente en el momento que
se lo envían, con la vibración correspondiente, sin tener que abrir el programa
de correo para comprobar, de tanto en tanto, si ha recibido correo nuevo. Es
decir dotamos al e-mail de la inmediatez del sms pero ampliando
considerablemente el máximo de los 160 caracteres por mensaje.
La compañía telefónica Vodafone pone al servicio del usuario con discapacidad
auditiva la posibilidad de que las personas oyentes dejen mensajes hablados
en su buzón de voz que el usuario recibirá por escrito, tras la correspondiente
conversión de voz a texto. Este texto puede ser leído en braille por la persona
sordociega usuaria de la tecnología de adaptación expuesta.
Pero además, podemos comunicar en tiempo real, de forma alternativa a como
hacen las personas oyentes a través del chat, con aplicaciones accesibles de
mensajería instántanea para VoiceOver como por ejemplo “Messenger Pro”.
Desde esta aplicación se puede acceder en braille toda la información relativa a
la lista de contactos y a cada uno de ellos. Pulsamos sobre el nombre que
queramos y se abre la ventana de conversación con el cursor listo para escribir
en el campo correspondiente. Rastreando la pantalla accedemos a leer el
mensaje recibido. Escribimos directamente la respuesta y el foco se sitúa
automáticamente en el campo de edición de mensaje saliente. Con esta
sistemática podemos realizar una conversación en tiempo real de forma
sencilla y accesible.
Teniendo la sesión abierta y el programa en un segundo plano, recibiremos con
la vibración correspondiente al aviso de llamada de cualquiera de nuestros
contactos, estando por tanto en disposición de recibir una llamada en tiempo
real por chat en cualquier momento y responder a ella.
Si activamos las notificaciones de todas las utilidades comunicativas del
smartphone, nos aparecerán mensajes emergentes con el aviso del evento:
llamada de chat, nuevo mail, etc. Si se desatienden dichos mensajes no
respondiendo en el momento, siempre podremos consultar posteriormente a
qué evento ha correspondido la vibración a través de los números asociados a
los distintos iconos de la pantalla de inicio y que representan los eventos
recibidos y asociados a cada uno. Ejemplo: (3)Sms, (1)Mail, (2)Messenger…
En España, los servicios de intermediación telefónica para personas sordas
ofrecen a las personas sordociegas servicios que permiten que estas utilicen el
ordenador adaptado para poder realizar llamadas telefónicas a personas
oyentes a través del Messenger de Hotmail. Ahora, con la telefonía 3G
accesible pueden hacer esto mismo pero desde cualquier sitio y lugar, con lo
que esto significa de aumento significativo en el potencial comunicativo de la
persona usuaria de esta tecnología.
Gestión de la información personal:
Es el caso de las aplicaciones como “Contactos”, el “Calendario”, “Notas”,
“Reloj – (Alarmas)”.
El hecho de poder programar una alarma que nos hará vibrar el terminal a la
hora indicada podrá servir como despertador a una persona sordociega total,
poder programar un aviso en la agenda nos ayudará en nuestra vida diaria o la
posibilidad de tomar nota de algo o apuntar cualquier dirección, teléfono o
aspecto a recordar gracias a disponer de este bolígrafo accesible es muy
importante para las personas sordociegas que, por falta de referencias
espaciales y de otro tipo, se ven obligadas a “llevar todo en la cabeza”.
Aplicaciones para conocer el tiempo atmosférico:
Estas aplicaciones permiten acceder a una información detallada del tiempo
atmosférico de aquellas ciudades o lugares que el usuario desee guardar y
configurar.
Siempre pienso en una persona sordociega que me decía que, como
consecuencia del aislamiento comunicativo e informativo en el que se
encontraba, hasta para poder ver el tiempo que hacía ese día y ponerse la ropa
adecuada su solución era salir a la terraza, sentir la temperatura del aire, poner
la mano a ver si llovía u oler el aire para detectar sequedad o humedad.
Esto es un ejemplo de cómo la tecnología puede ser más útil o cubrir muchas
más necesidades o necesidades más básicas a las personas sordociegas que
a las personas en general.
Navegador Web:
VoiceOver, a través del navegador “Safari” nos permite explorar y leer las
páginas con mucha funcionalidad.
Gracias al diseño específico de la “versión móvil” que se descarga de muchas
url cuando tecleamos su dirección en el navegador Safari desde un iPhone,
podemos leer y explorar muchas páginas de forma casi lineal. Podemos
comprobar fácilmente la diferencia entre la versión móvil de un periódico digital
si tecleamos su dirección en un smartphone y la comparamos con la que nos
carga el navegador del PC, siendo la primera mucho más sencilla y fácil de leer
con nuestras adaptaciones.
Favorece además, la usabilidad del navegador en el Smartphone respecto al
ordenador personal, el hecho de que, en el primero, los diseños son mucho
más simplificados y sencillos, más usables y prácticos, desprovistos de mucha
de la publicidad, exceso de enlaces e información gráfica inaccesible con la
que el navegador del PC nos abruma.
Además, las personas sin visión se ven favorecidas respecto a la posible
incomodidad que las pantallas de los smartphones pueden suponer, por su
pequeño tamaño, para el uso por parte de la gente en general.
Incluso, para simplificar y facilitar todavía más el uso y acceso a la información
de la web, prácticamente todos los periódicos, revistas, bancos y grandes
instituciones han creado una aplicación específica para smartphone, que una
vez descargada e instalada nos aporta todavía más usabilidad y sencillez en el
acceso a su información que la versión móvil de la web, ya de por sí más
accesible que la genérica.
Ahora vamos a centrarnos en algunos ejemplos de aplicaciones especialmente
útiles para las personas sordociegas si cabe, aunque, como es habitual no se
desarrollarán para ello.
Reconocedor de voz “Dragon Dictation”:
La funcionalidad de este programa y para lo que fue diseñado es la posibilidad
de no tener que escribir en el terminal: mails, sms, textos, en general. Hablarle
al terminal y que se convierta en texto escrito. La sencillez del programa y la
accesibilidad al contenido escrito de lo que hemos dictado al terminal permite
utilizarlo por la persona sordociega como comunicador. La persona oyente le
habla al terminal y la persona sordociega accede al contenido convertido en
texto escrito. Ella puede responder igualmente por escrito desde su TLB
reflejándose en la pantalla del teléfono, u oralmente si tuviera posibilidad de
hacerlo.
En contextos controlados y situaciones comunicativas más sistematizadas el
nivel de reconocimiento es francamente bueno (entrevistas, consultas, etc,
donde no hay mucho ruido ambiental, se puede hablar con mayor vocalización
y un ritmo adecuado). Se puede utilizar de manera muy práctica, cubriendo
esta necesidad como se ha hecho hasta ahora con dispositivos comunicadores
diseñados al efecto, como por ejemplo el “Screen Braille Comunicator” de
Lagarde.
Aplicaciones para reconocer el color de un objeto o prenda de vestir como
“Aids Colors”, otras para determinar nuestra posición y localización en caso de
pérdida o aviso como “Donde estoy”, “Estoy aquí”, etc, o un simple diccionario
que nos permita conocer el significado de una palabra en cualquier momento
pueden ser aspectos enormemente útiles para las personas sordociegas.
No podemos dejar sin exponer como utilizarían otras personas sordociegas el
iPhone, aquellas con restos visuales y/o auditivos y que no requieren el uso
obligado del braille, es decir, a través de las prestaciones de accesibilidad
basadas en el acceso auditivo y de voz o bien a través de adaptaciones
visuales de la información.
Para el acceso por voz se realiza a través del rastreo táctil de la información de
la pantalla por medio de los gestos táctiles de VoiceOver y la salida por
síntesis de voz.
Para el acceso visual se realiza a través del Zoom y/o adaptaciones de la
información de la pantalla con alto contraste, aumento del tamaño de las
fuentes o ampliación de la información desde determinadas aplicaciones con el
gesto de “pellizcar la pantalla”.
Para muchas personas con S. Usher, una pequeña ampliación o ninguna y el
alto contraste activo suele ser suficiente para disfrutar de todas estas utilidades
y sobre todo para el acceso a toda aquella información que está en Internet en
Lengua de Signos, sin olvidar la posibilidad de comunicar en esta lengua a
través de la videoconferencia (Facetime entre Apple, ooVoo, Skype, Fring, etc).
Aunque para ellas y para esta utilidad concreta las tablets serán mucho más
prácticas y visualmente más accesibles.
Para realizar videoconferencia con la calidad suficiente en Lengua de Signos,
sobre todo para personas con dificultades visuales, la conectividad 3G no
aporta todavía la velocidad de transmisión de datos que la garantice por lo que
todavía es necesario depender de la conexión Wifi en la mayoría de los casos.
Para el acceso a la información signada en la web, signoblogs, etc si suele ser
suficiente con una buena cobertura 3G.
Otra prestación muy interesante para las personas sordociegas signantes con
restos de visión funcionales es el videocorreo. Desde la cámara del iPhone
podemos grabar pequeños videos en Lengua de Signos e incorporarlos como
adjuntos a los mails, así como recibirlos igualmente para visualizarlos y
responderlos.
Un ejemplo de aplicaciones desarrolladas específicamente para cubrir
necesidades de las personas sordociegas, en este caso para la comunicación
interpersonal e igualmente para aquellas con restos visuales es “TouchTalk”.
Aplicación basada en la adaptación del alfabeto dactilológico inglés a la
pantalla del iPhone.
CONCLUSIONES:
Muchos desarrollos tecnológicos para sordociegos llevan consigo multitud de
inversión en dinero y recursos para desarrollar dispositivos y sistemas muy
específicos, con prestaciones muy puntuales que cumplen un objetivo muchas
veces muy concreto. El que las personas sordociegas utilicen la tecnología
estándar adaptada como esta que hemos mostrado en este trabajo, les
equipara con el resto de la sociedad por un lado y además, a priori es un
camino mucho más productivo para el acceso a la ayuda que puede suponer a
las personas sordociegas el uso de la tecnología que la utilización de
dispositivos específicos.
Podría parecer a priori que toda la tecnología descrita a través de los
dispositivos mostrados es difícil de usar. No son excesivamente sencillos y
simples, pero tampoco son enormemente complejos. El usuario puede llegar a
sistematizar su forma de trabajo, sobre todo en aquellas tareas o uso de las
aplicaciones más habituales utilizadas por él. Se requerirá un adecuado
entrenamiento para conocer la composición de las pantallas y sistematizar y
esquematizar la distribución de la información y las acciones a realizar en cada
caso, interpretar la información que aparece y saber relacionarla con la acción
a realizar. Una vez logrado esto, con el tiempo de entrenamiento que se
requiera en cada caso, el usuario sordociego podrá utilizar aquellas
prestaciones y utilidades que sean más adecuadas para sus intereses y
comunicación.
He formado a muchas personas sordociegas en el uso del ordenador personal
en el entorno Windows, con las adaptaciones necesarias para cada caso y
puedo afirmar que, sobre todo para personas sordociegas totales que requieren
el uso del braille, es más sencillo utilizar un iPhone con un TLB que un
ordenador en Windows con una línea braille.
Podemos contribuir para que estas tecnologías lleguen al bolsillo del usuario
sordociego, que le ayuden en su día a día y no sea cosa de adolescentes de
familias de alto poder adquisitivo o ejecutivos. Porque cubren necesidades
humanas mucho más básicas de comunicación e información a las personas
sordociegas que al resto de la gente. Y podemos contribuir desde nuestros
ámbitos profesionales a romper esas barreras sociales y económicas que lo
permitan. Para ello, lo primero es que los profesionales que trabajan con las
personas sordociegas desde las distintas instituciones, sean los primeros en
conocerlas, entenderlas y compartirlas para potenciar que se facilite desde las
distintas instituciones y administraciones, el que las personas sordociegas
puedan beneficiarse de su uso y ayudarles en su ya de por sí difícil día a día.
No hay, de momento otra solución para romper con el gran hándicap que
suponen los elevados costes económicos para que estas tecnologías lleguen al
usuario sordociego. Elevados costes de los terminales y sobre todo cuando se
requiere un hardware braille para su uso.
Eugenio Romero Rey
Instructor de Tiflotecnología y Braille.
Unidad Técnica de Sordoceguera ONCE
[email protected]
XV Conferencia Mundial Sordoceguera DbI
Sao Paulo (Brasil) 27 de Septiembre – 1 de Octubre 2011
I don´t follow you
because I trust in you
Early dialogues of a congenital Deafblind girl (Waardenburg
Syndrome) with Cochlea Implant and her intervener
Workshop at the
XV Deafblind International World Conference
September 30th, 2011
Sao Paulo, Brazil
Andrea Scheele, Ursula Horsch
University of Education Heidelberg, Germany
Greetings from me to you
Welcome…
…and thank you!
27/09/2011
~ I don´t follow you, because I trust in you! ~
2
Agenda
I.
II.
III.
IV.
27/09/2011
Research design
Video sequence
Analysis in chapters
Discussion
3
I. Research design
Method
27/09/2011
25 Child-Parent-Pairs
Congenitally Deafblind, 14 have CHARGE
Monthly video recording (15 min./analysis: 4 min.)
„Natural setting“
Twelve months (+ more, some over 5 years)
n=325 video recordings (February 2011)
Analysis with software „Interact“ (Mangold) and
statistical research instrument SAS
Macro: mean values, correlations,
variance
Micro: transition probabilities, time series
analysis, image recognition
4
I. Research design
Computerbased
analysis
27/09/2011
5
Agenda
I.
II.
III.
IV.
27/09/2011
Research design
Video sequence
Discussion
6
II. Video sequence
Background
child
27/09/2011
The child: Merve
Age: 3 years and 4 months
Main diagnosis: Waardenburg-AnophthalmiaSyndrome
Vision: Totally blind
Hearing supply: CI with one year, but no
acceptance. With three residential early
education more and more acceptance
through loving decidedness referring wearing
Miscellaneous: body contact, hypotone –> PT
7
II. Video sequence
Background
intervener
The intervener
Individual learning via relationship as partners
First contact: Breathing and blowing
Selected topics (examples):
Development in play / Objects of reference
Balance: demanding
offering
having goals in mind
following
following + reaching the goals
27/09/2011
8
II. Video sequence
Focus
Child and early intervener
in dialogue
(~ 5 min)
Please watch the video very closely
and have especially a look at the topics
which occure and at the „between“!
How does the dialogue flow?
27/09/2011
9
Agenda
I.
II.
III.
IV.
27/09/2011
Research design
Video sequence
Discussion
10
III. Analysis in chapters – Part I
First chapter
The game: my nose, your nose
Second chapter
Off! Off! Off! - Negotiation
Third chapter
Merve claims for space! - Proximity and distance
Fourth chapter
Waiting: Merve tells me: “off!” and I understand her
27/09/2011
11
III. Analysis in chapters – Part II
Fifth chapter
Off! Off! Off! - Hands can also offer: “come!”
Sixth chapter
Come… and off!
Seventh chapter
Togetherness
Eighth chapter
Talking about…
27/09/2011
12
III. Analysis in chapters – Part III
“I don´
don´t have to follow you,
because I trust in you!” (child)
“I do follow you, because I´
I´m interested in you
and want to share your experience!”
experience!”
(`make it to OUR experience`/intervener)
“Bildung”/education as a dialogical based process.
27/09/2011
13
Agenda
I.
II.
III.
IV.
27/09/2011
Research design
Video sequence
Discussion
14
Thank you for your
attendance!
I´m looking forward to
questions, comments,
suggestions and an inspiring
discussion.
27/09/2011
15
VI. Discussion
Space to enter the dialogue
with each other…
27/09/2011
16
27/09/2011
17
Chapter 1: The game – my nose, your nose
27/09/2011
18
Chapter 2: Off! Off! Off! - Negotiation
27/09/2011
19
Chapter 3: Merve claims for space (proximity and distance)
27/09/2011
20
Chapter 4: Merve tells me: „off“ and I understand her
27/09/2011
21
Chapter 5: Off! Off! Off! – Hands can also offer: „come!“
27/09/2011
22
Chapter 6: Come… and off!
27/09/2011
23
Chapter 7: Togetherness
27/09/2011
24
Chapter 8: Talking about…
27/09/2011
25
“Evaluación Funcional Fonoaudiológica.
Evaluar para aumentar oportunidades”
Dra. Nora Sinopoli
INTRODUCCIÓN
Es necesario reflexionar sobre la evaluación
de los niños/jóvenes con sordoceguera
considerando y reconociendo sus
necesidades educativa y de abordaje
terapéutico específicos.
El cambio de paradigma nos ha inmerso en
una mirada biosicosocial integradora.
FUNDAMENTACIÓN
Es por eso que al tener que evaluar a niños
sordociegos y con discapacidad múltiple
surge la necesidad imperiosa de hacerlo
“funcionalmente”.
La falta de conocimiento de esta población,
su heterogeneidad, sus características
especiales hacen surgir las siguientes
preguntas:
HIPÓTESIS
• Existen patrones en las áreas de Audición
Funcional, Comunicación y Cognición en
estos niños?
• Podemos conocer sus niveles de
funcionamiento en estas áreas y así
confeccionar una planificación funcional
individual ajustada a cada niño?
Para responder estas hipótesis se diseño un
Instrumento de Evaluación Funcional
Fonoaudiológico (I.E.E.F.) contemplando las
siguientes áreas :
• Audición Funcional
• Comunicación: Receptiva y Expresiva.
• Cognición Funcional
Clasificándolas conforme los Niveles de
Funcionamiento:
– Bajo
– Medio
– Alto
METODOLOGÍA
Se planteo una investigación:
Según los objetivos dentro de la metodología
Descriptiva de cuantificación.
Según el momento de formulación y recolección
de datos, corresponde a un Diseño
retrospectivo.
Según la intervención del investigador es del tipo,
observacional.
Según el número de mediciones, es del tipo
transversal.
Se trabajo con los legajos de la Institución Fátima
para personas con Sordoceguera Argentina.
LA EVALUACION FUNCIONAL:
SE CENTRA LA MIRADA EN EL FUNCIONAMIENTO
INTEGRAL DE LA PERSONA
En su entorno familiar
En su comunidad
En su vida social
EVALUACIÓN FUNCIONAL
Es un proceso dinámico, flexible,
interdisciplinario y global.
Se consideran un conjunto de áreas
funcionales teniendo en cuenta las
características personales, necesidades,
destrezas previas o a potenciar,
El objetivo es orientarse hacia un nivel de
funcionamiento a fin de organizar el
abordaje de manera eficiente para
mejorar sus habilidades.
CONSIDERACIONES EN LA
EVALUACION FUNCIONAL
En relación a los niños:
Dificultad para establecer un vínculo empático
Adaptarse a un medio ambiente físico desconocido.
La lentitud en la ejecución de los distintos ítems o áreas
relevantes que se evalúan.
La gran heterogeneidad que existe entre los niños,
desde sus niveles de funcionamiento, a sus estilos de
aprendizaje o modelos de comunicación.
Presentan además una baja tolerancia a la frustración,
mayor fatigabilidad, escasa atención y concentración,
baja persistencia en la tarea, presencia de rituales
estereotipados de relación, alteraciones perceptivas no
siempre diagnosticadas (baja visión, hipoacusia,
disfunción en integración sensorial entre otros).
IMPORTANCIA DE LA FAMILIA
Cada vez es más la necesidad de que los
padres estén presentes y que participan en el
equipo, muy especialmente cuando son las
primeras evaluaciones.
Especialmente en el ámbito de la comunicación
y el vínculo. Es frecuente, que el niño no
responda ante las tareas planteadas por los
profesionales, sin embargo, el padre o la madre
logran motivarlo, a hacer lo mismo que el
evaluador no consiguió.
IMPORTANCIA DE LA FAMILIA
Cuando los padres pueden participar, se
dará un matiz más valioso al proyecto
evaluativo; que será más completo.
Los padres entenderán que no se trata de
un evaluar al modo clínico, para encontrar
solo dificultades y defectos, sino fortalezas
y facilidades del niño.
Necesariamente dará un mayor
conocimiento sobre el niño y ayudará en
el acercamiento y enriquecimiento de la
relación padre-hijo.
TECNICAS Y MATERIALES
• Se debe de disponer de un ambiente ecológico
o natural, para propiciar oportunidades
concretas y reales a nivel funcional
comunicativo o cognitivo.
• Se debe de observar al niño/joven en sitios
familiares para ellos, con personas familiares
para ellos (aunque necesite de un tiempo para
que nos conozca), en estado de vigilia, sin
sueño, sin hambre, con elementos que le gusten
y le llamen la atención, dándole tiempo para
responder e ir interpretando sus respuestas.
• Es un relevamiento de datos y un registro de
observaciones de cualquier indicio de
respuesta, por mínima que sea, (parpadeo,
negación, agrado, desagrado, vocalizaciones,
llanto, sorpresa, aumento o disminución de tono,
movimientos corporales, gestos o palabras) que
nos informe sobre como recibe y expresa la
informació
información de todo el entorno.
• Cualquier respuesta o información que
encontremos se le debe buscar la funcionalidad
para la vida diaria.
• Propiciar un espacio relajado y silente, donde
estén controlados los estímulos, esto
significa: que los materiales u objetos con los
que vamos a trabajar, deben de están dentro de
contenedores y no dispersos a la vista o alcance
del niño. Se tendrá el cuidado de ir sacándolos
conforme al planteo de actividad evaluativa.
• Es importante que estén preparados con
anticipación, a fin de tener un orden para el
registro de las respuestas y no tener que
buscarlos si aparece un comportamiento que
precise de algún elemento para definir una
respuesta
MATERIALES:
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Instrumentos musicales (flauta, bombo, silbato, cencerro, maracas y pandero)
equipo de sonido con salidas laterales y ecualizador
música cantada
Disco compacto de discriminación auditiva
juguetes sonoros (sonajeros, cornetas, matracas, palmetas, pelota con cascabeles)
juguetes de causa y efecto (tanto lumínicos, como sonoros o de movimiento)
juguetes sin sonido (peluches, muñecos, autitos, jueguitos de te, de mate, cocinitas,
animales de granja)
cubos de encastre
cajas con objetos concretos (cubiertos, plato, taza, vaso, sorbetes, servilletas, un
mantelito, toalla, jabón, cepillo de dientes, perfume, etc.)
muñeca con vestimenta.
cesto con pelotas grandes y pequeñas, de ser posible tener una pelota Bobath y un
inflable tipo “maní”, cuerpos de goma espuma.
Hamaca, silla con ruedas (tipo oficina)
juego de seriación por tamaño, color y forma (preferentemente de 3 o 4 elementos,
de madera y de goma)
Libros con láminas de secuencia, formas, situaciones cotidianas, con fotografías y/o
con relieves.
Tarjetas de memoria.
globos de diversos colores
un espejo de 30 x 40 cm.
sombreros, guantes, medias.
Niveles de funcionamiento
Nivel bajo: niños/jóvenes que su comunicación queda
limitada a los aspectos básicos por no llegar a la
motivación cognitiva. Carentes de impulso/deseo para
interactuar con personas, aprender del entorno.
Nivel medio: son capaces de interesarse en el mundo
cognitivamente (por los objetos y por las personas),
resuelven problemas simples, son semi independientes
o con mínima asistencia.
Nivel alto: niños/jóvenes SC sin otro limite cognitivo, que
el derivado de la propia sordoceguera, demuestran
estrategias de resolución de problemas y se interesan
por el mundo que los rodean, capaces de llevar una vida
y enseñanza plausible de ser normalizada con las
ayudas necesarias.
Áreas o Dimensiones
Seleccionadas en el I.E.F.F.
Audición Funcional:
Se considera Audición Funcional al resto o
remanente auditivo que el niño sordociego
posea, a fin de establecer que puede
percibir y cual es su utilidad funcional,
con el objetivo de lograr su mejor
potencialidad con o sin equipamiento
auditivo.
Comunicación Receptiva
Se considera Comunicación Receptiva a la
posibilidad de recibir, procesar y
comprender la información del entorno, ya
sea a través de la comunicación Gestual,
Lengua de Señas Argentina (LSA) o
Lenguaje Oral.
Recepción Gestual del Lenguaje
Recepción Oral del Lenguaje
Comunicación Expresiva
Se considera Comunicación Expresiva a la
posibilidad de expresar, hacerse entender
o manifestar los deseos o necesidades,
mediante el uso de gestos naturales,
Lengua de Señas Argentinas (LSA) o
Lenguaje Oral.
Expresión Gestual del Lenguaje
Expresión Oral del Lenguaje
Cognición Funcional: Se consideraron
las áreas involucradas en la percepción,
comunicación y lenguaje.
Atención y Memoria
Curiosidad/Interés
Relación con los objetos
Juego
Resolución de Problemas
Clasificación y Seriación
Esquema Corporal
Secuencia Temporal y Espacial
Resultados
• Se analizaron los datos de 150 niños, de los
cuales el 92/150 (61%) pertenecen al sexo
masculino y el resto (39%) al sexo femenino.
• El promedio de edad entre varones fue 9 ± 3 y
entre las mujeres fue 8 ± 3. Las diferencias
entre los promedios de edades fueron
estadísticamente significativas (t=1,07; p=0,03).
Sin embargo desde el punto de vista biológico
no se hallaron diferencias clínicas.
• La distribución de frecuencias de los diferentes
diagnósticos hallados en los niños estudiados
se detalla en el Gráfico 1.
GRAFICO 1
DIAGNOSTICOS HALLADOS EN LOS NIÑOS
60
53
52
50
41
40
Prematurez
SRC
30
Infecciosa
Otras
20
10
4
0
Prematurez
SRC
Infecciosa
Otras
Con respecto al grado de pérdida auditiva y visual se halló que solo 9 /150 (6%
) tenían pérdida auditiva y visual total combinadas; mientras que 65/150 (43,3
%) tenían pérdida auditiva y visual parcial combinadas (ver Gráficos 2 y 3)
GRADO DE PÉRDIDA AUDITIVA Y PÉRDIDA
VISUAL COMBINADAS
RELACION DE AMBAS PERDIDAS PARCIALES Y AMBAS
PERDIDAS TOTALES
70
60
50
9
40
30
ambas pérdidas parciales
20
ambas pérdidas totales
10
0
Perdida AP/VP Perdida AT/VP Perdida AP/VT Perdida AT/VT
65
9
40
36
65
CASO 1: SORDOCIEGO TOTAL
Edad: 14 años, Prematurez Extrema
COGSTE
FUNAU
3
2
COGEC
Igual diagnostico –
diferentes respuestas
funcionales
CRECEPG
CRECPO
1
COGCS
CEXPREG
0
COGRP
CEXPREO
COGJ
COGRO
CASO2: SORDOCIEGO PARCIAL CON RESTO
AUDITIVO Y VISUAL
COGAYM
COGCCI
FUNAU
COGSTE
COGEC
COGCS
CASO 3: SORDOCIEGO PARCIAL CON RESTO AUDITIVO
Y VISUAL
COGSTE
COGEC
COGCS
COGRP
FUNAU
3
CRECEPG
2
CRECPO
1
CEXPREG
0
CEXPREO
COGJ
COGRO
COGAYM
COGCCI
COGRP
COGJ
COGRO
3
2, 5
2
1, 5
1
0, 5
0
CRECEPG
CRECPO
CEXPREG
CEXPREO
COGAYM
COGCCI
CASO 4: SORDOCIEGO TOTAL
Edad: 14 años; Sindrome de Rubeola Congénita
COGSTE
FUNAU
3
COGEC
2
CRECEPG
CRECPO
1
COGCS
CEXPREG
0
COGRP
Igual diagnostico – diferentes
respuestas funcionales
CASO 5: SORDOCIEGO PARCIAL CON RESTO VISUAL Y
PERDIDA TOTAL DE LA AUDICION
Edad: 12 años, Sindrome de Rubeola Congénita
CEXPREO
COGJ
COGRO
COGAYM
COGCCI
FUNAU
CRECEPG
COGSTE 3
2
COGEC
CRECPO
1
COGCS
CEXPREG
0
COGRP
CASO 6: SORDOCIEGO PARCIAL CON RESTO VISUAL Y
PERDIDA TOTAL DE LA AUDICION
Edad: 13 años, Sindrome de Rubeola Congénito
COGSTE
COGEC
COGCS
FUNAU
3
CRECEPG
2
CRECPO
1
CEXPREG
0
COGRP
COGJ
COGRO
CEXPREO
COGAYM
COGCCI
COGJ
COGRO
CEXPREO
COGAYM
COGCCI
CASO 7: SORDOCIEGO PARCIAL CON RESTO
VISUAL Y AUDITIVO
Edad: 14 años, Sindrome de Down
COGSTE
COGEC
COGCS
FUNAU
3
CRECEPG
2
CRECPO
1
CEXPREG
0
COGRP
CEXPREO
COGJ
COGRO
Diferentes diagnósticos
respuestas funcionales similares
CASO 8: SORDOCIEGO PARCIAL CON PERDIDA
TOTAL VISUAL Y RESTO AUDITIVO
Edad: 9 años, Adicción Materna
COGAYM
COGCCI
COGSTE
COGEC
COGCS
FUNAU
3
CRECEPG
2
CRECPO
1
CEXPREG
0
COGRP
COGJ
COGRO
CASO 9: SORDOCIEGO PARCIAL CON RESTO
VISUAL Y AUDITIVO
Edad: 10 años, Mucopolisacaridosis
COGSTE
COGEC
FUNAU
3
2
CRECEPG
CRECPO
1
COGCS
COGRP
COGJ
COGRO
0
CEXPREG
CEXPREO
COGAYM
COGCCI
CEXPREO
COGAYM
COGCCI
conclusiones
• Aportar un orden a la confección de un informe
de carácter “evaluativo funcional”, que nos
orientará para la realización de una planificación
en el tratamiento, mas ajustada al universo
heterogéneo de esta población de estudio.
• Es imprescindible, creer en la capacidad de
modificabilidad y aprendizaje, de tal manera,
que se plantee una búsqueda activa e
interesada, que trascienda a la aplicación de la
evaluación de manera formal.
Tenemos que estar dispuestos a encontrar por
debajo de muchas conductas, que empañan lo
“objetivamente medible”, al verdadero potencial
que cada niño posee.
Por lo que se debe tener especial cuidado en el
momento de evaluar, en cuanto a la toma de
conciencia del ambiente, la selección de
materiales conforme a los restos sensoriales de
cada niño en particular, tiempo empleado y en
centrar la observación en las conductas
comunicativas del niño.
CONCLUSIONES FINALES
El ser humano es, integral, singular y
valioso, por lo tanto evaluarlo no debe ser
“rotularlo o etiquetarlo”.
Evaluar es conocer para hacer, es entrar al
mundo del niño con humildad y respeto,
para ponerse al servicio de sus propias
necesidades, de su familia, su comunidad,
y su escuela.
MUCHAS GRACIAS….
Dra. Nora Sinopoli
[email protected]
Stress and Individuals with
Multiple Disabilities:
The Good, Bad, and the Ugly
Catherine Nelson, PhD
University of Utah
[email protected]
(801) 585-3260
Kristen Paul, M.Ed.
University of Utah
Stress: The Good, Bad, and the
Ugly
Stress is a part of a process we use to
evaluate and attempt to cope with
challenges
Normal process if time limited
Time limited stress is protective
Prolonged stress can damage the body
including the brain
Physiology of Stress
Sympathetic nervous system (SNS):
Activates physiological responses to stress
Parasympathetic nervous system:
Activates relaxation response
Tug of war to achieve balance or
equilibrium
Physiology of Stress
Limbic System
Emotional brain
Stress and Physiological Processes:
The Good
Rush of hormones from sympathetic nervous
system
Adrenaline
Norepinehrine
Cortisol
Heart rate increases
More blood to skeletal muscles
Pain dulled
Sugar and fat turn to energy
Stress and Physiological Processes:
Parasympathetic Nervous System
(PNS)
Counter defenses protect hippocampus
from too much cortisol ordered by
hypothalamus
Attempts to bring body back to balance
SNS is slow to shut down leaving the
individual in a state of readiness for awhile
Stress: The Bad and the Ugly
Sometimes stress hormones remain active
for too long
Injure and kill cells in hippocampus
Hippocampus needed for memory and
learning
Excessive cortisol affects long-term
memory
Stress: The Bad and the Ugly
Stress hormones divert glucose from brain to
muscles
Compromises ability to form new memories
Hippocampus has fewer cells in aging brain
Hippocampus tells hypothalamus to reduce
cortisol
Degenerative cycle set into motion
(Lee, Ogle, & Sapolosky, 2002)
Stress: the bad and the ugly
Increased risk of
Heart disease
Diabetes
Hypertension
Drug abuse
Alcoholism
Depression
Anxiety disorders
National Scientific Council on the Developing Child (2005)
Disabilities
Frequent, sustained stress hard-wires
maladaptive responses
Limbic brain receives permanent insult
from cortisol
Significant adversity early in life damages
the “architecture of the developing brain”
(National Scientific Council on the
Developing Child, 2007)
Stress and the Developing Brain
Toxic Stress can impair
emotional well being
early learning
exploration and curiosity
school readiness
school achievement
National Scientific Council on the Developing Child,
2007
Influences on Stress
Evaluation of the event for threat value
Plan to deal with stress is put into place
Resources to deal with stress are
evaluated
If resources not available or judged
ineffective- helplessness
Presence or absence of supportive
relationships
Hyper-arousal
Hypo-arousal
Pathological or toxic stress occurs:
Perceived lack of control
Experience of negative emotions
Protective Mechanisms
Under conditions of normal stress, children
learn how to cope and manage
Need supportive adults if they are to do
this
Protective Factors
Secure attachment
Good physical health
Strong social network
Responsive environment
Feelings of competence
Clear patterns of arousal and relaxation
Physical exercise
Relaxation opportunities
Temperamental characteristics
Disabilities
May have feelings of incompetence
Learned helplessness
Often perceive stress in more frequent,
intense, and sustained manner (Lovallo, 1997)
Unable to communicate to tell others
about the stressor
Janssen, Schuengel, & Stolk (2002)
Disabilities
Challenging behaviors may be maladaptive
responses to stress
May have difficulty anticipating what is
coming up
May have difficulty with state regulation
Sleep disturbances
Poor physical health
Implications of Physical
Impairments
May not be able to physically reach
needed or desired items
May not be able to physically escape from
perceived threats
May not be able to get physical exercise
Implications of Sensory
Impairments
Sensory impairments limit ability to orient
to changes in stimuli
May feel in a constant state of threat
because they can’t clearly see or hear
what is coming up
Hyper or hypo response
May have difficulty with sleep/wake cycles
Implications of Sensory
Impairments
People and things appear and disappear
with little perceived reason
Threat to contingent learning
Learned helplessness
Stress and Attachment
If early relationships are reliably warm, they can
buffer child from the affects of other stressors
Individuals who have secure relationships have
more controlled stress hormone reaction when
upset or frightened
Presence of sensitive responsive caregiver, can
prevent elevated cortisol levels in toddlers
Stress and Attachment
Many threat to secure attachment between
caregiver and child with severe multiple
disabilities
Time spent in NICU units
Severe health problems
Low arousal levels- not enough time for attachment
to occur
Hyper arousal- unable to cope with too much
interaction
Misunderstood communication cues on both sides
Stress and Intervention
Think about possible health issues first
Feeling ill or being in pain can cause stress
and intensify stressful feelings
Stress Intervention:
Communication
Enhance sensitivity to all communications
Increase opportunities and motivation to
communicate
Integrate conversations throughout the
day
Stress Intervention
Communication
Respond to all communications
Watch carefully for nonsymbolic
communications
Nonsymbolic communications often
provide the emotional context of
communication
Respond to early engagement and
disengagement cues
Stress Intervention:
Learned-helplessness
Avoid the good fairy syndrome
Involve individuals in all phases of activities
Pause, encourage child initiations
Use hand under hand rather than hand over
hand
Provide choices at each activity phase
Make sure individual is do-er not done-er
Give amount of control that a child without
disabilities has
Stress Intervention: Anticipation
Provide multiple ways for the individual to
understand what is going to happen and
when it is over
Use cues
Use consistent routines
Use calendaring or scheduling system
Routines
Repetition of same sequence of events in
the same manner
Enhances anticipation
Stimulates growth of neural pathways
Provides sense of security
Schedule Systems or Calendar
Boxes
Objects or pictures represent activities of the day
Provide children with a visual method to know what is
coming up
Gives child time to assimilate information and prepare
him/her self for what is coming
Provide for order and predictability in the child’s life
Review symbols (and activities) during the day to build
memory and reinforce left to right progression
Stress Intervention
Provide a nurturing, safe environment
Take time to establish relationships
Provide opportunities for relaxation
Provide opportunities for physical exercise
throughout the day
Help to foster secure relationships
between individual and caregiver
Stress Intervention
Provide opportunities for the child to solve
problems
Help child learn cause and effect and
means-end so they can know the can
affect their environment
Provide a responsive, contingent
environment
Questions
Research Study
Cathy Nelson and Robin
Greenfield
Single case, multiple baseline
4 children identified as deafblind or
visually impaired with multiple disabilities
Measures:
Frequency and duration of behaviors
indicating stress
Time to regulation
Salivary Cortisol levels-before, 20 minutes, 40
minutes
Research Study
Interventions
Environmental (Making activity more
meaningful, adding turn-taking, choice,
conversation, responding to communications,
providing time to explore)
Anticipatory (touch cues, object cues,
calendar systems)
Calming (slow rhythmic voice, stroking arm,
massage)
Research results child 1
Activity One: Frequency behaviors from 21
per 1 minute interval to zero. Duration
behaviors went from 37% of each 1
minute interval to 0%.Time to regulation
went from 17 minute to zero.
Activity Two: Frequency behaviors: 5
behaviors per minute to zero. Duration
behaviors: 42% to 1%. Time to
regulation: 14 minutes to 49 seconds
Research Results
Child 1
Activity Three: Frequency behaviors: 7 to
0 per minute; Duration behaviors: 71% to
5 % of each one minute interval. Time to
regulation: 47 to 3 minutes.
References
Cassidy, J. (1999). The nature of the child’s ties. In: Handbook of Attachment Teory, Research and Clinical
Applications (J. Cassidy & P.R. Shaver, Eds). Pp. 3-21. Guilford, New York, NY.
Excessive stress disrupts the architecture of the developing brain (2005). National Scientific Council on the
Developing Child, Working Paper No. 3. Retrieved 1/28/09 from http://www.developing child.net/reports.shtml.
Janssen, C.G.C., Schuengel, C. & Stolk, J. (2002). Understanding challenging behaviour in people with severe and
profound intellectual disability: a stress-attachment model. Journal of Intellectual Disability Research. 46: 445-453
Lee, A.L., Ogle, W.O., & Sapolsky, R.M. (2002). Stress and depression: Possible link to neuron death in the
hippocampus. Bipolar Disorders, 4; 117-128.
Lovallo, W.R. (1997). Stress and Health Biological and Psychological Interactions. Sage Publications, London
Mental health problem in early childhood can impair leaning and behavior for life (2007). National Scientific
Council on the Developing Child. Working Paper No. 6. Retrieved 1/28/09 from
http://www.developingchild.net/pubs/wp/Mental_Health%20Problems_Early%20Childhood.pdf
Pottie, G. & Ingram, K.M. (2008) Daily stress, coping, and well-being in parents of children with autism: A
multillevel modeling approach. Journal of Family Psychology, 22: 855-864.
Psychological and
developmental
characteristics of children
with Usher Syndrom
Jesper Dammeyer and
Bente Ramsing Özgür
Dbi conference, Brazil 2011
A danish comparing survey on
children with Usher Syndrom and
children with Charge Syndrom
on
the interaction of language, motor
and psychosocial development
difficulties
Today’s focus is on Usher syndrom
Three types of Usher Syndrom:
Type1:
Severe to profound deaf, Retinitis Pigmentosa and
vestibular difficulties
Type 2:
Hearing impairment, Retinitis Pigmentosa
Type 3:
Hearing impairment, Retinitis Pigmentosa, often
vestibular difficulties – late manifestation
Background
We
had experienced that many
children with Usher syndrom often
were assessed for mental and
behavioral disorders
They
often get diagnoses as autism,
mental retardation, psychosis ect
We wanted to investigate WHY?
Hypothesis
That many children with Usher Syndrom
type 1 suffers from early difficulties of
sensory intergration and late motor
developement
Dammeyer (submitted)
Significant
interactions between
deafblindness, motor development
and mental retardation was found.
Explanations from other surveys
Two
major explanations for a higher
incidence of mental and behavioral
difficulties among children and adults
with Usher syndrome can be stated:
Explanations…………
1)
Some argue that the progressive
loss of vision results in severe stress
and symptoms of mental and
behavioral disorder.
2) Some genes are predisposed to
both Usher syndrome and for
example schizophrenia.
Explanations……..
Given
the combination and number
of disabilities (hearing, vision and
balance), children with Usher
syndrome may face more barriers to
language, social and cognitive
development
Conclusion of the study:
A treatment of children with Usher
(and CHARGE) syndrom is first of all
a matter of compensation for the
dual sensory loss, communication
development and sensory integration
difficulties
Intervention
Even though vision impairment first
manifests in late childhood, some children
with Usher syndrome develop mental and
behavioral disorders during childhood.
Children with Usher syndrome and their
parents need clinical support during early
childhood to prevent development of
mental and behavioral disorders.
The child with Usher syndrom
0 – 7 years
Focus on sensory intergration
The child takes more time to understand the
interaction in between vision, hearing, balance
and movements
Professionals and parents have to patiently
support a normal, but slow development
Experts on Usher Syndrom have to support focus
on sensory intergration and development
Case 1
Girl with CI
0-9 month: Observing from lying position
9 month: Sitting position
3 years: standing, walking
2-5 years: Language delay
5-7 years: Develope now language faster that normal
children and has almost adequate spoken language
and good body control
Balance
It
is not a question to keep the
balance, but continuously re-ajust it.
Balance
needs concentration,
bodycontrol, vision, hearing,
vestibular system and cognition
Integration of the senses means:
To power-up the body and integrate the headcontrol with
the vision.
To integrate vision and hearing (if hearing aid or CI)
To integrate vision, hearing and bodymovements
To understand the vestibular difficulties with
bodymovements and integrate it with vision/hearing
To continuously adjust the senses with the bodymovements
To keep the body strong and fit for compensation of
sensory integration difficulties
The children with Usher Syndrom
7-14 years
7-10 years:
Most of the children have good and stable development
Many of the children estimate those years to be the best years
of childhood
10-12 years:
Manifestation of vision impairment – the child faces social
difficulties
The child starts to understand the barriers of her handicap
Parents and professionals must have focus on motor developement
and self-esteem
Case story 2
Boy 14 years
6 years: Is diagnosed with Usher Syndrom and starts in mainstream school
8 years: Moves to special school (social difficulties)
10 years: Withdraw from the local soccerteam
11 years: Becomes more aggressive in the school and at home
12 years: Starts to become aware of his difficulties and gets depressions
13 years: Severe behavioural difficulties
14 years: Is submitted to psychiatric assessment (no autism and no ADHD)
14 years: Focus on the dual sensory loss, energy loss, stress and high expectations
Youngsters with Usher Syndrom
14-18 years
Awareness about the handicap and the
personality
Networks with other youngsters with
deafblindness
Focus on the posibilities and the barriers
Focus on independance and adult life
Case story 3
Young man, 17 years (Estonia)
When I met him he knew he had Usher
syndrom, but nothing about it.
One year later he knew more about his
needs for support and for more time to
learn.
He starts to take action on his own life.
Early intervention for children with
Usher syndrom tp 1
Parents need support to explain the
syndrom to the surroundings and to
understand their child as a child with
Usher syndrome
Professionals need support to understand
the difference between normal
development, malfunctional development
and the development of a child with Usher
syndrome
Children with Usher syndrome
need:
Time and support to integrate their body with their senses
To know about the consequences of the syndrom as early
as possible
To meet other children with Usher Syndrom
To have support from professionals who know about the
syndrom and keep the focus on the syndrom/deafblindness
To get support to minimize stress
To get support to build up self-esteem
Youngsters with Usher syndrom
need:
To understand the syndrom
To understand the problem of sensory integration (body
movements/balance, hearing and vision)
To know their limits in activities and to cope with stress
To keep the body fit and strong
To keep a good self-esteem
To understand the sudden energy loss
Keep focus on sensory intergration
to understand the number of
difficulties many individuals with
Usher syndrom faces
THIS FOCUS IS NEEDED
THOUGHOUT LIFE
Creating opportunities for a deafblind
elderly person who had no chances in
his life
Anne Schoone
September 2011 Monique Snelting
Royal Dutch Kentalis
Presentation summary
Diagnostic Centre: Team Deafblind
Case study:
• Diagnostic process
• Recommendations
• Follow-up
• Pointers for future assessment
30-9- 2010
2
Diagnostic Centre
Team Deafblind:
• Ophthalmologist
• Orthoptist
• Audiologist
• Speech and language
therapists
• Psychologists
• Physician
• Team secretary
30-9- 2010
3
Diagnostic cycle
Registration
Advice
Integration
30-9- 2010
Strategy
Assessment
4
Benefits of a diagnostic centre
• Multiple disciplines
• Expertise on diagnostics
• More possibilities to assess in different settings
• More time and tools
• Independency
5
Casus
Reasons for registration:
-
Elderly person
Completely deaf and blind
Deteriorate rapidly
Which residential form would best suit?
Guarantee quality of life
6
Background information
• Unknown cause of the limitations
• Severe auditory limitations
• Severe visual limitations
• No use or understanding any form of language
• Challenging behaviour
• Intellectual disabilities
• Residential care
7
Assessment questions
• Sensory functioning
• Level of cognitive, communicative, social-affective and
adaptive functioning
• Physical and medical aspects
• Recommendations given the deafblindness
• Recommendations with regards to
residential care
8
Strategy phase
• Strategy for assessment
• Discussed by the multidisciplinairy team
Deafblind
Assessment would be conducted by two
psychologist, a speech and language therapist, an
audiologist and the intramural physician
9
Diagnostic process
• File analysis
• Video observations
• Interviews
• Assessments with the client
10
Interviews and questionnaires
• Interview about the case history
• Vineland Adaptive Behavior Scales (VABS) (Sara S. Sparrow,
David A. Bella, Dominic V. Cocchetti, 1935-1965)
• Screening list depression (J. Roeden, 1989)
• Communicative Function questionnaire
11
Assessments with the client
• Audiological and medical assessment
• Communicative and psychological assessments
- Observations
- Hands on assessment
• Regular meetings between the different disciplines
involved
12
Findings
Case History and Discussions:
• No medical examination conducted with regard to the
cause of the disabilities
• Stays in residential care from puberty
• Familiar with TBC
• Psychiatric treatment
13
Developmental profile
• Level of functioning in the past unknown
• Developmental disadvantage has increased over time
14
Developmental profile (2)
Present level of skills:
•
Similar to that of a very young child
•
Personal skills and motor skills are the most strongly developed
•
Cognitive functioning
•
Socialisation and his communicative ability is the least well
developed
15
Mobility:
• Good ability for orientation
• Takes not much initiative
• Sighted guided technique introduced
16
Communication and interaction:
•
•
•
•
•
•
•
Open for initiatives and contact
Used to instrumental contact
Possible to build up reciprocal contact
Recognition
Development of contact
Communicative abilities all non-language based
Minimal developed communicative abilities
17
Regulation signals:
• Different ways to regulate stimuli and tension
• Withdrawal
• Rubbing face or body parts
• Signs of frustration
18
Depression and medical problems
• Depression hypothesis:
• Differences in evaluation
• Neither confirmed or rejected
• Follow up screening important
• Medical assessments:
• No abnormalities found
19
Recommendations
Benefit from a deafblind specific approach
• Adaptations to residential home
• Tactile approach
• Active involvement in daily activities
• Create interaction
• Use of video analyses
20
Follow up
• Looking for a new form of residence
• Specialised coaching from a casemanager from
Kentalis
• Put the recommendations into practice
After the diagnostic process, people involved
see new opportunities to improve the quality
of the clients life!
21
Pointers for future assessment
• Use a multidisciplinary assessment team
• Use of other than the standardized tests
• Conduct tests in familiar surroundings as well as in a
new setting
• Establish contact and develop it further
• Make your assessment ‘Hands on’
22
Thank you for your attention
For further information:
Anne Schoone
[email protected]
www.kentalis.com
Monique Snelting
[email protected]
Creating opportunities for a deafblind
elderly person who had no chances in
his life
Anne Schoone
September 2011 Monique Snelting
Presentation summary
Diagnostic Centre: Team Deafblind
Case study:
• Diagnostic process
• Recommendations
• Follow-up
• Pointers for future assessment
30-9- 2010
2
Diagnostic Centre
Team Deafblind:
• Ophthalmologist
• Orthoptist
• Audiologist
• Speech and language
therapists
• Psychologists
• Physician
• Team secretary
30-9- 2010
3
Diagnostic cycle
Registration
Advice
Integration
30-9- 2010
Strategy
Assessment
4
Benefits of a diagnostic centre
• Multiple disciplines
• Expertise on diagnostics
• More possibilities to assess in different settings
• More time and tools
• Independency
5
Casus mr. Lem
Reasons for registration:
-
Man, 71 years old
Completely deaf and blind
Deteriorate rapidly
Which residential form would best suit?
Guarantee his quality of life
Video fragment
6
Background information
• Unknown cause of his limitations
• Severe auditory limitations
• Severe visual limitations
• No use or understanding any form of language
• Challenging behaviour
• Intellectual disabilities
• Residential care
7
Assessment questions
• Sensory functioning
• Level of cognitive, communicative, social-affective and
adaptive functioning
• Physical and medical aspects
• Recommendations given his deafblindness
• Recommendations with regards to
residential care
8
Strategy phase
• Strategy for assessment
• Discussed by the multidisciplinairy team
Deafblind
Assessment would be conducted by two
psychologist, a speech and language therapist, an
audiologist and the intramural physician
9
Diagnostic process
• File analysis
• Video observations
• Interviews
• Assessments with mr. Lem
10
Interviews and questionnaires
• Interview about his case history
• Vineland Adaptive Behavior Scales (VABS) (Sara S. Sparrow,
David A. Bella, Dominic V. Cocchetti, 1935-1965)
• Screening list depression (J. Roeden, 1989)
• Communicative Function questionnaire
11
Assessments with mr. Lem
• Audiological and medical assessment
• Communicative and psychological assessments
- Observations
- Hands on assessment
Video fragments
• Regular meetings between the different disciplines
involved
12
Findings
Case History and Discussions:
• No medical examination conducted with regard to the
cause of mr. Lem disabilities
• From when he was 15, he was in residential care
• Familiar with TBC
• Psychiatric treatment
13
Developmental profile
• Level of functioning in the past
• Developmental disadvantage has increased over time
14
Present level of skills:
•
Similar to that of a very young child
•
Personal skills and motor skills are the most strongly developed
•
Cognitive functioning
•
Socialisation and his communicative ability is the least well
developed
15
Mobility:
• Good ability for orientation
• Not much initiative
• Sighted guided technique
16
Communication and interaction:
•
•
•
•
Open for initiatives and contact
Used to instrumental contact
Possible to build up reciprocal contact
Recognition
Video fragment
•
•
•
Development of contact
Communicative abilities all non-language based
Minimal developed communicative abilities
17
Regulation signals:
• Different ways to regulate stimuli and tension
• Withdrawal
• Rubbing his face
• Signs of frustration
18
Depression and medical problems
• Depression hypothesis:
• Differences in evaluation
• Neither confirmed or rejected
• Follow up screening important
• Medical assessments:
• No abnormalities found
19
Recommendations
Benefit from a deafblind specific approach
• Adaptations to residential home
• Tactile approach
• Active involvement in daily activities
• Create interaction
• Use of video analyses
20
Follow up
• Looking for a new form of residence
• Specialised coaching from a casemanager from
Kentalis
• Put the recommendations into practice
After the diagnostic process, people involved
see new opportunities to improve the quality
of mr. Lem his life!
21
Pointers for future assessment
• Use a multidisciplinary assessment team
• Use of other than the standardized tests
• Conduct tests in familiar surroundings as well as in a
new setting
• Establish contact and develop it further
• Make your assessment ‘Hands on’
22
Anne Schoone
[email protected]
www.kentalis.com
Monique Snelting
[email protected]
Scaffolding Heroes
A dialogical perspective on the developmental potential of 3 students of the
Rafaël School for deafblind children and young adults
30 september 2011 Odette Haubrich
The presentation
1. Introduction
2. Developmental theory, dialogical theory
3. Methodology
4. Results and discussion
5. Questions
Kentalis, an introduction
Kentalis:
A national organization
in the Netherlands
Kentalis; to provide clients acces to;
- Information
- Interaction and communication
- Orientation and mobility
Kentalis Rafaël
• Kentalis Rafaël; for students with a severe auditory and visual
impairment.
• 42 students with many different diagnoses
• Individual Educational Plans, but one main mission:
For every student we want a development as
optimal as possible to increase their feeling of
competence and autonomy and to give them
acces to a social life
Mission Kentalis Rafaël
(….) The educational environment will contribute to the
development of a positive and realistic self image, it
will stimulate the social development and the
interaction with the world surrounding the child.(..)
Mission Rafaël School, school guide 2009-2010, p. 5
Introduction
• In the sixties (Jan van Dijk)
- Attachment theory
- Deprivation theory
- Social learning theory
• Developments in cooperation with the Nordic countries, e.g.
development of the booklets
• OGO = Developmental education; Based on the principles
from developmental psychologist Lev Vygotsky
• Latest developments; Dialogicality as “Starting Point”
Main research question
How can it be possible to develop a
better understanding of the growth of a
positive and confident self image of
congenitally deafblind children in accord
dialogical and developmental theories?
Developmental Education
Learning according to Vygotsky;
Development is the consequence of the relation
between an active child and an active environment
(Vygotsky, 1978, p.86)
Zone of Proximal Development (ZPD)
The zone of proximal development
The inner circle
What a child can
do without help
The outer rim
What a child can do
with maximum help
The inner area
The zone of proximal
development
Developmental theory
Scaffolding
= The scaffold that
allows the child to
continue to build
new competencies
Dialogicality
Per Linell:
The term dialogicality refers to one of the
essences of the human condition, namely
that our being in the world is thoroughly
interdependent with the existence of others
(Linell, 2007, p. 13)
17 november 2011
Dialogicality
What does this mean for development and education?
Development from a dialogical
perspective
“Learning” According to Ivana Markova:
“I can only be aware of who I am and
who I can become,if I can recognise
myself in others, through others and
with the help of others”
ZPD, field of tension between an actual and a possible ‘self’
The Hero
“ resilient
self is a self that can cope with barriers,
opposition and resistance”
(Nafstad 2010, p.2)
Sense of coherence (Antonovsky, 1990)
Comprehensibility (can I understand it?)
Manageability (is it within my control?)
Meaningfulness (Is it worth it?)
Possible selves.. I positions
To be able, in relation to your teacher, to take the position
of one who:
Can make sense of what is happening
(Comprehensible)
Feels confident in handling new situations
(Manageable)
Feels proud of what he has achieved
(Meaningful)
How
1.
3 students, 3 teachers
•
•
2.
6 videorecordings (2 of each student)
•
•
3.
A recording in which a learning experience is central
Recording of approximately 4 minutes
Analysis of the video recordings several levels
•
•
•
•
4.
Different levels
Different ages
Transcriptions
Communicative projects
Positions
Sense of Coherence
4 focusgroup meetings with the teachers to discuss the analysis
•
•
How do we see the zone of proximal development
How to scaffold the potential
Step 1: Transcriptions
Clip 1
Ali en Damie, Big and Small
Step 1: Transcriptions
1.56
D.
2.00
D.
BEAUTIFUL
That one is beautiful!!
2.05
D+A
A.
2.20
D.
D+A
Spoken language
SQUARE.. TOUCHING pointing gesture towards the
touchboard
A.
Tactile sign language
Bodylanguage/signals (Tactile)
Yes, the touchboard is there
Makes a movement with his arm towards the
touchboard
Movement, signals, bodylanguage
Big smile
Emotional expression
Feel the touchboard with A’s right hand on D’s left
hand
Feels the board with his left hand
Big smile
COME, let’s go this way
Combination of speech and signs
Feel the other side of the touchboard together
Step 2: Communicative projects
“A communicative project is a
comprehensive unit of meaningful
action, collectively accomplished
(van Rooy, 2009, p.31)”
Clip 2
Marieke and Robin, prickling bodyfoam
Step 2: communicative project
TRANSCRIPT:
2.59
R. Lifts up his right leg and puts it on M.’s lap, with his right hand
reaches for something
M. Picks up the bodyfoam from the floor and puts the cap on it
Yes?
Surprised
3.01
R. Stretches his right leg, holds the bottle
M. Holds the bottle, touches Robin’s hand
One more time?
COMMUNICATIVE PROJECT:
“Robin puts his right leg back on Marieke´s lap again, asking
for his socks. M. “over interprets” that he asks for more
foam and sprays more foam on his leg and invites him to
feel that with his hands, which he refuses.”
6-spacer: From transcription to
description
Base space
De dialogue
between
Marieke & Robin
After the brushing
scenario the sock
scenario starts
presentation
Memory space
Leg on lap
Socks on
Confirmation of
structure and
therefore security
and safety
reference
Leg-on-lap-socks
Meaning
relevance
Blend
I want my lap-on-leg socks
to be put on by you
Step 3: Positions
Clip 3
Kim and Tieme, unpacking the bag
Step 3: Positions
Communicative Project
I-Positions
T. guides K’s. hand towards the
juiceboxes on the table. K. takes them
and proposes to put the juice boxes
away together. T. does not go along
with K. ’s plan. He remains seated as K.
stands up and invites him several times
to come and put the juice boxes away.
When K. returns from having put them
away on her own, he hands her other
things to put away too, which she does
T.: One who is looking for safety
and control as he does not trust
K. with her new proposal
K.: One who introduces
something new and feels not
trusted by T. because of that
T.: One who shows his agency
and resilience by remaining
seated
K.: One who recognizes and
respects T.’s position as a
strong agent
T.: One who regains his
confidence and pleasure in
recognizing a new script
Overview of the analysis
Summary of the project
I positions of T. in relation to K. and vice versa
SOC
Time
K. keeps the bag opened and by doing so,
enables T. to take things out of it, which he
does quickly and with a smile
T.: One who knows what is expected of him
T.: One who feels confident in how to do what he does
T.: One who enjoys himself
K.: One who admires and enjoys this confident one
COM +
MAN +
MEA +
0.00
T. finds the hearing aids in his bag and after he
initially takes them out, he decides to put them
back into the bag, smiling.
He continues unpacking and when he finds the
hearing aids again, he puts them back and closes
the backpack firmly. Kim then opens the bag and
takes them out.
T. accepts that and unpacks everything else that
is in the bag with a more serious look.
T.: One who enjoys himself
T.: One who feels in control over what he does
K.: One who admires and enjoys this confident controller
K.: One who disagrees with T.’s ideas and overrules
T.: One who accepts he’s being overruled, but enjoys himself less
because of it
MEA +
MAN+
MEA -
0.24
1.10
T. moves the box with hearing aids towards Kim.
They work together in a familiar ritual as they
take the hearing aids out of the box and put
them in T.’s ears.
T.: One who knows the script and surrenders and complies to what
is inevitably going to happen even though he does not like it
K.: One who recognizes T.’s position and takes a leading position
towards T.
COM +
MAN +
MEA -
1.23
T. pulls Kim’s hand towards his chair. K. pulls
the chair back towards the table
T.: One who regains control by taking a new initiative
K.: One who follows
MAN +
2.31
T. guides K’s. hand towards the juiceboxes on
the table. K. takes them and proposes to put
them away together. K. proposes to put the juice
boxes away together. T. does not go along with
K. ’s plan. He remains seated as K. stands up
and invites him several times to come and put
the juice boxes away. When K. returns from
having put them away on her own, he hands her
other things to put away too, which she does
T.: One who is looking for safety and control as he does not trust K.
with her new proposal
K.: One who introduces something new and feels not trusted by T.
because of that
T.: One who shows his agency and resilience by remaining seated
K.: One who recognizes and respects T.’s position as a strong agent
T.: One who regains his confidence and pleasure in recognizing a
new script
COM -
2.43
MAN+
COM+
MEA +
3.05
3.49
4.09
When T. hands K. the notebook, K. sits down
with it to read what is in there. T. tries to close
the notebook while she is still reading it
T.: One who wants to convince K. of his ideas
K.: One who feels her own plan is more important than T.´s plan
MAN+
4.21
Results and challenges
- Emphasis on the significance of elements that
may have been overlooked in the past in
education
- Connection between emotional and cognition in
learning
• Relationships can be vulnerable
• Objective measurement tools
- Context
Heroes
One can only
become a hero,
when one is
regarded in that way
by the people
surrounding him
Clip 4
Marieke and Robin
Clip 5
Kim and Tieme
Odette Haubrich
[email protected]
www.kentalis.com
The 15th Deafblind International World Conference
26. Sep.- 1. Oct. 2011. Sao Paulo, Brazil
Deafblindness, Alström Syndrome
-Early Diagnosis and Early
Intervention
Berit Rönnåsen
Claes Möller
Kerstin Möller
Björn Lyxell
Purposes
1. To give an overview of Alström Syndrome,
communication and deafblindness
2. To present a case study that illustrates
the importance of early diagnosis and early
intervention
CH Alström 1959
1907-1993
three children
atypical pigmentary degeneration
obesity
diabetes
sensorineural deafness
normal intelligence
Alström syndrome
ear
eye
infections
heart
kidneys
liver
skin
lungs
metabolism
-diabetes
-obesity
-cholesterol
-etc.
Alström syndrome
0 år
10 y
Symptoms
Eye
Ear
Balance
Heart
Lipids
Diabetes
Kidney
Liver
Teeth
Obesity
Pancreas
20 y
30 y
40 y
Our observations
delayed / deviation:
development of mentalisation
mobility
tactile senses
other:
no severe mental retardation
numerous infections during childhood
asthmalike episodes
seizures
Alström syndrome
genetics
autosomal recessive
chromosome 2p
gene ALMS 1
more than 700 affected
52 countries
Jackson laboratories
mouse model
Case-study
Hugo
Hugo
born w 38 + 5 days
2.885 kg
child 3 of 3
parents and siblings healthy
Case-study
0-1 year
12.660 kg +2SD
Parental concern
Professional concern
stomach hurts
blood in faeces
infant formula 5/night
dry skin
breathing problems
strange eye movements
ear infections
deaf
colic, foodstuffs intolerance
gastrointestinal reflux
overweight/ metabolism
allergy
asthma
nystagmus
otitis media
bilateral tubes
Case-study
2-3 year
Parental concern
appetite
heavy breathing
sensitive to light
sensitive to noise
dry skin
da,da – talking
autism
preschool
assistance
23,3 kg +4SD
Professional concern
obesity/ metabolism
pneumonia
RP, DNA-tests
otitis media
eczema
delayed speech
development
autism
Case-study
3-5 year
26,6 kg
Parental concern
Intervention/diagnosis
deafblind
blue lips and nails
legs hurts
hip hurts
seizures
general delayed
development
Alström Syndrome
coordinated controls and tests
coordination clinics/ networks
Coordination-Intervention
Medical
Psychological
Pedagogic
F [Hz]
125
0
250
1k
500
2k
4k
6k
8k
6k
8k
F [Hz]
125
0
10
10
250
500
1k
2k
4k
20
Hearing level [dB HL]
20
30
40
50
30
40
80
50
60
70
90
100
110
6 år
6 år
60
70
3 år
3 år
80
90
120
100
110
120
F [Hz]
125
250
50
1
4k 6k
2k
0
125
250
500
1k
2k
4k
6k
8k
8k
F [Hz]
10
0
10
20
20
40
50
60
70
80
90
100
110
120
30
30
3 år
40
6 år
50
60
70
80
90
100
110
120
3 år
6 år
Conclusions
0-5 years
no diagnosis
many symptoms
confusion
sick baby
parents tired
anxiety
many hospital visits
diagnosis at last ( 3 years old)
early diagnosis in a historic perspective !!!
Alström syndrome
affects
information
communication
social interaction
relations
continuity in daily living
self-esteem
identity
Alström syndrome
parenthood
crisis; why, where and how
parent
negotiator
own profession
generalist
volunteer
nurse
researcher
detective
Alström syndrome
parenthood
crisis; why, where and how
lawyer
coordinator
administrator
economist
educator of the professionals
Alström syndrome
dialogue professionals - parents/child
Medical
research
knowledge
many organs
clinical collaboration
medical record
Counselling
information
supervision
individual planning
– speech
– sign language ?
– tactile signs ?
– braille !
– mobility !
life long support!
Alström syndrome
conclusions and future challenges
importance of early and correct diagnosis
prognosis
cooperation
treatment
cure?
Thank you!
[email protected]
[email protected]
Assessing cognition in persons with
congenital deafblindness
Freud
Science in support of art
The Artillery metaphor
Cognition in interaction
Interpretations of ambigous expressions
Cognitive observation categories
Dynamic assessment of
Jude Nicholas
Vestlandet RC
Haukeland Sykehus
Norway
Hans Erik Frölander
RC dövblind SPSM
SIDR - HEAD
Örebro University
Sweden
Sao Paulo 2011
Participants
• Ca 20 professionals
• Psychologists and
Advicers in education
• Clinicians and
Researchers
• From the Nordic
contries, Holland and
Switzerland
Aim
• Increase professional competence to
understand, observe, describe and assess
cognitive ability in deafblindness
In
• Developing a bio-psycho-social model of
cognition in deafblindness
• Formulating assessment guidelines
• Adapt methods, Develop new methods
Deafblindness
Profound dual sensory loss
Congenital
Prelingual
Use of tactile modality
Difficulties assessing cognition
in deafblindness
• It´s not meassuring lenghts …
• embodied
• Inaccesible
• Ambiguous
Prerecuisits
• Define cognitive abilities needed to solve a
task
• Define criteria for failure and success.
• Make sure there is an intention to perform
the tasks
We have to believe in cognition!
Cognition
Knowledge, reason
• NEUROCOGNITION
Attention
Memory
Executive functioning
• COGNITIVE SEMIOTICS
Representation and organization
• COMMUNICATION THEORY
Protolanguage – Language in context
Mind
• Soul, Psyke
Subjective, Intersubjective, Cultural
Other´s expectations >I believe I can > I can
Theory-of-Mind
• Our knowledge about cognition/mind in
deafblindness is sparse
• A small heterogenous population
• Case studies
• Prototypes
Neurological involvement
• Persons with congenital deafblindness
often neurologically involved
• Some exhibit challenging behavior
• >20% of persons with severe intellectual
disability meet diagnostic classification for
being deafblind
• The field of deafblindness becoming
aware of the relationship to Autismspectrum disorders
Van Dijk & Nelson 2009
Consequences of deafblindness
•
•
•
•
•
•
•
Attachement problems
Traumatic lifeexperiences
Restricted availability to the surrounding
Few attractors
Few reference points
Difficulties to manipulate
Partial cultural exclusion
Embodied cognition
• Reduced sensory input
• Less experience
• Less assistance from conceptual
categories
• Unsufficient offloading of Workingmemory
• Less opportunities to communicate
Kathleen Deasy & Fiona Lyddy 2006
Restricted functioning in distance senses
diminish the possibility to use cognitive
abilities
Cognitive diability diminish the possibility
to use residual hearing and vision
Specific reasons for assessing
in relation to deafblindness
• To point out cognitive potential
• To find out neccessary adaptions to
realize individual potential in daily life
• To guarantee that deafblindness is taken
in account in diagnosing developmental
disorders
Diagnoses and there
consequences
• Mental retardation
• Autismspektrum
• Deafblindness?
Different guidelines
A brick in the wall
Specific areas of cognition to
assess in relation to deafblindness
• Skewdness of developmental profile
• Tactile perception, cognition and
interaction in dialogue
Tactile bodily cognition
• The tactile sense gives a rich an varied
information about the enwironment
• Our most social sense
• Can be used in combination with residual
hearing and seing
Tactile cognitions
• The tactile demands the deafblind meet in
his/her environment is the startingpoint of
an assessment – the fundamental
cognitive capacity of the ”deafblind brain”
Purpose of the assessment
• Assessing the cognitive processes of
working memory in an interactional
perspective
The neuroscientific
understanding of tactile
cognition
• The foundational assumption of this
approach is to view the human central
nervous system as an information
processor, that encodes, stores and
manipulates various types of symbolic
representations, through the tactile
modality.
What is working memory?
• Working memory is a critical component of
cognitive architecture and plays a major
role in reasoning, problem solving and
language.
• Tactile working memory is a cognitive
process that enables us to keep the
relevant tactile information active for task
performance over a short period of time
Tactile working memory in the
congenital deafblind
To study the deafblind person`s ability to keep
the relevant tactile information active for over
a short period of time
This approach not only requires real timefeedback from the attention level but also the
assessing of knowledge from the long-term
memory
Assessment of tactile working
memory
• Looking for the behavioural cues of tactile
working memory processes in the
interaction
• Behavioural Obsevation
(through video sequences)
• Using appropriate rating scales in trying
to capture the underlying cognitive
processes during the interaction
• Analyzing & interpretation of the findings
Rating scale : an example
(research in progress)
Working Memory ;
• Able to hold tactile information “on-line” for the purpose of completing a task
during familiar or unfamiliar tasks
• Mastered
• Partially mastered
• Not mastered
• Comments
• Able to active hold the tactile information to guide behaviour in the absence
of external cues (prompts) with a partner with good communication
competency during familiar tasks
• Able to active hold the tactile information to guide behaviour in the absence
of external cues (prompts) with a partner with good communication
competency during unfamiliar (novel) tasks with a partner with a partner
Specific procedures of assessment
in relation to deafblindness
• The bodily-tactile modality is the main
modality om which to perform assessment
of cognition in relation to deafblindness
• Optimasation of the interaction/dialogue
• Videoanalyses is a prerequisite for
assessment
Guidelines for Assessment of Cognition
in Relation to Congenital deafblindness
Standard guidelines
Standardguidelines
Needed to adress
Guidelines in relation
To deafblindness
Phenomenological approach
EXPLAIN
UNDERSTAND
DESCRIBE
ASSESS
The mid wife method
• Dynamic assessment
• Involve relatives and staff
• The socratic method
The competent observer
• Clinical experience
• Theoretical rootedness
• Value system
A springboard not a straitjacket
An expert in deafblindness aware of
guidelines in assesing
• Dynamic assessment of Cognition in
interaction in deafblindness
The competent partner
• Various partners create different
conditions
• Performance depends on
partnercompetence and relation to the
person with deafblindness
• Different pictures emerges
Emergence of attention directing
referential communication
• Picking up, showing, and sharing newly
discovered objects
• Bulding up attention- directing transactions
• Reciprocicallity
• Relating to events outside reach
• Engagement in referential communication
• Semantic learning; creation of experiencebased and shared meaningful holistic units
– symbolic expressions
Cognitive manifestations in
shared attention
• theory of mind
• Schematic ability
• comprehension of reality
Development of higher mental
functions
Early established mental functions; reactive, spontanous,
based on sensations, reactive attention, spontanous
memory sensorimotor intelligence
Development of communication and mental
representations
Higher mental functions; mediated by instruments,
mediated perception, controlled attention, focused
memory, logic intelligens
Functional scales to cover
variation of normality
The form might differ but the content are
often the same
Larsen
The devolopmental profile as
baseline assessment
Social cognition
• Imitation
• Manipulation
• Theory of mind
Reasoning & Knowledge
•
•
•
•
•
•
•
•
Need of variation
Flexibility
Object use
Classification
Intentionality
Planning
Problemsolving
Humour
How about the next step in development –
the proximal zone
• Standardguidelines combined with
deafblindspecific aspects – the tactile
modality
• Dynamic assessment, involving relatives
and staff
• Interventions - optimazation
• Cues – scales
• Systemacy
• Transparency
• A problemsolving attitude towards
hindrances
• Supportive functions
• A focus on becoming
• A more competent child
Network members
•
•
•
•
•
•
•
•
•
•
Johan Granli, psychologist
Jude Nicholas special
neuropsychologist , Psy.D
Jesper Dammeyer special
psychologist ,PhD
Berit Rönnåsen adviser education,
PhD student
Vivi Andersen, psychologist,
Centre leader
Henriette Erlich, MSc education
Eva Keller, adviser education
Saskia Damen, psychologist, PhD
student
Emma Tuominen,psychologist
Dorrit Rosencrantz, special clinical
psychologist
•
•
•
•
•
•
•
•
Eglé Öhman, psychologist
Henrik Okbol, special
neurospychologist
Flemming A Larsen, MSc
semiotics, PhD student
Hans Erik Frölander, psychologist,
PhD student
Cecilia Henricson, psychologist,
PhD student
Karin Juul, psychologist
Annika Johannesen, adviser
education
Anne Naffstad, special
psychologist, PhD student
[email protected]
[email protected]
•
•
•
•
•
Assessment procedure guidelines
The use of tools
Non-verbal assessment
Cultural an social context
Risks when assessing – misstakes you
want to avoid
Learning
Implicit memory, habits and or conditioned
responses that might established even
before birth
Explicit memory, depending on cortical
maturation and conscious learning
Prospective memory
J.Nicholas
Utvecklingsprofilen
Executive functioning scale
Tactile working memory
scale
PEP-R, Leiter, MIR
Dynamic Assessments
• Tests for the normal -, deaf or blind - population rarely relevant
• Interdisciplinary work, phenomenological approach
• Knowledge about tactile bodily cognition
• Neruropsychological methods applied in an interactive frame
• Analyses of observations, the best possible interactions choosen
• Paraphrasing cues
• Development of functional scales
• Intervention - focus
Concepts of tactile cognition
•
•
•
•
•
•
Tactile attention
Tactile info. processing speed
Tactile short term memory
Tactile working memory
Tactile learning
Tactile memory
• Tactile semantic knowledge and tactile
language
Is there evidence for a tactile working
memory?
• Tactile working memory (WM) refers to the
ability to hold and manipulate tactile information
for short periods (transformation of information
while in short-term memory storage).
• WM allows us to hold the tactile stimulus
characteristics on-line to guide behaviour in the
absence of external cues or prompts.
• Without active WM, initial tactual percepts may
decay quickly.
The processing speed for tactile object recognition is
dependent on haptic exploration, haptic ”search”
/”glance” and tactile experience
• The deafblind can recognize an object by
feeling a portion of it, which then acts as a
signal for the whole image; a brief touch of
the object would be enough to prompt full
recognition
Concepts of tactile cognition
Tactile attention allows us to select particular elements of tactile
sensory input for more detailed cognition
Tactile mental (info. processing) speed reflects how efficiently
the attention system is functioning. Reduced mental speed is
often caused by attention problems.
Tactile short-term memory can be described as the capacity for
holding a small amount of tactile information in mind in an
active, readily available state.
Tactile working memory refers to the ability to hold and
manipulate tactile information for short periods and to update
the information as required by moment-to-moment demands.
Tactile learning is the process of acquiring new information
through tactile exploration
Tactile memory (long-term memory) refers to the persistence of
learning in a state that can be revealed at a later time
Tactile language refers to the acquisition of language through the
tactile modality
The Cognitive and Neural Correlates of Tactile Memory
Alberto Gallace (University of Milan–Bicocca) & Charles
Spence (2009)
Tactile processing continuum: Bidirectional connections
(bottom- up/ top-down processing)
Tactile
cognition
• Prefrontal cortex
• Rostral inferior parietal lobule
Tactile
perception
• Secondary somatosensory
cortex (SII)
• Primary somatosensory cortex
(SI)
Tactile
sensation
• Basic somatosensory
pathways
The ability to mental rotate and tactile
(spatial) WM
• Visual mental rotation
• Mental rotation of the
tactile layouts seems to
be related to certain
aspects of the tactile
working memory
(Ungar et al. 1995)
Ivana Macokatić
Day Care Center for rehabilitation
“Mali dom”
Zagreb, Croatia
Mali dom - Zagreb
Interdisciplinary
assessment
Early
intervention
Day care program
Educational
center
Cooperation with institutions and professionals nationally and
internationally
CASE STUDY
was caried out with a ten year old girl with cochlear
implant
the efficiency of two combined “body based” therapies was
examined. Therapies were Holistic dance and movement
pedagogy and Vibroacoustic therapy
Treatment lasted for 13 weeks
Goals:
- reducing stereotypical behaviour
- increase body awareness
- improve communication
Hi!
My name is Mirna and I’m eleven years old...
I live in Zagreb with my parents and my two younger sisters.
Every day I go to school where I have lots of friends and a few of
teachers. There are some things I don’t like and some I really do
like. First I will tell you what I don’t like. Well..., I don’t like to eat
with the spoon, don’t like to be bothered when I’m playing on
my own. I don’t like to wear cochlear implant, every time when
someone wants to put that thing on my head I’m taking it off
and if they are really peristent in their attempt, sometimes, I
kick them in any way I can.
I like to drive in the car, to lay down and relax, to bath,
to swim. I like to run, to swing, to hang upside down, I
like to read books and I like shiny things. I don’t now if
you have noticed my distant gaze when you were
watching my photo but yes I’m a bohemian type of
person and I like art very much. Today I will tell you a
story how
I became a dancer.
THE RELEVANT THERAPIES
ARE...
Holistic dance and
movement pedagogy
is a method that contains elements of contact improvisation,
authentic movement and bodywork.
The concept was created by an Austrian dancer/holistic
dance and movement theacher, Sabine Parzer
Contact
improvisation
it is an improvised dance of exploring
weight, touch and communication
body is learning to release and to
abandon a certain quality of willfulnes
as a dance improvisation it is used
either as a dance practice end to itself
or as a dance research method for
identifying a new set of choreography
it adheres to no single definition or
pedagogical certification
Authentic movement
it is based on a Jungian technique which
he called active “imagination”
he used to dance with his patients both as a means of
personal expression and to “dance out their dreams”
based on his work a dancer Mary Stark Whitehouse, with her
students used a spontaneus body movement which was a
result of inner sensation of the individual
She called her work Movement from depth, later on, her
students named this method
Authentic movement
Bodywork
in this concept, bodywork included sensorical
experience of strong or light touch and sharing weight in
terms of leaning on and having strong support
Vibroacoustic therapy
was introduced by Norwegian musician/researcher, Olav
Skille, in 1982
it uses low frequency tones in the range of 30 – 120 Hz to treat
variety of conditions
it has been proposed to be an effective treatment for
individuals with challenging behaviours.
CONDITIONS TREATED WITH VAT
CP / Cerebral Palsy – Reduces spasticity and relaxes child
(40 Hz)
Autism – Provide sensory input to child which allows more
contact/skin stimulation by therapists
Back Pain (52 Hz)
Anxiety (52 Hz, 68 Hz)
Apraxia ( 50 Hz)
Aphasia (40 Hz, 60 Hz)
Asthma (5O Hz)
Blood Pressure (40 Hz, 60 Hz)
Reduces of stereotypical movement (40 Hz)
New sensoric experience
VAT UNIT AND SOFTWER
VAT unit is consisted from:
- vibration unit (bed, chair or
pillow) with built-in
loudspeakers
- audio unit ( CD player,
amplifer / transducer)
- softwer (frequencies in the
range from 30 – 120 Hz)
Sequence
My turn to make a move...
FINDINGS
decreased frequence of stereotypical behaviour and
autoagressive behaviour
faster/easier changing state
expended vocabulary
pulse normalization (usually from 90 to 70 or 80)
cochlear implant
Thank you for your attention!
FORMAÇÃO DE EQUIPES
COLABORATIVAS:
Um caminho para a inclusão escolar
responsável
XV DbI International
São Paulo, 2011
O PROJETO
• Documento: “A inclusão de crianças e jovens
com surdocegueira e com deficiência múltipla:
Reflexões do Grupo de Trabalho do Projeto
Perkins/Lavelle” (2009).
O ACORDO DE COOPERAÇÃO
Ahimsa – Secretaria de Educação da Cidade de São Paulo.
Curso: “Acordo de Cooperação – Formação de Equipes
Colaborativas e Estagiários Mediadores”
• Objetivos:
1. Promover Curso de formação Continuada para estagiários,
Gestores (Coordenadores e Diretores) e Professores
visando a inclusão de pessoas com surdocegueira e com
deficiência múltipla sensorial e pessoas com deficiência
que apresentam distúrbios de Comunicação.;
2. Promover aos estagiários a vivência de mediadores para as
pessoas com surdocegueira e deficiência múltipla sensorial,
favorecendo o processo de inclusão e apoio aos professores
da sala de ensino regular;
3. Incluir com qualidade pessoas com deficiência múltipla
sensorial e pessoas com surdocegueira.
O CURSO
• 60 horas – sendo 40h presenciais e 20h em
atividades complementares (trabalhos e
atividades on-line).
• CEFAIs - Campo Limpo, Capela do Socorro,
Ipiranga, Jaçanã, Penha, Pirituba, Santo Amaro
e São Miguel.
O conteúdo programático do curso
• Equipe colaborativa: Cultura da Inclusão e Papel da Equipe
Colaborativa.
• Aspectos Gerais das Deficiências: Deficiência Visual (baixa visão,
cegueira e deficiência visual de origem cortical), Deficiência
Auditiva/Surdez; Surdocegueira, Deficiência Intelectual, Deficiência
Física e Deficiência Múltipla.
• Abordagens Teóricas e Aspectos Gerais do Desenvolvimento e
Aprendizagem: Integração Sensorial; Comunicação e linguagem e
comunicação alternativa; Orientação e Mobilidade; Estilos de
Aprendizagem; Currículo Funcional e Currículo Flexível;
• Avaliação: Avaliação e Elaboração de Mapas.
• Recursos Acessíveis e Tecnologia Assistiva: Passaporte da Comunicação,
Caderno de Comunicação, Livro de Experiência Real e Tecnologia
Assistiva.
• Oficina de Confecção de Mobilia Adaptada e Recursos com Materiais de
Baixo Custo (papelão e sucata)
• Elaboração de Estudo de Caso e Plano Didático
O DESENROLAR DO ACORDO
Participantes
CEFAI
PARTICIPANTES
INSCRITOS
Campo Limpo
Capela do Socorro
Estagiárias - Grupo I
Estagiárias - Grupo II
Ipiranga
Jaçanã
Penha
Pirituba
Santo Amaro
São Miguel
Total
28
26
21
33
14
23
19
22
13
43
242
PARTICIPANTES
QUE TERMINARAM O
CURSO
28
23
18
25
12
18
14
17
12
35
202
Obs: 83% dos participantes terminaram o curso.
PERFIL DOS PARTICIPANTES
PROFISSIONAIS QUE PARTICIPARAM DOS CURSOS
1%
2%
1%
1% 1%
1%
2%
2%
19%
4%
7%
7%
15%
10%
15%
13%
Prof. Ens. Fundamental I
Estagiária
Prof. Ens. Fundamental II
Prof. Ed. Infantil
Coordenador Pedagógico
Prof. de SAAI
Prof. Apoio e Acomp.Incl. PAAI
Prof. Ens. Médio
Professor de Educação Especial
Diretor de Escola
Assistente de Direção, Estagiária do CEFAI, Agente Escolar
professora
Auxiliar Técnico de Educação (ATE)
Auxiliar Técnico de Educação Infantil (ATEI)
Professor Orientador de Informática Educativa (POIE)
Educadora de EJA (1), Prof. De Apoio Pedagógico (1) e Fisioterapeuta (1)
PERFIL DOS PARTICIPANTES
• 87% dos participantes tinham nenhum ou pouco
conhecimento sobre o assunto (64% não tinha
nenhum conhecimento e 23% tinha pouco
conhecimento).
• 94% não possuía ou possuía pouca bibliografia a
respeito do assunto (84% não tinham e 10% tinham
pouca).
• 79% responderam que tem interesse em intervir junto
a população.
• 76% não conhecia nenhum caso de surdocegueira.
• 59% não conhecia casos de deficiência múltipla
sensorial.
RESULTADOS - conteúdos
Resultados do Modelo I
CONTEÚDOS CONSIDERADOS MAIS SIGNIFICATIVOS
1%
2% 2%
1%
1% 1%
1%
Comunicação - formas e sistemas
2%
Definição das deficiencias/causas/síndromes
Integração sensorial
20%
3%
Maps
3%
Adaptações de materiais e ambientes/estratégias para trabalhar com a pessoa surdocega
Calendário
4%
O& M
Oficina de confecção de mobília adaptada em papelão
5%
Videos c/estratégias de trabalho
Rotina
Tecnologia Assistiva
6%
18%
O olhar do profissional
Dinâmicas
A aprendizagem da pessoa com surdocegueira
10%
Cultura inclusiva
Avaliação ecologica
Estilos de aprendizagem
10%
12%
Curriculo funcional
RESULTADOS - conteúdos
Resultados do Modelo II
Utilidade do conteúdo para os participantes em seu trabalho diário.
POUCO
PROVÁVEL
8%
MUITO
PROVÁVEL
92%
8%
82%
c) deficiência visual de origem cortical
32%
68%
d) comunicação
6%
94%
e) avaliação
6%
94%
f) integração sensorial
10%
90%
g) estilos de aprendizagem
8%
92%
h) currículo
8%
92%
i) recursos acessíveis
8%
92%
TEMAS
a) aspectos gerais das deficiências SC, DF, DMu, DV,
DI e DA.
b) orientação e mobilidade
RESULTADOS – aplicação dos
conhecimentos
conhecimentos
conhecimentos
conhecimentos
• 96% dos participantes responderam que os
conteúdos foram muito pertinentes para o
seu trabalho cotidiano junto aos alunos com
NEE.
RESULTADOS – equipes colaborativas
• Tinham conhecimento, mas não sistematizado.
• Passaram a ter uma visão diferenciada sobre a
inclusão e a importância das equipes colaborativas
para a inclusão responsável.
“A criança não é responsabilidade só da família e da
professora e sim de toda a comunidade escolar, desde
o condutor do transporte, o vigia que o recebe, a
inspetora que conduz até a sala, os colegas que o
acompanham, enfim as equipes colaborativas vêm para
contribuir na autonomia e desenvolvimento da
criança.”
CONCLUSÕES
• Os profissionais do sistema educacional da
Cidade de São Paulo que participaram do curso
têm carência de informações sobre
surdocegueira e deficiência múltipla sensorial,
assim como sobre as outras deficiências, das
necessidades dessas pessoas e das estratégias
educacionais que podem ser usadas para
melhorar sua participação e aprendizagem, e em
consequência a efetivação de uma inclusão
responsável.
CONCLUSÕES
• Os profissionais apresentaram grande
interesse pelo assunto, em sua aplicabilidade
e em buscar mais informações a respeito para
a continuidade e aprimoramento de seu
trabalho cotidiano com esses alunos.
CONCLUSÕES
• A maioria desses profissionais pretendem
divulgar os conhecimentos adquiridos não
somente entre os outros profissionais das
unidades educacionais, mas também entre as
famílias e a comunidade escolar, criando com
o passar do tempo uma cultura inclusiva que
mudará os paradigmas em relação a inclusão
responsável dos alunos com deficiência.
OBRIGADA!
MARCIA MAURILIO SOUZA
[email protected]
Focus on Usher
Need for support & support possibilities: a case study of
September 28, 2011 – Chrétienne van der Burg
Research setting
•Syndrome of Usher
•The consequences for identity development
•Forms of support
Survey of current number of Usher clients &
provided support at Royal Dutch Kentalis
9/28/2011
Focus on Usher
2
Syndrome of Usher
Usher type
Level of hearing at birth
Development
Type I
Born deaf
At age ± 10 increasing
visual problem;
Night blindness, gradual
reduction in peripheral
vision.
Type II
Hearing impaired;
level of hearing differs,
usually born with problem
of high tones
At puberty increasing
visual problem;
Night blindness, gradual
reduction in peripheral
vision.
Type III
No hearing or visual
problem
At age ± 10 less hearing,
At puberty increasing
visual problem.
9/28/2011
Focus on Usher
Consequences for identity
Loss
Identity
Support
& social
contacts
9/28/2011
Focus on Usher
Adaptation
‘New
identity’
Youth & Usher
• Denial or embarrassment
• No reference as the only one with double handicap
• Tight situation at home
• The role of teachers
• Doubt about safety at vocational school
9/28/2011
Focus on Usher
Need for Support (Dorsman, 2009)
• Social contacts
• Courses
• Activities
• Sport
• Work
9/28/2011
Focus on Usher
Support at Kentalis
1976:
‘Vision Centre’: diagnostics and treatment combined
90’s:
Process of decentralization: diagnostics and treatment separated
2010:
new policy: ‘Empowerment’
• Support in different stages in life
• Support in both practical skills and social-emotional development
9/28/2011
Focus on Usher
Usher Clients
Age group
N
Percentage
0-12
9
6.4
12-24
34
24.3
24-45
36
25.7
Older than 45
61
43.6
Total
140
100
9/28/2011
Focus on Usher
Usher type
Usher type
N
Percentage
Type- I
85
60.7
Type-II
39
29.7
Type-III
1
0.7
Unclear
15
10.7
Total
140
100
9/28/2011
Focus on Usher
Kentalis’ support Usher clients
• Diagnostics : assessment by a multidisciplinary diagnostic team
• Special Education
• Investment in social contacts
• Training and Support for Acquired Deafblindness
9/28/2011
Focus on Usher
Conclusions
Client
Professionals
Organization
9/28/2011
•Specific support tailored to specific needs
•Phase related
•Empowerment: focus on practical skills
and identity
• Staff training
• Well-informed on available support and
services
• Usher as a specific area of expertise
• Centralization
• Exchange of knowledge and expertise
(knowledge network)
Focus on Usher
11
Chrétienne van der Burg
[email protected]
www.kentalis.com
Usher syndrome type II
some aspects of
physical and psychological health
Moa Wahlqvist, Claes Möller
Berth Danermark and Kerstin Möller
Researchers in Sweden
• C. Möller, professor in Audiologi and Medical
Disability Research. Research about deafblindness
and Usher syndrome.
• B. Danermark, professor in Sociologi
Communication difficulties and disability.
• B. Lyxell, professor in Psychology.
Cochlear implants (CI)
• K. Möller, Medicine Doctor
Deafblindness in a holistic perspective.
• P. Ranjbar, Doctor of Technology
Vibrerande hjälpmedel
•C. Henricson, PhD student
Language and speech- development for children
with Usher type 1 and CI
•M. Wahlqvist, PhD student
Public Health, psychosocial problems for people
with Usher syndrome
•H-E. Frölander, PhD student
Cognitive development, children with early
deafblindness
•B. Rönnåsen, PhD student
Children with early deafblindness, communicative
development for children with Alström syndrome
and CHARGE syndrome
Usher syndrome
What is it?
• Defined as hearing loss with retinitis
pigmentosa in the absence of other significant
symptoms.
• It is inherited as an autosomal recessive.
• There are three clinical types.
• There are at least nine genes involved
Clinical Types
•Type 1:
– Profound hearing loss (deaf).
– Early onset RP.
– Balance problems.
•Type 2:
– Moderate to severe hearing loss (hard of hearing)
– RP evident in their teens
– No balance problems
•Type 3:
– Progressive hearing loss.
– Looks like type 2 as children.
– Looks like type 1 as older adults.
Comparison of hearing loss between Usher type I, II
and III
II
III
III
I
_ ■_
Usher type II
_●_ Usher type III (USH3)
_▲_ Usher type I
_ ■_
Usher type II
_●_ Usher type III (USH3)
_▲_ Usher type I
Usher syndrome
Visual acuity life-long perspectives
Usher typ II
Usher typ I -
Teenage
20-40 years
40-50 years
Purpose
To present some data on the physical and
psychological health of persons with Usher
syndrome type II
Data
Swedish national register of individuals with
Usher syndrome
All three types are included
Audiograms and visual tests
Gene tests
Swedish public health survey
HADS – hospital anxiety and depression scale
Reference population
National sample
- individuals with and without disabilities
Swedish Institute for public health
Swedish public health survey
Population
Usher type II
Number
96
Reference
population
5827
Age (mean)
55
58
Age (min –
max)
Women
(percent)
18-84
23-91
53
56
GHQ12*
Suicide attempts*
Suicide thoughts*
Reasonably happy*
Face up to problems*
Worthless*
Constantly under strain*
Loosing confidence*
Capable of making decisions*
Unhappy and depressed*
Manage problems*
Lost sleep over worry*
Appreciate the day*
Concentration*
Sleeping problems*
Fatigue*
Anxiety, worry*
High blood pressure*
Allergy*
Asthma*
Diabetes*
Obesity*
Bowel trouble*
Incontinence*
Eczema, skin rashes*
Pain hand, elbow, knee, legs*
Back pain*
Pain shoulders, neck*
Tinnitus*
Headache*
Percent
Reference
Physical and Psychological health
60
50
40
30
20
Ref Men
Ref Women
10
0
*Sign p ≤ 0,05
Physical and psychological health
80
70
60
Percent
50
40
Reference
30
Usher type II
20
10
0
*Sign p ≤0,05
Suicide attempts
Suicide thoughts
Reasonably happy
Face up to problems
Worthless
Constantly under strain
Loosing confidence
Capable of making decisions
Unhappy and depressed
Accomplished things
Manage problems
Lost sleep over worry
Appreciate the day
Concentration
Sleeping problems
Fatigue
Anxiety, worry
High blood pressure
Allergy
Asthma
Diabetes
Obesity
Bowel trouble
Incontinence
Eczema, skin rashes
Pain hand, elbow, knee, legs
Back pain
Pain shoulders, neck*
Tinnitus
Headache
Bad general health
Percent
USH2
90
80
70
60
50
40
30
Men USH2
Women USH2
20
10
0
*Sign p ≤ 0,05
Women
90
80
70
Percent
60
50
Ref Women
Women USH2
40
30
20
10
0
Headache*
Tinnitus*
Pain shoulders,
neck*
Fatigue*
Suicide
thoughts
Suicide
attempts
*Sign p ≤ 0,05
Men
Physical and psychological health
70
60
Percent
50
40
30
Ref Men
Men USH2
20
10
0
*Sign p ≤ 0,05
Preliminary conclusions
• Individuals with USH2 have poor physical and
psychological health
• Higher risk of suicide thoughts and suicide
attempts
• Men with USH2 express more problems with
physical and psychological health than the
men in the reference group
Questions
• How can we understand the differences in
health?
– Vision
– Hearing
– Identity
– ??
Thanks!
[email protected]
September 28 2011
Project CHANGE
A new perspective late in life
Kitty Bloeming
Educational psychologist
Royal Visio, De Brink
Visio
Visio is a centre of expertise for blind and
partially sighted people.
With full inspiration and professional
knowledge it endeavours to achieve the
most within the limitations of visually
impaired and blind people.
The need of the client is central and the
quality of life is above all. Support with
respect and a personal approach.
More about Visio
Visio offers services for care, education,
rehabilitation, living and working.
Visio is an organisation that generates
knowledge and constantly learns and
progresses; a key value in this is
expertise.
Non-stop work on innovations and renewal
of care, rehabilitation and education
Visio Data
 Number of employees 3.226 FTE
 Countrywide coverage with >35 locations
 Each year Visio supports 19.000 clients,
students and residents
 Certified by HKZ
within the Health Care Sector)
(Harmonization of Quality Assessment
A glimpse at the various professionals
that work with Visio
Ophthalmologists
Optometrists
Vision therapists
Clinical physicists
Psychologists
Neuropsychologists
Social workers
Case workers
Residential supervisors
Free-time coaches
Development coaches
Ergonomics therapists
Physical therapists
AOB members (Teachers Union)
Teachers
Video experts
Intakers
Information officers
Behavioural scientists
Computer instructors
Audiologists
Etc. etc.
Overview of services and products
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Research
Optimal use of senses
Coping with visual impairment
Information and advice about aid tools
Orientation and Mobility
Household skills
Personal care
Communication
Work and studies
Free time
Intensive Rehabilitation
Visio Locations
 Rehabilitation & Advice
 Residential & Day Care
 Education
Location De Brink
 Residential setting for persons with
intellectual and sensory disabilities
 2 group homes specifically for persons
with deaf-blindness since 2005
13 november
Program
 Introduction - adults with deaf-blindness
and an intellectual disability
 Project CHANGE - background
 Project CHANGE - scientific research
 Project CHANGE - state of the art
13 november
Introduction – adults with deafblindness and an intellectual
disability
 Complexity of interaction and
communication
- Utterances are subtle
- Utterances are different than what we
expect
- Utterances are difficult to interpret
 Importance of early diagnosis and
specific approach
 (Janssen et al, 2003b)
13 november
Deaf-blindness and an intellectual
disability
 Prevalence of combined sensory disability
among persons with an intellectual
disability ranges from 5% till 21,4%
 Unidentified combined sensory disability
in 83,3% till 88% of all cases
 Risk: approach is not adjusted to deafblindness
 (Fellinger et al, 2009; MeuweseJongejeugd et al, 2008)
13 november
Deaf-blindness and an intellectual
disability. What are the risks?
 Lack of incidental learning possibilities
 Misinterpretation of behavior (e.g. selfstimulation)
 Incorrect diagnosis of intellectual
disability
 Diagnosis of intellectual disability as a
self-fulfilling prophecy
 Deprivation
 (McInnes, 1999; Narayan & Bruce, 2006;
Van Dijk, 1982; Van Dijk & Janssen,
1993)
13 november
Project CHANGE, background
 Renovation at De Brink
 Transition for all clients
 Special attention for clients with deafblindness
 Start of 2 ‘communication groups’ for
deaf-blind adults: Project CHANGE
Selection of clients
 Adults with congenital deaf-blindness and
an intellectual disabilty
 Specific competences or skills not in line
with degree of intellectual disability
 Exclusion criteria
- Enough residual vision and/ or hearing
to profit from the regular approach in
the residential setting
- Suspension of dementia
Selection of caregivers
 Basic attitude of sensitive responsiveness
 Good basic interaction skills
 Aimed at including at least 1 known
caregiver for each client
What changed?
 Transition from pavilion to two-underone-roof-house
 Group size reduced from 6 or 7 clients to
4 clients
 Houses specifically for deafblind clients
 Better staff-client ratio
 Approach adjusted to deafblindness
- Training program for caregivers
- Intensive use of video analysis
Starting points in Project CHANGE
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One on one interaction
Motivation
Trust
Voluntary
Positive experiences
Capable to learn at all ages
Taking care with (not for)
Integrated daycare
Project CHANGE - scientific research
 Scientific research to measure effects of
Project CHANGE on interaction and
communication
 Cooperation with University of Groningen
and Radboud University Nijmegen
 6 participants
Interaction and communication
 Interaction: the process in which two
individuals mutually influence each
other’s behavior
 Communication: a form of interaction in
which meaning is transmitted by the use
of signals that are perceived and
interpreted by the partner
 (Bjerkan, 1996; Janssen et al, 2003a)
Analysis of interaction
 Interaction categories CONTACT (Janssen
et al, 2003a)
 Video recordings in 3 periods
 Observation scheme
 2 observers
Method CONTACT
Categories of interaction
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Initiatives
Confirmations
Answers
Turns
Attention
Intensity
Affective involvement
Independent acting
Video recordings
 3 periods
- Before transition (T0)
- 4-7 months after transition (T1)
- 20-23 months after transition (T2)
 Fragments per participant
- Comparable situation for each period
- 5 minutes
- 3 participants T0 and T1
Observation schemes
 Interval coding
- 2 observers
- Intervals of 10 seconds
- Training till 80% agreement
 Frequency and duration
- 2 observers
- Seconds
13 november
Results
 Attention caregiver
 Attention participant
 Affective involvement
13 november
Results in progress
 Initiatives
 Confirmations
 Answers
13 november
Analysis of communication
 3 periods
- Before transition
- 4-7 months after transition
- 20-23 months after transition
 Communication Matrix (Rowland, 2009)
- 4 functions of communication
- 7 levels
 Results in progress
Project CHANGE – state of the art
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Scientific research
3 clients live in a regular group
4 new clients with deaf-blindness
New initiatives for adults with deafblindness and an intellectual disability in
The Netherlands
References (1)

Bjerkan, B. (1996). When do congenital deaf-blinds communicate? On the distinction between
communication and other types of social contact. In M. Laurent (Ed.), Communication and
congenital deaf-blindness. The development of communication. What is new? (pp. 179-194).
Suresnes: Centre national de Suresnes.

Fellinger, J., Holzinger, D., Dirmhirn, J., & Goldberg, D. (2009). Failure to detect deaf-blindness in
a population of people with intellectual disability. Journal of Intellectual Disability Research, 53, 10,
874-881.

Janssen, M. J., Riksen-Walraven, J. M., & Van Dijk, J. P. M. (2003a). Toward a diagnostic
intervention model for fostering harmonious interactions between deaf-blind children and their
educators. Journal of Visual Impairment & Blindness, 97, 197-214.

Janssen, M. J., Riksen-Walraven, J. M., & Van Dijk, J. P. M. (2003b). Contact: Effects of an
intervention program to foster harmonious interactions between deaf-blind children and their
educators. Journal of Visual Impairment & Blindness, 97, 215-229.

McInnes, J. M. (1999). Deaf-blindness: A unique disability. In J. M. McInnes (Ed.). A guide to
planning and support for individuals who are deaf-blind. (pp. 3-33). Toronto: University of Toronto
Press Incorporated.

Meuwese-Jongejeugd, A., van Splunder, J., Vink, M., Stilma, J. S., van Zanten, B., Verschuure, H.,
Bernsen, R., & Evenhuis, H. (2008). Combined sensory impairment (deaf-blindness) in five percent
of adults with intellectual disabilities. American journal on mental retardation, 113, 254-262.
13 november
References (2)

Narayan, J., & Bruce, S. M. (2006). Perceptions of teachers and parents on the cognitive
functioning of children with severe mental disability and children with congenital deaf-blindness.
International journal…….rehabilitation……, 29, 9-16.

Rowland, C. (Ed.), 2009. Assessing communication and learning in young children who are deaf-
blind or who have multiple disabilities. Design to Learn Projects, Oregon Health & Science
University.

Van Dijk, J. (1982). Rubella handicapped children. The effects of bi-lateral cataract and/ or hearing
impairment on behavior and learning. Lisse, the Netherlands: Swets & Zeitlinger.

Van Dijk, J., & Janssen, M. (1993). Doofblinde kinderen [Deaf-blind children]. In H. Nakken (Ed.),
Meervoudig gehandicapten. Een zorg apart. [Individuals with multiple disabilities. Specialized care]
(pp. 34-73). Rotterdam, the Netherlands: Lemniscaat.
13 november
Questions?
Kitty Bloeming
[email protected]
13 november
September 27 2011
Improving interaction and
communication in adulthood. Is
it possible?
An intervention study
Kitty Bloeming
Visio
More about Visio
expertise.
Visio Data
Ophthalmologists
Optometrists
Vision therapists
Clinical physicists
Psychologists
Neuropsychologists
Social workers
Case workers
Free-time coaches
Development coaches
Physical therapists
Teachers
Video experts
Intakers
Audiologists
Etc. etc.
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




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
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Research
Household skills
Personal care
Communication
Work and studies
Free time
Visio Locations
 Education
Location De Brink
 Intervention study at the group homes
for persons with deaf-blindness
13 november
Intervention study (1)
 Aim: improve interaction and
communication
 Interaction: process in which two
individuals mutual influence each other’s
behaviour
 Communication: a form of interaction in
which meaning is transmitted and shared
by the use of utterances that are
perceived and interpreted by the partner
(Bjerkan, 1996; Janssen et al, 2003)
13 november
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October 2009 - July 2010
Multiple baseline design
Baseline 4 – 12 weeks
Intervention 15 weeks
Follow up after 3, 7 and 11 weeks
13 november
 5 congenitally deafblind participants
 10 caregivers
 20 minute video recording of each couple
on a weekly basis
 5 coaching sessions per caregiver,
divided into 2 intervention parts
 Evaluation of the coaching
 Communication Matrix
13 november
Intervention parts
 Method CONTACT (Janssen et al, 2003)
 Bodily Emotional Traces (BET’s) and
narrative approach (Bloeming, 2007;
Daelman et al, 2001; Heijnen et al,
2008)
13 november
Intervention principles CONTACT
The focus is on the improvement of the insights and
skills of the caregivers with regard to
 Recognition of the signals of the individual deafblind
person and evaluation of the adequacy of their own
interactive behaviors
 Attunement of their behaviors to those of the deaf-
blind persons
 Adaptation of the interactional context to promote
the occurence of particular behavior
13 november
Method CONTACT
Categories of interaction
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
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


Initiatives
Confirmations
Answers
Turns
Attention
Intensity
Affective involvement
Independent acting
13 november
Before the start of the coaching
 Determination of the question –
teammeeting
 Clarification of the question – individual
 Choice of the situation – individual
 Video protocol
 Determination of the intervention aims
13 november
Intervention aims
 The caregiver shares emotions with the
person with deaf-blindness
 The caregiver improves the reciprocity in
the interaction
 The caregiver recognizes initiatives of the
person with deaf-blindness
13 november
Adaptation of interactional context
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Change in position
Use of objects of reference
Use of gestures
No music
Dosing information
Temperature of coffee
13 november
Bodily Emotional Trace (BET)
 A BET is in the mind
 Gestures with high meaning potential
 Gestures charged with reminiscences of
past experiences
 An expression based on a BET is
connected with the experience that it
refers to in a bodily way. It is loaded with
emotion.
13 november
5 categories
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Movement
Location
Sensation
Position
Invisible
13 november
Evoke expressions based on a BET
 Good quality of interaction
 Introducing novelty, expected or nonexpected
13 november
Narrative approach
 Emotional involvement
 Communicate in a bodily-tactile way that
something exciting is going on
 Imitate and expand on the utterances of
the deafblind person
 During the experience comment on it by
way of drama, gestures and mime, in
order to strengthen the impressions
 Talk about an experience afterwards
13 november
Results
 Analysis of data using multiple methods
- Interval coding
- 2 observers
- 5 minute fragments
- Intervals of 10 seconds
- Focus groups
- System in development
13 november
Results in progress
 Interval coding
- Attention participant
- Attention caregiver
- Affective involvement
- Confirmations caregiver
 Focus groups
- Quality of interaction
 System in development
- BET’s
13 november
Evaluation
 Scale for social validity
 Positive evaluation
 Second part of intervention difficult
13 november
Communication
 Communication Matrix
- At the start of the intervention period
- Within 3 weeks after the intervention
period ends
 Communication Matrix (Rowland, 2009)
- 4 functions of communication
- 7 levels
References
Bjerkan, B. (1996). When do congenital deafblinds communicate? On the
distinction between communication and other types of social contact. In
M. Laurent (Ed.), Communication and congenital deafblindness. The
development of communication. What is new? (pp.179-194). Suresnes:
Centre national de Suresnes.
Bloeming-Wolbrink, K.A. (2007). What is on your mind? Expressions based
on a Bodily Emotional Trace (BET) in the communication with persons
who are congenitally deafblind. Unpublished master’s thesis, University of
Groningen, Groningen, The Netherlands.
Daelman, M., Janssen, H.J.M., Ask Larsen, F., Nafstad, A., Rødbroe, I.,
Souriau, J., & Visser, T. (2001). Congenitally deafblind persons and the
emergence of social and communicative interaction. Phase III: the
formation of meaning. Working paper of the Deafblind International
Communication Network.
Janssen, M. J., Riksen-Walraven, J. M., & Van Dijk, J. P. M. (2003). Toward a
diagnostic intervention model for fostering harmonious interactions
between deaf-blind children and their educators. Journal of Visual
Impairment & Blindness, 97, 197-214.
Heijnen, I., Van Rooij, E., & Vege, G. (2008). Narratives. In J. Souriau, I.
Rødbroe, & M. Janssen (Eds.), Communication and congenital
deafblindness. Meaning making. (pp.25-33). Uden: Graphiser bv.
Rowland, C. (Ed.), 2009. Assessing communication and learning in young
children who are deafblind or who have multiple disabilities. Design to
Learn Projects, Oregon Health & Science University.
13 november
Questions?
Kitty Bloeming
[email protected]
13 november
September 30 2011
Deaf-blindness and stress
The diurnal cortisol curve of adults with
congenital deaf-blindness and an
intellectual disability
Kitty Bloeming
Visio
More about Visio
expertise.
Visio Data
Number of employees 3.226 FTE
Countrywide coverage with >35 locations
Each year Visio supports 19.000 clients,
Certified by HKZ
Ophthalmologists
Optometrists
Vision therapists
Clinical physicists
Psychologists
Neuropsychologists
Social workers
Case workers
Free-time coaches
Development coaches
Physical therapists
Teachers
Video experts
Intakers
Audiologists
Etc. etc.
Research
Household skills
Personal care
Communication
Work and studies
Free time
Visio Locations
Rehabilitation & Advice
Residential & Day Care
Education
Location De Brink
Residential setting for persons with
2 group homes specifically for persons
Scientific research at the group homes
3 november 2011
Scientific research
Interaction
Communication
Stress - cortisol
3 november 2011
General information cortisol (1)
Circadian rhythm
A peak in the early morning hours
Lowest values around midnight
Rhythmic pattern and in reaction to
stressors
Supports adaptive functioning
(Kirschbaum & Hellhammer, 1989;
Lovallo, 2005)
Negative effects of chronically increased
cortisol levels
Deviancies in cortisol circadian rhythm
- Emotionally maltreated children
- PTSD
- Children raised in neglectful institutions
(Bruce et al, 2009; Carlson & Earls,
1997; Carrion et al, 2002; Fries et al,
2005)
Deviant cortisol curve
Hypercortisolism
Hypocortisolism
Deviant shape (e.g. flat)
Recovery of cortisol curve seems possible
(Gunnar & Quevedo, 2007)
Little is known about the influence of
Why to expect deviancies in the cortisol
curve of persons with deaf-blindness
Deaf-blindness influences circadian
rhythms, e.g. sleep
Daily life may be stressfull –
unpredictable and uncontrollable
History of sensory and social deprivation
Stressfull life events, e.g. maternal
separations in childhood
Scientific research – cortisol (1)
5 periods
8 participants
- 4 participants in 5 periods
- 1 participant in 3 periods
- 1 participant in 1 period
- 1 participant was excluded
3 november 2011
Participants
- Congenital deaf-blind
- Intellectual disability
- 5 male – 3 female
Control group – 40 healthy adults
(Eijsbouts et al, 2008)
3 november 2011
Research questions
1
7
What does the diurnal cortisol curve of
adults with congenitally deaf-blindness
and an intellectual disability look like?
Do changes in interaction and
communication quality lead to changes in
the diurnal cortisol curve?
Cortisol study
1
8
5 periods of 2-4 weeks
Saliva samples
Samples collected by caregivers
7-10 days of sampling
5 samples a day
Questionnaire
Storage in refrigarator and freezer
Analysis in Nijmegen –
radioimmunoassay after extraction with
dichloromethane and subsequent paper
chromatography
Video ‘saliva sample’
3 november 2011
Analysis of saliva samples
Problems during period 1 and 2
1 participant refused saliva sampling
Large percentage of saliva samples that
did not contain enough saliva for analysis
(65-58% analyzed)
Saliva samples containing blood as a
result of bleeding gum
Adjustments in period 3, 4 and 5
Long preparation period
Trial saliva samples
Instruction movie for caregivers
Contact person at the group home
Taking time for sampling: 1-2 minutes
Splitting the sampling if necessary
Prepare the participant for the sampling
Result: much higher percentage of
samples that can be analyzed (84-8178%)
Video ‘instruction movie’
3 november 2011
Results period 1 – What does the
diurnal cortisol curve look like
Relatively normal curve
Substantial individual variation
Curve above normal for 1 participant
Curve below normal for 1 participant
Diurnal cortisol curve in period 1
Salivary cortisol (nmol/l)
Participants
Controls
15
10
5
0
8
9
10 11 12 13 14 15 16 17 18 19 20 21 22 23 24
Daytime (hrs)
3 november 2011
Results periods 2, 3, 4 and 5 – What is
the effect of changes in interaction and
communication on the diurnal cortisol
curve
Results in progress
3 november 2011
References (1)
Bruce J, Fisher PA, Pears KC, and Levine S. 2009. Morning cortisol levels in preschool-aged foster
children: differential effects of maltreatment type. Developmental Psychobiology 51: 14-23.
Carlson M, and Earls F. 1997. Psychological and neuroendocrinological sequelae of early social
deprivation in institutionalized children in Romania. Annals of the New York Academy of Sciences
807: 419-428.
Carrion VG, Weems CF, Ray RD, Glaser B, Hessl D, and Reiss AL. 2002. Diurnal salivary cortisol in
pediatric posttraumatic stress disorder. Biological Psychiatry 51: 575-582.
Eijsbouts AMM, Kempers MJE, Kramer RSA, Hopman MTE, Van den Hoogen FHJ, Laan RFJM,
Hermus ARMM, Sweep FCGJ, and Van de Putte LBA. 2008. Effect of naproxen on the
hypothalamic-pituitary-adrenal axis in healthy volunteers. British Journal of Clinical Pharmacology
67: 22-28.
3 november 2011
References (2)
Fries E, Hesse J, Hellhammer J, and Hellhammer DH. 2005. A new view on hypocortisolism.
Psychoneuroendocrinology 30: 1010-1016.
Gunnar M, and Quevedo K. 2007. The neurobiology of stress and development. Annual Review of
Psychology 58: 145-173.
Kirschbaum C, and Hellhammer DH. 1989. Salivary Cortisol in Psychobiological Research: An
Overview. Neuropsychobiology 22: 150-169.
Lovallo WR. 2005. Stress & health. Biological and psychological interactions. Thousand Oaks:
SAGE Publications.
3 november 2011
Questions?
Kitty Bloeming
[email protected]
3 november 2011
September 30 2011
Deaf-blindness and stress
The diurnal cortisol curve of adults with
congenital deaf-blindness and an
intellectual disability
Kitty Bloeming
Visio
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Visio Locations
 Education
Location De Brink
 Scientific research at the group homes
13 november
Scientific research
 Interaction
 Communication
 Stress - cortisol
13 november
Circadian rhythm
A peak in the early morning hours
Lowest values around midnight
Rhythmic pattern and in reaction to
stressors
 Supports adaptive functioning
 (Kirschbaum & Hellhammer, 1989;
Lovallo, 2005)
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 Negative effects of chronically increased
cortisol levels
 Deviancies in cortisol circadian rhythm
- Emotionally maltreated children
- PTSD
- Children raised in neglectful institutions
 (Bruce et al, 2009; Carlson & Earls,
1997; Carrion et al, 2002; Fries et al,
2005)
Deviant cortisol curve
 Hypercortisolism
 Hypocortisolism
 Deviant shape (e.g. flat)
 Recovery of cortisol curve seems possible
(Gunnar & Quevedo, 2007)
 Little is known about the influence of
Why to expect deviancies in the cortisol
curve of persons with deaf-blindness
 Deaf-blindness influences circadian
rhythms, e.g. sleep
 Daily life may be stressfull –
unpredictable and uncontrollable
 History of sensory and social deprivation
 Stressfull life events, e.g. maternal
separations in childhood
 5 periods
 8 participants
- 4 participants in 5 periods
- 1 participant in 1 period
- 1 participant was excluded
13 november
 Participants
- Congenital deaf-blind
- Intellectual disability
- 5 male – 3 female
 Control group – 40 healthy adults
(Eijsbouts et al, 2008)
13 november
Research questions
1
7
 What does the diurnal cortisol curve of
adults with congenitally deaf-blindness
and an intellectual disability look like?
 Do changes in interaction and
communication quality lead to changes in
the diurnal cortisol curve?
Cortisol study
1
8
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5 periods of 2-4 weeks
Saliva samples
Samples collected by caregivers
7-10 days of sampling
5 samples a day
Questionnaire
Storage in refrigarator and freezer
Analysis in Nijmegen –
radioimmunoassay after extraction with
dichloromethane and subsequent paper
chromatography
Problems during period 1 and 2
 1 participant refused saliva sampling
 Saliva samples that did not contain
enough saliva for analysis
 Saliva samples containing blood as a
result of bleeding gum
Adjustments in period 3, 4 and 5
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Long preparation period
Trial saliva samples
Instruction movie for caregivers
Contact person at the group home
Taking time for sampling: 1-2 minutes
Splitting the sampling if necessary
Prepare the participant for the sampling
 Result: much higher percentage of
samples that can be analyzed
Results periods 1, 2, 3, 4 and 5 – What
does the diurnal cortisol curve look
like? What is the effect of changes in
interaction and communication?
13 november
References (1)

Bruce J, Fisher PA, Pears KC, and Levine S. 2009. Morning cortisol levels in preschool-aged foster
children: differential effects of maltreatment type. Developmental Psychobiology 51: 14-23.

Carlson M, and Earls F. 1997. Psychological and neuroendocrinological sequelae of early social
deprivation in institutionalized children in Romania. Annals of the New York Academy of Sciences
807: 419-428.
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Carrion VG, Weems CF, Ray RD, Glaser B, Hessl D, and Reiss AL. 2002. Diurnal salivary cortisol in
pediatric posttraumatic stress disorder. Biological Psychiatry 51: 575-582.

Eijsbouts AMM, Kempers MJE, Kramer RSA, Hopman MTE, Van den Hoogen FHJ, Laan RFJM,
Hermus ARMM, Sweep FCGJ, and Van de Putte LBA. 2008. Effect of naproxen on the
hypothalamic-pituitary-adrenal axis in healthy volunteers. British Journal of Clinical Pharmacology
67: 22-28.
13 november
References (2)

Fries E, Hesse J, Hellhammer J, and Hellhammer DH. 2005. A new view on hypocortisolism.
Psychoneuroendocrinology 30: 1010-1016.

Gunnar M, and Quevedo K. 2007. The neurobiology of stress and development. Annual Review of
Psychology 58: 145-173.

Kirschbaum C, and Hellhammer DH. 1989. Salivary Cortisol in Psychobiological Research: An
Overview. Neuropsychobiology 22: 150-169.

Lovallo WR. 2005. Stress & health. Biological and psychological interactions. Thousand Oaks:
SAGE Publications.
13 november
Questions?
Kitty Bloeming
[email protected]
13 november

Visio - Deafblind International

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