Autisme pays Basque espagnol .pdf



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Prise en charge des enfants et des adolescents
atteints d’autisme et de TED:
le modèle du pays basque espagnol
Joaquin Fuentes M.D.

November 7, 2009
GAUTENA

1

San Sebastian, Basque Country, Spain

San Sebastian, Basque Country, Spain

2

GAUTENA:
HISTORICAL BACKGROUND
1960

First Parents Societies in Mental Retardation
Services development
Social awareness and informal support
Support from private institutions

1978

GAUTENA was created

1980

Creation of a new Basque Autonomous Administration
Full competences in Education, Health and Soc. Services
Tax sovereignty / Autonomous tax collecting
The new Administration choose to support Societies.....

Gipuzkoa County

2.187 students with s.e.n.
1.057 additional staff

2
1
Source: Dept. of Education. Basque Government

3

TERTIARY LEVEL PROGRAM
Funding (92% direct + 8% indirect
from Public Authority)
-Health 6%
-Education 30%
-Social Services 66%

Population 700.000
Families: 439
Staff: 183 (62% FT)
Public Funding: 92%

GAUTENA

Clinic
“Autism” class
Group Home
Day Center
Leisure
Support to families
Short Stays

4

PSYCHIATRIC INSTITUTIONALIZATION

< 0.1%

5

FRAMEWORK FOR PERSONAL SUPPORT IN ASD

1. Following good practice guidelines
2. Facilitating a joint personalized support program
3. Securing a rational psychopharmacology practice
4. Empowering for human rights defense
5. Aiming towards excellence

Caja Madrid

AUTISM SPECTRUM DISORDERS
STUDY GROUP (2002 –2006)

6

EARLY DETECTION

Revista
Presentación
Índices
Cómo publicar
Búsquedas Avanzadas
Enlaces
Preguntas Frecuentes
Información de interés para nuestros
autores

DIAGNOSIS

Alta como usuario en revneurol.com

Alta como usuario en revneurol.com

Le permitira tener acceso gratuito a todos los artículos de nuestra página Web.

Le permitira tener acceso gratuito a todos los artículos de nuestra página Web.

http://www.revneurol.com

Revista
Presentación
Índices
Cómo publicar
Búsquedas Avanzadas
Enlaces
Preguntas Frecuentes
Información de interés para nuestros
autores

REV NEUROL 2005; 41 (4): 237 - 245

Usuarios
Nuevo Usuario
Su Espacio
Modificar email y datos
Recordar Contraseña

Usuarios
Nuevo Usuario
Su Espacio
Modificar email y datos
Recordar Contraseña

Usuarios
Nuevo Usuario
Su Espacio
Modificar email y datos
Recordar Contraseña

REV NEUROL 2005; 41 (5): 299- 231

TREATMENT

RESEARCH

Revista
Presentación
Índices
Cómo publicar
Búsquedas Avanzadas
Enlaces
Preguntas Frecuentes
Información de interés para nuestros
autores

http://www.revneurol.com

Alta como usuario en revneurol.com

Alta como usuario en revneurol.com

Le permitira tener acceso gratuito a todos los artículos de nuestra página Web.

Le permitira tener acceso gratuito a todos los artículos de nuestra página Web.

http://www.revneurol.com
REV NEUROL 2005; 41 (6): 371 - 377

Revista
Presentación
Índices
Cómo publicar
Búsquedas Avanzadas
Enlaces
Preguntas Frecuentes
Información de interés para nuestros
autores

http://www.revneurol.com
REV NEUROL 2006; 43 (7): 425 - 438

Usuarios
Nuevo Usuario
Su Espacio
Modificar email y datos
Recordar Contraseña

7

Grupo de Estudio de los Trastornos
del Espectro Autista

No evidence, not recommended
Doman – Delacato
Irlen Lenses
Facilitated Communication
Psychodynamic Psychotherapy
Secretine
Antimycotic therapy
Quelation therapy
Sacrocraneal therapy
Animal assisted therapies

“allows the child to rid himself
progressively of its pathological
defense mechanisms against
archaic anxieties”

8

Grupo de Estudio de los Trastornos
del Espectro Autista

Weak evidence and only recommended in
experimental studies
Vitamins and nutritional supplements
Auditory integration
Sensory integration
Expressive psychotherapies
Gluten / Casein free diets

Grupo de Estudio de los Trastornos
del Espectro Autista

Weak evidence, but recommended
Fostering social skills
Alternative / augmentative communication
TEACCH System
Cognitive-behavioral therapy
SSRI in adults
Stimulants in ADHD + ASD

9

Grupo de Estudio de los Trastornos
del Espectro Autista

Efficacy evidence and recommended
Behavioral treatments
Risperidone

July, 2007

www.sign.ac.uk

10

THERE IS NOT A SINGLE
“ESPECIALIST” OF AUTISM

SOLUTION: CONVERGENCE OF
KNOLEWDEGE AND PRACTICE

11

DO THEY ADDRESS COMPLEMENTARY ASPECTS?

Behavioral

Sociocommunicative

TEACCH

Achieving
skills

Using
skills

Friendly
environment

Adapted to the child

GautenaNet

12

13

31

1 .1

46

po
p ro

d
se

p

...
es
g
a

s
ive
t
c
je
ob

+

le p
b
i
ss
po

on
ers

al

ti
je c
b
o

ves

14

IF
NT
E
ID

U
YO

TC

S
AS
D
N
EA
M
O

S
ES

IT

MP
SI

AC

NT
O
T

HE

O
RS
PE

N

PHARMAUTISME

Quality assurance system
Pre-established administration
& follow up routine guidelines
Information and consent
Temporary and adaptable

15

NEUROLÉPTICOS
Haloperidol
Clotiapina
Levopromazina
Clozapina
Risperidona
Zulopentixol
Periciazina
Olanzapina
Quetiapina
Aripiprazol

ESTABILIZADORES DEL ÁNIMO
Ácido Valproico
Carbamazepina
Carbonato de Litio

ESTIMULANTES DE LA ATENCIÓN
Metilfenidato
ANTIDEPRESIVOS
Imipramina
Clomipramina
Fluoxetina
Fluvoxamina
Paroxetina
Sertralina

ANSIOLÍTICOS
Diazepam
Alprazolam
Lorazepam
ANTIPARKINSONIANOS
Biperideno
OTROS

Clonidina
Propranolol

Versión TR - 2008

Drug therapy proposal
Informed Consent

Patient
Information

Entry Form
Professional
Information
Follow – up Form
Administration Form

PHARMAUTISME

Unit Forms

16

State of Virginia, USA (2007)
Children and youth older than age 8: 70%

Mayo Clinic, USA (2008)
124 children and adolescents: 52%

MEDICAID Review in USA (2008)
60.641 children and adolecents: 56%
0 –2: 18%
3 – 5: 32%

PEOPLE ON PSYCHOTROPIC MEDICATION
IN GAUTENA

100

90
80
70

%

60

10 years!!

50
40
30
20
10
0

1998
1998 1999
1999 2001
2001 2002
2002 2004
2004 2006
2006 2008
2008

17

PHARMAUTISME TR

Joaquín Fuentes
Ignacio Gallano
Irma Isasa
Mariví Cundín

&

Andrés Martin
Yale Child Study Center

www.pharmautisme.org

18

Convention on the Rights of Persons with Disabilities
50 articles

Excellent!!

19

AR

ND
U
O

00
0
.
5

OL
B
M
SY

ND
A
S

ER
H
OT

E

S ..
T
EN
M
LE

.

COMBINATION OF DIVERSE WAYS TO SECURE
HUMAN RIGHTS EMPOWERMENT

23%

56%
21%

In a group

Individual

Represented

20

DIMENSIONS OF QUALITY OF LIFE

Autodeterminación
Derechos
Inclusión social
Relac. interpersonales
Desarrollo personal
Bienestar Material
Bienestar Emocional
Bienestar Físico

Self-determination
Rights
Social inclusion
Interpersonal relations
Personal development
Material well-being
Emotional well-being
Physical well-being

Robert L. Schalock and Miguel Angel Verdugo (2002)

Map of relationships, favorite spaces, personal adaptations
in the spaces, personal properties, indicators of displeasure
or complaints, risks against confidentiality, using support
people, cultural and ethnic aspects, grief process, expression
of sexuality, situations the person can choose, safety risk,
trusted friends, adapted scheduling, activity limitations and
new opportunities, health situation.....

Indicators !!

21

“LIFE PROJECT”
My vision; our dream (myself + my L.A.R + others),
that is modified according to my life cycle transitions...
A plan, possible and adequate, to give quality to my life...
PCP

Strategy to elaborate the ISP

A tool for reaching my

LIFE PROJECT

ISO 9001

NCOR
National Center on Outcomes
Resources
Una guía para explorar la satisfacción con los servicios

ISMAPTM

PROVISIONAL SPANISH VERSION
EXPERIMENTAL DRAFT TO BE USED ONLY AT GAUTENA

1997

.REPRODUCTION AND/OR DISTRIBUTION IS FORBIDDEN
(March, 2002)

ISMAP

M O D E L O E U R O P E O D E L A C A L ID A D T O T A L (E F Q M )

R esu ltad os
en C lien tes

Liiderazgo

P erson as

P olítica
y
E strategia
A lian zas y
R ecu rsos

RESULTADO S

Pr oce dim ien tos

R esultado s
en
P ersonas
R esultado s
en la
So cieda d

Resultados clave

A G E N TE S F A C IL IT A D O R E S

Q
2008

IN N O V A C IÓ N Y A P R E N D IZ A JE

22

Population 700.000
Families: 439
Staff: 183 (62% FT)
Public Funding: 92%

T

K
N
I
H

C
A
,
G
BI

L
L
A
M
TS
GAUTENA

Clinic
“Autism” class
Group Home
Day Center
Leisure
Support to families
Short Stays

THE CONCEPT OF THE SUPPORT
TO THE CITIZEN

ETHICAL FRAMEWORK

QUALITY OF LIFE

EXCELLENCE IN THE MANAGEMENT
OF THE SUPPORT SYSTEM

23

RESEARCH: AN ETHICAL IMPERATIVE

+

GAUTENA

RESEARCH: AN ETHICAL IMPERATIVE
-Phenotype and genotype
- A “lab on a chip”
-Detection of Asperger Disorder
1 / 400

-Inmune Factors
-Hybrid vocal communicator

24

SWITZERLAND
“… diagnostic delay, lack of specialists, limited
regional support, average satisfaction with special
schools, lack of information, adults rely on their
families… negative judgement that things have
improved over the last ten years…”
La représentativité de cette échantillon pour toutes les personnes
atteintes d'autisme en Suisse ne peut pas être totalement confirmée.

Prof. Dr. H.-C. Steinhausen
Universität Zürich

Résumé des conclusions de l'enquête
(Autism Suisse Romande) 20-02-2006

GAUTENA

Muchas gracias

25




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