Rights of Individuals with Autism in Brunei
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- Parent Category: Autism Spectrum Disorder
- Created on Wednesday, 12 August 2009 10:25
- Published on Wednesday, 12 August 2009 10:25
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Rights of individuals with Autism in Brunei Darussalam:
By Debbie Smith, Consultant to SMARTER Brunei
In 1996, the European Parliament adopted a charter of rights specifically for individuals with autism. It is reproduced here, showing how SMARTER (Society for the Management of Autism Related issues: Treatment, Education and Resources) Brunei meets each of the charter items:
1. THE RIGHT of people with autism to live independent and full lives to the limit of their potential;
SMARTER Brunei recognizes these rights in their Vision and Mission Statements:
Vision: To have an Autism Friendly Society that enables our children to adapt and live independently with dignity
Mission: Every individual with Autism of SMARTER Brunei will develop and grow to be an independent, contributing and productive member of Society
2. THE RIGHT of people with autism to an accessible, unbiased and accurate clinical diagnosis and assessment.
SMARTER Brunei will only accept individuals who have had a diagnosis of autism issued by the Child Development Centre (CDC) of the Ministry of Health. This is accessible to all children in Brunei, even the children of expatriate families. The diagnosis is unbiased, as the CDC does not diagnose in order to generate a client base for itself - there is no benefit to CDC in diagnosing ASD in an individual. CDC depends on a comprehensive multidisciplinary approach to clinical diagnosis and assessment.
3. THE RIGHT of people with autism to accessible and appropriate education.
The Ministry of Education in Brunei Darussalam has an inclusive policy towards education, providing all children with access to appropriate inclusive education. SMARTER Brunei has a comprehensive range of programmes specifically designed for individuals with autism, and also supports SMARTER members in inclusive settings by providing in-service and information to teachers, reciprocal visits by staff and information regarding current status and programming goals, activities and resources
4. THE RIGHT of people with autism (and their representatives) to be involved in all decisions affecting their future; the wishes of the individual must be, as far as possible, ascertained and respected.
SMARTER Brunei involves families actively in all planning for individuals. Individuals are involved wherever possible, and parent/family involvement is an integral part of planning in the short, medium and long term. Individual Programme Plans (IPP) are developed every three months at an IPP Planning Meeting involving the Individual with Autism (where possible), the parents or family representative and teacher. The planning leads to an IPP Agreement, signed by the family and teacher as a true and accurate record of the IPP meeting.
5. THE RIGHT of people with autism to accessible and suitable housing
In Brunei, family members are likely to live together in an extended family arrangement, where it is considered usual for children to remain within the family home, even after they are married in many cases. This approach is the one likely to be followed by individuals with autism - remaining at home with their family not because there is no other option, but because this is considered usual within this society. SMARTER Brunei is extending their premises to include accommodation that would be used for visitors and for family respite. If individuals with autism were interested in pursuing independent or shared living arrangements, it is possible that they could trial this arrangement within the safety of the SMARTER "family" -staff of the organisation would be living in accommodation within the same building and so would be available to support such an endeavour.
6. THE RIGHT of people with autism to the equipment, assistance and support services necessary to live a fully productive life with dignity and independence
SMARTER Brunei develops all of the programmes that it offers based on best practice in terms of both services offered and assistance provided, and utilising the most up to date equipment and resources that are available. SMARTER keep up to date with what is available by reading relevant research and published materials, attending conferences, inviting consultants and by belonging to recognized autism organisations.
7. THE RIGHT of people with autism to an income or wage sufficient to provide adequate food, clothing, accommodation and the other necessities of life.
SMARTER Brunei had developed the Brunei Autism Centre for Adults (BACA), which is an education, growth and development centre individuals with autism as they grow into adolescence and adulthood. Programmes at BACA assist individuals with autism in acquiring competency functional academics, work skills and work ethics, providing a focus on preparing individuals for future employment, so that they will be able to provide for themselves.
SMARTER Brunei is developing a system of SMARTER family companies that will provide employment in an autism friendly environment. In addition to the safe and supported nature of these companies, SMARTER also plans to ensure that the individuals with autism who work within the companies will hold shares in those companies, giving them additional long term financial security.
SMARTER Brunei is an organization for individuals with autism and their families, run by those families. The individuals with autism were all quite young when SMARTER began, and decisions about service provision and management have been made by the SMARTER families for their children. As the individuals with autism grow into adolescence and adulthood they are being encouraged to fully participate in determining the services they need or want. Services are continually being developed to meet ongoing needs, and options available are carefully explained. The expansion of vocational and employment options are being managed to meet the interests of those who will be involved, now and in the future.
9. THE RIGHT of people with autism to appropriate counseling and care for their physical, mental and spiritual health; this includes the provision of appropriate treatment and medication administered in the best interests of the patient with all protective measures taken.
SMARTER Brunei approaches all aspects of its operation using the CUES (Compassion, Understanding, Empathy and Support) system it has developed. In this supportive framework, individuals and nurtured and supported in the development of the 7 essential independent living skills identified by SMARTER:
- Personal management
- Home management
- Leisure & spiritual management
- Academic management
- Vocational management
- Employment management
- Family life management
SMARTER utilizes best practice in the development of all programmes and services provided, and Duty of Care is always paramount. Close collaboration with the Ministry of Health and other professional working with the individuals with autism will help ensure that decisions made about medication and other treatment regimens always takes the best interests of the individual with autism into account.
10. THE RIGHT of people with autism to meaningful employment and vocational training without discrimination or stereotype; training and employment should have regard to the ability and choice of the individual.
BACA has been developed to assist adolescents and adults with autism to meet their full potential, by providing them with vocational, employment and life skills training that reflects the abilities and choice of each individual.
11. THE RIGHT of people with autism to accessible transport and freedom of movement.
SMARTER Brunei is committed to ensuring that individuals with autism have freedom of movement and access to transport options. Many families in Brunei utilise the services of a driver, and this mode of transport would be available to many of the individuals with autism. SMARTER assists by providing transport if families are not able to provide transport themselves. For example, transport to and from BACA is provided on a daily basis for three individuals who live some distance away, and who may not be able to otherwise attend the centre.
12. THE RIGHT of people with autism to participate in and benefit from culture, recreation and sport.
SMARTER Brunei has a comprehensive Community Adaptation programme, ensuring individuals with autism are provided with support to enable them to access a wide variety of culturally appropriate activities and recreational and sports opportunities. There are plans to incorporate a social club and recreational centre within the new premises, for individuals with autism and their families to share and enjoy.
13. THE RIGHT of people with autism of equal access to and use of all facilities, services and activities in the community.
The Community Adaptation programme developed by SMARTER Brunei is giving individuals with autism opportunities to explore and experience what the community has to offer them in terms of facilities, services and activities. In addition, the awareness campaign SMARTER pursues within the community heighten awareness of autism, and encourages the community to actively include individuals with autism in the routine and rhythm of community life.
14. THE RIGHT of people with autism to sexual and other relationships, including marriage, without exploitation or coercion.
SMARTER sees Family Life Management as one of its 7 Essential Independent Living Skills, and support is provided to individuals with autism to develop healthy relationships with others, in line with the cultural and faith-based framework of the country.
15. THE RIGHT of people with autism (and their representatives) to legal representation and assistance and to the full protection of all legal rights.
SMARTER Brunei works actively to support the rights of individuals with autism and their families, and works tirelessly to ensure that the community develops and maintains understand and compassion toward those with autism.
16. THE RIGHT of people with autism to freedom from fear or threat of unwarranted incarceration in psychiatric hospitals or any other restrictive institution.
Ongoing Community Awareness programmes provided by SMARTER Brunei work to ensure that the society understands the nature of autism, and the nature of education, training and support that will nurture individuals with autism to reach their full potential.
17. THE RIGHT of people with autism to freedom from abusive physical treatment or neglect.
The focus on best practice and the Compassion, Understanding, Empathy and Support (CUES) system practiced by SMARTER have been developed to ensure that individuals with autism are not neglected, or subjected to treatments that place them at risk of harm
18. THE RIGHT of people with autism to freedom from pharmaceutical abuse or misuse.
SMARTER Brunei do not prescribe medication, but they do work closely with the Ministry of Health, and liaise with other consultants in pharmaceutical practice to ensure that individuals with autism and their families are fully informed of the benefits and potential side effects of proposed pharmaceutical intervention.
19. THE RIGHT of access of people with autism (and their representatives) to all information contained in their personal, medical, psychological, psychiatric and educational records.
SMARTER Brunei utilises a comprehensive cycle of planning, evaluation and reporting, and this data is available for the individual with autism or appropriate family representatives to access and discuss at any time.. Data is gathered through Daily Checklists, and this data is carefully analysed and evaluated to determine progress in Individual Programme Plan (IPP) goals and Monthly and weekly learning objectives. This data is synthesised and reported in Weekly and Monthly reporting cycles. The Monthly reports are used as the basis for the IPP Agreement which is made between the family and SMARTER each quarter.
Debbie Smith