Autism Rights' Proposals for Autism Services in Scotland, January 2008
Autism Rights has been established to campaign for major changes to legislators’ and service providers’ approach to the problems faced by all persons with an Autistic Spectrum Disorder (ASD) as follows:-
(1) The Scottish and UK governments must take full account of the implications of the European Charter for Persons with Autism in all of their legislation, regulations and policy.
(2) A Unique Disability
Autism must be recognised at all levels of government for what it is - a disability that is unique.
Autism is a developmental disability, where people with autism can often have average to above average IQs, but severe impairments in communication, social interaction and imagination, i.e., a complex, usually severely disabling disorder. Too many of the physical and mental health problems that beset children and adults with an ASD are directly caused by the damage inflicted by inappropriate medical intervention and education systems which continue to see autism as merely mental retardation and/or inappropriate behaviour, perhaps with a few additional add-ons, rather than as a unique disability.
(3) Standards in Service Provision
Competence management systems must be put in place to ensure the establishment and development of demonstrable Autism specific professional and technical competence in all service sectors and at all levels of decision making for the delivery of autistic specific services. Effective services for autistic children and adults will never be delivered consistently unless service providers are required to operate to standards which are properly enforced and have been drawn up specifically for people with an ASD (i.e. are autism specific), and which are realistically open to legal challenge, should they fail to operate to the appropriate standards. Professional level training leading to professional level qualifications must be provided for all professionals involved with people with autism. For instance, it is unacceptable that day release courses should be deemed adequate training for a teacher who is teaching children with a severe and complex disability.
(4) Assessment of Need
The various assessments of need must be made quite independently by persons and/or organizations which are not responsible for the provision of services, otherwise assessment of needs will continue to be tailored to match the service providers' currently available resources and the actual needs of the person with an ASD will neither be accurately recorded nor be properly met. Furthermore, Health, Education and Social Service assessments must be completed separately and independently of each other within clearly defined timescales. Service providers must then coordinate and deliver the services required to meet the previously identified needs of the individual. The European Charter of Rights for Persons with Autism stipulates that diagnosis and assessment should, at least in part, be undertaken by those who do not have a conflict of interest.
Financial resources must be increased, to make appropriate provision for the widely varying needs of people on the autistic spectrum. It should not be possible to divert funding reserved for people with ASD to other sectors within local authorities or health boards. Resources must be allocated to the individual child or adult whose needs are being addressed (known as `backpacking`) - not merely to the organisation that is responsible for delivering services.
(6) Health – A Basic Right
The special health problems (e.g., gastrointestinal, immunological and toxic overload) that afflict so many people with autism must be officially recognised and appropriate health care provided, whether in the form of dietary assistance, nutritional supplementation or other medical interventions. There is a growing body of evidence supporting an improvement in learning capacity amongst people with autism who receive such care. The ongoing de facto refusal of the NHS to thoroughly examine/investigate the above mentioned disorders experienced by anyone with an ASD is a national disgrace which is preventing the collection of valuable evidence that might lead to worthwhile treatment and possible amelioration of autistic traits. Meanwhile this policy conveniently allows the medical establishment to justify inaction by claiming that ‘there is no evidence’ of a possible connection between autism and any physiological disorder. The extension of this policy is a shift towards the use of dangerous pharmaceutical drugs to control people with ASD, which is in direct conflict with the European Charter (see (1)).
(7) Education – a Basic Right
The rights of disabled children to an appropriate education must be effectively policed and enforced by Ministers of the Scottish Government. Parents should not have to police and prosecute educational service providers to enforce delivery of the rights of disabled children. Even if parents have succeeded through appeal in achieving a good CSP and/or IEP which detail the child's actual needs, a local authority cannot be forced in practice to meet any of those needs until a parent wins a placement at a school of their choice through an ASL Tribunal. In the past, the placement process has taken up several years of a child's statutory schooling. Given the loopholes in and inadequacies of the Additional Support for Learning (ASL) Act, timescales will not greatly improve, even for those children whose parents have the resources to make a case for specialist provision. Quite apart from the severe detrimental effect of years of inappropriate educational provision, most parents are unable to sustain the financial and other costs of such a struggle. The ASL Act denies children with ASD their basic right to an education and specifically denies them legal aid to make a proper case at Tribunal, contrary to the European Charter of Rights for Persons with Autism. The ASL Act is seriously flawed and requires repeal or extensive amendment now. Until such time as the statutory education of children with ASD is worthy of the name, all other rights, such as those to further education, training and employment, are absolutely meaningless.
(8) Real Parental Involvement
Parents of adults with ASD must have open access to the service provision for their sons or daughters, as the first line of defence against abusive or inappropriate provision, and to enable the essential exchange of information between home and service provider. Parents must have open access to their child's school and teachers, as continually recommended by government guidance on good practice.
All too often, parents of autistic children find that the opposite applies, and that basic information on the education of their child is not readily available and in too many cases is wilfully withheld. As such, the worsening behaviour and stress of their child may be the most telling confirmation to a
parent of the unsuitable nature of the education being delivered. Given the extreme vulnerability of children with autism, it is absolutely essential that parents should be able to clearly establish what is happening to their child in school. Parents of adults with ASD have reported being prevented from having access to their son or daughter, or to those professionals in charge of their care, or to specific areas within the locations used for service provision.
(9) A Strategy for Investigating the Causes of ASD
The UK and Scottish governments do not have a coherent strategy for researching the causes of the recently increased incidence of Autistic Spectrum Disorder in the population and therefore no strategy for reducing the incidence of ASD. Westminster and Holyrood must urgently establish such a strategy.
(10) Involvement in Decision-Making At All Levels
Autistic people and their carers should be fully involved in the decision making that affects their lives, both as individuals and collectively as people affected by a disability - e.g., through representation on official bodies, such as the new ASL Tribunals, Local Area Health Boards and with formal access to local Education and Social Services Committees, etc. In addition, the Cross Party Group on Autistic Spectrum Disorder, which was precipitately closed down during the last Administration, needs to be urgently re-established to facilitate direct access to MSPs by those members of the electorate and their families and carers who are affected by autism and can accurately describe what life is like ‘at the coal face’. They, and only they, can explain from service user experience the practical, albeit sometimes unforeseen, effects of legislation and suggest ways and means of improving unsatisfactory situations. Sadly, and despite the good work that is being done by the National Autistic Society and Scottish Society for Autism, neither of these organisations has demonstrated a willingness to grasp the nettle of vigorously presenting many of the disagreeable facts of life which seem to be unpalatable or embarrassing to MSPs and Administrators, who remain ignorant of the need for radical legislatory action.
Standards, Enforcement, Accountability and Rights
Until we have standards of service provision that are specific to ASD, enforcement of those standards by government and its agencies, service providers that can be held directly accountable by service users, government and, in the final resort, by the legal process, we will continue to see systemic failure in services for people with ASD and their families and denial of their human rights.
Repeal and Amendment of Regressive Policy and Legislation
All of the above proposals are predicated upon the repeal and amendment of regressive policy and legislation passed by the Scottish Parliament in its first two sessions, as identified in the Autism Rights Briefing Paper of April 2007 - http://www.autismrights.org.uk/BriefingPaperIndex.html The policy and legislation detailed in the Autism Rights Briefing Paper has significantly eroded the human rights of people with ASD and their families.
'EQUAL RIGHTS - NOT ENDLESS FIGHTS'
One parent summed up our feelings about `the system` - "It just seems to me that, over the years, we have spent more and more money employing more and more people to stop our children getting the things they need."