Autism & Public Policy

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Internet Resources

Examines the structural 'roadblocks' that lie in the way of implementing policy and providing education and care for children with autism.
Virginia Bovell, Cathy Tissot, Su Thomas
Which benefits a person may be entitled to and the amount they can claim will depend on the degree of the persons autism and their individual circumstances.
The APPGA wants a society where autism is understood fully and where people with autism spectrum disorders and their families are respected, supported and receive the same rights and entitlements as others.
All Party Parliamentary Group on Autism (APPGA)
The choices that families need to help persons with autism to reach their potential and maximize their participation in our culture must not be limited by any philosophy or ideology.
TEACCH
This summary reflects the comments and suggestions made by individuals who attended the Autism Listening Sessions sponsored by CDC in four regions of the U.S. (August - November 2004) and from individuals who submitted comments through the CDC website.
Centers for Disease Control, Office of the Director, Office of the Chief Science Officer
With autism the most important factor is to ensure that service provision is appropriate to individual need, and to always strive towards this goal.
Luke Beardon
People with autism and Asperger syndrome do not fit current ways of thinking about disability nor the eligibility used to measure support needs of people with disabilities and their families.
The blue badge scheme (formerly known as the orange badge scheme) exists to enable people who are severely physically disabled to park in spaces close to their destination and without having to pay
The plan promises to integrate mentally ill patients fully into the community by providing services in the community, rather than institutions. While some praise the plan's goals, others say it protects profits of drug companies at expense of the public.
Jeanne Lenzer, British Medical Journal
There is a need for a Canadian Autism Research Agenda that builds on our existing capacities and ensures the involvement of all key stakeholders, including families and communities.
Autism Society Canada
This information sheet has been formulated to assist in the implementation of the NHS and Community Care Act 1990. The contents are, however, applicable to all services, present and future, provided for people with autism.
New Labour wants social inclusion, but seems reluctant to fund special needs education. Is this not a form of segregation? (New Statesman)
Judy Hirst
Disability Living Allowance (DLA) is a benefit available to help with personal care and/or getting around. DLA is available to children and adults with a disability under 65 years old.
The health care purse is not a bottomless pit. In an ideal world, every health-care need would be fully funded, and every parent's sick child would be helped to the utmost. However, Ontario's autistic children are not being left high and dry. They will continue to have the intensive therapy funded until age six and then they will move on to therapeutic programs offered through the schools, says the Herald.
National Center for Policy Analysis
Highlights the process required through negotiation with local authorities, recruitment of staffing, legal obligations and the format of programme planning.
Isobel Sutherland
Describes some practical initiatives for people with autism and their families and to analyse the processes which led to their development.
Brenda Nally
Autism; Assessment Issues and Recommendations; Proposal for Intensive Behavioral Intervention (IBI) for Children with Autism; Q and A regarding IBI; Suggested Guidelines for Identifying Established vs. Experimental Treatments; Parent Supports
Tri-Counties Regional Center Clinicians/Managers' Subcommittee on Autism
Identifies the number of children reported to have ASD's in Scotland and types of educational placements; kinds of educational practice, highlighting any issues of satisfaction or concern expressed by parents and professionals; good practice.
Rita Jordan, Glenys Jones
Public assistance may be an essential partof an income packaging strategy for families with extraordinary private costs. To force these families to achieve full independence from means-tested programs would risk imposing other forms of hardship...
Marcia Meyers, Henry Brady, Eva Seto
Mothers of adult children with autism tend to be less depressed and anxious than mothers of adolescents with the neurological disorder. Many parents believe service options do not address the needs of their children,
This guide aims to help authorities fulfill their obligations under the United Nations Convention on the Rights of the Child (1989) and to provide a range of services to meet the needs of the individual child with an autistic spectrum disorder.
Rita Jordan, Glenys Jones, Hugh Morgan
The ultimate objective is that Canadian families with autism have access to the appropriate intervention regardless of their means and it means something covered under a public health insurance program and is usually referred to as covered under medicare. We understand that the jurisdictional issue is difficult, but we cannot allow the difficulty of that jurisdictional issue to stop us from doing what we know is right. It is appropriate for the federal government to show leadership, but it cannot be for the federal government to do alone.
Facing Autism in New Brunswick
This report examines the situation for adults with autism and Asperger syndrome, based on a large survey of NAS members and their families
An ISA is a formal agreement between an individual or family and a service provider for the provision of developmental services and supports funded by the Ministry of Community and Social Services.
Kevin Rodger
What we need is a continuum of services covering the needs of autistic people and based on centres that can provide diagnosis, assessment, education, social services etc. on an individual basis.
B.V. Sorensen
Wherever possible, parents should include examples of their Childs behaviour to illustrate particular points. Do not water it down, the DLA is a wholly negative form and you need to stress your case as strongly as possible.
The Draft Mental Incapacity Bill recognises that individual capacity for competent decision making fluctuates. Accordingly those concerned are required to take all possible steps to maximise capacity before decision-making powers are devolved to another person. The draft legislation suggests that maximising capacity will include offering support in the following areas: Understanding information relevant to the decision; retaining information relevant to the decision; using that relevant information as part of the process of making the decision; communicating that decision (whether by talking,using sign language or any other means). These are key issues, but we would add that the emotional environment, and the identifying and accessing of relevant information, are more basic. Because of their narrowly focussed interests and their problems with communication, people on the autism spectrum, both those who speak and those who do not, will in most cases benefit from support in all these areas. Just as they were for schools, we suggest deals should be negotiated for people of uncertain capacity to be equipped, at minimal expense, with accessible computers, peripherals and software.
Dinah Murray, Mike Lesser
Unless steps are taken to ensure that everyone of debatable capacity has access to information technology, the Government's stated goals of empowerment and inclusion for all will not be achieved.
Dinah Murray, Mike Lesser
The conclusions of the ANDEM report concerning assessment of the efficacy of different therapies and methods of managing autistic persons stress the inadequacy of studies evaluating most of these programmes.
The base model inappropriately presumes that the ASD path is a disease state that requires mental health intervention
Although all persons with autism share major difficulties in the normal acquisition of social, imaginative and communicative skills, all of them have significant individual differences which have to be taken into account.
Joaquin Fuentes
Study of the service delivery system for individuals with Autism and the families of individuals with Autism in Indiana.
Indiana Commission on Autism
We have now funded a total of eight centers under the Studies to Advance Autism Research and Treatment (STAART) Centers Program, exceeding the complement of five centers required by the Act.
National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services
Examines educational provision for pupils with ASD, and highlighted the diversity of policy and practice relating to ASDs between LEAs, and noted that without a requirement to collect data, LEAs are unable to plan their provision effectively
These guidelines support the mission of early intervention, promote consistency in service delivery across the state and most importantly, address the specific needs of children with autism spectrum disorders and their families.
Susan Evans, George DiFerdinando, Department of Health and Senior Services, New Jersey Early Intervention System
Protection and Advocacy; Social Groups; Educational Resources; Developmental Disabilities; Planning; Vocational Rehabilitation Centers; Insurance Departments; Parent Training resources
Appropriate, consistent and continuous care is needed for the growth of the person with autism, so teamwork is important in relaying care from one stage to the next.
Uichi Furukawa
Results of the NAS Avon Asperger Syndrome Project 1999-2002, funded by the Department of Health.
Helping people with autism requires an extraordinary, almost impossible, effort from our imagination.
Theo Peeters
The hospital must adapt to the children, and not the contrary. But the hospital can best fulfill its role when autistic patients, prepared by this highly personalized approach, can be assessed by the medical teams under the best possible conditions.
Bernadette Roge
A training program utilizing a variety of assessment and intervention experiences designed to enhance professionals' awareness, knowledge, and skill when serving children with ASD and their families.
Every person requires unique support, in their local community, where their potential and lifestyle preferences are acknowledged and encouraged.
Mary McGuire

Opinions expressed by the authors of pages to which this site links do not necessarily reflect this site developer's opinions. In other words: Sublime or ridiculous? You decide!
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