Many of the materials in this section were gleaned as part of a survey of best practices for adult services for people with Fetal Alcohol or Autism Spectrum Disorders.
*Note: These contents are assembled from several web sites, some of whom are now defunct. Although I have the documents in my records, I've provided the current links to available items. Copies of material from defunct sites, as well as my works, are provided below. Copyright belongs to the authors and/or publishers of the material according to the information contained in the documents. An internet search of the titles or of content from the material should be made for referencing purposes. The owner of this web site only claims authorship where indicated within the material.
2005 IACC Autism Spectrum Disorder (ASD) Services Roadmap — a national action plan for ASD service development and delivery
2008 Report Of The Nevada Autism Task Force An Action Plan For Nevada’s Legislators And Policymakers — ways to improve the delivery and coordination of autism services in the State.
A Better Future A consultation on a future strategy for adults with autistic spectrum conditions — This consultation document seeks views about the focus and priorities to be contained in the forthcoming government strategy for autism. The consultation identifies five key themes: social inclusion, health, choice and control, awareness raising and training, and access to training and employment.
Access for All Customers: Universal Strategies for One-Stop Career Centers, 2009 — One-Stop Career Centers serve a diverse range of customers. These include individuals with a variety of educational and work backgrounds, people from diverse racial, linguistic and ethnic cultures, as well as individuals with a wide range of disabilities and support needs... A more effective way to serve this broad customer pool is to provide One-Stop services according to the principles of what is known as "universal design," using common strategies that benefit many groups.
Adult Autism Issues in Waterloo-Wellington, Ontario, 2004 — adults with ASD have been neglected in recent years, as most funding, resources, and attention currently go to children
Adult Protective Services in 2012: Increasingly Vulnerable — Adult Protective Services (APS) are social services provided to abused, neglected, or exploited older persons and/or adults with disabilities.
Adults and Autism Spectrum Disorder (resource list)
Alberta experts leading research on fetal alcohol spectrum disorder, CBC 2009
Alberta Fetal Alcohol Spectrum Disorder (FASD) CrossMinistry Committee 2009-2010 Annual Report — The plan is designed to provide servicesin the areas of awareness and prevention, assessment and diagnosis and supportsforindividuals and caregivers
A Pilot Community Intervention for Young Women with Fetal Alcohol Spectrum Disorders, 2004 — Improved outcomes (including decreased alcohol and drug use, increased use of contraceptives and medical and mental health care services, and stable housing) were obtained by implementing a community intervention model of targeted education and collaboration with key service providers, and by using paraprofessional advocate case managers as facilitators.
A Protocol for Transitioning Students with Exceptional Needs from School to Community — Interactive Roles and Time Lines In Transition Planning - Website http://www.edu.gov.mb.ca/k12/docs/policy/transition/web/index.html This site describes the roles of transition planning partners and the timelines for important steps in the planning process for students with exceptional needs who may require adult programs and services after completing high school.
ARRAY of ABILITIES In a person with typical FAS symptoms
A Scrutiny Review of the services provided to adults with Autistic Spectrum Disorders in Cumbria, 2007 — The review found a number of good examples of innovative practices and the introduction of relevant countywide procedures
Autism and Abuse: Implications for Adult Protective Services, 2008 — ppt quick view with option to download original
Autism and Asperger Syndrome: strategies to promote prosocial behaviours, 2000
Autism Behavior Checklist — The ABC is designed to assist the social service worker in determining if further investigation is necessary due to suspected abuse
Autism Ontario (2008). FORGOTTEN: Ontario Adults with Autism and Adults with Aspergers — a paper to inform current Ontario public policy on adolescents and adults with Autism Spectrum Disorders (ASDs).
Autism resources from EnviroNewsScans — Misc info from 2008
Autism Society of America Position Paper on The National Crisis in Adult Services for Individuals With Autism, 2001 (updated 2007) — There is now a national crisis in services for adults with developmental disabilities, especially residential services, and especially for those with autism. The most critical issue is woefully inadequate funding.
Autistic Spectrum Disorders Report-Maine-2009 — People with Autism Spectrum Disorder (”ASD”) and their families want a voice in the community more than anything else. While services are essential links for a life, services are not a life. Being able to participate in the community, have a job or vocation, go to post-secondary education, shop, go to a movie, get appropriate medical care, have friends, live in their own home with supports if necessary, have protections under the law – these are some of their expressed needs and desires.
Benefits and employment support schemes to meet the needs of people with an Autistic Spectrum Disorder, 2008 — The National Audit Office (NAO) commissioned the Centre for Economic and Social Inclusion (Inclusion) to undertake a study on benefits and employment support schemes to meet the needs of people with an autistic spectrum disorder (ASD).
Best Practices for Designing and Delivering Effective Programs for ASD, California, 1997 — The purpose of this document is to define and clarify issues in providing appropriate and effective interventions for individuals with autism and autism-related disorders.
Best Practices in Vocational Transition Assessment for Adults with ASD, Dr. M. Kay, 2008 — Presentation
Better services for people with an autistic spectrum disorder: A note clarifying current Government policy and describing good practice, UK, 2006 — This document clarifies the nature and intent of existing government policy as it relates to adults with an Autistic Spectrum Disorder (ASD). It is intended to encourage people in the social care and health field to develop local agendas for action.
Breaking the Cycle: Measures of Progress 1995-2005-BTC JFAS Report — This report reflects the combined efforts and commitments of researchers, evaluators, service providers, community partners, and service recipients, all of whom have played a role in improving services for substance-involved mothers and children through evaluation.
Commissioning Services for People on the Autism Spectrum Policy and Practice Guidance, 2008, Scotland — The economic consequences of autism in the UK have been outlined in a recent report which can be accessed at the following link. http://www.learningdisabilities.org.uk/publications?EntryId=28948
Directory of FASD Information and Support Services in Canada, 2005 — a listing of organizations and individuals that provide an FASD-related service or initiative in Canada
Directory of Fetal Alcohol Spectrum Disorder (FASD) Information and Support Services in Canada — Revised 2008
EDUCATING STUDENTS WITH FETAL ALCOHOL SYNDROME OR FETAL ALCOHOL EFFECTS
Enhancing Government Accountability for Disability Issues, M. Prince, 2004 — ppt in Google quick view
Entrepreneur Thorkil Sonne on what you can learn from employees with autism, 2008 — Thorkil Sonne realized that his young autistic son possessed an extraordinary memory and a remarkable eye for detail ... qualities were critical in software testers. So he went out on his own and launched Specialisterne, a Copenhagen-based software-testing firm that now has 51 employees, including 37 with autism
FAS Community Resource Center — Training is available on all aspects of Fetal Alcohol Spectrum Disorders, including community awareness, prevention, and intervention.
FAS Community Resource Center, Alaska — provides information on Fetal Alcohol Spectrum Disorders (FASD), a term that inlcudes Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Alcohol Related Birth Defects (ARBD), and Alcohol Related Neurodevelopmental Disorder (ARND), with a focus on intervention techniques for educators.
FASD Challenges in the. Adult World. Potholes in the Road to. The Ideal System of Care. Rob Wybrecht, 2006 — ppt quick view
FASD Connections — FASD Connections is committed to building a community in which adolescents and adults with Fetal Alcohol Spectrum Disorder are included and encouraged and where their desire and potential is supported; where the experience of families is understood, acknowledged, and accepted; and where systems are equipped to respond in an informed, compassionate and responsible way.
FASD Support Network of Saskatchewan — a community based parent-led provincial organization.
Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis, CMAJ, 2006 — A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated current approaches to diagnosis to reach agreement on a standard in Canada. The purpose of this paper is to review and clarify the use of current diagnostic systems and make recommendations on their application for diagnosis of FASD-related disabilities in people of all ages.
Fetal Alcohol Spectrum Disorder - Across the Lifespan - 2009 conference — The Importance of Recognizing All Co-occurring Issues
Fetal alcohol spectrum disorders A guide for healthcare professionals June 2007 — The report aims to raise awareness of FASD by examining the incidence, cause and outcomes of the range of disorders associated with alcohol consumption during pregnancy. It further outlines the responsibilities of healthcare professionals and the wider medical community in managing and reducing the incidence of these disorders.
HOW FETAL ALCOHOL SPECTRUM DISORDERS CO-OCCUR WITH MENTAL ILLNESS — Even though diagnoses of FAS and FAE are not common in the mental health field, mental health problems are the most prevalent secondary disability that afflict individuals with FAS. —Ann Streissguth, in Fetal Alcohol Syndrome
I Exist -The message from adults with autism in Scotland
I Exist - The message from adults with autism in Wales
Improving Treatment and Support for Yukon Girls and Women with Substance Use Problems and Addictions — s. A summary of existing key Canadian and international literature on best practices in the treatment of girls and women with substance use problems was completed.
Innovative Models and Best Practices in Case Management and Support Coordination, 2008 — This Policy Research Brief describes models, innovations, and best practices in case management and support coordination for persons with disabilities. The approaches presented here were identified during a study exploring the redesign of case management services for people with disabilities in Minnesota, and have broader applicability to other states as well.
Inquiry into transition to adulthood for young people with autism, Amanda Allard, June 2009 — For all young people, the transition from childhood to adulthood involves consolidating identity, achieving independence, establishing adult relationships, and finding meaningful occupation. For disabled young people, this transition is made more difficult by concerns about if and how their support needs will be met.
Interventions for Adolescents and Young Adults with Autism Spectrum Disorders, 2012 — The goal of this review is to examine the effects of available interventions on adolescents and young adults with ASD, focusing on the following outcomes: core symptoms of ASD (impairments in social interaction, communication, and repetitive behavior); medical and mental health comorbidities; functional behaviors and independence; the transition to adulthood; and family outcomes.
Jurisdictional and Literature Review Services and Supports for Adults with PDD or FASD September, 2009, Duncan Blackman — A jurisdictional and literature review was conducted to identify best practices for community supports for adults with PDD (i.e., ASD) or FASD who do not have intellectual disabilities and yet are severely lacking in adaptive behaviour skills.
Lessons Learned from Supporting Individuals with ASD Having Complex Needs
Lessons Learned from Supporting Individuals with Autism Spectrum Disorder Having Complex Needs, 2010
Lifeguard Strategies For Supporting Adolescents and Adults Affected by FASD, 2006 — Developed as part of a workshop Strategies for Supporting Youth and Adults with FASD within Community Social Services
Meeting the health needs of people with learning disabilities Guidance for nursing staff, 2011 — This updated guide has been developed to support registered nurses and nursing students in primary and secondary care, who are trained in fields other than learning disabilities, to deliver high quality health care to people with learning disabilities
National Organisation for Foetal* Alcohol Syndrome UK (NOFAS-UK) — see links to the Fetal Alcohol Forum - International Medical eNewsletter and other useful resources
National Organization on Fetal Alcohol Syndrome (NOFAS) — NOFAS effectively increases public awareness and mobilizes grassroots action in diverse communities and represents the interests of persons with FASD and their caregivers as the liaison to researchers and policymakers. see State Resource Directory at http://www.nofas.org/resource-directory/
National Training Library for APS and Elder Abuse Inventory List — Resource list
New Jersey Adults with Autism Task Force report 2009 — a report that presents a broad range of recommendations aimed at filling gaps and meeting unmet need.
New Zealand Autism Spectrum Disorder Guideline, 2008 — The NZ Autism Spectrum Disorder Guideline is based on overseas and New Zealand evidence, experience and practice. It has information for people with ASD, their families, health professionals, support service providers and those involved in education.
Parenting Guidelines for Families of Children with FAS/FAE FINAL REPORT June 30, 2006 — One of the fundamental principles of the Parenting Guidelines for Families of Children with FAS/FAE Project was to ensure that the voices of the individuals who care for children with FASD are heard, both in terms of the needs associated with caring for a child with FASD as well as how those needs can best be met (referred to as “best practices”).
PAY NOW OR PAY LATER AUTISM FAMILIES IN CRISIS, 2007 — The Standing Senate Committee on Social Affairs, Science and Technology (Canada) Final Report on: The Enquiry on the Funding for the Treatment of Autism
Planning for Students with Fetal Alcohol Spectrum Disorder A Guide for Educators, 2004, Saskatchewan
POLICY FORUM: AUTISM ACROSS A LIFESPAN February 5 and 6, 2009 — This year’s forum differed from last year’s by focussing on older children (above five years) and adults. The forum paid particular attention to transitions over a lifetime of autism.
Positive Practice, Positive Outcomes: A handbook for professional in the criminal justice system working with offenders with a learning disability, 2011 — A best practice handbook from Offender Health and Valuing People providing information, practical advice, sign-posting and best practice examples for criminal justice professionals working with offenders with learning disabilities and learning difficulties.
Psychiatric and psychosocial problems in adults with normal-intelligence ASD - 2009, BMC Psychiatry-BioMed Central - Full text — The objective of this paper is to describe the clinical psychiatric presentation and important outcome measures of a large group of normal-intelligence adult patients with ASDs.
Psychiatric services for adolescents and adults with Asperger syndrome and other autistic-spectrum disorders, 2006, Royal College of Psychiatrists London — Autistic-spectrum disorders are a complex group of developmental disorders. They often require psychiatric involvement in their diagnosis, particularly as they are associated with a high frequency of comorbid psychiatric disorder, colouring their presentation and complicating their management.
SAMHSA Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence — provides information and resources about FASD.
Service Delivery for Adolescents and Adults with FASD, Jan Lutke
Services for adults with autistic spectrum conditions (ASC): good practice advice for primary care trust and local authority commissioners, 2009 — This good practice advice for PCT and local authority commissioners builds on Better Services for People with an Autistic Spectrum Disorder and is part of a programme of work to ensure that people with autistic spectrum conditions receive the right support to live life independently and to the full, exercising choice and control over decisions that affect their lives.
Supported Decision Making - A guide for supporters, UK, 2008 — This guide offers people best practice techniques and tools that may be useful when supporting others with their decision-making. This includes those people who make their own decisions and those who may lack the capacity to do so and where decisions are made in their best interest. More resources at http://www.paradigm-uk.org/
Supported Residential Services For Adults with Fetal Alcohol Spectrum Disorder, 2008 — Adults with FASD or a high likelihood of the disability pose unique housing challenges. Due to many secondary disabilities that often accompany this disability (criminal justice involvement, addiction issues, high risk of victimization, loneliness and unemployment) many of these adults need much more than just a roof over their heads.
Supporting College Students with Asperger's Syndrome, 2010 — Little has been written to date about both the nature of Aspergerís Syndrome (AS) for college-aged individuals or about strategies and therapies for helping at this age level.
Supporting College Students with Asperger Syndrome — many professionals working in higher education find themselves ill-equipped and unprepared to address and manage the cognitive, social, executive functioning and behavior deficits that impact a student with AS ability to succeed in an academic environment
Supporting decision making A guide to supporting people with a disability to make their own decisions, AU, 2012 — This guide recognises and supports a human rights-based approach to services for people with a disability. It has been developed as part of the Victorian Government’s reorientation of disability services to self-directed approaches and to make it easier for people with a disability to pursue individual lifestyles
Supporting people with autism through adulthood, 2009, National Audit Office Report — This report examines the range of services for adults with autism and their carers in England, including health and social care, education, benefits and employment support.
Supporting Students with Asperger Syndrome in Higher Education — This information sheet is for staff in higher education establishments and universities who currently, or who may in the future, support students with Asperger syndrome or high-functioning autism (HFA). This information is adapted from literature provided by the National Autistic Society.
Taking Responsibility Good practice guidelines for services – adults with Asperger syndrome, 2002 — These guidelines are for use by services that have a responsibility to meet the needs of adults with Asperger syndrome. This includes social care, health, housing, secondary schools, colleges, universities, Connexions, employment and other agencies.
The 6th International Conference on Fetal Alcohol Spectrum Disorder Research: Results and Relevance 2015 — Check link for conference proceedings.
The Best Journey to Adult Life" for Youth with Disabilities: An Evidence-based Model and Best Practice Guidelines for the Transition to Adulthood for Youth with Disabilities,2009 — Best Practice Guidelines for the transition to adulthood for youth with disabilities have been written using the words of youth, parents, community members, service providers, educators and researchers in Ontario, Canada.
the economic consequences of autism in the UK, 2007 — The purpose of the research detailed in this report was to estimate the full costs of autism spectrum disorders (ASDs) in the UK.
The Kentucky Commission on Autism Spectrum Disorders — site includes: KY ASD Comprehensive State Plan- A Vision for all Kentuckians with Autism Spectrum Disorders at http://chfs.ky.gov/NR/rdonlyres/409D047E-FC53-4943-9CF3-CE89FF1B7DC5/0/final.DOC
The Saskatoon Supported Housing Project for Persons with FASD, 2006 ppt
Think differently - act positively Public perceptions of autism in Scotland
Towards best practice in the provision of respite services for people with intellectual disabilities and autism, 2007, IE — This Report, commissioned by the National Parents and Siblings Alliance, is a useful attempt to establish what is “best practice” in relation to respite care and suggests a number of key principles for progress in the future.
Uncovering the Message of the Nonverbal Older Adult — Useful points for people with communication difficulties