AUTISIM FAMILIES

 

100 Days Kit, Autism Speaks

This kit provides information to help families get through the first steps of an autism diagnosis.

 

Autism Source, Autism Society of America (ASA)

ASA’s Autism Source is a database of resources in local communities. It includes contact information for ASA chapters and other local supports.

 

Autism NOW
Autism Now is an initiative of The Arc and The Administration on Developmental Disabilities. This national autism resource and information center is a central point of resources and information for individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, and other key stakeholders.

 

Autism Wandering Awareness Alerts Response Education (AWAARE)

Working to prevent wandering incidents and deaths within the autism community.

 

Department of Education

The Department of Education (ED) has resources to assist with the educational needs of children with autism spectrum disorders and other disabilities. 

 

The ED’s Special Education Technical Assistance and Dissemination Network links to a variety of websites and online resources that focus on special education issues, such as policy, technology, curriculum, and parent trainings. In addition, the Office of Special Education and Rehabilitative Services (OSERS) within the ED has resources for parents and individuals, school districts, and states in the areas of special education, vocational rehabilitation, and research.

 

Life Journey Through Autism Series, Organization for Autism Research (OAR)
OAR has published five Life Journey guidebooks and The Best of The OARacle to date. You can read their descriptions, preview each online, or download copies at no cost. Most are available in Spanish.

• A Parent’s Guide to Assessment
  This guide helps parents understand the assessment process and learn how to use assessment results to improve their child’s services.

• A Parent’s Guide to Research

• This guide helps parents find, understand, and evaluate autism research studies.

• A Guide for Transition to Adulthood
  This guide provides an overview of the transition from school to adulthood.

 

Mental Health Services Locator, National Mental Health Information Center
The Mental Health Services Locator helps families and professionals find information about mental health services and resources by state and/or region. The National Mental Health Information Center is part of the Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services.

 

Operation Autism for Military Families
Operation Autism is a web-based resource specifically designed and created to support military families that have children with autism. It is from the Organization for Autism Research (OAR) and the American Legion Child Welfare Foundation.

 

School Accreditation, National Association for the Education of Young Children (NAEYC)
NAEYC provides accreditation for schools that meet certain standards, as well as resources, tools, and information for families and childcare providers.

 

State Programs, National Dissemination Center for Children with Disabilities
Locate organizations and agencies within each state that address disability-related issues. NICHCY has compiled a resource directory by state that lists key programs for children with developmental disabilities and their families. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects.

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FINANCIAL RESOURCES FOR HEALTH CARE

 

Children’s Health Insurance Program

Insure Kids Now! is a national campaign to link the nation’s 10 million uninsured children–from birth to age 18–to free and low-cost health insurance. It is sponsored by the Department of Health and Human Services. Each state has a Children’s Health Insurance Program that provides free or low-cost health insurance for eligible children. The website has basic facts about these programs as well as links to every state’s program for children. The site also has information on where you can learn who is eligible for the program, how to apply, and what services are covered.

 

GovBenefits.gov
GovBenefits.gov is a partnership of Federal agencies with a shared vision – to provide improved, personalized access to government assistance programs. This website can help you determine if there are government benefits you can receive.

 

Medicaid

Medicaid is a federal program that helps certain groups of people pay for medical care. Each state regulates its own Medicaid program, so the rules may be slightly different state-to-state. To get information, contact the Medicaid office in your state.

 

The Arc Medicaid Reference Desk
The Medicaid Reference Desk is a tool to help people with intellectual and developmental disabilities find out what Medicaid can offer them. It is a project of The Arc and the Administration on Developmental Disabilities.

 

Social Security Benefits

This booklet is for the parents, caregivers or representatives of children under age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (SSDI benefit is called a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)

 

Sound Advice on Autism
To answer parents’ questions about autism spectrum disorders, the American Academy of Pediatrics (AAP) offers a collection of interviews with pediatricians, researchers and parents.

 

Special Needs Trust/Estate Planning
Plan ahead for your child’s financial future by writing a specialized will and preparing other documents that will help your child access his or her government benefits when you are gone.

 

DISASTER PLANNING

 

AutismCares 
A growing number of national autism organizations partnered to form AutismCares, a national initiative to help families with members who have autism that are challenged with disasters in their community. AutismCares registers families through a free online service to help manage and store their health care records and ensure that trained case managers are able to locate them more effectively in case disaster strikes their community.

Assistive Technology

 

People who have an autism spectrum disorder may use assistive technology (AT). AT is any item that helps people do things in their daily lives. Examples of AT devices include a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes getting around on the computer easier, switches that help children play with toys, and talking books.

 

Assistive Devices, MEDLINEplus
MEDLINEplus is an online service of the National Library of Medicine and the National Institutes of Health. Updated daily, the site offers information on a range of health topics, including autism and assistive device.

 

 

HEALTHCARE PROVIDERS

Screening and Diagnosis

 

Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians
A clinical resource to assist in the recognition, evaluation, and ongoing management of autism spectrum disorders throughout the patient’s lifespan from the American Academy of Pediatrics (AAP).

 

Developmental Screening/Testing Coding

Developmental screening, surveillance, and assessment are often complemented by the use of special tests, which vary in length. 

 

Diagnostic and Statistical Manual of Mental Disorders
The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, is the standard classification of mental disorders used by mental health professionals in the United States.

 

EARLY INTERVENTIONS

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Act Early on Developmental Concerns: Partnering with Early Intervention
A presentation that offers health care providers a general overview of early intervention services as well as practical tips, resources, and tools for working with early intervention and community services from the American Academy of Pediatrics (AAP).

 

Developmental and Behavioral Pediatrics Online
Developmental and Behavioral Pediatrics Online is for professionals interested in child development and behavior in a medical setting. The website focuses on primary care development and behavior, including early intervention and screening, and provides articles, handouts, and materials about developmental disabilities developed for professionals and parents. It also offers a practice section with information to support primary and specialty health care practice.

 

Association of University Centers on Disabilities
The Association of University Centers on Disabilities is network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.

 

Health Resources and Services Administration
The Health Resources and Services Administration (HRSA), an agency of the Department of Health and Human Services, improves access to health care services for people who are uninsured, isolated, or medically vulnerable. HRSA provides leadership and financial support to health care providers in every state and U.S. territory.

 

National Center of Medical Home Initiatives for Children with Special Needs

The National Center of Medical Home Initiatives for Children with Special Needs works with federal agencies to ensure that children with special needs have access to a medical home. Its website has resources, information, and tools on providing medical homes for children and youth with special health care needs.

 

EDUCATORS

 

Autism and Asperger Syndrome Educator’s Guides, Organization for Autism Research (OAR)
These guides provide teachers and other education professionals with a plan for teaching a child with autism or Asperger syndrome in the general classroom setting. In addition to these guides, OAR has other tips for educators on its website.

 

The Center on the Social and Emotional Foundations for Early Learning (CSEFEL)

CSEFEL is focused on promoting the social emotional development and school readiness of young children birth to age 5. They have user-friendly training materials, videos, and print resources which are available directly from this website to help early care, health and education providers implement this model.

 

The National Professional Development Center on Autism Spectrum Disorders
This organization strives to promote optimal development and learning of infants, children, and youth with ASD and provide support to their families through the use of evidence-based practices. They provide resources for educators that are evidence-based.

 

National Association for the Education of Young Children (NAEYC)
NAEYC provides accreditation for schools that meet certain standards, as well as resources, tools, and information for families and childcare providers.

 

National Association of Special Education Teachers

The National Association of Special Education Teachers (NASET) has one of the largest sources of information on special education in the United States that teachers have identified as being the most relevant issues faced in the field. The NASET database is updated daily.

 

Teaching Tips for Children and Adults with Autism
The article “Teaching Tips for Children and Adults with Autism” by Temple Grandin has 28 tips to help teachers in fostering a classroom environment conducive to learning for children with autism. Dr. Grandin is an associate professor at Colorado State University and a well-known adult with autism.

 

Young Children with Challenging Behavior
The Technical Assistance Center on Social Emotional Intervention for Young Children, also known as TACSEI, takes the research that shows which practices improve the social-emotional outcomes for young children with, or at risk for, delays or disabilities and creates free products and resources to help decision makers, caregivers, and service providers apply these best practices in the work they do every day.

 

Zero to Three
Provides professionals working with very young children and their families an extensive collection of resources aimed at supporting the work of professionals in a variety of early childhood settings.

 

RESEARCHERS

 

Federal Funding Opportunities

CDC’s National Center on Birth Defects and Developmental Disabilities Funding Opportunities
Find information about funding opportunities in CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD). Information about new funding opportunities throughout CDC can be found on the CDC Grants and Cooperative Agreements webpage.

 

Grants.gov
Grants.gov helps organizations find and apply for more than $400 billion in federal grants electronically. It is the single access point for more than 1,000 grant programs offered by all federal grant-making agencies. The Department of Health and Human Services is the managing partner for Grants.gov.

 

National Institutes of Health (NIH) Grants and Funding

Find grants and funding opportunities from NIH. You can also use NIH’s new tool, the 

 

RePORT Expenditures and Results (RePORTER)

query tool to learn about currently funded projects related to ASDs. This new tool replaces CRISP (Computer Retrieval of Information on Scientific Projects), but keeps all of the features of CRISP, including a searchable database of projects at colleges , hospitals, and other research facilities that are funded by NIH and other government agencies. The new RePORTER tool also has additional search tools, hit lists that can be sorted and downloaded to Excel, NIH funding for each project (expenditures), and the publications and patents that have acknowledged support from each project (results). RePORTER also provides links to PubMed Central, PubMed, and the US Patent & Trademark Office Patent Full Text and Image Database

 

Autism Genetics Initiative Data Archive
The Human Genetics Initiative, funded by the National Institute of Mental Health, is a national resource of clinical data and biomaterials collected from people with autism and other mental disorders. The data and biomaterials in the Autism Genetics Initiative were collected as part of a genetic linkage study done in 1995–2001. Families in the initiative have at least two affected siblings or more distant relatives. Available data include age, sex, family structure, diagnostic interview data and status, and nonverbal IQ data. Data and biomaterials (cell lines and DNA samples) are available to qualified investigators who study the genetics of autism.

 

Autism Genetics Resource Exchange

The Autism Genetic Resource Exchange (AGRE) is a resource for the study of autism genetics. Clinical data and genetic material on more than 700 families are freely available for analysis by members of the scientific community. The goal of AGRE is to speed up progress in identifying the genetic underpinnings of autism and autism spectrum disorders by making this information available to the scientific community.

 

ClinicalTrials.gov
ClinicalTrials.gov provides free and easy access to information on clinical studies for a wide range of diseases and conditions, including autism. Trials found on the website may be federally or privately funded.

 

Data Resource Center for Child and Adolescent Health
The Data Resource Center makes it easy to find key findings on the health and health care of children, youth, and families. It is sponsored by the federal Maternal and Child Health Bureau and is led by the Child and Adolescent Health Measurement Initiative, based at the Oregon Health & Science University.

 

National Center for Education Statistics
The National Center for Education Statistics, located within the U.S. Department of Education and the Institute of Education Sciences, is the primary federal entity for collecting and analyzing data about education.

 

National Center for Health Statistics
CDC’s National Center for Health Statistics (NCHS) has accurate, relevant, and timely statistics to guide actions and policies to improve the health of Americans. The NCHS State and Local Area Integrated Telephone Survey has in-depth state and local area data that can be used to help meet various program and policy needs.

 

National Database for Autism Research
The National Database for Autism Research, being developed by the National Institutes of Health, will provide a national resource to support and speed up research in autism. It is a collection of information systems supporting the full range of autism research activities, including genomic, imaging, laboratory, clinical, and behavioral data sources. It provides the core technology for a data warehouse, a data-entry system, and a centralized source for common measures and their documentation. It will support large-scale, multi-site projects as well as pilot studies and basic science investigations.

Human Subjects’ Protection

 

The Code of Federal Regulations, Title 45, Part 46, is the official federal policy about the protection of human subjects in research studies. You can find more human subjects resources on the CDC human subjects research website. The site includes checklists for writing research protocols and informed consent forms, descriptions of additional protections required if certain groups (such as children and pregnant women) will be research subjects, guidelines for defining public health research versus non-research, and general resources on human subjects issues. The site supports CDC staff and staff on CDC-funded projects to ensure compliance with federal policy on human subjects’ protection.

 

NIH Loan Repayment Programs
The National Institutes of Health offers several loan repayment programs for researchers. NIH Loan Repayment Programs are a vital component of our nation’s efforts to attract health professionals to careers in clinical, pediatric, health disparity, or contraceptive and infertility research.

 

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