California MAP
California MAP
Working Together

Disability-Specific Information

The following links may be of interest as you search the world wide web for information on inclusive child care and other related topics. Many of the sites listed below are good starting points for additional links. The descriptions come from the sites themselves and are not offered with any official Map to Inclusive Child Care or WestEd endorsement.

Attention Deficit Disorder

Attention Deficit Disorder Association (ADDA)
Attention Deficit Disorder Association (ADDA) provides information, resources, and networking opportunities to help adults with Attention Deficit/Hyperactivity Disorder (AD/HD) lead better lives. Local chapters in California are listed on this website.
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
With more than 20,000 members and 200 affiliates nationwide, CHADD is the nation’s leading nonprofit organization serving individuals with Attention-Deficit/Hyperactivity Disorder (AD/HD). Through collaborative leadership, advocacy, research, education and support, CHADD provides science-based, evidence-based information about AD/HD to parents, educators, professionals, the media and the general public. Local chapters in California are listed on this website.
LD Pride (Learning Disability)
Information about learning styles and Multiple Intelligence (MI) is helpful for everyone especially for people with learning disabilities and Attention Deficit Disorder. Knowing your learning style will help to compensate for weaknesses and capitalize on strengths. This page provides an explanation of what learning styles and multiple intelligence are all about, an interactive assessment of your learning style/MI, and practical tips to make your learning style work for you.
Understood
Parents want the best for their children. We do, too. For the first time ever, 15 nonprofit organizations have joined forces to support parents of the one in five children with learning and attention issues throughout their journey. Our goal is to help the millions of parents whose children, ages 3–20, are struggling with learning and attention issues. We want to empower them to understand their children's issues and relate to their experiences. With this knowledge, parents can make effective choices that propel their children from simply coping to truly thriving.
Wunder by Understood App for parents of children with ADHD

The first community app for parents and caregivers of children who learn and think differently. Wunder is the only place where parents can safely connect while being supported by a team of leading experts - all for free.

Autism Spectrum Disorder

15 Behavior Strategies for Children on the Autism Spectrum
July 2016 In this article you will find 15 supportive behavior strategies for children on the autism spectrum (some strategies can be used with adults as well). Many of the strategies can also be used to help children without autism who have challenging behaviors.
About Autism in Toddlers – Free Online Tool
An online tool, About Autism in Toddlers, is now available free of charge for families and professionals interested in learning how to recognize the early signs of autism spectrum disorder in very young children. The tool includes videos on the core features of autism and information on the importance of early identification. You can watch a preview of the tool or sign-in at no charge to access other resources. This is the first in a series of free online tools being developed by the Autism Institute at Florida State University College of Medicine.
Autism National Committee
AUTCOM is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior. On this web site you will find the most recent issue of our newsletter; updates on politics and judicial decisions; commentary by people with autism; information about developmental and relationship-based approaches to early intervention and education; coverage of issues affecting community living, home-owning, and consumer choice; advocacy for access to augmentative, assistive, and facilitated communication; plus in-depth book reviews and information on how to order important works through our Book Store.
Autism Research Institute: Coping with the COVID-19 Pandemic

Disruptions to our personal and professional lives, schedule changes, and school closings present unique challenges for individuals on the autism spectrum and their families. In these challenging times, we are sensitive to the needs of these individuals and their families. To help, we have compiled these resources aimed at reducing anxiety and restoring a sense of routine during the COVID-19 pandemic.

Resources include recorded webinars on a variety of topics, social stories and video aids.

Autism Society of America (ASA)
ASA, the nation's leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.
  • The Autism Speaks Network
    The Autism Speaks Network is a new digital network designed to be the home of premier autism video content online and mobile. The Autism Speaks Network (TASN) is a subsidiary of Autism Speaks and will curate important shows like Autism Live, @AspergerSadie, Kerry's Korner, The Autism Team, The Dr. G Aspie Show and Autism Today TV, and house them in one location for simple and convenient viewing.
  • Sitio en Español (Site in Spanish)
Autism Speaks
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Bringing the Signs of Early Autism into Focus Video Tutorial (Video)
Published: Jun 2013 | 9 minutes The Kennedy Krieger Institute and Maryland Chapter of the American Academy of Pediatrics (AAP) have published a free online video to improve the recognition of the early signs of autism spectrum disorders (ASDs) among pediatricians, parents and early intervention providers. The tutorial consists of six video clips that compare toddlers with no signs of ASD to toddlers with early signs of ASD and includes an explanation of how the specific behaviors exhibited by each child are either suggestive of ASD or typical child development.
Chinese Parents Association for the Disabled (CPAD)
CPAD Is a non-profit organization dedicated to help individuals with special needs and their families (e.g. Autism, Down syndrome, Cerebral Palsy… etc). All the parent members are volunteers, and strive to help each individual achieve his or her full potential toward a meaningful and productive life; to encourage opportunities of social integration, and social inclusion into mainstream society. We can provide information about various disabilities, suggest referrals to appropriate community resources, and offer interpreter/translation assistance. On a periodic basis, CPAD also invites subject matter experts and legal petitioners to speak on subjects such as how to fight for better educational services and gain better understanding of their legal rights.
Edutopia
Edutopia is dedicated to transforming kindergarten through 12th-grade (K-12) education so all students can thrive in their studies, careers, and adult lives. We are focused on practices and programs that help students acquire and effectively apply the knowledge, attitudes, skills and beliefs to achieve their full potential.
First Signs
First Signs is a national non-profit organization dedicated to educating parents and professionals about the early warning signs of autism and related disorders.
First Words Project
FIRST WORDS© Project is a longitudinal research investigation in the Florida State University Autism Institute in the College of Medicine directed by Dr. Amy Wetherby. Our major goal is to identify early signs of developmental language disorders, autism spectrum disorder, and other communication delays in children from 9 to 24 months of age. The website includes downloadable books and video in English and Spanish that demonstrate developmental milestones of communication for gestures in the 16 by 16 (16 gestures by 16 months). Also on the site is a video growth chart that shows what can be expected at various ages.
Friendship Circle
Friendship Circle of Michigan is a non-profit organization that provides programs and support to the families of individuals with special needs. With over 75,000 visitors a month, the Friendship Circle Special Needs Resource blog is one of the biggest special needs blogs in the world. Currently the blog has over 500 articles on special needs topics including: parenting, special education, products, therapy tips, videos and more.
Helping Students with Autism Transition Into a New School Year
In this article a mother reflects on what helped her son with successful transitions to a new class and teacher. She provides common sense suggestions that can contribute to reducing stress and encouraging well-being for both the teacher and student.
How to Communicate with a Nonverbal Child
Compares the tools that you would use if you had laryngitis with tools that you would use to communicate with a nonverbal child who has autism. Also has links to related videos.
Minnesota Autism Resource Portal
The purpose of this website is to provide the Minnesota autism community with up-to-date information and resources related to autism and autism spectrum disorder. Content will be collected from a variety of sources, such as non-profit organizations, state and federal agencies and other autism-related organizations.
National Clearing House on Autism Evidence and Practice
The National Clearinghouse on Autism Evidence and Practice (NCAEP) conducted a systematic review of the current intervention literature targeting individuals on the autism spectrum. NCAEP is a continuation of the evidence review that was completed by the National Professional Development Center on Autism Spectrum Disorders (NPDC) which included research published through 2011. We reviewed research studies published between 2012-2017 which examined the impact of behavioral, educational, clinical and developmental practices and service models used with individuals on the autism spectrum from birth through age 22. The literature is expanding rapidly so we hope to establish an active yearly review that will provide families, practitioners, and researchers with more timely updates. In the future, NCAEP hopes to expand this important work to identify EBPs for adults on the autism spectrum and to include pharmaceutical interventions. The publications below are found at this website.
National Institute of Mental Health (NIMH)
The National Institute of Mental Health (NIMH) is one of 27 components of the National Institutes of Health (NIH), the Federal government's principal biomedical and behavioral research agency. NIH is part of the U.S. Department of Health and Human Services. This website contains extensive information on mental health issues.
Sesame Street and Autism YouTube Playlist
Sesame Street | April 2021Julia and her Sesame Street friends show kids that we’re all a little different but share the same joy of play and friendship. #SeeAmazing
Sesame Street and Autism: See Amazing in All Children
Sesame Street's new website includes tips for parents and siblings, as well as guides to help kids on the spectrum learn everyday basics like brushing teeth and going to the grocery store. In addition, the initiative includes an iPad app and printed storybooks.
Social Stories for Autistic Children
Children with autism spectrum disorder (ASD) can sometimes have difficulty when it comes to mastering social skills, as well as communication skills. The good news is there are various strategies or tools developed by experts to help people caring for children with ASD so they grow and succeed. Among these tools are the social stories specifically created for these kids.
STAR Autism Supports
Provides free evidence-based materials and training for families and caregivers to support children with autism.
Stress Free Kids
Stress Free Kids© founder Lori Lite has created a line of books and CDs designed to help children, teens and adults decrease stress, anxiety & anger. As a parent, bedtime meant two stressed filled hours trying to get our young son to sleep. Our daughter developed stress related night terrors and Lori herself became sick from anxiety. In an effort to help our own family, Lori created stories that would entertain our children while introducing research-based relaxation and stress management techniques. Our books and CDs will introduce you and your children to the proven techniques of deep breathing, progressive muscular relaxation, visualizations, and affirmations/positive statements. This unique storytelling format has been embraced by psychologists, doctors, child life care specialists, yoga instructors, teachers, counselors, parents, and most importantly… children.
Technology Tools for Students with Autism (PDF)
Technology holds great promise for helping students with autism learn, communicate, and function effectively in the modern world. Start leveraging that power today with this forward-thinking book, your in-depth guided tour of technologies that support learners with autism and help them fully participate in their classroom and community.

Blind/Visual Impairments

American Federation for the Blind (AFB)
The American Foundation for the Blind (AFB) is a national nonprofit that expands possibilities for people with vision loss. AFB's priorities include broadening access to technology; elevating the quality of information and tools for the professionals who serve people with vision loss; and promoting independent and healthy living for people with vision loss by providing them and their families with relevant and timely resources. AFB's work in these areas is supported by the strong presence the organization maintains in Washington, DC, ensuring the rights and interests of people with vision loss are represented in our nation's public policies.
American Printing House for the Blind
The American Printing House for the Blind promotes independence of blind and visually impaired persons by providing specialized materials, products, and services needed for education and life. American Printing House for the Blind (APH) is the world's largest nonprofit organization creating educational, workplace, and independent living products and services for people who are visually impaired.
Braille Institute (Southern California)
The Braille Institute is a private, non-profit organization whose mission is to eliminate blindness and severe sight loss as a barrier to a fulfilling life through integrated educational, social and recreational programs and services. The Institute has five regional centers in Southern California and 140 Community Outreach programs.
Family Connect: For Parents of Children with Visual Impairments
From birth until they reach age 22, children who are blind or visually impaired and who are entitled to receive special education services have either an Individualized Family Service Plan (IFSP) or an Individualized Education Program (IEP). If your child is under age three, she'll have an IFSP; once your child reaches age three, she'll then have an IEP. You may want to think of these documents as roadmaps—they lay out the services your child will receive as she moves from infancy through her childhood and are based on assessments of her strengths and needs. Both documents are developed by your child's educational team, of which you are an important member. Because services that are not mentioned in IFSPs and IEPs are not usually required to be provided, it's important that you take an active part in developing the IFSP or IEP for your child. You'll probably find that understanding the law that sets out what is included in an IFSP or an IEP will be very helpful.
Feeling Through Experience
A 90 minute 3 part video that includes the 18 minutes Feeling Through short video, Connecting the Dots 24 minute documentary about the making of the video and Engaging Community 48 minutes which brings together the DeafBlind community to discuss the video
Feeling Through, Short Award Winning Film (Video)
2020 | Length: 18 mins

“After a late-night chance encounter with a DeafBlind man on a New York City street, writer/director Doug Roland wrote the award-winning short film, Feeling Through. Doug knew from the start he wanted to cast a DeafBlind actor to star, so he partnered with Helen Keller Services to realize that mission.” This Oscar-nominated, award-winning short film “has connected thousands of people in the DeafBlind, blind, and low-vision communities, and is connecting non-disabled people to the people and missions of those communities.”

Paths to Literacy
Stay at home activities for kids with visual impairments.
Wonder Baby: Perkins School for the Blind
WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.

Brain Injury

Cerebral Palsy

Chinese Parents Association for the Disabled (CPAD)
CPAD Is a non-profit organization dedicated to help individuals with special needs and their families (e.g. Autism, Down syndrome, Cerebral Palsy… etc). All the parent members are volunteers, and strive to help each individual achieve his or her full potential toward a meaningful and productive life; to encourage opportunities of social integration, and social inclusion into mainstream society. We can provide information about various disabilities, suggest referrals to appropriate community resources, and offer interpreter/translation assistance. On a periodic basis, CPAD also invites subject matter experts and legal petitioners to speak on subjects such as how to fight for better educational services and gain better understanding of their legal rights.
I’m Tyler (Video)
Published: Jul 2012 | 12:14 minutes Tyler is a typical high school student who happens to have cerebral palsy and some other challenges. He has taken on a mission to educate the world about Ability Awareness. He believes that what a person, any person, CAN do is much more important than what he/she can't. The people in Tyler's life who have seen this and practiced Ability Awareness have made all the difference in the world to him. For more information, go to the I'm Tyler website.
My Child Without Limits
United Cerebral Palsy has partnered with a parents, medical professionals and providers to provide you, your loved one's best advocate, with the knowledge, resources, and network to ensure their future is without limits. The site provides information and resources applicable to a variety of developmental disabilities to help you "understand, plan and act" to ensure the best for your child's future.
United Cerebral Palsy
Founded in 1949, the national organization and its nationwide network of affiliates strive to ensure the inclusion of persons with disabilities in every facet of society—from the Web to the workplace, from the classroom to the community. United Cerebral Palsy's mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.

Deaf/Hard of Hearing

Center for Disease Control and Prevention/Hearing Loss
Impairments in hearing can happen in either frequency or intensity, or both. Hearing loss severity is based on how well a person can hear the frequencies or intensities most often associated with speech. Severity can be described as mild, moderate, severe, or profound. The term “deaf” is sometimes used to describe someone who has an approximately 90 dB or greater hearing loss or who cannot use hearing to process speech and language information, even with the use of hearing aids. The term “hard of hearing” is sometimes used to describe people who have a less severe hearing loss than deafness.
Deaf Education
Educational Enhancements for the Field of Deaf Education.
Deaf Video TV
Deaf Video TV is like You-Tube for deaf people. People can upload videos of themselves signing something of importance which others can watch and then post their own video comments. Videos are available from the US and Great Britain. One must register to join the site before videos can be uploaded. This is an interesting website for deaf people or for those who work with or are otherwise interested in deaf people, culture, and language.
Gallaudet University
Gallaudet University Library Deaf Collections and Archives works diligently to build, maintain and organize the world's largest collection of materials related to the Deaf Community, as well as the home to Gallaudet University's institutional records and the records of the Gallaudet family. Included in the collection are artifacts, photographs, films, papers, periodicals, books, and other items. While maintaining a comprehensive collection, the importance of preserving the records of the global Deaf Community and collaborating with other repositories to ensure the longevity of items is essential.
Hands and Voices
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support. Our membership includes families who communicate manually and/or orally. From American Sign Language to cochlear implants, our organization represents people from all different approaches to, and experiences with, deafness or hearing loss. We have local chapters comprised mainly of parents along with professionals. If you're interested in opening a Hands & Voices group in your area, just contact us via this website for more information.
National Institute on Deafness and other Communication Disorders (NIDCD)
Established in 1988, NIDCD is mandated to conduct and support biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. It is estimated that more than 46 million people in the United States suffer some form of disordered communication. NIDCD has focused national attention on disorders of human communication and has contributed to advances in biomedical and behavioral research that will improve the lives of millions of individuals with communication disorders. NIDCD has made important contributions to the body of knowledge needed to help those who experience communication disorders and to advance research in all aspects of human communication.

Down Syndrome

Chinese Parents Association for the Disabled (CPAD)
CPAD Is a non-profit organization dedicated to help individuals with special needs and their families (e.g. Autism, Down syndrome, Cerebral Palsy… etc). All the parent members are volunteers, and strive to help each individual achieve his or her full potential toward a meaningful and productive life; to encourage opportunities of social integration, and social inclusion into mainstream society. We can provide information about various disabilities, suggest referrals to appropriate community resources, and offer interpreter/translation assistance. On a periodic basis, CPAD also invites subject matter experts and legal petitioners to speak on subjects such as how to fight for better educational services and gain better understanding of their legal rights.
Difference is an Artist’s Game (YouTube)
Must see! presented by an 8th grade girl who has a younger brother with Down syndrome. This is a very powerful video and she asks some very deep, pointed questions of the young audience. She relates her brother to a Picasso painting. It's very beautiful and moving.
Managing Behavior for Down Syndrome
From the National Down Syndrome Society: Tips for understanding the behavior problems and challenges associated with Down Syndrome.
National Down Syndrome Congress
The NDSC works to empower its members and all people with Down syndrome by creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. The NDSC operates the NDSC Center which serves as a clearinghouse for information on Down syndrome. The Center provides up-to-date information on topics of interest to people with Down syndrome, family members, friends, professionals and interested others.
National Down Syndrome Society
The mission of NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. Our activities include:
  • Developing and disseminating quality educational materials and programs.
  • Initiating and advancing basic, clinical and applied research.
  • Shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome.
  • Working in partnership with our affiliates and other support organizations.
  • Sitio En Español (Site in Spanish)
Special Olympics YouTube Channel
Welcome to the official YouTube Channel for Special Olympics! Special Olympics is composed of passionate, committed individuals from every walk of life, who recognize the value and unique gifts of people with intellectual disabilities. And, who together, share the common belief of dignity, equality and opportunity for ALL people.

Dwarfism

Grant, a six year old with heart (Video)
Published: Nov 2014 | 5:54 minutes Meet Grant. He's is six years old and has Diastrophic Dysplasia. He wants to share with you his own unique path to walk as a dwarf and prove he's just like your average six-year-old kid! From running and climbing to dancing and painting, little Grant knows just how to live life in pure fun. But make sure not to call him a "baby," because even though he looks awfully similar to his one-year-old baby brother, he has a big heart with a big lesson to teach you. You're going to love what this ham has to say!
Kids Health
KidsHealth is more than just the facts about health. As part of The Nemours Foundation's Center for Children's Health Media, KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens. The website has an easy to understand description of dwarfism, it’s origin, diagnosis and tips for helping a child with dwarfism.
Little People of America
Little People of America (LPA) is a nonprofit organization that provides support and information to people of short stature and their families. Here you will find resources pertaining to dwarfism and LPA, medical information, instructions on how to join our e-mail discussion groups, and links to other dwarfism-related sites. California chapters of the LPA:

Epilepsy

Epilepsy Foundation
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by affiliated Epilepsy Foundation offices in nearly 100 communities. The three affiliates in California are the Epilepsy Foundation – Greater Los Angeles, Epilepsy Foundation of Northern California, and Epilepsy Foundation of San Diego.
Epilepsy Foundation of Northern California
The Epilepsy Foundation of Northern California is dedicated to providing information, resources and support to the over 140,000 Northern Californians living with epilepsy. Our goal is to ensure that people with seizures are able to participate in all life experiences, to improve how the community views epilepsy, and to dispel myths about this condition by providing information through statewide training, events, and programs.

General Disabilities

All Play Learn: Disability Strategies
Offers disability-specific strategies for eight different disabilities and several more general categories of a potential disability. Includes a description of the disability, strengths, evidence-based strategies, best practice tips, early learning and development outcomes, and additional resources.
American Academy of Pediatrics: Opioid Fact Sheets: State and National Fact Sheets: America’s Opioid Crisis: The Unseen Impact on Children
A key AAP advocacy priority is addressing the needs of vulnerable children impacted by the ongoing opioid epidemic. This crisis has significant and multifaceted impacts on child and family health and wellbeing. As families affected by parental substance use around the country face child welfare involvement, the Academy is working to support family-centered treatment-focused approaches. Developed in partnership with Casey Family Programs, these fact sheets are the first to synthesize national and state data related to the opioid crisis, child welfare systems, Medicaid, and child health.
Center for Disease Control and Prevention (CDC)
Center for Disease Control and Prevention: Act Early
We naturally think of a child's growth as height and weight, but from birth to 5 years, your child should reach milestones in how he plays, learns, speaks and acts. A delay in any of these areas could be a sign of a developmental problem, even autism. The good news is, the earlier it's recognized the more you can do to help your child reach her full potential.
Center for Health Literacy Promotion
Promoting Health Literacy with Free Info & Cool Tools from Your National Library of Medicine, a series of three brief training videos, is now ready for your use. The videos were developed by Sandra Smith, PhD, at the Center for Health Literacy Promotion in collaboration with the National Network of Libraries of Medicine Pacific Northwest Region. They were funded by NIH through a contract with University of Washington. This three-part video training series is designed for social and health services providers and programs with limited time and money for training and materials. The brief videos (8-10 minutes) are intended for independent or small group learning and for use in staff meetings, trainings and other scheduled activities. Session I provides a tutorial on how to use MedlinePlus that is available in English or Spanish.
Easter Seals Disability Services
Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for more than 80 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life's challenges and achieve personal goals. Easter Seals provides exceptional services to ensure that all people with disabilities have equal opportunity to live, learn, work and play. Easter Seals has more than 500 centers nationwide, benefiting over 1 million people every year. There are 56 centers in California.
Medical/Disability Information for Classroom Teachers
Understanding medical and disability implications is essential for getting to know students, planning effective instruction and providing the right level of classroom support. The critical information is not necessarily what the medical conditions or disabilities are, but rather how they impact a student’s learning, social/emotional behaviour and the classroom environment. This website from Canada offers a menu of different types of medical conditions and disabilities and provides information that aids teachers in supporting their student. The information is organized around planning and awareness; instruction; and social and emotional well-being.
National Father’s Network
The National Father's Network provides resources and support for fathers of children with disabilities. It has wonderful articles by fathers, many of them in Spanish. The organization also produces written and video resources for fathers. The website is an excellent source of links for fathers, disabilities, and families.
National Institutes of Health
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research. NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases. This website contains extensive information on health issues.
NORD Rare Disease Information
Access the rare disease information you need, download rare disease reports and find patient organizations on this site devoted to rare diseases.
Parents Helping Parents (PHP)
Parents Helping Parents is a parent organization that has a wealth of information and resources on disabilities. The website includes a library of books and videos that can be borrowed.
Pathways Awareness Foundation
Pathways Awareness Foundation is a national nonprofit organization dedicated to raising awareness about the benefit of early detection and early therapy for children with physical movement differences. It focuses on physical, movement, and motor delays and disabilities.
Rare Disorders: Disability Fact Sheet
Published: June 2017, Center for Parent Information & Resources Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially medicine, can also be a challenge—and for the same reason. Rareness. If you have a rare disease, know someone who does, or work with people who might, here’s a core of resources we hope are helpful.
The Impact of Childhood Disability: The Parent’s Struggle
This article by Ken Moses, Ph.D., a psychologist who helps people deal with crisis, trauma and loss, focuses on the process of grieving that many parents experience with the diagnosis of special needs. The article first appeared in Ways Magazine, Spring 1987.

Intellectual Disability

The Arc of California
The Arc of California is the state affiliate of The Arc of the United States. The Arc of the United States is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children. Local chapters of the Arc of California are listed on this site.

Learning Disabilities

LD OnLine
LD OnLine is the world's leading website on learning disabilities and ADHD, serving more than 200,000 parents, teachers, and other professionals each month. LD OnLine seeks to help children and adults reach their full potential by providing accurate and up-to-date information and advice about learning disabilities and ADHD.
LD Pride (Learning Disability)
Information about learning styles and Multiple Intelligence (MI) is helpful for everyone especially for people with learning disabilities and Attention Deficit Disorder. Knowing your learning style will help to compensate for weaknesses and capitalize on strengths. This page provides an explanation of what learning styles and multiple intelligence are all about, an interactive assessment of your learning style/MI, and practical tips to make your learning style work for you.
Learning Disabilities Association of California
The Learning Disabilities Association of California is one of the state chapters of the Learning Disabilities Association of America. LCA California is a nonprofit volunteer organization of parents, professionals, and adults with learning disabilities. Its purpose is to promote and support the education and general welfare of children and adults of potentially normal intelligence who manifest learning, perceptual, and/or behavioral handicaps. The website has an extensive links and resources pages.
National Center for Learning Disabilities (NCLD)
The mission of NCLD is to improve the lives of the 1 in 5 children and adults nationwide with learning and attention issues—by empowering parents and young adults, transforming schools and advocating for equal rights and opportunities.
  • The LD Checklist: Recognize and Respond Jan 2021 “Most preschoolers and school-age children struggle with learning and behavior now and then. But what if the difficulty persists? Sometimes, that signals a learning disability (LD). Use this interactive tool to detect potential signs of LDs or an attention issue in your child or student. Then use the resources provided to learn more.

    This tool can’t diagnose LDs or prescribe treatment. But it can help you understand signs of LDs and decide what to do next. As you use the tool, think about the person’s behavior over the past six months or more. When you’re done, you can bring any concerns to school personnel or other professionals. They can help you decide whether to look into screening or evaluation.”
Understood
Parents want the best for their children. We do, too. For the first time ever, 15 nonprofit organizations have joined forces to support parents of the one in five children with learning and attention issues throughout their journey. Our goal is to help the millions of parents whose children, ages 3–20, are struggling with learning and attention issues. We want to empower them to understand their children's issues and relate to their experiences. With this knowledge, parents can make effective choices that propel their children from simply coping to truly thriving.

Mental Health

Center on the Social and Emotional Foundations for Early Learning (CSEFEL)
The Center on the Social and Emotional Foundations for Early Learning (CSEFEL) is a national resource center for disseminating research and evidence-based practices to early childhood programs across the country. The Center on the Social and Emotional Foundations for Early Learning (CSEFEL) is focused on promoting the social emotional development and school readiness of young children birth to age 5. To support this goal, we have developed a conceptual model of evidence-based practices for promoting young children's social-emotional competence and preventing and addressing challenging behavior.
  • Sitio en Español (Site in Spanish)
  • How Do I Decide? Series of Guidelines
    The first two installments in this new series provide guidelines on: How to Choose a Social-Emotional Curriculum and When to Seek Outside Help for Children's Problem Behavior.
  • Online Videos
    Two CSEFEL videos, Promoting Social Emotional Competence and Practical Strategies for Teaching Social Emotional Skills, can now be viewed online in their entirety.
  • Home Visiting Training Package
    One of the last products developed by TACSEI was a three-day training package for professionals who provide home visiting services (e.g., Part C, Early Head Start). They are not posted on the CSEFEL website for download, but you can order them for the cost of production $20.
Child Mind Institute
The Child Mind Institute is dedicated to transforming mental health care for children everywhere. Founded by Dr. Harold S. Koplewicz, Brooke Garber Neidich, and Debra G. Perelman, our organization is committed to finding more effective treatments for childhood psychiatric and learning disorders, building the science of healthy brain development, and empowering children and their families with help, hope, and answers. Website offers tools for parents worried about a child's mood, behavior, or success in school including: Mental Health guide, Symptom Checker, Developmental Milestones, Quick Facts on disorders and a Glossary of useful terms.
Mental Health America (Formerly the National Mental Health Association)
Mental Health America (formerly known as the National Mental Health Association) is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives. With our more than 320 affiliates nationwide, we represent a growing movement of Americans who promote mental wellness for the health and well-being of the nation – everyday and in times of crisis.
Mental Health Association in California
The Mental Health Association in California is an affiliate of the National Mental Health Association. The mission of the Mental Health Association is to provide advocacy, education, information and other assistance necessary to ensure that all people who require mental health services are able to receive the mental health and other services that they need, and are not denied any other benefits, services, rights, or opportunities based on their need for mental health services.
NAMI California
NAMI California is a grass roots organization of families and individuals whose lives have been affected by serious mental illness. It advocates for lives of quality and respect, without discrimination and stigma, for all our constituents; and provides leadership in advocacy, legislation, policy development, education and support throughout California. It also provides updated information and support to 76 local affiliates and helps organize new affiliates. NAMI has several local affiliates throughout California.
Substance Abuse and Mental Health Services Administration (SAMHSA)
SAMHSA's "Caring for Every Child's Mental Health" public awareness effort was created in 1994 with the mission to increase awareness around children's mental health. The "Caring for Every Child's Mental Health" team works to support SAMHSA-funded sites through the strategic use of social marketing and communications strategies. The overarching purpose of the team is to stimulate support for a comprehensive system of care approach to children's mental health services.

Prader Willi Syndrome

Foundation for Prader-Willi Research
The Foundation for Prader-Willi Research was founded by parents of children with Prader-Willi syndrome (PWS). As parents, we know exactly what you are experiencing – we’ve been there too. If there is one piece of advice that most of us would give to families with a new diagnosis of PWS, it is not to believe everything you read about PWS. All too often, the picture painted of PWS is so bleak that it threatens to overwhelm most families to the point of despair. If that is where you are, we are glad that you have found us and we want to let you know that no matter what you have read or heard, there is hope!
Prader-Willi California Foundation
Since 1979 Prader-Willi California Foundation has been dedicated to supporting people with Prader-Willi syndrome, their families, and the professionals who serve them. PWCF is funded by donations, grants, membership dues, and events.
Prader-Willi Syndrome Association
PWSA (USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.
Prader-Willi Syndrome Teacher Tips (Video)
Published: August 2013 | Length: 27:34 mins A short video that provides very helpful information and practical strategies for teachers who have students with Prader-Willi syndrome (PWS) in their classroom. Presented by Elizabeth E. Roof, M.A. - Senior Research Specialist at the Vanderbilt Kennedy Center.

Speech and Hearing

California Chapter of the Alexander Graham Bell Association for the Deaf and Hard of Hearing
The purpose of the California Chapter of the Alexander Graham Bell Association is to support the mission of the National Association by advocating independence through listening and talking. Its membership consists of parents and families of children who are deaf or hard-of-hearing, professionals in the field of hearing health care and deaf education, as well as oral deaf adults who are dedicated to keeping the oral option alive in California. The California Chapter holds annual conferences, networks and lobbies to promote the oral option.
Communication Development: A Parent’s Guide
The guide provides an online guide to communication development for parents. The purpose of this guide is to provide current information about topics related children's speech, language, and communication development that may be helpful to parents. In this guide, you'll find information on commonly asked questions about communication development and about speech and language therapy.
Delayed Speech or Language Development
As with other skills and milestones, the age at which kids learn language and start talking can vary. Many babies happily babble "mama" and "dada" well before their first birthday, and most toddlers can say about 20 words by the time they're 18 months old. But what if a 2-year-old isn't really talking yet or only puts two words together? This article explains what's "normal" and what's not in speech and language development and can help parents figure out if there's cause for concern or if their child is right on schedule.
HealthyChildren.org
National Center for Hearing and Assessment Management (NCHAM)
NCHAM serves as the National Resource Center for the implementation and improvement of comprehensive and effective Early Hearing Detection and Intervention (EHDI) systems. As a multidisciplinary Center, our goal is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.
PBS Parents: Communication Strategies (for kids with disabilities)
All children have the right to express what they want and how they feel. But this is not always easy to do. Some children may not be able to speak clearly enough for everyone to understand them, while others may not be able to speak at all. For these children, telling people how they feel or what they want may be among the most difficult things they have to do. Through Augmentative and Alternative Communication (AAC) parents and caregivers can help children with communication difficulties find ways to express what they are thinking, wanting, or needing.
Using Music to Support Language Development in Children with Hearing Loss
July 19, 2021

Children with hearing loss, including individuals with a cochlear implant, can also benefit from exposure to music, both as an enjoyable activity and a means for improving their speech and language skills. This article describes various types of hearing loss, how music can benefit hearing loss, how parents can include music in speech therapy and at home music activities for children with speech and language delays.

Spina Bifida

Spina Bifida Association (SBA)
The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service. Through its network of Chapters, SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. Lives are changed by the programs SBA has created, the services provided, and the results of our advocacy efforts.