This area provides a comprehensive list of sites that we feel are of interest to the TelAbility community. Use the search interface above to search by keyword or category for sites related to your area of interest. We are constantly reviewing and adding new links so please check back often.

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ADA National Access for Public Schools Project A project funded by the National Institute on Disability and Rehabilitation Research of the US Department of Education to help public elementary and secondary schools implement the Americans with Disabilities Act. This website contains information about: Technical assistance to school administrators, teachers, students, parents and the public Training programs Question and answer sheets and other resources A listserv on ADA and public school issues

ADD/ADHD Online Support Group Our objective is to promote awareness to AD/HD (Attention Deficit/Hyperactivity Disorder) and to provide information and as much free practical help as we can to those with the condition, both adults and children, their families in the UK and around the World via this website.

ARC of North Carolina The ARC of NC advocates for improved quality of life for all individuals with mental retardation and other developmental disabilities in our state. This site offers an array of supports and services to individuals and families across North Carolina. There's an online discusion board and answer sheets, a link to the NC General Assembly website, and even a catalog of clothing with the ARC of NC insignia.

AVENUES A national support group for arthrogryposis multiplex congenita. This website includes general information about the condition (also in Spanish), directory listings of clinics, providers, and support groups.

Access To Medical Care For People with Mobility Disabilities An online booklet designed to assist health care programs to better serve persons with disabilities, protect persons with disabilities and staff from injury, and comply with federal law. From the U.S. Department of Justice,Civil Rights Division,Disability Rights Section and the U.S. Department of Health and Human Services, Office for Civil Rights.

Accessible Housing Information from HUD This website, from the national center on Housing and Urban Development (HUD), helps explain the rights of people with disabilities who are seeking housing, and the responsibilities of those who house them. This site provides practical information about Section 504 of the Rehabilitation Act of 1973,information on modification funds, advocacy agencies, guidelines, disability rights in housing programs, accessible housing designs, model building codes, and a Q&A section.

Addressing Child Care Challenges for Children with Disabilities This Center on Law and Social Policy report (February 2003) offers background and recommendations regarding Congressional reauthorization of the Child Care and Development Block Grant and the Individuals with Disabilities Education Act (IDEA), which together provide resources for early childhood education for young children with disabilities in all states.

Adolescent Health Transition Project The Adolescent Health Transition Project is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs. This site is a resource for information, materials, and links to other people with an interest in health transition issues. This program is housed at the Center on Human Development and Disability (CHDD),at the University of Washington, Seattle.

Aicardi Syndrome Website Aicardi syndrome is a rare genetic disorder. The site provides information for parents, a newsletter, regional coordinators, email Support Groups, chat room, foundation information, events/conference updates, and a personal section to meet some of the girls afflicted with this disorder.

Alexander Graham Bell Association for the Deaf and Hard of Hearing An international membership organization comprised of parents of children who are deaf and hard of hearing, adults with hearing loss, and professionals who serve children with hearing loss. This website offers information about the organization and its events, publications, periodicals, resources, and information about captioned movie loan programs.

All Kinds of Minds All Kinds of Minds undertakes applied research, product development, program design, and professional training to foster the understanding and optimal care of children with differences in learning. Based upon the work of Dr. Mel Levine and his colleagues, the Institute applies the latest knowledge, advanced technology and rigorous methods of validation within a collaborative approach that includes educators, clinicians, parents, and the children themselves. All Kinds of Minds is committed to broad national dissemination of its work, so as to exert a strong, positive influence upon both the academic experience and the development of children with differences in learning.

Alpha-1 Association Mission Alpha-1-antitrypsin deficiency is a common hereditary disorder characterized by a reduction of serum levels of Alpha-1, emphysema, and occasionally liver disease. The alpha 1 association provides education, information, advocacy, and supports research.This site features research, links, information, and realted events.

American Academy of Audiology The American Academy of Audiology (AAA) helps members achieve career objectives, provides quality hearing care to the public, encourages professional development through education and research, and increases public awareness of hearing disorders and audiologic services. In addition to including information for professionals, this site also provides resources for consumers and students. Consumers can find an audiologist in their area, join email discussion lists, receive a newsletter, and obtain information about audiogram reading, hearing aids, hearing loss, and deafness.

American Academy of Pediatrics FOR PROFESSIONALS, this site includes announcements of upcoming conferences, an online directory of members, training opportunities, and new research; access to professional educational materials; online pediatric journals, newsletters and free access to MEDLINE, a medical article search engine, immunization and practice recommendations, advocacy tips,and publications. FAMILIES should look at the parent resource guide, child health information, managed care guide, and listings of AAP position papers on many areas pertaining to children with special needs (from the home page, go to "Publications" in the upper right hand corner - then go to "AAP Policy Statements").

American Foundation for the Blind The American Foundation for the Blind is addressing the most critical issues facing the growing population of people who are blind or visually impaired: independent living, literacy, employment, and technology. Every seven minutes, someone in America will become blind or visually impaired. Since 1921, the American Foundation for the Blind?to which Helen Keller devoted more than 40 years of her life ?has been eliminating barriers that prevent people who are blind or visually impaired from reaching their potential. The American Foundation for the Blind is dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired.

American Latex Allergy Association A.L.E.R.T. , Inc. is a national non-profit, tax exempt organization that has designed their website to help connect you with educational materials, support groups, publications and product information to assist you with your understanding of natural rubber latex allergy.

American Physical Therapy Association Section on Pediatrics This website offers news, resources about government affairs, product information, meeting announcements, research assistance, and more to pediatric physical therapists across the country.

American Rehabilitation Counseling Association ARCA is an organization of rehabilitation counseling practitioners, educators, and students who are concerned with improving the lives of people with disabilities. Its mission is to enhance the development of people with disabilities throughout their life span and to promote excellence in the rehabilitation counseling profession. ARCA's goal is to provide the type of leadership that encourages excellence in the areas of rehabilitation counseling practice, research, consultation, and professional development. ARCA is equally interested in eliminating environmental and attitudinal barriers so that more opportunities are available with regard to education, employment, and community activities to people with disabilities. These goals are addressed by ARCA through public education and legislative activities. One of ARCA's primary goals is to increase public awareness of rehabilitation counseling as a profession and to extend its influence by encouraging members to become involved in the association's outreach and educational efforts. Other goals are to help members develop their leadership skills through participation in ARCA's organizational activities and to work with state officials to develop appropriate licensure requirements.

American School Health Association The American School Health Association unites the many professionals working in schools who are committed to safeguarding the health of school-aged children. The Association, a multidisciplinary organization of administrators, counselors, dentists, health educators, physical educators, school nurses and school physicians, advocates high-quality school health instruction, health services and a healthful school environment. The mission of the American School Health Association is to protect and promote the health of children and youth by supporting coordinated school health programs as a foundation for school success.

American Sleep Apnea Association The ASAA is an organization dedicated to reducing injury, disability, and death from sleep apnea and to enhancing the well-being of those affected by this common disorder. They promote education and awareness, support groups, research, and continuous improvement of care.This site provides information, links, publications, and volunteer information.

American Society for Deaf Children A nonprofit organization, the American Society for Deaf Children (ASDC) provides support, encouragement, and information to families raising children who are deaf or hard of hearing. The ASDC website includes legislative information, convention dates and descriptions, membership information, current news, and related links.

American Speech-Language-Hearing Association Geared towards speech language pathologists and audiologists, this website provides legislative updates, advocacy tips, continuing education opportunities, job announcements, bibliographies, research updates, graduate school information, and much more. Also has updated information on newborn hearing screenings.

American Therapeutic Recreation Association The American Therapeutic Recreation Association (ATRA) is the largest, national membership organization representing the interests and need of recreational therapists. Recreational therapists are health care providers using recreational therapy interventions for improved functioning of individuals with illness or disabling conditions. ATRA, was incorporated in the District of Columbia in 1984 as a non-profit, grassroots organization in response to growing concern about the dramatic changes in the health care industry. ATRA defines therapeutic recreation as "the provision of Treatment Services and the provision of Recreation Services to persons with illnesses or disabling conditions. The primary purposes of Treatment Services, which are often referred to as Recreational Therapy, are to restore, remediate or rehabilitate in order to improve functioning and independence as well as reduce or eliminate the effects of illness or disability. The primary purposes of Recreational Services are to provide recreation resources and opportunities in order to improve health and well being.

An IEP Team's Introduction To Functional Behavioral Assessment A free online publication that describes the IEP team's responsibility to do a functional behavioral assessment to identify the cause of a child's behavior in school and develop positive behavioral interventions and supports to address problem behavior. Prepared in 1998 By The Center for Effective Collaboration and Practice.

Angelman Syndrome Angelman Syndrome is a genetic disorder caused by abnormal function of the gene UBE3A.The angelman syndrome's foundation's mission is to advance the awareness and treatment of Angelman Syndrome through education, information exchange and research. The site provides information such as local contacts, regional representatives, an informative newsletter, listings of conferences and workshops and professional references.

ArcLink - Know the System This site contains a wealth of information for individuals with developmental disabilities and their families. Use this site to learn about support programs and how services are delivered in North Carolina, locate and research service providers, conduct a basic needs analysis, and research topics.

Association for Spina Bifida and Hydrocephalus The United Kingdom's Spina Bifida Association. Through a network of professional Advisers backed up by specialists in mobility, continence management, education and medical matters, ASBAH provides advice and practical support to people with these conditions, and their families.

Asthma and Allergy Foundation of America Home of the Asthma and Allergy Foundation of America. This site provides educational materials, news articles, an ask the allergist section, and more.

Attention Deficit /Hyperactivity Disorder Information From the National Institute of Mental Health. This website offers general information about AD/HD and lists other sources of information and support from the NIMH.

Autism Asperger Publishing Company An independent publisher specializing in books on autism spectrum disorders based on the latest research on autism, Asperger syndrome and other pervasive developmental disorders. AAPC takes pride in offering books that provide practical solutions for individuals with an autism spectrum disorder as well as parents, teachers or others working or living with an individual with an autism spectrum disorder. In addition to autism books they offer videos and other interactive products. They have recently expanded our titles of books and resources on social skills and sensory integration dysfunction due to the importance of these areas for individuals on the autism spectrum and the scarcity of resources in these areas. Whether you need information about an autism spectrum disorder or social skills or sensory integration, AAPC offer books, resources, and conferences of the highest caliber with a practical focus.

Autism Resources List of links to local protection and advocacy organizations, social groups, educational resources, developmental disability planning councils, vocational rehabilitation centers, state insurance departments and organizations that provide parent training. Also included are links to national organizations and resources. Some information available in Spanish.

Autism Society of America ASA is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, supporting research and advocating for programs and services for the autism population. This website includes an overview of the not-for-profit organization,links to local chapters (3 NC links), publications, and policy statements.

Autism Society of North Carolina The North Carolina chapter of the Autism Society of America. This website provides information on local resources, special events, summer camps, and an online bookstore

BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc. A Non-Profit Agency Providing an Objective Approach to Meeting the Diverse Needs of Families with Children Who are Deaf or Hard of Hearing and the Professionals Who Serve Them

Beach Center on Families and Disabilities The Beach Center, located at the University of Kansas, is funded through a grant from the US Department of Education. This website contains research briefs, Beach Center Newsletters, fact sheets on behavioral management, products, and links to support organizations. Good general information about behavior management, autism, fathers of children with special needs, and sleep problems. Technical note - the graphics can take a while to download.

Brain Injury Association of America Home page of the Brain Injury Association of America. This site includes good general information about brain injury, national and statewide resource directories, news and updates, and advocacy information.

Brain Injury Association of North Carolina The website of the Brain Injury Association of NC. This site includes an overview of the organization, links to information about brain injury, a listing of association events, a chat room and a bulletin board service.

Brain Injury Partners: Navigating the School System A website designed to give parents of school-aged children with a brain injury the skills they need to become successful advocates. Funded by the National Institute of Child Health and Human Development and made in collaboration with the Brain Injury Association of America.

Breastfeeding a Baby with Down Syndrome Benefits of and tips that may help breastfeeding your baby with Down Syndrome

Bubel/Aiken Foundation The Bubel/Aiken Foundation -with your help- will address areas of the disability community traditionally under-served. Investing in the education community will give us a voice in the future. Providing services and financial assistance, creating awareness, and recognizing `Champions of Change? will help us extend the boundaries of the human experience for all. Providing Services and Financial Assistance Our grant program will provide much needed funding to qualified programs serving families in need of funds to assist individuals in life skills and one-to-one social skills, but more importantly, to programs that provide social interaction with non-disabled peers. We will fund the development of curricula and the necessary training aimed at achieving full inclusion in the educational, employment, and recreational settings.

CHADD A National non-profit organization representing people with AD/HD (attentin deficit/hyperactivity disorder) that works to improve their lives through education, advocacy, and support. The website contains fact sheets, news releases, local chapter contact numbers (there are 11 in NC), research/ clinical trials information, advocacy tips for special education, and related links.

CanChild Centre for Childhood Disability Research CanChild is comprised of a multi-disciplinary team based at McMaster University in Canada who are working in the field of childhood disability. The aims of this research centre are to take a leadership role in identifying emerging issues for research, practice, policy and education. To conduct high-quality research effectively transfer knowledge into practice at clinical and health system levels. And provide education for consumers, service providers, policy makers and students. This website contains online publications, research discussion forum, and links. For a good review on hyperbaric oxygen, go to the "Keeping Currents" section, located in their "Publications and Products".

Carolinas Cystic Fibrosis Chapter The website of the North Carolina chapter of the Cystic Fibrosis Foundation. At this website, you can get chapter contact information, listings of local chapter events, and information for volunteers.

Cerebral Palsy Resource Center The Bissell family includes two sons who have cerebral palsy. Their family webpage provides general information related to CP, book lists, information on hippotherapy, links to related listservs (including one specifically for fathers of children with special needs) and other resources.

Cherab The Cherab Foundation is a nonprofit organization working to improve the communication skills and education of all children with speech and language delays and disorders, with an emphasis on verbal and oral apraxia. This website describes the organization, provides a link to their discussion list, and provides useful information and resources.

Child Care Law Center A national nonprofit legal services organization that uses legal tools to make high quality, affordable child care available to every child, every family, and every community. This website contains information about the organization, online versions of its quarterly newsletter, links to related websites, and more.

Child Care for Children with Spina Bifida A brochure from the Spina Bifida Association of America (1998) that answers commonly asked questions about how the Americans with Disability Act (ADA) affects the inclusion of children with spina in day care centers.

Children and Adults with Attention-Deficit/Hyperactivity Disorder A National non-profit organization representing people with AD/HD (attentin deficit/hyperactivity disorder) that works to improve their lives through education, advocacy, and support. The website contains fact sheets, news releases, local chapter contact numbers (there are 11 in NC), research/ clinical trials information, advocacy tips for special education, and related links.

Children's Defense Fund CDF provides a strong, effective voice for all the children of America who cannot vote, lobby, or speak for themselves. We pay particular attention to the needs of poor and minority children and those with disabilities. CDF educates the nation about the needs of children and encourages preventive investment before they get sick or into trouble, drop out of school, or suffer family breakdown.

Children's Law Clinic A program of the Duke University School of Law the Children's Law Clinic provides free legal advice, advocacy, and legal representation to low-income children. The Children's Law Clinic is one of the few programs in North Carolina with expertise in special education and school discipline law. This website offers program and contact information.

Commonly Asked Questions About Child Care Centers and the ADA Answers to 30 frequently asked questions about child care centers and the Americans with Disabilities Act. From the United States Department of Justice.

Communication Aid Manufacturer's Association The Communication Aid Manufacturers Association (CAMA) is a not-for-profit organization of the world's leading manufacturers of augmentative and alternative communication (AAC) software and hardware products. This website provides information about the companies who make up this organization, and lists the more than thirty 1-day workshops offered throughout the United States each year.

Community Partnerships, Inc. Based in Raleigh, this private, nonprofit agency provides services to people with disabilities of all ages, children younger than three who are at-risk of developing a disability, and the families of people with disabilities. This website offers information about the organization, its programs (including early intervention and vocational rehabilitation services), and its upcoming events.

Consortium for Appropriate Dispute Resolution in Special Education The National Center on Dispute Resolution, CADRE uses advanced technology as well as traditional means to provide technical assistance to state departments of education on implementation of the mediation requirements under IDEA '97. CADRE also supports parents, educators and school administrators to benefit from the full continuum of dispute resolution options that can prevent and resolve conflict and ultimately lead to informed partnerships that focus on results for children and youth. This website contains handouts, audio clips, videos, calendars and more. Funded by the United States Department of Education, Office of Special Education Programs.

Consortium of Developmental Disabilities Councils CDDC is a member-driven organization that is committed to representing the diverse interests of Developmental Disabilities Councils and the people with disabilities that Councils were created to serve.

Council for Exceptional Children An international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. Sets professional standards, provides continual professional development, and helps professionals obtain conditions and resources necessary for effective practice. The website is a great resource for school related issues. Includes the federally funded Educational Resources Information Center on Disabilities and Gifted Education.

Covenant with NC's Children Made up of more than 130 civic organizations, professional associations, advocacy groups and individuals who share an interest in improving the lives of children and youth in our state the Covenant works to ensure that children?s issues get a thorough hearing by the state legislature. The Covenant's Work Groups (including Early Childhood, Education, Health, and others)analyze the issues in their field and make recommendations for action to the full Covenant. At this website you can learn more about this organization, send messages to your representatives in the General Assembly as a "cyberlobbyist", get weekly updates of what's happening in the legislature and more.

Craniosupport This site offers support to families dealing with crainiosynostosis, it is the web home of a support organization for anyone who has had a craniofacial disorder affect their life

D-B Link The National Information Clearinghouse On Children Who Are Deaf-Blind, is a federally funded information and referral service established to collect, develop and distribute information to help improve the education and lives of children and youth with vision and hearing impairments, ages birth to 21. On this website, you can find the DB-LINK Catalog database listing articles, books, and other materials, the DB-LINK Resource database listing agencies, organizations, and personnel, DB-LINK publications, bibliographies, and job opportunities for professionals in the field of deaf-blindness.

DanceAbility International DanceAbility International?s mission is to encourage the evolution of mixed-abilities dance by cultivating a common ground for creative expression for all people. The mission is accomplished through performance, educational programs, teacher training and workshops. This website has information about the organization, videos of dances, an online store and more.

Deaflinx Deaf Linx is designed to be a one-stop shop for legal deaf cultural resources, American Sign Language (ASL) resources, deaf education, and deaf services. Health care, government assistance, real estate access, insurance, and travel also may create issues that uniquely affect deaf people and their families. There are many resources available here to help you find the information and programs that can greatly improve the deaf community, as well to help deaf individuals and their friends and family navigate all of the concerns that may arise in these areas. Whether you were born deaf, suffer from degenerative hearing, or are the parent or loved one of a deaf child, Deaf Linx has valuable information to help you find the information you are looking for.

Deafness Research Foundation The Deafness Research Foundation participates in the hunt for causes, treatments, and prevention of deafness and hearing impairments. A non-profit organization, DRF dedicates most of its website to information on current research grants, but you can also find a bookstore, on-line access to publications, and related links on this site.

Developmental Disablities Training Institute Based at the University of North Carolina in Chapel Hill, the DDTI helps people with develomental disabilities transition through each stage of their lives by informing professionals about best practices and training them to provide better care for their clients.

Disability Rights Advocates Founded in 1993, Disability Rights Advocates is a national and international non-profit organization dedicated to protecting and advancing the civil rights of people with disabilities. Operated by and established for people with disabilities, DRA pursues its mission through research, education, and legal advocacy. DRA's mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.

Disability World The web-zine of the International Disability Exchanges and Studies (IDEAS) Project 2000-2004, supported by the U.S. Department of Education National Institute on Disability and Rehabilitation.

Disability World en Espanol The spanish version of the bimonthly e-newsletter of international disability news and views.

Division TEACCH Division TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) is a comprehensive, community-based program dedicated to improving the understanding and services for autistic and communication handicapped children and their families across the state. This website decribes TEACCH's programs, lists its regional centers, and offers information and resources about autism, Asperger's syndrome, pervasive developmental disorders (PDD) and strategies for inclusion of children with autism-spectrum conditions.

Division of Vocational Rehabilitation The Division of Vocational Rehabilitation offers services to persons who have mental and/or physical disabilities whcih prevent them from getting and keeping a job. Finding and maintaining employment serves as the overall goal of a VR consumer. During the process of obtaining a job, VR can provide numerous services including assistive technology, transportation, rehabilitation technology, vocational assessment, supported employment, job coaching, on-the-job training, and much more. Be sure to check out the "VR Services to Consumer" link on this website. This link takes a consumer through the entire VR process and what he/she can expect at each step.

Dreams - A Short Video about People who have Down Syndrome An online video from the National Down Syndrome Society that features children and adults who have Down syndrome talking about their dreams and what they're proud of in their lives.

Dyslexia Research Institute The goal of the Dyslexia Research Institute, Inc. is to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD).The Dyslexia Research Institute operates Woodland Hall Academy and Dyslexia Research Institute Literacy and Life Skills (DRILLS), an adult program, provides parenting information, teacher training, advocacy and consultation, and research and development resources. The Link contains parenting resources and informative materials.

Easter Seals UCP North Carolina Easter Seals UCP North Carolina creates opportunities, promotes individual choice and changes the lives of children and adults with disabilities by maximizing their individual potential for living, learning and working in their communities. Services include individual and family support, children's therapy, advocacy, recreation, equipment, and support groups. This website includes descripitons of their services, news about their programs, job opportunities, and more.

Emergency Medical Services for Children A national initiative designed to reduce child and youth disability and death due to severe illness or injury. This orgnization works to ensure that state-of-the-art emergency medical care is available for all ill or injured children and adolescents and that they have access to the entire spectrum of emergency services, including primary prevention of illness and injury, acute care, and rehabilitation. Make sure you check out their section entitled "Rehabilitation and Children with Special Needs". It has an emergency medical form for children with special health care needs that can be downloaded using adobe acrobat (you can get this tool from the TelAbility Tools section).

Exceptional Children's Assistance Center The ECAC is a federally funded, statewide education, advocacy, and training program for families with school aged children who have disabilities. Their website includes information about their various programs, a listing of upcoming workshops, materials available from their lending library, and related links.

FEAT of North Carolina Families for Early Autism Treatment (FEAT) is a not-for-profit organization of parents and professionals founded to help families with children with the diagnosis of autism or pervasive developmental disorder (PDD) and to promote the use of Applied Behavioral Analysis (ABA) in their treatment. This website describes the organization, offers resources in our state, has links to relevant websites, an events calendar, and more.

Families of Spinal Muscular Atrophy This non-profit organization of families of children with spinal muscular atrophy (SMA) focuses on supporting each other and raising funds for research designed to find a cure for this condition. This website has information about SMA, lists local chapters (including the NC chapter headquartered in Cary), provides updates on research activities, has a section of SMA-related links, and lists pen-pals for children with SMA.

Family Center on Technology and Disability This program is designed to assist organizations and programs who serve families of children with disabilities by providing information and support on accessing and using assistive technology. It is run through the United Cerebral Palsy Associations and their project partners, Alliance for Technology Access (ATA), the Parent Advocacy Center on Education (PACER), Academy for Educational Development (AED), and InfoUse. This link will take you to their front page where you can choose between their text-only or graphical websites.

Family Support Network of North Carolina This organization provides information about disabilities, services and agencies which serve families of children who have special needs. Their Central Directory of Resources is a computerized database housing over 15,000 files of information and materials that may be helpful to families of children who have or are at risk for developmental disabilities. Contains links about resources, organizations,special education, advocacy, and assistive technology. Be sure to look at their listings of local Parent to Parent Support Groups to find one near you. To contact them by phone, call 1-800-852-0042.

Family Support Network of Western North Carolina A parent-to-parent program for families of children with special needs who live in Western North Carolina. This website provides information about the organization, its many programs, links to disability related websites, fact sheets, and more.

Family Village A wonderful program for anyone with a disability, this website integrates information, resources, and communication opportunities on the internet for persons with disabilities, for their families, and for those that provide them services and support. Includes informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature.

Family Voices Family Voices, a non-profit organization, acts as a national clearinghouse for information to improve the health care of children with special needs. This website includes information on policy issues, publications, state resources, and related links. Be sure to explore the "Advocate's Corner" when browsing this site and look into their information on ways to improve the transition to adulthood for children with special needs.

Family Voices-North Carolina Many groups focus on particular childhood illnesses or populations. Others represent children and adults, or concentrate on specific reform proposals. Until Family Voices was formed, there was no national organization that spoke for all children with special health needs. Family Voices believes that children with special health needs face common problems caused by fundamental inadequacies in our health care system. Family Voices does not support any specific health care reform plan. Instead, the role of Family Voices is to advocate for the inclusion of a set of basic principles in every health care reform proposal.

Family and Advocates Partnership for Education The Family & Advocates Partnership for Education is a new project which aims to inform and educate families and advocates about the Individuals with Disabilities Education Act of 1997 and promising practices.

Fatherhood Initiative A program of the United States' Department of Health and Human Services. This website includes an incredible amount of information on fatherhood ranging from ways to improve opportunities for low-income fathers to a "Toolkit for Fatherhood."

Federal Interagency Coordinating Council The Federal Interagency Coordinating Council will assure that all children ages zero to eight with or at risk for developing disabilities and their families benefit from an integrated, seamless system of services and supports that is family centered, community based, and culturally competent. As a result of this system, children with disabilities will have their physical, mental, health, developmental, and learning needs met in order to reach their full potential. The Federal Interagency Coordinating Council facilitates successful outcomes for young children with disabilities and young children at risk for developing disabilities and their families by: * effectively developing federal interagency policies, * identifying and recommending strategies for the coordination of federal program and fiscal resources, * minimizing fragmentation and duplication in programs and activities at the federal level, * developing strategies for the coordination of the provision of federal technical assistance and support activities, * exemplifying partnerships across federal programs, * ensuring that all supports and services are designed and implemented in a culturally competent, appropriate, and respectful manner, and ensuring that all children, regardless of culture, have maximum access to the full range of supports and services that are due them by federal law.

Federation for Children with Special Needs Based in Massachusetts, The Federation provides technical assistance,information, and support services to help families of children with special needs. There is a focus on special education and this site is a great resource for advocacy tips, IEP's and general information about IDEA (the Individuals with Disability Education Act). The site also has a text-only version available through the homepage.

Federation of Families for Children's Mental Health A National parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families. This website provides a description of the organization, a listing of affiliates (there are at least two in NC), and links to relevant sites.

First in Families of North Carolina First In Families of North Carolina believes: people with disabilities and their families should have the right to make independent choices and decisions about their lives; service delivery systems should be customer focused, flexible and incorporate the principles of self-determination. All of the First in Families Projects in NC offer funding to directly support families with children with developmental disabilities or delays. (Click on the "Projects" button for contact information to request an application.) First In Families of North Carolina supports program concepts and policies framed by dignity, cultural sensitivity, informed choice and personal control of resources by individuals with developmental disabilities and their families. It provides leadership to guide innovations in the service delivery systems for individuals with disabilities and their families; and supports the development of cohesive policies through the state.

General Information About Disabilities This web page contains a handout from the National Information Center for Children and Youth with Disabilities (NICHCY), which gives an overview and definitions of different categories of disabilities. It also describes what qualifies a child for services through IDEA (the Individual with Disabilities Education Act).

Genetic Alliance, Inc. The Genetic Alliance is an international coalition representing more than 300 consumer and health professional organizations with millions of members--all working together to promote healthy lives for everyone impacted by genetics. The Alliance supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies.

Global Early Intervention Network An internet community for everyone who cares about early intervention. Hosted by Northeastern University.

Governor's Advocacy Council for Persons with Disabilities This state run organization seeks to provide for statewide protection and advocacy program; investigate complaints; pursue legal remedies for protection; review and recommend changes in laws; aid and assist local advocacy program; and advise and assist on employment issues. At this website you can learn more about the organization, disability rights, events, read newsletters and more. Site also available in spanish.

Greater Raleigh Spina Bifida Support Group A new website (started in 2010) from a group of families and providers who care for children with spina bifida in the Triangle region of North Carolina. Here you can find more information about the organization and mission, a calendar about upcoming local events relevant to the group, a blog, photos and other information about group members.

HEATH Resource Center The HEATH Resource Center of The George Washington University, Graduate School of Education and Human Development is the national clearinghouse on postsecondary education for individuals with disabilities. Support from the U.S. Department of Education enables HEATH to serve as an information exchange about educational support services, policies, procedures, adaptations, and opportunities at american campuses, and help youth make the transition to adulthood.

Health Care Transitions: College and Beyond A 24-minute online video that tells the story of a young man with arthrgryposis and what it's taken for him to succesfully completes college and make the transition to adulthood. From the Institute for Child Health Policy in Florida.

Healthy and Ready to Work This is the website for a federally supported program that promotes a comprehensive system of family centered, culturally competent, community-based care for children with special health care needs may need assistance in making the transition from pediatric to adulty health care and to post-secondary education and/or employment. It provides information about the program, a calendar, related links and other materials.

Hydrocephalus Association A nonprofit organization, the Hydrocephalus Association seeks to provide support, education, and advocacy for individuals, families, and professionals caring for people with hydrocephalus.This website provides in depth information on hydrocephalus,a national directory of people with hydrocephalus and Hydrocephalus Support Groups, a newsletter, scholarship information, and much more.

I Am Your Child I Am Your Child is a national public awareness and engagement campaign to make early childhood development a top priority for our nation.

IDEA Practices IDEA Practices informs families, professionals, and the public about the Individuals with Disabilities Education Act (IDEA). This website provides information about the act, and up-to-date revisions in the law.

Institute for Child Health Policy The Institute for Child Health Policy is a state-wide Institution of Florida's State University System, headquartered at the University of Florida with affiliates at other state institutions across Florida. The Institute focuses its attention on issues related to children in managed care with an emphasis on children with special health care needs. Access, utilization, cost, quality and family involvement are this program's principal areas of interest. This excellent website contains information about the program, policy statements and other products, presentations from other programs funded through the federal Maternal and Child Health Bureau, and a large arrray of useful links. Be sure to look through their set of resources available to help young adults with disabilities transition to work and adulthood.

Insulin Pumpers An international family oriented organization that provides information and support for adults and children with diabetes and their families interested in insulin pump therapy. You'll find chat rooms, links, and even a special section devoted to children with diabetes and the stories about how an insulin pump has changed their lives.

International Brain Injury Association, The The International Brain Injury Association (IBIA) is dedicated to the development and support of multidisciplinary medical and clinical professionals, advocates, policy makers, consumers and others who work to improve outcomes and opportunities for persons with brain injury. The IBIA was created in response to the growing demand from professionals and advocates throughout the world for collaboration and more information on all aspects of brain injury, from prevention to long-term care issues. The IBIA works to develop positive relations and interactions between individuals, families, groups, organizations, institutions, diverse cultures and nations. The IBIA strives to provide international leadership for creative solutions to the issues associated with brain injury.

International Center for Diasbility Resources on the Internet, The The International Center for Disability Resources on the Internet (ICDRI) is a non-profit center based in the United States and designated as a 501 (c)(3) entity. Their overarching vision is the equalization of opportunities for persons with disabilities. As an internationally recognized public policy center organized by and for people with disabilities, ICDRI seeks to increase opportunities for people with disabilities by identifying barriers to participation in society and promoting best practices and universal design for the global community. ICDRI?s mission includes the collection of a knowledge base of quality disability resources and best practices and to provide education, outreach and training based on these core resources. ICDRI makes this information available in an accessible format on their web site. In addition, ICDRI provides Accessibility Oversight Consulting Services as a fee-for-services offering for government, university and private sector clients.

International Child Amputee Network I-CAN (International Child Amputee Network)provides information and support contacts to families of children with absent or underdeveloped limbs.

Juvenile Diabetes Research Foundation of Eastern North Carolina The mission of JDRF is to find a cure for diabetes and its complications through the support of research. The Triangle/Eastern NC Chapter of JDRF covers 51 counties in eastern North Carolina, ranging from the Triangle region to the coast. At this website, you can find more information about the organization, browse its calendar of events, read about clinical trials, and much more.

KASA Kids As Self-Advocates (KASA) is a national, grassroots network of youth with special needs and their friends who work to spread helpful, positive information among their peers to increase knowledge about living with special health care needs, health care transition issues, education, employment, and other topics. A program of Family Voices, a national non-profit organization of families and friends speaking on behalf of children with special health care needs.

LD Online The website of The Learning Project, sponsored by PBS station WETA in Washingtom,DC. This exceptional website is a wonderful source of information about learning disabilities and resources available to optimize students' learning experiences. You can participate in special education bulletin board discussions and online chat rooms, shop their LD resource store, or subscribe to their newsletter. Also available in spanish.

La Leche League International A resource to help families continue breastfeeding their children. Can search the site for "special situtations" and "disabilities" for more information, including materials in Spanish.

Learning Disabilities Association A national, nonprofit organization, the Learning Diabilities Association (LDA) works to advance the education and general welfare of children and adults who have learning disabilities. LDA seeks to accomplish its mission through advocacy, education, research, service, and collaborative efforts. This website includes general facts and information about learning disabilities, resources, membership information, and a bookstore. Also be sure to check out the link to our state's LDA page.

Lekotek The National Lekotek Center aims to contribute to the knowledge base about the link between play and early learning for children with special needs. This website provides information and resources for parents and professionals, including a listing of play and toy ideas developed for different conditions.

Let's Face It Let's Face It USA is a nonprofit network that links people with facial disfigurement and all who care for them to resources that can enrich their lives. These resources include organizations and resources that focus on the many aspects of facial disfigurement as well as general information on genetics. The resources are also grouped by specific conditions (i.e., cleft palate, crouzon syndrome, moebius syndrome, cancer, etc.). There are also specific Parent and Educator Resources containing a wealth of information for parents and educators. Finally, the Facial Surgery and Recovery page contains resources for pain control, eating, prosthetics, and legal resources.

MUMS - Mothers United for Mutual Support MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS aims to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Their database includes over 15,700 families from 48 countries, covering over 2700 disorders, very rare syndromes or undiagnosed conditions. Their newsletter allow families to share and speak out about issues affecting their lives. This website describes the origins and goals of this organization, provides information about various conditions, and includes a directory of hyperbaric oxygen therapy (HBOT) providers.

Maple Syrup Urine Disease Family Support Group The MSUD Family Support Group is a nonprofit organization of parents of children with MSUD, adults with MSUD, health-care professionals and others interested in MSUD. This website contains information about the organization, information about MSUD, a list of contacts and much more

March of Dimes The Mission of the March of Dimes is to improve the health of babies by preventing birth defects and infant mortality. This is carried out through programs of research, community services, education and advocacy.

Medicaid Managed Care Guide From Families USA. This site provides information on how states monitor their medicaid managed care programs, and enables families and their providers to be better advocates within this health insurance system.

NAMI North Carolina NAMI NC (formerly The North Carolina Alliance for the Mentally Ill) is a grass-roots organization providing support, education and advocacy for the families and friends of people with serious mental illness, and for persons with serious mental illness. This website describes the organization and its membership, bulletin boards for its 32 statewide affiliates, a suggested reading list, links to related websites and more. Use the navigation bar on the left of its screen or the site's search engine to locate several sections specifically for children's issues, including an online edition of the INSIGHTS newsletter.

NC Office on the Americans with Disabilities Act This website provides information about the ADA and describes NC's office, a part of the NC Department of Administration.

NC Partners in Policy Making The NC Council on Developmental Disabilities is offering the Partners in Policy Making training opportunity. This is a program that educates people with disabilities and their families on developing leadership skills and how to work with policy makers to advocate for change in legislation and within communities.

National Association for Down Syndrome Based in Chicago, Illinois, this non-profit organization provides support for families of people with Down Syndrome through conferences and family networking. This website describes the organization, offers a bimonthly newsletter, provides many links to other related websites and offers contact numbers for people living inside and outside the Chicago area. Note: Their products section includes posters and videos (including an exercise video for people with Down Syndrome).

National Association for Family Child Care The National Association for Family Child Care is a non-profit organization dedicated to promoting quality child care by strengthening the profession of family child care. The goals of the Association are: to strengthen state and local associations as the primary support system for individual family child care providers; to promote a professional accreditation program which recognizes and encourages quality care for children; to represent family child care providers by advocating for their needs and collaborating with other organizations; to promote the diversity of the family child care profession through training, state and local associations, public education, and Board membership; and to deliver effective programs through strong organizational management.

National Association of Developmental Disabilities Councils NADDC is the national organization of Developmental Disabilities Councils that advocate and work for change on behalf of people with developmental and other disabilities and their families. NADDC promotes national policy to enhance the quality of life for all people with developmental disabilities. NADDC works with Congress and others in the reauthorization of the Developmental Disabilities Act, to strengthen Councils' systems change and advocacy role.

National Association of School Nurses, The NASN's core purpose is to advance the delivery of professional school health services to promote optimal learning in students.

National Association of the Deaf Founded in 1880, the National Association of the Deaf (NAD) is the oldest and largest organization representing people with disabilities in the United States. Programs and activities include grassroots advocacy and empowerment for people with hearing impairment, captioned media, certification of American Sign Language professionals; certification of sign language interpreters; deafness-related information and publications,legal assistance, policy development and research, public awareness, and youth leadership development.

National Attention Deficit Disorder Association Serving the needs of people with ADD/ADHD since 1989

National Campaign for Hearing Health This national program, sponsored by the Deafness Research Foundation, advocates for improved detection, prevention, intervention, and research into hearing impairment. This site provides great resources for parents of children with hearing loss as well as helpful information on how to become an advocate for the cause of hearing health.

National Center for Learning Disabilities Based in New York, this organization seeks to provide information, support, and advocacy to help improve the achievement of people with learning disabilities. This site includes a description of the organization, research news, IDEA updates, information about special education, and a resource locator for school programs throughout the country.

National Center on Financing for Children with Special Health Care Needs Based at the Institute for Child Health Policy in Florida, this organization seeks ensure that all families of CSHCN will have adequate private and/or public insurance to pay for the services they need. This site includes information about the project, issue briefs, educational handouts, and links to useful resources.

National Child Care Information Center This federally funded program provides legislative updates, general information and state contacts for child care services.

National Council on Disability The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD's overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature of severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. This website features information on advocacy, IDEA, inclusion, and self-determination.

National Deaf Education Network and Clearinghouse/Info To Go Info to Go, formerly the National Information Center on Deafness, is a centralized source of accurate, up-to-date, objective information on topics dealing with deafness and hearing loss in the age group of 0-21. Info to Go responds to a wide range of questions received from the general public, deaf and hard of hearing people, their families, and professionals who work with them. Info to Go collects, develops, and disseminates information on deafness, hearing loss, and services and programs related to children with hearing loss from birth to age 21.

National Down Syndrome Congress This national non-profit organization aims to be the national voice for state and local groups, individual members, persons with Down syndrome, and all other interested persons. It serves as a clearinghouse on Down syndrome by collecting, creating, and disseminating information via the functions of the National Down Syndrome Congress Center, the annual convention, and the Down Syndrome News.

National Early Childhood Technical Assistance Program NECTAS is a national technical assistance consortium working to support states, jurisdictions, and others to improve services and results for young children with disabilities and their families.

National Fatherhood Initiative The National Fatherhood Initiative seeks to improve the lives of children by helping men to become better fathers. A non-profit organization, NFI enables fathers by distributing information, conducting public awareness campaigns, organizing community fatherhood forums, providing resource material, and publishing a quarterly newsletter. This website includes access to numerous on-line resources, advice on fatherhood, an on-line discussion forum for fathers, membership information, and links to related sites.

National Head Start Association The National Head Start Association (NHSA) is a private not-for profit membership organizaion that provides a national forum for the continued enhancement of Head Start services for poor children ages 0 through 5, and their families.

National Information Center for Children and Youth with Disabilities Now called the National Dissemination Center for Children with Disabilities. Provides information on disabilities and disability-related issues for families, educators, and other professionals. An excellent site for policy issues, IDEA / special education, pertinent nationwide conferences and resource organizations at both the state and federal levels. Text-only version available.

National Institute on Deafness and Other Communication Disorders The National Institute on Deafness and Other Communication Disorders (NIDCD) is one of the Institutes that make up the National Institutes of Health (NIH). 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. This website contains health information for parents, a directory of national resources, listings of clinical trials, quarterly newsletters, and more.

National Marfan Foundation Founded by people who have Marfan Syndrome and their families, the National Marfan Foundation gathers and distributes information to families, patients, members, and the health care community, provides a network of support, and helps to fund and encourage research on this condition. Upcoming events, news, a detailed description of Marfan Syndrome, and publications can all be found on this website.

National Network for Child Care: Children with Special Needs This site contains online articles (many by Doreen B. Greenstein, Ph.D. a Developmental Psychologist at Cornell University) designed to enhance the inclusion of children with special needs in day care and early childhood centers. Some articles are also available as printable handouts. The site was last updated in 2000.

National Organization for Rare Disorders A federation of health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Be sure to look at NORD's Medication Assistance Program, and databases on rare diseases, genetic syndromes, "orphan" drugs, and specialty organizations.

National Organization on Mental Retardation Educational information, policy statements helpful to families and professionals caring for individuals with mental retardation.

National Parent Network on Disabilities National advocacy organization for families of children, youth, and adults with disabilities. Contains updates of federal legislation affecting the special needs community amd many disability-related links. A good resource for issues related to IDEA / special education, and the ADA. You can use this site to sign up for their weekly update- "The Friday Fax".

National Program for Playground Safety In 1995, the University of Northern Iowa established the National Program for Playground Safety (NPPS) under a grant from the Centers for Disease Control and Injury Prevention (CDC) in Atlanta. Through its efforts to help address America's playground safety issues, NPPS hopes to see a decline in the nearly 200,000 annual playground-related injuries suffered by America's youth. NPPS Serves as a recognized national clearinghouse for playground safety information.

National Spinal Cord Injury Association A nonprofit organization, The National Spinal Cord Injury Association (NSCIA) works to empower individuals and families with spinal cord injury through education and support. Information for the newly injured, pen pal directories for kids, general fact sheets, special project information, membership options, and links to a wealth of resources are all included on this website.

National Stuttering Association The National Stuttering Association (NSA) advocates in the community for those who stutter by attempting to raise public awareness through education and outreach activities. This website includes membership information, access to a bookstore,news, and links to related resources about speech impediments.

National Survey of Children with Special Health Care This chartbook reports results of the first ever national survey to determine the prevalence of special health care needs (SHCNs) among children and adolescents ages 17 and younger. The chartbook provides both national- and state-level data on the size and characteristics of of children and adolescents with SHCNs. The chartbook includes information on prevalence, health and functional status, insurance coverage, health care needs and access to care, care coordination, family-centered care, and impact on families.

National Transition Network The National Transition Network strives to serve the public by strengthening the capacity of individual states to effectively improve transition and school-to-work policies as they relate to youth with disabilities. The Network provides direct technical assistance to states with current transition projects as well as developing and distributing a variety of publications. This website includes online publications, workshop information, state contacts, and links to related websites.

Netting the Evidence: A ScHARR Introduction to Evidence Based Practice on the Internet Netting the Evidence: A ScHARR Introduction to Evidence Based Practice on the Internet

North Carolina Assistive Technology Project The NC Assistive Technology Program is dedicated to creating a statewide system that coordinates assistive technology services. Activities include awareness and training, consumer groups, expansion projects, funding information, technincal assistance, and much more. Be sure to take a look at the Check-It-Out program - an assistive technology equipment loan program for North Carolinians with disabilities, their families, and their service providers.

North Carolina Child Advocacy Institute Since its creation in 1983, the North Carolina Child Advocacy Institute (NCCAI) has had a positive influence on the lives of children and youth in our state through its involvement in public policy; its research and reporting on key indicators of children's well-being; and , its coalition and community building activities.

North Carolina Child Care Search Engine Developed by the NC Division of Child Development, this site provides information about child care in North Carolina, contact numbers for the child care resource and referral program and a searchable database of child care providers in our state.

North Carolina Council on Developmental Disabilities The DD Council's role in NC's ADD network is to promote a community service delivery system that is personalized to meet the unique needs of each individual with a developmental disability. We do this by funding community partners to conduct activities, across the state, that advance innovative, cost-effective ways of providing services. We share information about the best of what's happening across the nation and advocate for changes to make NC communities more welcoming to and supportive of people with disabilities. A good resource for young adults making the transition to adult services.

North Carolina DHHS- Division of Services for the Blind This North Carolina State Division empowers individuals who are blind or visually impaired to achieve their maximum potential through services provided by competent and caring professionals. Programs within the Division provide or coordinate services in areas related to Education, Independent Living, Vocational Rehabilitation and the Prevention of Blindness. This website contains a listing of excellent resources and links for people who are blind or visually impaired.

North Carolina Deaf - Blind Associates The North Carolina Deaf-Blind Associates (NCDBA), is an independent, non-profit organization that seeks to inform and empower North Carolina citizens who have vision and hearing impairments to actively participate in decision making processes affecting their lives. This website lists recent events and contact information for the organization.

North Carolina Division of Public Health The NC Division of Public Health works toward protecting and improving the health of the people who live and work in North Carolina. Lists the main components within this division. An easy way to look up contact program information.

North Carolina Occupational Therapy Association This website provides information about our state's occupational therapy association and its members, lists its upcoming conferences, publicizes employment opportunities, offers relevant links, and more.

North Carolina Office on Disability & Health Dedicated to promoting the health of North Carolinians with disabilities through the following activities: Improving access and inclusion of persons with disabilities in public health and health care services; increasing awareness and understanding of the health promotion and health related needs of people with disabilities; educating individuals with disabilities, clinicians, and providers; supporting the development of targeted health promotion programs; identifying existing health promotion resources for persons with disabilities and providers; conducting and reporting on disability research and data collection.

North Carolina Office on Disability and Health Funded by the US Centers for Disease Control and Prevention (CDC), and affiliated with the Frank Porter Graham Child Development Center in Chapel Hill, this program is dedicated to promoting the health of North Carolinians with disabilities. Their website contains information about the office, its staff, and its programs, including many useful resource to help children with special health care needs transition to adulthood.

North Carolina Parenting Education Network The North Carolina Parenting Education Network (NCPEN) is working to build the field of parenting education in the state with a focus on partnerships between parents and child care providers, teachers, and parent educators. Working together we can help each child reach his or her own potential! NCPEN is an unfunded collaborative of parenting education organizations and agencies.

North Carolina Speech, Hearing and Language Association The North Carolina Speech, Hearing and Language Association is the professional association of speech and language pathologists and audiologists in North Carolina. It promotes the professional practice of speech/language and hearing sciences, to advocate on behalf of the professional practice, to serve as the voice of the professions and to advocate for communicatively impaired persons in North Carolina. NCSHLA is at the forefront of issues affecting speech and hearing professionals, and it is involved in governmental policy-setting and decision-making processes. The members study policy decisions that affect speech/language pathologists and audiologists and formulate positions from the perspective of practicing professionals. The Association's goal is to assure that the ideas and concerns of its members are considered. NCSHLA is an affiliate of both the American Speech-Language-Hearing Association (ASHA) and the American Academy of Audiology (AAA), and it is considered a national leader in member representation.

Office of Disability Employment Policy A national resource to help people with disabilities find and keep jobs. A helpful resource for adolescents making the transition from school to work. This website includes information about the Job Accomodations network, a listing of state liaisons, and more.

Office of Employment Support Programs - Youth with Disabilities This section of the OESP website provides information to help youth with disabilities make the transition from school to work.

Our Kids Run by and for an international "family" of over 800 parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. Covers multiple conditions including developmental delay, sensory integration problems, cerebral palsy,rare genetic disorders, and others. Professionals, organizations and therapists also monitor and contribute.

PAGER Pediatric/Adolescent GastroEsophageal Reflux Association (PAGER)is a national, non-profit organization run by several parents of children with GER. It provides information and support to people about Gastroesophageal Reflux (GER)and how it can affect your child's health and feeding ability. The website contains information about the organization and its events, research updates and stories from experienced parents of children with GER. The discussion section is a popular destination.

PICK - Parents of Infants and Children with Kernicterus The website for Parents of Infants and Children with Kernicterus (PICK), a parent-run non-profit organization dedicated to education and prevention of KI (kernicterus) as well as support and research for families affected by KI. On this website, you can learn more about kernicterus (it's causes, treatments, and outcomes), find family support resources, learn more about this organization, and more.

Palaestra This website describes the subscription magazine, Palaestra, a resource on adapted sports and physical activity. Palaestra's missions are to 1)enlighten parents in all aspects of physical activity to make them the best possible advocates for their children during IEP (Individual Education Plan) discussions with the school or community recreation staff and 2) increase the knowledge base of those professionals working with children or adults with disabilities.

Parent Advocacy Coalition for Educational Rights Located at the University of Minnesota, PACER's mission is to improve and expand opportunities that enhance the quality of life for children and young adults with all disabilities (physical, mental, emotional, learning) and their families. PACER now offers 20 major programs, including Parent Training programs, programs for students and schools, and technical assistance to regional and national parent centers. The website includes resources and publications on advocacy, special education, transition to adulthood, and emotional and behavioral disorders.

Parents Exchange An information, referral, and advocacy service for parents and caregivers of children with disabilities and professionals who work with families in Pennsylvania. Provides listing of conferences, bibliographies and reading lists, and disability specific links.

Partnerships for Change From the Department of Social Work at the University of Vermont. This organization seeks to improve the services to children with special health care needs and their families by focusing on integrating this approach into the education and practice of professionals.

Partnerships for Children Child care resource and referral services for Wilson County.

Patient Travel (National Patient Air Transport Helpline) This non-profit organization helps patients find appropriate charitable medical air transportation resources in the United States. It also operates various Special-Lift and Child-Lift programs on behalf of special disease organizations and/or clinical research centers in the United States. Their goal is "..to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation." The website describes the programs they offer and has their toll-free phone number parents and professionals can call to look into air travel options.

Prader Willi Syndrome Association The Prader Willi Syndrome Association provides to parents and professionals a national and international network of information, support services, and research endeavors for this genetically based developmental disability.The site lists information, links, research, conferences/events, and more. It's in Spanish as well.

Prevent Blindness America A national organization dedicated to reducing blindness and visual impairment by screening all young children for vision problems.

Prevent Child Abuse America National organization devoted to the prevention of child abuse

Prevent Child Abuse North Carolina Prevent Child Abuse North Carolina was founded in 1979 by a group of concerned citizens and is the single, statewide not-for-profit organization with the mission of ending child abuse in our state.Their goals include a prevention network, public awareness, advocacy, and programs. The site provides information, press releases, and resources.

Project: Proud Families, Inc. The website of a Christian non-profit in Siler City, NC designed to offer services to families who have a child or children with a special need(s). At this site, you can find information about the organization, its support group(s), workshops, family support activities, an Ask the Nurse or Pharmacist section, and information about their "Button Challenge".

Quality Mall Quality Mall collects and disseminates information related to or useful in promoting quality of life for persons with developmental disabilities. It is not a retailer or vendor of products or services, but uses the theme of a shopping mall to help connect visitors to the best products and services available. Develpoed by the Research and Training Center on Community Living at the University of Minnesota's Institute on Community Reintegration and is funded through a grant from the federal government.

RESNA The Rehabilitation Engineering and Assisitive Technology Society of America (RESNA) seeks to improve the potential of people with disabilities to achieve their goals through the use of technology. This nonprofit organization promotes research, advocacy, education, and the provision of technology. Has a large number of helpful and informative links.

Raleigh March of Dimes Home page of the Raleigh chapter of March of Dimes. Provides information on programs, a calendar of events, and ways to get involved.

Reed Martin's Special Education Law & Advocacy Stratgies An online information center about special education law from Reed Martin, an attorney in Morgantown, West Virginia. While the website's design makes it somewhat difficult to navigate, it is packed with information in various media (articles, books, videos, chat rooms, message boards) about advocating for children with special needs at school.

Rehabilitation Engineering Research Center on Communication Enhancement Based at Duke University, this multisite research center seeks to assist people who rely on assistive technology (specifically augmentative and alternative communication) to achieve their goals by advancing and promoting AAC technologies and supporting the individuals who use, manufacture, and recommend them.

Rett Syndrome Research Foundation Our mission is to fund, promote and accelerate biomedical research for the treatment and cure of Rett Syndrome.

SNAP Playgroup SNAP (Special Needs Awareness Project) was created to help families with children (birth to 5 years old) regarding all aspects of Early Intervention in Wake County. We invite you to call (219.0852) for more information or resources. We also invite you to attend a free Friday morning playgroup to meet parents with children birth to 3 in the Early Intervention Network and gather information on area resources.

STARBRIGHT Foundation STARBRIGHT is a unique program that is dedicated to empowering seriously ill children to fight the social and emotional challenges that they face every day. STARBRIGHT educates and encourages children through numerous creative projects. One particular project, Videos With Attitude, provides seriously ill teens and pre-teens with a video series geared to help them cope and learn to advocate for themselves. In the videos, teen survivors of illness share tips and solutions for coping with the challenges of serious medical conditions. Videos are free to children with a serious illness and their families. Be sure to check out all the current projects when browsing this website.

Sample IEPs and 504 Plans for Children with Diabetes Samples of IEP and 504 plans submitted to the "children with diabetes" website by parents. Arranged by grade, these plans are helpful for children who are on special diets, those taking insulin injections at school and/or those using an insulin pump.

Social Security Administration Work Site The SSA Work Site gives detailed descriptions of Social Security Work Incentive Programs via web links and videos. This site provides information that can help an individual transition from school to work without losing his/her SSI or SSDI benefits, as well as get rehabilitation and vocational services.

Spastic Paraplegia Foundation A national not for profit organization dedicated to support people with Hereditary Spastic Paraplegia and Primary Lateral Sclerosis. This website contains information about the organization, HSP and PLS, research updates, patient forums and more.

Special Education Resources on the Internet A collection of links designed to make on-line Special Education resources more easily and readily available. Site is modified and updated on a regular basis and includes links related to autism, hearing impairment, visual impairment, inclusion, and other topics.

Special Needs Advocate for Parents Provides information, education, advocacy, and referrals to families with special needs children of all ages. Contains an online bulletin board and newsletter.

Spina Bifida Association of America The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected. The Association was founded in 1973 to address the specific needs of the spina bifida community and serves as the national representative of over 70 chapters. SBAA's efforts benefit thousands of infants, children, adults, parents and professionals each year. The website includes information about many of their services, including a toll free 800 Information and Referral Service, a Bi-monthly Newsletter,Legislative Updates, Publications, Agent Orange Class Assistance Program, Professional Advisory Council, Nursing Council, Conferences and Educational Symposiums, Adult Network, Scholarship Funds, Public Awareness Campaign, Chapter and Member Services, National Public Service Announcements,Individual and Systems Advocacy and the SBAA Research Fund.

State Partnership Initiative This website, based at Virginia Commonwealth University's Rehabilitation and Research Training Center, serves as an information outlet for highlighting the activities of the State Partnership Systems Change Initiative States, as well as, a central source of information and resources on the Ticket to Work and Work Incentives Improvement Act, benefits assistance, Medicaid buy-in programs and employment resources. Be sure to look at North Carolina's participating program, looking to overcome the barriers to work faced by many teenagers with disabilities who are trying to transition to adulthood and work.

Students with Disabilities Preparing for Postsecondary Education An online pamphlet from the Office for Civil Rights (OCR) in the U.S. Department of Education that informs students with disabilities about their rights and responsibilities as they transition into postsecondary schools. This pamphlet explains the obligations of a colleges to provide academic adjustments, including auxiliary aids and services, to ensure that the school does not discriminate on the basis of disability.

Stuttering Foundation of America Based in Memphis, Tennessee, the Stuttering Foundation of America, the first nonprofit, charitable association in the world to concern itself with the prevention and improved treatment of stuttering, distributes over a million publications to the public and professionals each year. This web site has information for those who stutter and their families as well as professionals.

TEACCH Division TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) is a comprehensive, community-based program dedicated to improving the understanding and services for autistic and communication handicapped children and their families across the state. This website decribes TEACCH's programs, lists its regional centers, and offers information and resources about autism, Asperger's syndrome, pervasive developmental disorders (PDD) and strategies for inclusion of children with autism-spectrum conditions.

TWIN HOPE TWIN HOPE, INC.is dedicated to the service of families, to the education of the public and professionals, and to broaden the awareness of Twin-to-Twin Transfusion Syndrome (TTTS) and other twin related diseases. The site provides information about support, fundraisers, a newsletter, treatment centers and research.

The Alliance for Technology Access The Alliance for Technology Access (ATA) is a network of community-based Resource Centers, Developers, Vendors and Associates dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies.

The American Federation for the Blind The American Foundation for the Blind (AFB) is a leading national resource for people who are blind or visually impaired, the organizations that serve them, and the general public. The mission of the American Foundation for the Blind is to enable people who are blind or visually impaired to achieve equality of access and opportunity that will ensure freedom of choice in their lives.

The ArcLink This site contains a wealth of information for individuals with developmental disabilities and their families. Use this site to learn about support programs and how services are delivered in North Carolina, locate and research service providers, conduct a basic needs analysis, and research topics.

The Cerebral Palsy Network Site based in Olympia WA, developed by parents of children with CP. Offers chat rooms for discussion of parent-centered CP related issues.

The Fathers Network This website celebrates and supports fathers and families raising children with special health care needs and developmental disabilities. It contains news and resources, articles by dads, links, bulletin boards, and a photo album. Has materials in Spanish as well. Funded by the Office of Children with Special Health Care Needs, Washington State Department of Health.

The Flutie Foundation The Doug Flutie, Jr. Foundation provides funding for services for financially disadvantaged families who need assistance in caring for their autistic children, funds research and education into the causes and consequences of childhood autism, and serves as a clearinghouse and communications center for new and innovative programs and services developed for autistic children.

The Genetic Alliance An international coalition based in Washington, DC that supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies. This website provides information about the organization, a calendar of events, a useful online directory of genetic resources, including support groups for a wide variety of conditions, and much more.

The Governor Morehead School for the Blind The Governnor Morehead School for the Blind strives to successfully educate North Carolina's children and youth with visual impairments to be productive, independent, confident citizens, and life-long learners. The school works with North Carolina students with visual impairments from birth through age 21, their parents, and the professionals who serve them. This website provides detailed descriptions of the services and programs offered by the school, it's history, and links to related websites.

The Magic Foundation MAGIC is a national non-profit 501(c)(3) organization providing support and education regarding growth disorders in children and related adult disorders, including adult GHD. This website has been updated for 2000 to include their quarterly newsletter, and a place to register for their listserv.

The National Center of Medical Home Initiatives for Children with Special Health Care Needs The National Center of Medical Home Initiatives for Children with Special Needs is a cooperative agreement between the American Academy of Pediatrics and the federal Maternal and Child Health Bureau (MCHB). The mission of the National Center is to work in cooperation with federal agencies, particularly the MCHB, to ensure that children with special needs have access to a medical home. The National Center provides support to pediatricians, families, and other medical and non-medical providers who care for children with special needs in the changing health care environment. This website provides information about the program, technical assistance, national and regional resources and information on the medical home training program.

The North Carolina Chapter of Families of Spinal Muscular Atrophy There are currently 12 families active in the chapter. It is our intention to have a considerable impact on the efforts toward finding a cure for Spinal Muscular Atrophy.

The Sarah Jane Brain Project Begun by the father of a girl who sustained a brain injury, this national organization is working to create a model system for children suffering from all Pediatric Acquired Brain Injuries. At this website you can learn more about the organization, its events, find links to useful information and resources, follow Sarah Jane's progress in words and videos, and more.

The Shaken Baby Alliance The mission of the Shaken Baby Alliance is to provide support for SBS victim families (Including adoptive and foster parents), advocate for justice for SBS victims, and increase SBS awareness.

Tourette Syndrome Association, Inc. The TSA is a national not-for profit organization dedicated to providing up-to-date, accurate information about Tourette Syndrome. This website describes the organization, provides information about Tourette Syndrome, offers books and videos for purchase, has an online newsletter (non-members can only read the first page each edition), an ask the expert page and a new education and advocacy section.

Transition Research Institute Located at the University of Illinois at Urbana-Champaign's School of Education, this institute is dedicated to improving school-to-work and transition outcomes for students with disabilities through research. This website provides teachers, service providers, clients and researchers with an excellent source of information. Be sure to check out the available on-line publications.

Transition Revolution Executive Summary In March, 1999, a group of 50 health policy administrators, analysts and leaders, as well as physicians, nurses, teachers, family representatives, advocates, and adolescents with disabilities were invited by the Maternal Child Health Bureau to discuss how far the health care industry has come since 1989 in facilitating transitioning youth from pediatric to adult health care and what work still needed to be done. This website provides the executive summary of this meeting with evaluations and plans for future interventions and programs.

Transition Services in the IEP An online guide to including and integrating transition services into school based Individualized Education Plans. While it was written in 1993, it does provide a good overview of the process and offers suggestions for both parents and professionals. From the National Information Center for Children and Youth with Disabilities.

Triangle Down Syndrome Network This organization exists to support and connect families of children with Down syndrome by organizing and promoting activities such as monthly support meetings, parent socials, playgroups, Mom's Night Out, holiday parties, and more. Their website provides information about the organization, a calendar of events, a newsletter, links to resources, and more.

UNC Hospital School UNC Hospitals is host to the state?s only accredited Pre-Kindergarten through 12th Grade (PK-12) Hospital School. The school helps children keep up with their classroom studies during their hospital stay and works with the local schools to provide a smooth transition back to school. There are two separate locations for the school within the UNC Hospitals complex. The pediatric component of the school is located on the seventh floor of the Children?s Hospital, and the psychiatric component is located on the second floor of the Neurosciences Hospital. At both locations, there are classrooms, offices and a media center or computer lab. Although there are classrooms and physical space designated as ?school? where students ?go to school?, school often goes to them. When needed, teachers work with students at bedside or on the patient?s units where they are being treated. To learn more about the Hospital School, click here: http://chccs.k12.nc.us/hospital

United Ostomy Association, Inc. The United Ostomy Association is a volunteer-based health organization dedicated to providing education, information, support and advocacy for people with intestinal (ex/colostomy) or urinary (ex/vesicostomy)diversions. This website provides information about ostomies, conferences, books, local chapters, and more.

Videos About Transition to Adulthood A list of several videos available for on-line viewing that cover topics like health care transitions, the Healthy and Ready to Work program, the PASS program from the Social Security Administration and others. From the Institute for Child Health Policy in Gainesville, Florida.

Vocational Rehabilitation This is the website of the North Carolina Division of Vocational Rehabilitation. This division of the state's Department of Health and Human Services assists people with disabilities who have work-related needs or questions about their transition to adulthood. Contains descriptions of the various programs and services available, lists local offices with contact information, updates job listings, and has related links.

WIDE SMILES - Cleft Lip and Palate Resource One child in 700 is born with a cleft. It is the fourth most common birth defect, and the first most common facial birth defect. And yet so many parents feel so alone. WIDE SMILES was formed to ensure that parents of cleft-affected children do not have to feel alone. We offer support, inspiration, information and networking for families everywhere who may be dealing with the challenges associated with clefting. At WIDE SMILES we believe that, while it may not have been wonderful that our children were born with cleft, it is nonetheless true that our children who were born with cleft are wonderful. Together we share the struggle, the pain, the joy and the triumph of watching our children grow. Their challenges may be many, but we can face them together, learn from each other and help our children to recognize their beauty within.

Wake County Special Education PTA (SEPTA) The Wake County Special Education PTA is a new, unique county-wide PTA designed to focus on children receiving special educations services in Wake County Public Schools. A group of parents and teachers chartered SEPTA in February 2005, elected officers and opened the organization to new members. Since then, 161 people have joined. SEPTA connects parents and teachers as well as with professionals and other organizations that provide support, training and resources. To learn more or to join call (919) 788-2599. Annual dues are $5.00.

WebABLE! Web site for disability-related internet resources. mission is to stimulate education, research and development of technologies that will ensure accessibility for people with disabilities using information systems and emerging technologies.

Wheelchair Net Wheelchair Net is an Internet community providing free information and services on wheelchair technology, its improvement, and its successful application. WheelchairNet is a vehicle for assisting people in: 1) asking questions about wheelchair selection and use; linking to information about wheelchair products and services; and learning about and participating in wheelchair research projects.

Wheelchairs Used as Seats in Motor Vehicles These guidelines, including the Society of Automotive Engineers' Standards for wheelchairs used as seating systems in motor vehicles, are the recommended guidelines to ensure the safety of children and adults with mobility impairments.

Wrights Law This website (from Pete Wright, an attorney who represents children with special needs, and his wife Pam Wright, a psychotherapist with training in psychology and clinical social work)offers a great deal of information about special education law, focusing on attention deficit disorder, autism, IDEA, IEPs and other school-related services. The site includes article, tips, a bookstore, a seminar/training schedule and more. Try the site search engine to find specific information more quickly. You might need to scroll far down some the long web pages.

Yellow Pags for Kids This website is free through Wrightslaw services and is a site for people searching for reliable information and support for children with special needs. The site is organized by state and lists a variety of evaluators, educational consultants, tutors, support groups, grassroots organizations, advocates, attorneys and others who help parents and professional get services for children with special needs.