Links

Advocacy & Support Organizations

The Arc - The national organization of and for people with mental retardation and related disabilities and their families.  

The Arc Michigan - The Arc Michigan exists to empower local chapters of The Arc to assure that citizens with developmental disabilities are valued and that they and their families can participate fully in and contribute to the life of their community.

Citizens Alliance to Uphold Special Education - (CAUSE) Provides Special Education Information and advocacy.

Down Syndrome Parent Network - (DSPN) is an organization whose goal is to provide accurate, up-to-date information on Down syndrome to parents, family, the general public, and professionals. We attempt to replace the frequent myths and misconceptions with solid facts.  We promote the concerns of inclusion in our communities, address social policy issues and conditions that limit the full potential of the individual with Down syndrome; and encourage research related to Down syndrome.

Down Syndrome Association of Greater Cincinnati - (DSAGC) The mission of the Down Syndrome Association of Greater Cincinnati is to provide information, resources and support to individuals with Down syndrome, their families, and their communities.  They also have an;

Adoption Awareness Program 

Which provides connections to families who are interested in adopting a child with agencies who have custody of a child with Down syndrome or birth families who are looking at adoption as a choice. If you are interested in adopting a child or considering adoption as an alternative, 

please call Robin Steele at 513.761.5400 or by email.

Down Syndrome Association of Northeast Indiana (DSANI) - To enhance the lives of people affected by Down syndrome, provide information and support to families and professionals, and promote awareness and acceptance of individuals with Down syndrome within our community.
Family Friendly Fun - Our mission is to: enable families with special needs to share with each other their experiences, information and inspirations via our newsletter and new eGroup forum; offer information on a variety of family friendly fun and helpful topics; and provide access to rings and a link portal to over 10,000 categorized websites relevant to special needs families.
From Emotions to Advocacy (FETAWEB)  The Michigan Yellow Pages for Kids with Disabilities was designed so people who love and work with our children can get reliable information, support and connect with one another.  You will find different kinds of resources on this page - government programs, grassroots organizations, and support groups.  
Internet Resources for Special Children is dedicated to children with disabilities and other health related disorders. The site provides valuable information for parents, family members, caregivers, friends, educators and medical professionals who provide services and support. Features include On-line Communities - a place where users can ask questions or connect with other people who may have the same questions, thoughts, and/or experiences.

National Association for Down Syndrome - National  Association for Down Syndrome (NADS), a not-for-profit organization, was founded in Chicago in 1961 by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome.

National Down Syndrome Congress - It is the mission of the National Down Syndrome Congress to be the national advocacy organization for Down syndrome and to provide leadership in all areas of concern related to persons with Down syndrome.

National Down Syndrome Society - NDSS was established in 1979 to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. Since that time, this not-for-profit organization has become the largest non-governmental supporter of Down syndrome research in the United States. NDSS works every day to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy.

National Information Center for Children and Youth with Disabilities - NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.

Special needs family fun - offers family fun and special needs resources to enhance the fun and quality of family life for families with disabilities.

United Way - Please make the Down Syndrome Association of West Michigan, Kent County the designated charity on your United Way pledge form.

Wrights Law - Parents, advocates, educators, and attorneys come to Wrightslaw for accurate, up-to-date information about advocacy for children with disabilities.  You will find hundreds of articles, cases, newsletters, and resources about special education law and advocacy in the Advocacy Libaries and Law Libraries.

Governmental & Education

City of Wyoming Student Services (Special Education)

www.iep4u.com contains over 4,000 free Goals and Objectives (IEP-ITP) each with changeable bench-marks.  This information is designed to help you with the daunting task of writing proper IEP’s. The IDEA Statements are spread out over seven subjects (Domains) and four functional levels. Input key words, phrases, or test names in the search engine to find just the correct objectives for your student’s needs.
Project Participate, supported by the U.S. Department of Education, helps families, educators, administrators and therapists increase the participation of students with disabilities in school programs.  This site contains success stories, inclusion strategies, adapted curricula, training handouts, and intervention planning forms. There is also a section on using technology to promote inclusion of students with disabilities in schools and a "gadgets and gizmos" section that contains products to help children with disabilities participate in school and play activities. Call 303.864.5277 or e-mail info@projectparticipate.org for more information.

Social Security Administration - Your child may qualify for Supplemental Security Income (SSI).  Eligibility usually qualifies the child for Medicaid which helps with health care costs.

Resource Materials

Disability Solutions - Disability Solutions is the free publication of The Enoch-Gelbard Foundation. It's mission is: "To provide in a widely accessible manner, free of charge, information that is useful, sensitive, and current to everyone concerned with developmental disabilities: parents, families, self-advocates, and professionals."

Woodbine House Publishing - Publishes, The Special-Needs Collection, a series of almost 50 books on disabilities and related topics, including ADD, autism, cerebral palsy, Down syndrome, learning disabilities, spina bifida, early intervention, inclusion, special education, and more.

Down syndrome and autism

Diagnosis of Autism in Children With Down Syndrome - The diagnosis of autism in children with Down syndrome is subjective and, therefore, difficult. This article addresses the symptoms of autism and issues faced when trying to obtain a valid diagnosis.

Down Syndrome - Autism Yahoo GroupThere is a wonderful e-group for families who have children with DS and autism!  Joan Medlen is the moderator of this group.
NDSS - Dual Diagnosis: DS and Autism - Resources available.

Developmental Resources & Therapeutic Programs

ABA Flashcards produces CD-ROMs with color images that parents print as flash cards to teach children with Down syndrome, learning disabilities and developmental delays. 

Innovative Therapists International - Offer information and services for Oral-Motor Speech  Therapy for individuals with Down syndrome.

Kent Special Riding Program - Kent Special Riding Program is a nonprofit organization dedicated to providing high quality therapeutic and recreational horseback riding instruction to physically, mentally, and emotionally challenged individuals in Kent and surrounding counties. KSRP strives to maximize the potential of all individuals involved in the program in a safe and stimulating environment.

Love and Learning - As the parents of a child with Down Syndrome, we would like to share what we have learned about teaching language and reading to toddlers with special needs. Our website gives information on how we taught our daughter to read as well as many letters from parents who have used our materials. Also available at our website are articles concerning our technique, including the latest article published in the "Down Syndrome News and Update", a publication of the European Down Syndrome Association. If your organization or members would like a free presentation CD that discusses our technique, please email us your postal address.

Health Care

Eastern Pennsylvania Down Syndrome Center - (EPDSC) provides comprehensive medical evaluations of infants, children, adolescents and adults with Down syndrome in a family centered model. The Center will also provide consultative services, provide medical services locally for persons with Down syndrome, and to serve as a community resource for families, service agencies, practitioners, and the general public.

Growth Charts - Growth charts for children with Down syndrome can be found in the journal Pediatrics (81) 1988.  The charts on this website were adopted from these charts using the method shown below.  If you would like to read more about growth charts as they relate to Down syndrome, you may want to check out Medical & Surgical Care for Children with Down Syndrome, A Guide for Parents, Woodbine House, 1995.

Health Care Guidelines from American Academy of Pediatrics.  These guidelines are designed to assist the pediatrician in caring for the child in whom the diagnosis of Down syndrome has been confirmed by karyotype. 

Dr. Lawrence Leichtman - Lawrence G. Leichtman, MD, PhD, is a Board Certified Pediatrician and Clinical Geneticist.    Dr. Leichtman conducts consultations and seminars across the United States and is currently providing treatment and consultations for international patients.

Dr. Len Leshin - He is a pediatrician and father of a child with Down syndrome.  This site provides information and resources relating to health issues for children with Down syndrome.  

www.clanthompson.com has up-to-date information on foods and drugs as well as  books and manufacturer’s lists for those who have been diagnosed with Celiac Disease.

Disclaimer: Many of these sites contain medical information.  Linking to such a site does not imply an endorsement of such medical advice.  Always consult your physician.