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Helpful Links and Resources

Down Syndrome Organizations Community & Family Health Financial Medical Recreation
Supports Links Books & DVDs Surveys & Studies Conference Talks

Links


Name Description Address
ARC of the U.S. The Arc of the United States is the nation's leading national organization on mental retardation. Published 6 times yearly. http://www.thearc.org/
Disability Solutions A Resource for Families and Others Interested in Down Syndrome and Related topics. http://www.disabilitysolutions.org/
D Syndrome.com People with Down syndrome can succeed. This site is in the celebration of their ever-growing potential. http://www.geocities.com/Heartland/9253/
Utah Developmental Disabilities Council The mission of the Utah DD council is to be the states leading source of critical innovative and progressive knowledge, advocacy, leadership and collaboration to enhance the life of individuals with developmental disabilities. http://www.gcpd.org/
Health Issues A Web page created by a medical doctor who has a son with down syndrome. He has written a number of essays answering questions that we all have or have had at one time. http://www.ds-health.com/
SCI Escape School website This is a child safety site, teaching parents and children tips, tricks, and ideas to help make your child safe. They believe that knowledge is key in helping children safe, stressing the principle: be smart and safe. http://www.escapeschool.com/
National Down Syndrome Society Education, Research, and Advocacy - A Very Good Site http://www.ndss.org/
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. http://www.nads.org/
Utah Parent Center The mission of the Utah Parent Center (UPC) is to help parents help their children with disabilities to live included, productive lives as members of the community. http://www.utahparentcenter.org/
PACER Center The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. With assistance to individual families, workshops, and materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation. http://www.pacer.org/
Wrights Law A newsletter discussing laws for people with disabilities. http://www.wrightslaw.com/
Fetal.com This website was designed to be of assistance to patients and physicians. You will find information regarding prenatal diagnosis, aminocentesis, ultrasound, maternal-serum screening, and other diagnostic tests which can be useful in evaluation of your unborn child. Use the navigation controls on the left to find the information you need. http://www.fetal.com/
SSI Web Page SUPPLEMENTAL SECURITY INCOME PROGRAM http://www.ssa.gov/pubs/englist.html#SSI
State Family Council Information about family councils that educate, support, find resources, and meet monthly to improve the quality of life for families dealing with disabilities. in the State of Utah http://www.statefamilycouncil.org/
The Council of Parent Attorneys and Advocates COPAA does not represent the interests of any single type of disability. COPAA's chief concern is the availability and quality of legal and advocacy services for parents of children with all disabilities. The prime objective is to better integrate the unique strengths of parent, advocate and attorney to keep the costs of legal assistance manageable, while improving their availability and quality. While supporting interaction and dialogue with educators and their attorneys, membership in COPAA is not available to attorneys who represent, or persons currently employed by, education agencies receiving Federal or state funds under IDEA. Other organizations exist to serve those persons and entities. http://www.copaa.net/
CAUSE Changing lives · One Child at a Time Building Bridges Between Families and Schools http://www.causeonline.org/
DDI VANTAGE Baby Watch Early Intervention Program through the Utah Department of Health. We serve children under the age of three who have developmental delays and disabilities, and their families. We have four offices in Salt Lake City, West Valley City, Tooele County and Duchesne County. We provide services such as full developmental evaluations, speech, occupational, and physical therapy, toddler classes, family training, and parenting classes. http://www.ddivantage.com/
National Down Syndrome Congress It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. http://www.ndsccenter.org/
Utah MedHome Portal This is the Utah Collaborative Medical Home Project site. Information, Tools, and Resources to aid Primary Care Physicians in caring for Children with Special Health Care Needs (CSHCN) and providing a Medical Home for all of their patients. http://www.medhomeportal.org:80/
Woodbine House Books for parents, children, teachers and professionals. http://woodbinehouse.com/
The National Association for Child Development - NACD NACD provides neurodevelopmental evaluations and individualized programs for children and adults, updated on a quarterly basis. As a family-centered organization, NACD stresses parent training and parent implementation of the program. NACD is an eclectic organization, gathering and utilizing the newest strategies that yield success and incorporating them into programs custom-designed for each client. Support is provided to families through video reviews, e-mail and telephone sessions. Through frequent contact with staff and other families, parents are well informed and well educated in relationship to their child’s progress. NACD chapters can be found across the United States. International locations include the Bahamas, India and Guatemala. International services are also provided through videotaping and phone conferences http://nacd.org/
Todays Mama - Utah Mama's Handbook The TodaysMama Website (TodaysMama.com) provides exclusive columns, features and tips in its Expand Your Perspective section from established authors and experts. Mamas share aspirations and find inspiration on the site’s Dream Big section, and groove and sway to the music on the site’s MamasMix. http://www.todaysmama.com
The Family To Family Network This program is a partnership of the Utah Parent Center and the Department of Human Services, Division or Services for People with Disabilities. Mission Statement: To educated, strengthen, and support families of persons with disabilities. The Family to Family Network is a grassroots volunteer group composed of family members across Utah who have a relative with a disability. http://www.utahfamilytofamilynetwork.org/

 

 
 
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¡Se necesitan bilingües voluntarios!  El UDSF está buscando a individuos que estarían deseosos para traducir información de inglés al español para el defensor y el website.  También estamos buscando a padres que les gustaría ser parte del programa “recién nacido” y visitar con las familias de habla hispana que tienen un infante nacido con el Síndrome de Down.  Si habla ambos idiomas inglés y español y le gustaría compartir su tiempo y talentos e desea involucrarse con UDSF, póngase en contacto con Suzie Smith al suzie@udsf.org or call 877-499-8373 or 801-446-1994.

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