Below are links to resources that parents might find useful throughout the various stages of their children’s lives.
Note: inclusion of materials and products in the list below does not constitute an endorsement by DSIA.
Our Parent-to-Parent Program matches families who receive a new diagnosis with a trained Parent Mentor who has similar experiences. You can connect with a Parent Mentor who will answer questions, offer support, provide resources, connect you with others… and simply listen.
Warmline provides support and resources to families of children with special needs from birth to age 22. They host workshops, support groups, and provide information/publications that can help with many different needs or challenges you might face.
Family-based activities and programs include conferences, and development of parent support groups; community outreach; educational and training workshops; referral services; research; special needs advocacy; leadership development and promotion of public awareness about social service programs and policies.
The importance of using People First Language – putting the person before the disability – and eliminating old descriptors (that can be hurtful) to help move us in a new direction.
Online information and support for parents who receive a prenatal Down syndrome diagnosis.
Information on various topics from the National Down Syndrome Congress.
Resources for families of children with special needs age birth to 5 in the Sacramento area.
Mended Little Hearts is a support program for parents of children with heart defects and heart disease, and is dedicated to inspiring hope in those who care for the littlest heart patients of all.
A resource for new parents of a baby with Down syndrome and a place for the experienced to share what worked and what didn’t.
A comprehensive look at raising a child with Down syndrome written for parents, by parents. Also, check out their list of blogging families from all over!
The medical issues for a child with Down syndrome change with age. For this reason, the document is divided into several age groups (available as PDF). Each age group includes a list of issues that may be important to your child at that age.
Stay informed about what screenings, tests, etc. your child might need. These guidelines from the American Academy of Pediatrics are designed to assist pediatricians in caring for a child with Down syndrome throughout the life span. You can review these guidelines and discuss them with their child’s pediatrician.
Children with Down syndrome (DS) have lower birth weights and grow more slowly than children without DS. Advances in and increased access to medical care have improved the health and well-being of individuals with DS; however, it is unknown whether their growth has also improved.
Medi-Cal waivers are programs that provide additional services to specific groups of individuals and provide medical coverage to individuals who may not otherwise be eligible under Medicaid rules. Your child’s Alta service coordinator can provide additional information, as well.
If breastfeeding is something that you want to do, chances are you WILL be able to do it! Breastfeeding can be hard, and babies with Down syndrome may need extra support. But the support is out there so try not to get discouraged!
The Montana Melin Foundation is about assisting other families of Down Syndrome children with medical hardships.
Referrals & Services
Alta is the local agency that oversees and coordinates Early Intervention services. They create partnerships to support all eligible individuals with intellectual and/or developmental disabilities, children at risk, and their families in choosing services and supports through individual lifelong planning as a means to achieve healthy and productive lives in their own communities. Parents may self-refer their child to Alta for services by calling 916-978-6249 (English) or 916-978-6647 (Spanish). You can learn more about the types of services they provide – based on the individual need of your child – on their website.
Law & Policy
The Individuals with Disabilities Education Act (IDEA), is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Part C is designated to early intervention services ages birth to three years old.
Searchable and printable sections of the California Welfare and Institution Code known as the Lanterman Act and related statutes that define the rights of persons with developmental disabilities and establish how these services will be delivered.
Searchable and printable sections of the California Government Code known as the California Early Intervention Services Act. The purpose of this title is to provide a statewide system of coordinated, comprehensive, family-centered, multidisciplinary, interagency programs, responsible for providing appropriate early intervention services and support to all eligible infants and toddlers and their families.
Area Board 3 created this comprehensive guide to aid parents’ understanding of their and their children’s rights under the Individual with Disabilities Education Act (IDEA). This document is organized by topics such as evaluations/assessment, early intervention, Individual Education Plan (IEP), transitional planning, etc. Please note that this document is very large (25MB) and might take a few minutes to download.
Law & Policy
U.S. Department of Education, Office of Special Education Program website dedicated to IDEA, Part B – the federal law that governs education and services for children ages 3-21.
A special education law website that covers federal and various state laws; you can even buy books, find case law, and get updates via their newsletter.
The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access.And it’s FREE.
In California, all school districts and county school offices were mandated to form consortiums in regions called Special Education Local Plan Area (or SELPA for short) to provide for all special education service needs of children in each region. This site provides background and contact information for the SELPAs across California.
This workbook is intended to help you prepare for the transition from Early Start (early intervention). You and the people working with you and your child can go through it together, and as a team, you can think about what you want, get all the information you need, and make the best decisions for your family. Also available in Spanish: Cumpliendo Tres Anos de Edad.
This publication will provide parents the tools they need to feel that they are contributing to their child’s IEP and that their children are receiving the special education services they need to succeed in school and life. Also available in Spanish: Entendiendo los Servicios de Educación Especial
Area Board 3 created this comprehensive guide to aid parents’ understanding of their and their children’s rights under the Individual with Disabilities Education Act (IDEA), and they provide it to parents at IEP workshops. Please note that this document is very large (25MB) and might take a few minutes to download.
Disability Rights California is a private, nonprofit organization that protects the legal, civil and service rights of Californians who have developmental or mental disabilities. Disability Rights California provides a variety of advocacy services, including information and referral, technical assistance, and direct representation. They created this guide to Special Education Rights and Responsibilities.
OEDb is a comprehensive online education directory for both free and for-credit learning options. They offer up-to-date, detailed school and program information for degree seekers and categorize free online college courses from well-known universities and providers.
DSIA has complied this packet to use when doing a peer presentation to your child’s class about Down syndrome. Contact DSIA for any questions you may have about giving a peer presentation.
Parental Support for College Students
It’s important that parents and children alike learn as much as they can about oral motor and speech therapy, so that together, they can experience the development and personal growth.
Evidence-based information resources, books, teaching materials, and films specializing in inclusive education, reading, and mathematics. DownsEd also offers specialist advice, training, and consulting services.
The Learning Program complements formal instruction in literacy and math. The program is based on the research from Down Syndrome Education and uses effective teaching strategies and customized materials to support parents, teachers, and children in the educational process. Best of all, the materials are available for FREE on their website!
A handwriting program that can be implemented in the classroom or one-on-one. The curriculum uses hands-on, educationally sound instructional methods and the lessons require minimal preparation time. The Website offers workshops, materials, newsletters, and much more.
This is the U.S. Department of Education’s online catalog of FREE publications. They have everything from research briefs to toolkits to DVDs to bookmarks. Topics include literacy, mathematics, technology, academic achievement, assessment and behavior, bully prevention, to name just a few. The searchable database is easy to navigate, and everything is free. Delivered right to your door.
Area Board 3 serves Alpine, Colusa, El Dorado, Nevada, Placer, Sacramento, Sierra, Sutter, Yolo, and Yuba counties. It is a Federally- and State-funded organization that provides, among other things, advocacy supports to families who have children receiving special education services and supports from school districts, as well as those who receive services from the regional center system. It is one of 13 Area Boards in California, and is an integral part of assisting families and individuals with advocacy, training, coordination, and implementation.
Disability Rights California is an advocacy organization whose mission is to advance the rights of Californians with disabilities.
Access Leisure is a program of the City of Sacramento Department of Parks and Recreation. Access Leisure provides sports, residential camping and outdoor education as well as social and fitness programs for children, teens, and adults with disabilities.
A Touch of Understanding Youth F.O.R.C.E. is for youth of ALL abilities, grades 3 and up: Come join for fun, friendship and character-building activities. Learn to be a leader among your peers, and have fun doing it! Rub shoulders with others who meet the challenges of life every day. Youth F.O.R.C.E meets monthly with activities planned and organized by you and your peers.
TRS provides therapeutic recreation opportunities for individuals with disabilities residing in Sacramento County. Their programs focus on abilities while encouraging people to attain their highest level of independent leisure functioning by increasing leisure skills, improving social skills, increasing independence and increasing their awareness of and involvement in community recreational activities.
Special Olympics provides athletic opportunities to children and adults with intellectual disabilities, instilling the confidence they need to succeed in life.
Challenge Sports of California, an all-volunteer organization, provides year round team sports for school age athletes with developmental and/or physical disabilities. We offer soccer, basketball, bowling and trampoline in a safe, fun and positive environment.
Provides information about midtown and downtown Sacramento, including a calendar of events, coupons, and educational/family activities (look in the Community Resources section).
The year-round source for Sacramento events.
A conservatorship is a court proceeding through which a responsible person (called a conservator) is appointed by the court to care for another adult who cannot care for him/herself or his/her finances (called a conservatee).
CLICK HERE for more information from Wilke Fleury on Special Needs Conservatorship
Dandelion is a free quarterly magazine that serves as a resource for Bay Area and Sacramento families of children with special needs.
An online magazine serving the special needs community.
Down Syndrome Research
CLICK HERE for more information.
Aging and Down Syndrome
As they age, those affected by Down syndrome have a greatly increased risk of developing a type of dementia that’s either the same as or very similar to Alzheimer’s disease.
Alzheimer’s disease and Down syndrome share a genetic connection, leading to the increased risk of dementia at an earlier age.