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About Down syndrome

Frequently Asked Questions

Frequently Asked Questions

Have you ever had a question and didn’t know where to find the answer? If so, you’ve come to the right place. This section is a compilation of answers to the questions most commonly asked. Just start by following one of the links below.

If you can’t find the question you wanted to ask, don’t hesitate to contact us.

  1. My child with Down syndrome has special needs. How will I pay for these services?

    The State of California Department of Developmental Services has 21 regional centers in the state that run programs and provide funding for individuals with defined disabilities that manifest before 18 years of age. Children with Down syndrome are eligible for these programs.

    Families whose infants or toddlers have a developmental delay or disability can receive an "Early Start" in the State of California. Teams of service coordinators, healthcare providers, early intervention specialists, therapists, and parent resource specialists can evaluate and assess an infant or toddler and provide appropriate early intervention services to children eligible for California's Early Intervention system of services.

    Find out more about Regional Centers and Laws in the State of California

    Developing an individualized family services plan (IFSP) includes the performance of a timely, comprehensive, multidisciplinary evaluation and assessment of every child under age 3 who is referred for suspected developmental delay. If your child is determined to be eligible, you have the right to appropriate early intervention services. You have the right to provide information throughout the process and are encouraged to make decisions about your child’s early intervention services.

    View the Services Provided by Regional Centers and learn more about their programs. Call your local regional center to set up the intake process and to enroll your child as a consumer.

    This DSALA Glossary of Terms may be useful in your conversations with regional center and other service providers.

    "We're Here to Speak for Justice: Founding California's Regional Centers" is a provocative and moving documentary on the founding of the regional center system for people with developmental disabilities and their families in the State of California. The film originally aired on February 27, 2000 on KCET.

  2. What do I need to know about special education services?

    Early Start
    Infants and toddlers through age three can be enrolled in Early Start. Through this program, children and their parents attend classes at designated early childhood centers. Some may be eligible for in-home services.

    After Early Start, there is a very important transition to preschool which requires working closely with your regional center service coordinator. The following document is very useful and contains valuable information:

    Moving on to Preschool (pdf) by the Family Focus Resource and Empowerment Center, CSUN

    Transition to Preschool by the National Dissemination Center for Children with Disabilities (NICHCY)

    Since the degree of learning is based in the abilities of any individual, children with Down syndrome have options and the right to an education:

    Special Education Classrooms
    Special Education Classrooms generally have fewer students and greater supervision, to fit a student’s developing needs.

    General Academic Classrooms
    General Academic Classrooms offer an integrated setting. In some instances they are integrated into specific courses or regular classrooms for part of the day, while in other situations students are fully included in the regular classroom for all subjects.

    Local Programs
    Young adults with Down syndrome often attend programs at local Community Colleges and various forms of Community Based Instruction to develop independent living and employment skills. Studies have shown students with intellectual disabilities (including Down syndrome) that participate in postsecondary education are more likely to excel in academics, employment.

    Special Education Resources
    Parents will continue to work with regional center as their children move through the educational system. The following documents contains detailed specifics of rights and responsibilities throughout the process:

    Rights and Responsibilities (pdf) Disability Rights California

    Wrightslaw Special education and how to get services

    Woodsmall Law Group Legislative Updates

    Special Education Process Los Angeles Unified School District

    Free and Appropriate Education (FAPE)

    Information and Advocacy

    Parent IDEA Guide, a free online tutorial of special education law

    Special Education Rights and Responsibilities Manual

    Disability Rights California (formerly Protection & Advocacy Inc.) 800-776-5746


    Office of Clients’ Rights Advocacy 866-833-6712

    Appropriate Education, Not Best Education

    CA Disability Community Action Network (CDCAN)

    Learn to Ask Questions, Get Services article

    Eight Steps to Better IEP Meetings article

    The Laws of Adverse Assumptions

    Tactics & Strategy: The "Letter to a Stranger" by Janie Bowman and Pete Wright”


  3. My child has a lot of behavior problems, what do I do?

    Contact your regional center service coordinator to explain your child's behavior and determine the recommended course of action and referrals to be eligible for Behavioral Services. Each regional center has its own process. Find a Regional Center near you.

    More Resources
    View our online Resource List.

    Challenging Behaviors

    When Your Child Engages in Difficult Behaviors

    Positive Behavior Support at School video from LAUSD

  4. How can I help my child with Down syndrome with speech and language development?

    “Although there are common speech and language problems, there is no single pattern of speech and language common to all children with Down syndrome. There are, however, speech and language challenges for most children with Down syndrome. All of the speech and language problems that children with Down syndrome demonstrate are faced by other children as well. There are no speech and language problems unique to children with Down syndrome. This means that there is a great deal of knowledge and experience that can be applied to helping a child with Down syndrome with his/her specific areas of challenge.”

    This text is from an article written by Libby Kumin and contained in the book,
    Down Syndrome: A Promising Future, Together,
    Edited by Terry J. Hassold and David Patterson

    Informative articles by Libby Kumin, Ph.D, CCC-SLP, and Founder of The Center for the Study of Speech and Language in Children with Down Syndrome, Loyola College, Columbia, MD are available for download here:

    Resource Guide to Oral Motor Skill Difficulties in Children with Down Syndrome

    The Basis for Speech, Language and Communication in People with Down Syndrome

    Speech and Language Resource Guide for Parents of Infants and Toddlers with Down Syndrome

    Speech and Language Resource Guide for Children with Down Syndrome Preschool through Kindergarten

    Speech and Language Resource Guide for Parents of School-Age Children with Down Syndrome

    Speech and Language Resource Guide for Adolescents with Down Syndrome

    Speech and Language Resource Guide for Adults with Down Syndrome and Their Parents

    Childhood Apraxia of Speech (CAS) is a motor speech disorder where children have difficulty planning, coordinating, producing and sequencing speech sounds. CAS interferes with the child’s ability to say sounds and to combine them into syllables, words, phrases and conversations. Other terms, such as developmental apraxia, dyspraxia, pediatric verbal apraxia or just apraxia all refer to the same problem. Some children with Down syndrome have characteristics of CAS, but many do not. Childhood Apraxia of Speech Resource Guide

    Visit Blueberry Shoes to listen to excerpts or purchase videos on these topics:
    • Down Syndrome: The First 18 Months
    • Discovery - Pathway to Better Speech for Children with Down Syndrome
    • What Did You Say? - A Guide to Speech Intelligibility in People with Down Syndrome

  5. What is IHSS and what services do they offer?

    The In-Home Supportive Services Program (IHSS) provides people who are blind, disabled, or over the age of 65 with personal assistance and in-home support services so they can remain in their homes or maintain employment safely. Services range from assistance with household chores to personal care and paramedical services. The program is often seen as an alternative to assisted living or nursing facilities.

    Any California resident is eligible, living in his/her own home who meets one of the following:
    •Currently receives SSI/SSP benefits and Medi-Cal linked to SSI or 1619(b)Medi-Cal;
    •Receives Medi-Cal with no share of cost including through institutional deeming, or the continuous eligibility for children program, or the Aged and Disabled Federal Poverty Level Program, or the 250% Working Disabled Program
    •Receives Medi-Cal with a share of cost.


    In-Home Supportive Services (IHSS) Telephone Applications (888) 944-IHSS (toll-free within Los Angeles County only) or (213) 744-IHSS

    Department of Public Social Services

    Disability Benefits 101 - Working with disability in California

    Disability Rights California

    IHSS Nuts & Bolts Complete Manual (pdf)

    IHSS Protective Supervision

    IHSS Fair Hearing

    IHSS Physician Assessment of Need for Protective Supervision Form

    IHSS Companion Booklet

  6. How do I know if my child with Down syndrome also has the characteristics of Autism?

    The term dual-diagnosis refers to a person with a developmental disability, such as Down syndrome (DS), and a psychiatric or Neurodevelopmental disorder, such as an autistic spectrum disorder (ASD), also known as autism. In recent decades, there has been wider recognition that persons with DS can also have a co-existing psychiatric disorder.

    It is currently believed that most children with DS do not have a co-existing psychiatric or behavioral disorder. However, each case is different. Parents can learn more in the following articles, which include signs and symptoms:

    Down Syndrome and Autistic Spectrum Disorder- Down Syndrome Resource Foundation

    Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know

    Down Syndrome and Co-Occurring Conditions- NDSS

    Diagnosis of Autism in Children with Down syndrome

    Special Issue Articles on Down Syndrome & Autistic Spectrum Disorder

    Neurobehavioral Disorders in Children, Adolescents, and Young Adults With Down Syndrome