The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Early Intervention

The first years of life are a critical time in a child's development. All young children go through the most rapid and developmentally significant changes during this time. During these early years, they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress, and these abilities are attained according to predictable developmental patterns. Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin anytime after birth, but the sooner it starts, the better.

What Is Early Intervention?

Early intervention is a systematic program of therapy, exercises and activities designed to address developmental delays that may be experienced by children with Down syndrome or other disabilities. These services are mandated by a federal law called the Individuals with Disabilities Education Act (IDEA). The law requires that states provide early intervention services for all children who qualify, with the goal of enhancing the development of infants and toddlers and helping families understand and meet the needs of their children. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy, and occupational therapy.

When Should Early Intervention Start?

Early intervention should begin any time shortly after birth, and usually should continue until the child reaches age three. An amendment to IDEA in 2004 allows states to have early intervention programs that may continue until the child enters, or is eligible to enter, kindergarten. The sooner early intervention begins, the better, but it's never too late to start.

How Can Early Intervention Benefit a Baby with Down Syndrome?

Development is a continuous process that begins at conception and proceeds stage by stage in an orderly sequence. There are specific milestones in each of the four areas of development (gross and fine motor abilities, language skills, social development and self-help skills) that serve as prerequisites for the stages that follow. Most children are expected to achieve each milestone at a designated time, also referred to as a "key age," which can be calculated in terms of weeks, months or years. Because of specific challenges associated with Down syndrome, babies will likely experience delays in certain areas of development. However, they will achieve all of the same milestones as other children, just on their own timetable. In monitoring the development of a child with Down syndrome, it is more useful to look at the sequence of milestones achieved, rather than the age at which the milestone is reached.

Developmental Chart

What Are the Types of Early Intervention Therapies and How Does Each Type Address Specific Aspects of a Baby's Development?

Physical therapy focuses on motor development. For example, during the first three to four months of life, an infant is expected to gain head control and the ability to pull to a sitting positions (with help) with no head lags and enough strength in the upper torso to maintain an erect posture. Appropriate physical therapy may assist a baby with Down syndrome, who may have low muscle tone, in achieving this milestone.

Before birth and in the first months of life, physical development remains the underlying foundation for all future progress. Babies learn through interaction with their environment. In order learn, therefore, an infant must have the ability to move freely and purposefully. An infant's ability to explore his or her surroundings, reach and grasp toys, turn his or her head head while watching a moving object, roll over and crawl are all dependent upon gross as well as fine motor development. These physical, interactive activities foster understanding and mastery of the environment, stimulating cognitive, language and social development.

Another long term benefit of physical therapy is that it helps prevent compensatory movement patterns that individuals with Down syndrome are prone to developing. Such patterns can lead to orthopedic and functional problems if not corrected.

Speech and language therapy is a critical component of early intervention. Even though babies with Down syndrome may not say their first words until 2 or 3 years of age, there are many pre-speech and pre-language skills that they must aquire before they can learn to form words. These include the ability to imitate and echo sounds; turn taking skills (learned through games like "peek-a-boo"); visual skills (looking at the speaker and objects); auditory skills (listening to music, speech, or speech sounds for lengthening periods of time); tactile skills (learning about touch, exploring objects in the mouth); oral motor skills (using the tongue, moving the lips); and cognitive skills (understanding object permanence and cause and effect relationships).

A speech and language therapist can help with these and other skills, including breastfeeding. Because breastfeeding employs the same anatomical structures used for speech, it can help strengthen a baby's jaw and facial muscles and lay the foundation for future communication skills.

Occupational therapy helps children develop and master skills for independence. Occupational therapy can help with abilities such as opening and closing things, picking up and releasing toys of various sizes and shapes, stacking and building, manipulating knobs and buttons, experimenting with crayons etc. Therapists also help children learn to feed and dress themselves and teach them skills for playing and interacting with other children.

Early intervention can also prevent a child with Down syndrome from reaching a plateau at some point in development. The overarching goal of early intervention programs is to enhance and accelerate development by building on a child's strengths and by strengthening those skills that are weaker in all areas of development.

How Can Parents Benefit From Early Intervention Programs?

Programs of early intervention have a great deal to offer to parents in terms of support, encouragement and information. The programs teach parents how to interact with their infant or toddler, how to meet their child's specific needs and how to enhance development.

How Do I Sign Up for Early Intervention Services?

Each state has its own set of laws governing early intervention services. Parents can get a referral from their baby's doctor or find a local agency by visiting www.nectac.org. Once a referral has been made, the program staff must schedule and complete an initial evaluation within a specified time. Once the assessment is done, a caseworker is assigned to coordinate the various services for which the baby and family qualify. Early intervention services are individualized to meet the specific needs of each individual baby. The caseworker, therapists and family will determine areas of focus and set goals based on developmental milestones. These will be recorded in a document called the Individualized Family Service Plan (IFSP).

Who Pays for Early Intervention?

The evaluation to determine whether your child is eligible for early intervention is free of charge if performed by a state authorized entity. No child deemed eligible can be denied services based on ability to pay, but insurance companies may be billed and/or a sliding scale payment may be required, depending on the state. Parents should check with their state's early intervention center for information about authorized service providers and financial obligations. Frequently, there is little or no cost to parents for these services.

What Happens After Age 3?

The Individuals with Disabilities Education Act (IDEA), which regulates early intervention, also mandates that local school districts provide a free, appropriate, public education for preschool-age children with disabilities starting at the age of three, unless doing so would be inconsistent with state law or practice or the order of any court respecting the provision of public education to children between the ages of three and five.


NDSS RESOURCES

External Resources  

  • Division for Early Childhood of the Council for Exceptional Children
    www.dec-sped.org
    One of 17 divisions of the Council for Exceptional Children, this organization supports policies and practices that support families and enhance development in especially young children with disabilities and learning delays.
  • Early Childhood Outcomes Center
    www.the-eco-center.org
    The ECO Center promotes the development of progress reports for young children with disabilities and the implementation of these reports on a local, state, and national level.
  • Ed Pubs
    www.edpubs.gov
    A searchable database of the US Department of Education's online catalogue of free publications
  • Education Resources Information Center (ERIC) Database
    www.eric.ed.gov
    Sponsored by the Institute of Education Sciences of the US Department of Education, this is a free online digital library of journal and non-journal education literature.
  • National Dissemination Center for Children and Youth with Disabilities (NICHCY)
    www.nichcy.org
    800-695-0285
    NICHCY is a central source of information on pre-adolescents and teens with disabilities. It features a clear and detailed guide to IDEA, the law authorizing early intervention services and special education, and State Resource Sheets to help you connect with disability agencies and organizations in your state. 
  • National Early Childhood Technical Assistance Center (NECTAC)
    www.nectac.org
    NECTAC supports the national implementation of the Individuals with Disabilities Education Act (IDEA) by working with each state to provide technical assistance for children with disabilities and their families. The website provides a list of early intervention programs by state.
  • Open Books Open Doors
    openbooksopendoors.com
    Website contains resources for parents and teachers on best practices in literacy instruction for students with Down syndrome
  • Technical Assistance Alliance for Parent Centers
    www.taalliance.org
    Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in each state provide training and information to parents of infants, toddlers, children, youths with disabilities and professionals who work with them. The website provides a list of centers by state.

DVDS

  • Down Syndrome: The First 18 Months. Blueberry Shoes Productions.
  • Emma’s Gifts. Endless Horizon Productions. 

BOOKS

  • Early Communication Skills for Children with Down Syndrome. Kumin, L. Bethesda, MD: Woodbine House. (2003) 
  • The Early Intervention Dictionary. Coleman, J. G. M. Bethesda, MD: Woodbine House. (2006)
  • Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Second Edition). Bruni, M. Bethesda, MD: Woodbine House. (2006)
  • Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.Winders, P. Bethesda, MD: Woodbine House. (1997)
  • Negotiating the Special Education Maze: A Guide for Parents and Teachers (Fourth Edition). Anderson, W., Chitwood, S., Hayden, D., Takemoto, C. Bethesda, MD: Woodbine House. (2008)
  • Steps to Independence: Teaching Everyday Skills to Children with Special Needs. Baker, B. & Brightman, A. Baltimore, MD: Paul H. Brooks Publishing Co. (2004)
  • The New Language of Toys: Teaching Communication Skills to Special Needs Children (Third Edition). Schwartz, S. Bethesda, MD: Woodbine House. (2004)
  • Teaching Reading to Children with Down Syndrome: A Guide For Parents and Teachers. Oelwein, P. Bethesda, MD: Woodbine House. (1995)
  • Buddy Walk
  • NDSS Yourway
  • My Great Story