Developmental Delay

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Alert! Alert! 
Because NICHCY’s website will only remain online until September 30, 2014, most of its rich content has moved to a new home, the Center for Parent Information and Resources (CPIR), where it can be kept up to date.

The new address of the Developmental Delay fact sheet at the CPIR is:
http://www.parentcenterhub.org/repository/dd/

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A multi-ethnic gaggle of babies.

 

Updated March 2012
NICHCY Disability Fact Sheet No. 9
(FS9)

If you’re reading this, perhaps you’re concerned about your child’s development. We’re glad you’re here, because there are many immediate things you can do to help your son or daughter. First, know that there’s help available to find out just what the difficulties are, if any, and address those difficulties.

The good news is that this help is usually free, and it’s available in every state. Keep reading if you’d like to know more.

 
The Developing Child

Think of all the skills that children have to learn when they come into the world: smiling, turning over, responding to people, communicating, eating solid food, crawling, standing, and on and on. We expect these skills to emerge naturally over time and know more or less when they should. At 3 months, Susana will probably be doing this, at 4 months, she’ll be doing that. By a year, well, she’ll be tottering around, getting into everything.

The time-table for skills to emerge is commonly called the developmental milestones. What’s considered normal development is described rather broadly. That’s because we know that children don’t learn skills at the same pace. Two different children born on the same day may learn the same skill months apart, and both can be considered “on schedule.” It’s when skills don’t emerge as expected, more or less on that broad schedule, that parents and caregivers may become concerned.

What to do?  First, you may want to talk with your pediatrician about your child’s development.

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Talking to Your Pediatrician

Don’t be surprised if the pediatrician tells you not to worry, to be patient, to give your child more time to develop. Often, that’s what parents hear, especially in the early stages of investigating their child’s seeming delays. And it’s often true. Children develop at different rates; the pediatrician is well aware that many children show sudden bursts in development rather than slow, steady growth.

On the other hand, your pediatrician may recommend that a developmental screening be conducted. Its purpose is to see if, yes, your child is experiencing a developmental delay. The screening is a quick, general measure of your child’s skills and development. It’s not detailed enough to make a diagnosis, but its results show whether or not a child should be referred for a more in-depth developmental evaluation.

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Developmental Evaluation

The developmental evaluation should be conducted by a highly trained professional who can use the results to create a profile of your child’s strengths and weaknesses. The evaluation needs to look at five developmental areas. Those areas are:

  • Physical development (fine motor skills, gross motor skills)
  • Cognitive development  (intellectual abilities)
  • Communication development (speech and language)
  • Social or emotional development (social skills, emotional control)
  • Adaptive development (self-care skills)

The results of the developmental evaluation will be used to decide if your child needs early intervention services and/or a treatment plan. Early intervention services are tailored to meet a child’s individual needs and, as such, are a very important resource to children experiencing developmental delays. Early intervention services can include:

  • Assistive technology (devices a child might need)
  • Audiology or hearing services
  • Speech and language services
  • Counseling and training for a family
  • Medical services
  • Nursing services
  • Nutrition services
  • Occupational therapy
  • Physical therapy
  • Psychological services

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Things to Know

States have an affirmative obligation to help children who are experiencing a developmental delay in one or more areas.

Through the Child Find system that states operate, developmental screenings and developmental evaluations are typically provided free of charge to families.

If you’re concerned about your child’s development, talk to your child’s pediatrician, who can refer you to the Child Find system in your area.

Early intervention services are meant for children under the age of three. They typically are provided to eligible families either free of charge or on a sliding payment scale that’s determined by the family’s income.

You can find out how to access early intervention services in your area by talking to your child’s pediatrician, calling a local hospital, or using NICHCY’s State Resource Sheet for your state. Once you select a state sheet to view, look under the category of “State Agencies” (it’s the first on the list) and find the listing under “Programs for Infants and Toddlers with Disabilities: Ages Birth through 2.” Call the agency and ask how to contact your local early intervention program.

NECTAC (the National Early Childhood Technical Assistance Center) is also a great source of this information. Use NECTAC’s Contact Finder located under “State Programs Under IDEA” and select “Part C Coordinators. The Contact Finder is online, at: http://www.nectac.org/contact/contact.asp

Special education services are meant for children over the age of three. Services are provided to eligible children free of charge through the public school system. If your child has passed his or her third birthday and you’re concerned about a developmental delay or disability, call your local school (even if your child isn’t enrolled there) and ask how and where to have your child evaluated under IDEA, our nation’s special education law.

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IDEA’s Definition of Developmental Delay

IDEA is the Individuals with Disabilities Education Act. Through IDEA, early intervention services and special education services are made available to our nation’s children. Not surprisingly, IDEA includes a definition of developmental delay, which may be useful to know. Here it is:

Child with a disability for children aged three through nine (or any subset of that age range, including ages three through five), may…include a child—

(1) Who is experiencing developmental delays as defined by the State and as measured by appropriate diagnostic instruments and procedures in one or more of the following areas: Physical development, cognitive development, communication development, social or emotional development, or adaptive development; and

(2) Who, by reason thereof, needs special education and related services. [34 CFR §300.8(b)]

It’s a good idea to find out if your state has added details to this definition of developmental delay. States are allowed to do so, if they choose. They also decide on the age range of children with whom the term may be used (3-5, 3-9, or any subset between 3-9). Your local school or early intervention program should be able to tell you the definition of developmental delay that’s used in  your area. You can also visit NECTAC (mentioned earlier) and find out how your state defines developmental delay, as well as the criteria of eligibility for services to young children, birth through 2 years of age, and their families. NECTAC makes this information available online at: http://www.nectac.org/~pdfs/pubs/nnotes21.pdf

It may be helpful to know that, under IDEA:

  • Your state may not require that your local school district also adopt and use the term developmental delay in working with children.
  • If your local school district decides to use the term, it must use the same definition and age range as the state does.
  • Yyour local school district may not use the term at all if your state has chosen not to use the term.

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Resources for You

It’s very helpful to read more about developmental delay. This has been just a brief overview, with pointers to loads of additional info and support, listed below.

Child development.
All about…from the CDC, the Centers for Disease Control and Prevention.
http://www.cdc.gov/ncbddd/childdevelopment/index.html

Developmental screening.
From CDC, the Centers for Disease Control and Prevention.
http://www.cdc.gov/ncbddd/childdevelopment/screening.html

Developmental milestones.
From NICHCY’s own site.
http://www.nichcy.org/disability/milestones/

What is developmental delay?
From How Kids Develop.
http://www.howkidsdevelop.com/developDevDelay.html

Developmental delay.
From the Encyclopedia of Children’s Health.
http://www.healthofchildren.com/D/Developmental-Delay.html

Developmental delays.
From Keep Kids Healthy.
http://www.keepkidshealthy.com/welcome/conditions/developmentaldelays.html

First Signs.
All about early detection of developmental delays and disabilities, especially autism.
http://www.firstsigns.org/

Connect with other parents.
Interested in talking to other parents whose children have developmental delays? Try Parent to Parent. They’ll connect you with other parents like yourself for support and exchange.
http://www.p2pusa.org

State eligibility definitions for infants and toddlers with disabilities under IDEA.
Find out how your state defines developmental delay and criteria of eligibility for services to young children, birth through 2 years of age, and their families.
http://www.nectac.org/~pdfs/pubs/nnotes21.pdf

Connect with the disability community and parent expertise.
Every state has a Parent Training and Information Center, known as the PTI. Some states have several. If you are looking to connect with state and local resources, or have questions about services and parent rights, talk to your PTI. Find the PTI for your state by visiting our State Resource Sheets (at the address below).  One of the “quick select” choices includes “Parent Training Centers.” Click that option, then your state.  The PTI will be listed in your results.
http://nichcy.org/state-organization-search-by-state

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NOTICE: NICHCY is going away, but its resources are not. Find hundreds of legacy NICHCY publications, as well as our training curriculum on IDEA 2004, in the Center for Parent Information and Resources' Library at http://www.parentcenterhub.org/resources. This website will remain available until September 30, 2014. After that date, web visitors will be automatically redirected to http://www.parentcenterhub.org.