Public Awareness and the Referral System

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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 Public awareness and the referral system at the CPIR is:
http://www.parentcenterhub.org/repository/referral/

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December 2012

Part C of the Individuals with Disabilities Education Act (IDEA) requires that each State have a early intervention system that includes well-advertised processes for finding, referring, and (as appropriate) evaluating babies and toddlers suspected of having (or known to have) a developmental delay or disability. Having such a system includes:

  • operating a public awareness program so that residents of the State know that early intervention services are available to help eligible infants and toddlers with developmental delays or disabilities; and
  • providing a referral system by which children may be referred to the Part C system for evaluation.

The focus of this brief webpage is on both of these critical components in the State’s early intervention system.

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About the Public Awareness Program

Purpose | The purpose of the public awareness program is to let residents in the State know:

  • that early intervention services are available to eligible infants and toddlers with disabilities;
  • how to connect with the EI system to have an infant or toddler evaluated; and
  • how to make a referral to the EI system regarding a child potentially in need of EI services.

Materials to create public awareness | States develop public awareness materials to be shared with parents of babies and toddlers who may have a disability or developmental delay. These materials tell families and others about the benefits of early intervention, the availability of the system in the State, and where to call or visit for more information.

States also make a point of sharing these materials with a wide range of stakeholders who are likely to interact often with babies and toddlers, which puts them in a position to notice if a child has a developmental delay or disability. Having the public awareness materials of the State readily at hand helps such stakeholders connect families with the early intervention system. More will be said below about these stakeholders (which are called primary referral sources) and the valuable role they play both in raising public awareness of early intervention services and in referring children and families to those services.

Other activities | States do far more than develop materials to be shared with parents. Other activities designed to raise public awareness of the early intervention system include:

  • running television, radio, and newspaper ads;
  • having billboards;
  • making presentations at community fairs; and
  • conducting screenings of children for free throughout the State.

What works? | An excellent source of information on effective public awareness programs and strategies is the TRACE Center (the Tracking, Referral and Assessment Center for Excellence). We highly recommend a visit, at: http://www.tracecenter.info/

Central directory | The early intervention system in each State must also include a central directory that is accessible to the general public. The central directory is an important resource in each State’s early intervention system, because it is intended to connect people quickly with resources and services with respect to babies and toddlers who have delays or disabilities. To that end, the central directory must include accurate and up-to-date information about:

  • public and private early intervention services, resources, and experts available in the State;
  • professional and other groups (including parent training and information centers) that provide assistance to infants and toddlers with disabilities eligible under Part C of IDEA and their families; and
  • research and demonstration projects being conducted in the State relating to infants and toddlers with disabilities.

Many States make their central directory available on the lead agency’s website. According to the Part C regulations, this alone is not enough to ensure that the directory is accessible to the general public. After all, not everyone has access to, or uses, the Internet. The regulations require that States also use “other appropriate means” of making the central directory accessible. According to the U.S. Department of Education, those “other appropriate means” may include providing printed copies of the central directory at locations, such as libraries, and offices of key primary referral sources.

End result of a successful public awareness program? | Infants and toddlers with disabilities are identified, located, and evaluated as early as possible. If they are found eligible for Part C services, they can begin receiving early intervention services that address their individual developmental needs.

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About the Referral System

Each State has an affirmative obligation to ensure that all infants and toddlers with disabilities in the State who are eligible for early intervention services under Part C are identified, located, and evaluated. As part of fulfilling that obligation, the State operates a child find system, which must include procedures for referring a child to early intervention.

Anyone may refer a child to early intervention. For example, someone may notice that a baby or toddler seems to have a developmental delay of some sort, a disability, or a diagnosed physical or mental condition. That person needs to refer the child to the State’s early intervention system, which can evaluate the child and determine if he or she does, in fact, have a developmental delay or disability.

Referrals at birth | “Someone noticing” and “referring” the child and family to the early intervention system may happen at birth. Often this is so for children who are diagnosed at birth with a specific condition or who experience significant prematurity, very low birth weight, illness, or surgery soon after being born. Even before heading home from the hospital, this child’s parents may be given a referral to their local early intervention office.

Later referrals | Other children have a relatively routine entry into the world, but may develop more slowly than others, experience set backs, or develop in ways that seem very different from their peers. For these children, a visit with a developmental pediatrician may lead to an early intervention referral. Or perhaps the referral comes from a childcare provider, nurse, family member, or friend who notices that the child isn’t meeting the normal “baby” milestones such as rolling over by a certain age, or sitting up, crawling, speaking, and so forth.

However the referral to early intervention happens, for children found eligible for services under Part C, early intervention can provide the vital support they need to learn critical developmental skills.

Primary referral sources | The referral system set up by the State must enable referrals in particular from what IDEA calls primary referral sources (e.g., parents, physicians, hospital staff). These are the individuals who are most likely to be interacting with very young children. They are in a position to notice that a child may have a developmental delay or disability and to make a referral to the Part C system.

Who’s considered a “primary referral source?” The list of primary referral sources  below comes directly from the Part C regulations, at  §303.303(c):

hospitals (including prenatal and postnatal care facilities)

physicians

parents (especially parents with premature infants or infants with other physical risk factors associated with learning or developmental complications )

child care & early learning programs

local educational agencies (LEAs)

public health facilities

social service agencies

clinics or health care providers

child welfare agencies

homeless & domestic violence shelters

IDEA’s list of primary referral sources isn’t meant to be exhaustive, despite its length. A State may include additional referral sources its child find system.

Timeline for making a referral |  Under the Part C regulations, referrals need to be made as soon as possible after the child is identified as possibly having a developmental delay or disabilities, but in no case more than seven days. [§303.303(a)(2)(i)]

Do parents have to wait for a referral? | No, parents do not have to wait for someone else to refer their child to the early intervention system. Parents themselves are considered a primary referral source. If parents have concerns about their child’s development, they may contact the Part C system directly, explain their concerns, and ask that their little one be evaluated. The Part C system will respond according to its particular State policies and guide parents, given those policies.

Finding your Part C program | If you need to refer a child or family to early intervention, or ask for an evaluation of your child, there are multiple ways of locating who to call or write.

  • Ask the neonatal unit at the local hospital for the contact information of the local early intervention system.
  • If you’re a parent, ask your child’s pediatrician who to contact.
  • Visit the website of the National Early Childhood Technical Assistance Center—known as NECTAC—which maintains a list of current Part C coordinators by State. Contacting the State lead agency office is an excellent way to be put in touch with your local EI program.

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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.