Introduction to Early Intervention Services

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Part C of the Individuals with Disabilities Education Act, or IDEA, is the federal law that requires states to provide early intervention services to infants and toddlers with disabilities, from birth through age 2. There are several important ideas in Part C of the IDEA that parents of children with disabilities should understand. These include: child find, natural environment, individualized family service plans (IFSPs), and procedural safeguards.

 
What are early intervention services?

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Recognizing how much development occurs in a child’s first three years, Congress changed the IDEA in 1986 to add services for children from birth through age 2. Early intervention services ensure that children with disabilities are identified as soon as possible and provided services that will help minimize developmental delays caused by their disabilities, reduce as much as possible the need for future services, and maximize their potential for gaining independent living skills.

Early intervention services are services provided to infants and toddlers with disabilities that address delays in the following areas:

  • Physical development
  • Cognitive development
  • Communication
  • Social or emotional development
  • Adaptive development

Early intervention services include, but are not limited to:

  • Assistive technology
  • Audiology services
  • Family training
  • Health services (such as catheterization, tracheostomy care, and tube feedings)
  • Medical services (for evaluation purposes only)
  • Nursing services
  • Nutrition services
  • Occupational therapy
  • Physical therapy
  • Psychological services
  • Service coordination
  • Sign language
  • Social work services
  • Special instruction
  • Speech-language services
  • Transportation
  • Vision services

Early intervention services, though, are more than just services for the child him or herself. Early intervention services include working with a child’s family to ensure that family members have the skills and knowledge to support the child and his or her special needs. Unlike special education services for older children with disabilities, the family’s concerns and needs drive the services provided by the early intervention program.

 
What is child find?

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The IDEA requires states to identify all of the infants and toddlers under the age of three in their state who might need early intervention services. This responsibility is called child find. An important requirement of each state’s child find system is to create a public awareness program so that the people who provide services and supports to infants and toddlers know that early intervention services are available for infants and toddlers with disabilities and know how to refer a family to the early intervention program. As part of the public awareness campaign, states must provide certain groups information about early intervention services so that they can share the information with parents. These groups include:

  • Hospitals
  • Doctors
  • Child care programs
  • Schools
  • Public health facilities
  • Social service agencies
  • Other health clinics and health care providers
  • Child welfare providers
  • Homeless shelters
  • Domestic violence shelters

Information is required to be given to parents of children who are born prematurely or who have other risk factors associated with learning or developmental delays. For example, information about early intervention services should be given to parents of children with Down syndrome, fetal alcohol spectrum disorders, spina bifida, cerebral palsy, and other disabilities that are known to cause developmental delays.

The IDEA allows states to create their own system for providers to refer families to the early intervention program. However, the referral system must require referral of any child under the age of three who has been found by a court to be abused or neglected or who has been exposed to prenatal drug use. In addition, the referral system must include procedures for referring a child to the early intervention program within seven days of a provider determining the child may need early intervention services, and the system must require children to be screened, evaluated, and have an initial individualized family service plan written within 45 days of the referral. The early intervention program must get written permission from the child’s parent before they do any screening or evaluation of the child.

Parents can also request help from the early intervention program themselves. Most states have a form to complete, but families can also send a request to their state’s early intervention program asking for an early intervention evaluation. The request should be put in writing, signed, and dated.

After a parent or provider refers a child to the early intervention program, the early intervention program can either screen the child to determine if the child might have a disability, or complete a comprehensive evaluation to determine whether the child is eligible for early intervention services. If the screening shows that the child might have a disability, then the early intervention program must complete the comprehensive evaluation. If the screening shows that the child is not likely to have a disability, the early intervention program must tell the child’s parents and inform them of their right to request an evaluation anyway. The early intervention program must complete a comprehensive evaluation any time a parent requests one.

A child is eligible for early intervention services if the child has a developmental delay in at least one of the five areas of development: physical, cognitive, communication, social or emotional, or adaptive. The IDEA allows each state to create its own definition of a developmental delay, so you must look to your state’s rules to determine if a child is eligible. A child’s medical records can be used to determine eligibility without an evaluation if the records show that the child meets the criteria for a developmental delay.

If a child is found eligible for early intervention services, the early intervention program must complete an observation of the child and assessment of the child’s functioning in each of the five areas of development to determine the child’s strengths, needs, and appropriate services. In addition, a “family assessment” must be completed. The family assessment helps the family identify their concerns, resources, and the supports they need for their child.

If the early intervention program does not complete an evaluation of the child, or if a parent does not agree with the early intervention program’s decision about the child’s eligibility for early intervention services, the parent can file a complaint.

 
What is the natural environment?

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The IDEA requires states to provide early intervention services in the child’s natural environment. That means that early intervention services are not meant to be provided in a special center or doctor’s office. They must be provided in the same places that the child would be in on a day-to-day basis if he or she didn’t have a disability, such as the child’s home, day care center, park, or library. Early intervention services can be provided in a segregated program for infants and toddlers with disabilities only if the team decides that the services the child needs cannot be provided in the natural environment.

 
What is an IFSP?

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The individualized family service plan, or IFSP, is the written document that describes the early intervention services that the child will receive. The IFSP is written by a team that includes the child’s parent, early intervention service coordinator, at least one of the professionals that completed the evaluation, and at least one of the providers who will actually implement the services in the IFSP. Because services are focused on the family’s needs, the child’s parents can invite as many family members and non-family supports, including an advocate, as they want.

The IFSP must include:

  • Present levels of functioning
  • Outcomes
  • A statement of the family’s concerns, resources, and priorities
  • Early intervention services
  • Other services
  • Name of the service coordinator
  • Transition plan

Present levels of functioning describe what the child can already do. Outcomes describe what the child will learn to do at some point within the next year. The IFSP must list each early intervention service the child will receive, including the amount of services, the location where the child will receive the services, and how the services will be paid for. If services will not be provided in a natural environment, the IFSP must include an explanation as to why not. The IFSP must also list other services that the child needs, such as medical services, that are not required to be provided or paid for by the early intervention program. If the child is not receiving the other services that he or she needs, the IFSP must include a description of how the early intervention service coordinator will help the child’s family get those services. The services in the IFSP must be reviewed every six months, and the entire IFSP must be reviewed once a year.

Each IFSP written after a child turns two years old must include a transition plan that identifies the steps and timeframe for transitioning a child out of the early intervention program, typically when the child turns three years old. Steps that the early intervention program must take include training parents about future service options, preparing the child for any change in services, and sharing information about the child with the local school district. The early intervention program is required by the IDEA to provide the child’s name, date of birth, and parent’s contact information to the local school district, but can only share additional information if the parent gives consent to the disclosure. As part of the child find requirements under Part B of the IDEA, the school district must decide whether to complete a special education evaluation if anyone expresses concern that the child will need special education services when the child turns three years old. If the child is found eligible for special education services, then an individualized education program, or IEP, must be completed before the child turns three. The law allows each state to create its own transition process, so you must look to your state’s rules to determine the exact steps and timeframes required in your state.

If a parent disagrees with any aspect of the IFSP, including the transition plan, the parent can file a complaint.

 
What procedural safeguards are available for parents?

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To ensure parents are actively involved in deciding whether and which early intervention services their children receive, the law gives parents a number of protections. These protections are called procedural safeguards and include the following:

  • Access to records
  • Parental consent
  • Prior written notice
  • Filing a complaint
  • Mediation
  • Stay-put
  • Surrogate parents

Access to Records
The IDEA gives parents the right to review any records the early intervention program has about their child. The program must provide parents access to their child’s records within 10 days of the parent’s request and before an IFSP meeting or a hearing for a due process complaint. Parents must receive free copies of all evaluations, assessments, and IFSPs as soon as possible after any meeting where they are discussed. The IDEA does not require schools to give parents free copies at other times or free copies of other records regarding their child, though some state or local laws might require schools to provide parents free copies of their child’s records.

Parents also have the right to give other people permission to see their child’s records. This is usually done through a release the parent signs describing who can see the records and what records the person can see. Parents have the right to request an explanation from the school of any records that they don’t understand. They also have the right to correct any records that they believe are wrong. Parents can file a complaint if the school refuses to change information they believe is wrong. The record must be changed if it is found that the information is wrong. Even if the information is not found to be wrong, parents have a right to add a statement to their child’s record about what they think is wrong, and their statement must be included any time the record is shared.

Parental Consent
There are certain actions that the early intervention program cannot take before it gets consent from a child’s parent. That means that the parent must give permission in writing to take the action. The consent must also be informed, which means that the parent must be given enough information so that the parent can understand what they are signing. The school must provide information in language the parent can understand, and the parent must understand that the consent is voluntary. No one can force a parent to give consent.

Early intervention programs must get consent from a parent before a child is screened, evaluated, or assessed, and before the child receives early intervention services. If a parent does not give consent, the program must make sure the parent understands that the child will not receive the screening, evaluation, assessment, or early intervention services. Programs cannot file a complaint to get permission to do the screening, evaluation, or assessment or to provide early intervention services.

Parents can consent to some services and not others. They can also withdraw their consent for some services and not others after their child has begun receiving services. The program must provide the services for which there is consent and cannot provide the services that have been declined.

Prior Written Notice
Early intervention programs must provide prior written notice any time they want to change a child’s eligibility, early intervention services, or placement, and any time they refuse to make a change that the parent has requested. Prior written notice means that the school must tell parents, in writing, before they do or don’t take an action to change a child’s early intervention services. The notice must include a description of the change, the reason the change is (or is not) being made, other options that were considered, and the information that was relied on to make the decision. The notice must also explain to parents that they have the right to disagree with the decision and provide contact information for organizations the parent can call to ask for help. If parents disagree with a decision about their child’s services, the parents can file a complaint.

 

Filing a Complaint
The IDEA created an early intervention system that is focused on serving the child and his or her family. Families are given a central role at every stage of the early intervention process, including when disagreements arise between the family and the early intervention providers. Relationships and support are so important for parents of very young children who have disabilities, so parents should always try to resolve their concerns with their child’s providers first, and then with the help of the early intervention service coordinator. It is good practice for parents to follow up any conversations or meetings with a written thank you letter or email that summarizes any agreements reached, so that everyone is on the same page.

However, when informal conversations and meetings aren’t successful in resolving disagreements, parents have the right to file a complaint against the child’s providers and/or the early intervention program. There are two types of complaints: state complaints and due process complaints. Though each state creates its own rules for these processes, the IDEA includes some basic requirements:

  • Both state complaints and due process complaints must be filed in writing, typically with an office in the state’s department of education.
  • Both state complaints and due process complaints must include the child’s name, the early intervention provider’s name, a description of the concerns, and a description of how the person would like to see the complaint resolved.
  • The person filing a state complaint or a due process complaint must send a copy of the complaint to the other side, so that the other side has an opportunity to respond to the complaint.

A state complaint leads to an investigation by the state department of education. The investigator will typically interview the parent and provider, review records that relate to the child and the issue raised, and seek any other information that will help the investigator make a decision. The issue raised must have occurred in the last year. The investigator has 60 days to complete the investigation and issue a written decision to both the person who filed the complaint and the provider being investigated. If the investigator finds that the provider has done something wrong, the state will offer the provider technical assistance to fix the problem, negotiate with the provider to fix the problem, or send the provider a corrective action plan with a description of the actions the provider must take to fix the problem and a timeline for fixing the problems. The state complaint process is less adversarial than the due process complaint process, but there is no appeal if parents don’t like the investigator’s decision, and the state is limited in enforcing its decision if the provider chooses not to comply.

A due process complaint leads to an administrative hearing, which is like a trial, but not quite as formal. States can choose whether to use the same hearing system that they use for Part B of the IDEA, for school-age children from age three through 21, or they can create a separate Part C hearing system. If states choose to use the same Part B hearing system, a due process complaint will often take longer to resolve than a state complaint because the early intervention program has 15 days to hold a resolution session, or a meeting with the parent to discuss his or her concerns, and another 15 days to try to resolve the parent’s complaint. If the issue does not resolve in that 30 days, the hearing officer has either 30 or 45 days to hold a hearing and issue a decision, depending on which timeline the state uses. If a state creates a separate Part C hearing system, there is no requirement to hold a resolution session, and hearing officers must hold a hearing and issue a decision within 30 days of the parent’s complaint. Contact your state’s early intervention program to determine what the rules are in your state.

No matter which hearing system and timeline a state chooses, both sides in a due process hearing have the right to hire an attorney. Both sides have the right to present evidence that supports their arguments. Both sides can ask the hearing officer to ignore any evidence that the other side did not share with them at least 5 days before the due process hearing. Both sides have 90 days to appeal to state or federal court if they do not agree with the hearing officer’s decision. In addition, if the provider or early intervention program do not follow the hearing officer’s decision, the parent can file a state complaint, or go to state or federal court and ask for a court order to enforce the hearing officer’s decision. If a parent wins at the due process hearing or in court, the early intervention program has to pay the parent’s attorney’s fees. Typically, a parent will not have to pay for the other side’s attorney’s fees, even if the parent loses, but there are some exceptions in very rare cases.

If parents have questions about filing a complaint, their rights, or any part of the early intervention process, they may be able to get help from a chapter of The Arc or another organization in their state.

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Mediation
Mediation is a process where a trained mediator, who is not connected to the child’s parent, provider, or the early intervention program, meets with the parents, providers, and early intervention program to help them resolve a disagreement. States must make mediation available free of charge to parents, providers, and the early intervention program any time there is a disagreement about early intervention services, even before a state complaint or due process complaint is filed. Mediation must be voluntary, so all sides must agree to participate. Mediation is confidential, which means that no information discussed at mediation can be used later if a due process complaint is filed. If the sides reach an agreement through mediation, the agreement must be in writing, and the agreement can be enforced by a court.

Stay-Put
During a due process complaint and any appeals, the child has a right to stay-put, or to stay in the last placement agreed to by the child’s parent and the early intervention program. There is no right to stay-put during the state complaint process or during mediation when no due process complaint has been filed. If a parent is seeking a change of placement in the due process complaint, and the hearing officer orders that change of placement, the hearing officer’s placement becomes the child’s stay-put placement during any appeals.

Surrogate Parents
As described in other sections, the IDEA seeks to create a collaborative process between parents, providers, and the early intervention program staff who know a child best while also giving parents several protections to ensure a fair process when they disagree. However, sometimes the early intervention program cannot clearly identify or locate a child’s parent. In addition, some children are homeless and on their own, or they are in the custody of the state because their parents have lost their parental rights. In these cases, a surrogate parent, someone who can act as the child’s parent for purposes of the IDEA, must be identified. A court can assign someone to act as a child’s surrogate parent, but when it has not, the school district or state is responsible for identifying the children that need a surrogate parent and assigning a surrogate parent. Surrogate parents must not work for the early intervention program or any other agency that is responsible for the child’s well-being, must not have a conflict of interest with the child, and must have the knowledge and skills to adequately serve in the role of surrogate parent.

 
Are early intervention services free?

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Parents need to review the rules in their state to determine whether they may be required to pay for some of the early intervention services that their child receives. The law allows states to ask parents for permission to bill Medicaid and private insurance to pay for early intervention services, so long as the coverage would not cost the parent additional money, raise the family’s premium, risk a loss of coverage, or decrease available lifetime benefits. States are also allowed to create a sliding fee scale, based on the family’s income, to directly charge families for services that are not covered by insurance. States cannot deny services to a child whose parents are unable to pay for services, even if the parent denies the request to bill Medicaid or private insurance. Services that states must provide at no cost to the child’s family include screenings, assessments, and evaluations, service coordination, creation of the IFSP, and access to the complaint process.

 
Where can I get more information?

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