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 Parent Notification and Consent in Early Intervention at the CPIR is:
Parents are essential partners in early intervention. They have the right to be deeply involved at every step along the way, from evaluation of their child, to the writing of the individualized family service plan (IFSP), to helping to determine the early intervention services their child receives.
Not surprisingly, Part C of IDEA includes specific provisions to support the informed involvement of parents in their child’s early intervention program. Two notable requirements are:
- prior written notice, which the early intervention system must provide to parents at key points in time; and
- parental consent, which must be obtained from parents, also at key points in time.
The right to be informed and the right to give or refuse consent for pivotal activities are important procedural safeguards for parents and recognize their authority and responsibility in making decisions about their child’s involvement in early intervention, and the family’s.
Prior Written Notice: Parents’ Right to Be Fully Informed
Prior written notice refers to the notification that must be provided to parents a reasonable time before the lead agency or an early intervention services (EIS) provider proposes (or refuses) to “initiate or change the identification, evaluation, or placement of their infant or toddler, or the provision of early intervention services to the infant or toddler with a disability” and his or her family.
Purpose | The purpose of prior written notice is always the same—to ensure that parents are fully informed regarding whatever action the lead agency or EIS provider is proposing to take (or not take) with their infant or toddler or with the family. Parental consent is often needed before the lead agency or EIS provider may proceed, and that consent must be informed. Even if parental consent is not required, parents still have the right to know when something about their child’s (or family’s) involvement in early intervention is being proposed, refused, about to start, or about to change.
Content of the notice | The notice must be in sufficient detail to inform parents about—
- the action that is being proposed or refused;
- the reasons for taking (or refusing to take) the action; and
- all procedural safeguards that are available to parents, should they disagree with the early intervention system (e.g., mediation, filing a State complaint or a due process complaint, relevant timelines).
Examples| Prior written notice to parents is required in circumstances like these:
The early intervention system wants to evaluate their infant or toddler and is seeking parental consent for the evaluation.
The early intervention system refuses to evaluate an infant or toddler when parents have requested an evaluation.
The early intervention system intends to change the child’s identification as an eligible “infant or toddler with a disability.”
The early intervention system wants to begin providing early intervention services to the infant or toddler and family.
A service provider wants to change the services being provided to an infant or toddler with a disability.
Native language | To ensure that a parent can understand the notice, it must be written in a language understandable to the general public and provided in the parent’s native language (or other mode of communication), unless it is clearly not feasible to do so. If the parent’s language is not a written one, the lead agency or EIS provider must ensure that:
- the prior written notice is translated orally to the parent,
- the parent understands the notice, and
- there is written evidence that these requirements have been met.
Consent within IDEA has a very specific meaning that is closely tied to prior written notice. Consent, in IDEA, means informed written consent. The notice that is provided to parents informs them by comprehensively describing a proposed or refused action and the reasons for it. This builds the foundation of understanding upon which informed consent may then be given (or not).
The term consent is defined in the Part C regulations as follows:
Consent means that—
(a) The parent has been fully informed of all information relevant to the activity for which consent is sought, in the parent’s native language, as defined in §303.25;
(b) The parent understands and agrees in writing to the carrying out of the activity for which the parent’s consent is sought, and the consent form describes that activity and lists the early intervention records (if any) that will be released and to whom they will be released; and
(c)(1) The parent understands that the granting of consent is voluntary on the part of the parent and may be revoked at any time.
(2) If a parent revokes consent, that revocation is not retroactive (i.e., it does not apply to an action that occurred before the consent was revoked).
This definition makes it clear that:
The early intervention system must use the parents’ native language (or other mode of communication) when seeking their consent for an activity.
Consent must be given by parents in writing.
There’s a consent form and it describes the activity for which consent is sought.
The consent form also lists the early intervention records that will be released (if any) and to whom.
Giving consent is voluntary on the part of parents.
Parents may revoke their consent at any time.
Consent during evaluation process | It will come as no surprise that both prior written notice and parental consent are required repeatedly throughout the evaluation process. These times are:
- Before administering screening procedures to see if an infant or toddler is suspected of having a disability
- Before conducting evaluation of the infant or toddler to determine eligibility for Part C
- Before conducting all assessments of the infant or toddler
Consent before services are provided | Parental consent is also required before the early intervention services listed in the child’s IFSP may be provided. In order to ensure that parents understand what they are being asked to consent to, the Part C regulations require that the contents of the IFSP be fully explained to the parents [§303.340(e)]. The Part C regulations also make it clear that parents have the right to give or refuse consent for each service (one by one) and to revoke consent at any time for any service. Those regulations read:
(d) The parents of an infant or toddler with a disability—
(1) Determine whether they, their infant or toddler with a disability, or other family members will accept or decline any early intervention service under this part at any time, in accordance with State law; and
(2) May decline a service after first accepting it, without jeopardizing other early intervention services under this part. [§303.420]
Each early intervention service must be provided as soon as possible after the parent provides consent for that service.
Other times when consent is required | There are other times when parental consent may be required, but these depend on State policy. Two are mentioned in §303.420(a) and stipulate that parental consent must be obtained before the lead agency:
- may use the family’s public benefits or insurance or private insurance, if such consent is required under §303.520; and
- discloses personally identifiable information.
May the lead agency challenge or try to override a parent’s refusal to give consent? | No. The lead agency may not challenge a parent’s refusal to provide consent, not even through using the due process procedures that Part C and Part B provide for resolving disputes. [§303.420(c)]