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The Right of Parental Consent
One of parents’ most important rights is the right to give (or not give) their consent for certain actions of the AEA with respect to their infant or toddler with a developmental delay or disability. AEAs and signatory agencies have a duty to ensure parents are informed of what they are consenting to, including arranging for an interpreter for parents with deafness or whose native language is other than English.
What is Informed Consent?
IFSP teams must ensure parents are appropriately informed of what they are consenting to.
“Informed Consent” means:
- The parent has been fully informed of all information relevant to the activity for which consent is sought, in his or her native language, or through another mode of communication;
- The parent understands and agrees in writing to the carrying out of the activity for which parental consent is sought, and the consent describes that activity and lists the records (if any) that will be released and to whom; and
- The parent understands that the granting of consent is voluntary on the part of the parent and it may be revoked at any time.
Written parental consent may be obtained on a paper copy of the form or via electronic signature within the Web IFSP system.
As long as a parent has the legal authority to make educational decisions for the child (married parents, divorced parents when each retains decision-making authority, etc.), the AEA must accept either parent’s consent or revocation of consent.
What are “Reasonable Efforts” to Obtain Consent?
When consent is necessary, the IFSP team must make “reasonable efforts” to obtain informed consent from a parent. Additionally, the IFSP team should consider the use of varied methods (e.g. phone, letter, face-to-face) to contact the parent.
“Reasonable efforts” requires that a record of attempts to secure consent be kept including:
- Detailed records of telephone calls made or attempted and the results of those calls;
- Copies of correspondence sent to the parents and any responses received; and/or
- Detailed records of visits made to the parent’s home or place of employment and the results of those visits.
When is Parental Consent Required?
Parent consent must be obtained before:
- Administering screening procedures that are used to determine whether a child is suspected of having a developmental delay;
- Any evaluations and assessments of a child are conducted;
- Early intervention services are provided to a child;
- A public agency seeks reimbursement from the child’s public benefits or insurance (e.g., Medicaid), or private insurance; and
- Disclosure of personally identifiable information unless otherwise permitted.
NOTE: Parent consent is not required to disclose personally identifiable information:
- To authorized representatives, officials, or employees of participating agencies collecting, maintaining, or using the information;
- When required under Early ACCESS rules on the transition from Early ACCESS; or
- When permitted by FERPA, unless a FERPA exception applies, parental consent is required whenever personally identifiable information is used for any purpose other than meeting a requirement of Early ACCESS.
To ensure a smooth transition from early intervention to special education, parent consent is not required to transfer records for a child who is or may be eligible for special education services.
Consent for Screening, Evaluation, and Assessment
Consent for screening, evaluation, and assessment is required to be signed prior to any screening, evaluation, or assessment of the child.
Once a service coordinator has explained Early ACCESS to the family, reviewed procedural safeguards, and obtained signed consent, the service coordinator will schedule the timely screening or comprehensive, multidisciplinary evaluation unless eligibility is established using a child’s medical and other records.
The initial assessment of the child and family may, and usually does, occur simultaneously with the evaluation. If an evaluation is not required because the child has a documented diagnosed condition or delay, an assessment is needed in order to gather information to identify the child and family’s needs to develop IFSP outcomes and determine services.
The parent has the right to decline or refuse screening/ evaluation/ assessment for their child.
If the parent declines, the service coordinator must make reasonable efforts to ensure the parent is informed of:
- the nature of the screen/evaluation/assessment;
- all areas of the child’s development are required to be evaluated/assessed; and
- that Early ACCESS services cannot be provided without consent for a comprehensive multidisciplinary evaluation to determine eligibility.
Consent for Early Intervention Services
Prior to the initial provision of early intervention services, the AEA must obtain informed written consent. Each early intervention service must be provided as soon as possible or within 30 days after the parent consent for the service.
Parent’s Right to Withdraw Consent for Services
Parents may refuse or withdraw their consent for a particular early intervention service or all early intervention services at any point.
If a parent refuses or withdraws consent, after the initial provision of early intervention services, the early intervention agencies:
- May not continue to provide early intervention services, but must provide written prior notice indicating the delivery of early intervention services will end.
- May not use procedural safeguards in order to obtain agreement or use a ruling from a hearing, mediation, or state complaint to provide services to the infant/toddler.
- Will not be considered in violation of the FAPE requirement because of failure to provide early intervention services.
- Is not required to convene an IFSP team meeting or develop an IFSP.
- Shall inform the parents that revocation is not retroactive, therefore it does not apply to any actions which occurred before consent was revoked.
Consent/Refusal for Seeking Medicaid Reimbursement
A public agency may seek written parental consent to claim reimbursement from a public insurance source (Medicaid) for services delivered to meet the needs of an eligible infant or toddler. Parents must also be notified as part of the consent request that their refusal to allow access to their public benefits or other insurance does not relieve an AEA of responsibility to ensure that all required services are provided at no cost to the parents.
Public Insurance (Medicaid)
Families have the right to consent or not consent to the release of personally identified information contained in their child’s IFSP to the Iowa Department of Human Services Medical Program or their contractor on the Parent/Guardian Authorization Form For Medical Reimbursement For IFSP Services. This form is a federal requirement. Parent/Guardian consent is valid for one year, as long as services in the IFSP do not change. If the IFSP is rewritten and the amount, duration, or scope of a Medicaid service changes, then a new consent must be obtained. This consent is to be obtained only for children who already are on Medicaid or who are in the application process.
Consent for the Exchange and Release of Information
An agency may seek written parental consent to exchange information with outside agencies to gather additional information as part of the evaluation or assessment and to foster collaboration with outside providers with knowledge of the infant/toddler.
Parent consent is documented with a signature on a Consent to Release/Exchange Information form.
Per HIPAA requirements, if the IFSP team needs the following special information: mental health, sexually transmitted disease, substance abuse/chemical dependence, or HIV/AIDS records, it must be indicated on the release form.
For more detailed information regarding parent consent, visit our Resources page.