Effective Date: July 1, 1996
Date Revised: July 1, 2013
Title:
CT Birth to Three System
RECORDS
Purpose: To insure that parents have access to information about their child and
family and that their confidentiality is protected.
Overview
In accordance with the IDEA and the Family Educational Rights and Privacy Act
(FERPA 20 U.S.C. § 1232g; 34 C.F.R. Part 99; 34 C.F.R. §303.460), the confidentiality
of early intervention records must be safeguarded. Any and all personally identifiable
information regarding children and families receiving services from Birth to Three
programs is protected from unauthorized disclosure by FERPA. Personally identifiable
information protected by FERPA is specifically exempted from the definition of
"protected health information" that is subject to the provisions of the Health Insurance
Portability and Accountability Act (HIPAA) privacy standards (45 C.F.R. § 164.501).
Definition of Records
Early intervention records are those containing any data or type of information recorded
in writing, print, video or audiotape, computer media, on film, or microfilm that is
considered to be “personally identifiable” and directly related to the child or his family.
Personally identifiable information includes:
1. the child’s name, address and date of birth;
2. the names of the parents and other family members;
3. a personal identifier, such as a social security number, Infoline number or other
child number;
4. a list of personal characteristics that would make it possible to identify the child
with reasonable certainty.
Emails are increasingly used as a means of communication between staff and families.
If the information contained in the emails is pertinent to the child’s services then this
information is considered to be part of the record. A program can either print the email
and add it to the record or identify a way to archive the information where it can be
retrieved.
Test protocols are a part of the child’s record. The only exception would be if the child’s
name was encoded on the test protocol in such a way that the examiner was the only
person who could de-code it.
Each program protects the confidentiality of personally identifiable information at the
collection, storage, disclosure and destruction stage. One official at each program
should assume this responsibility which includes:
1.
making certain the confidentiality of the records is safeguarded and
preserved;
2.
denying or granting access to records;
3.
reviewing all records to delete information that is not accurate, no longer
valid or pertinent, or may be an infringement of the rights of the child or
family;
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4.
5.
maintaining in each record a current log of persons requesting access to
that record;
annually notify parents of their rights regarding their child’s record using
the “Parents Rights Under the IDEA Part C” booklet.
Electronic Storage of Records
Programs may choose to scan records and keep them electronically. If a program
chooses to do this they still must adhere to all records requirements as far as
maintenance for six years and destruction of the records. Programs may want to
consider scanning records of children older than 3 years and then, after they are
scanned offer the parent the hard copies before they are destroyed.
Parent Access to Records
At their request, parents are to be notified who, by title, will have access to their child’s
record.
If a parent, guardian or surrogate parent requests an inspection or review of the early
intervention record, it must be arranged without unnecessary delay and in no more than
ten (10) days. No record or part of a record may be deleted or altered in any way after
a parent has requested to inspect, review or copy a record.
The official at each program in charge of records will be present at record inspections.
A representative of a specific discipline will provide interpretations and explanations of
specialized evaluations if requested by the parent.
Parents’ rights to access are restricted to the records of their own child. Information on
more than one child should never appear in an early intervention record.
Though parents may be separated or divorced, and one parent may be granted custody
by agreement or court order, it should be assumed that both natural parents have
access rights to the records until evidence to the contrary, e.g., state law or court order
is provided.
Program must provide at no cost to the parent, a copy of each evaluation, assessment
of the child, family assessment, and IFSP as soon as possible after each IFSP meeting.
Parents may be charged a fee to obtain a copy of their child’s early intervention record,
if the fee does not effectively prevent the parents from exercising their rights. The fee
cannot exceed the cost of the copies.
When Consent is Needed for Access to Records
Written parental consent MUST BE obtained prior to:
1.
The collection of information for a record through:
a. in-depth developmental and family assessment;
b. requests for copies of reports from another agency using
Form 3-2 (this form is HIPAA compliant, for ease of use with a
health care provider).
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2.
The release of personally identifiable child or family information to another
agency.
Parental consent IS NOT required to release personally identifiable information to:
1.
A program’s employees and contractors such as teachers, therapists,
supervisors, administrators, secretaries, or paraprofessionals who have
been determined to have legitimate interests. Legitimate interest is
performing a task related to his or her job description or a service to the
child or family.
2.
LEAs or school systems in which the student seeks or intends to enroll
with parent consent.
3.
Authorized representatives of: United States Department of Education,
Connecticut Department of Social Services, Connecticut Department of
Developmental Services, or Health Care Financing Administration (HCFA)
in connection with the audit, evaluation, or enforcement of state and
federally supported programs. These representatives are not permitted to
collect (take away) personally identifiable information unless specifically
authorized to do so by state or federal law.
4.
Accrediting organizations in order to carry out their accrediting functions.
5.
Appropriate persons, if the knowledge of such information is necessary to
protect the health or safety of a child in case of neglect or abuse. The
factors to be taken into account in determining whether personally
identifiable information from the early intervention record of a child may be
disclosed under this section shall include the following:
a.
the seriousness of the threat to the health or safety of the child or
other individuals
b.
the need for the information to meet the emergency
c.
whether the parties to whom the information is disclosed are in a
position to deal with the emergency
d.
the extent to which time is essential in dealing with the emergency
6.
To comply with a judicial order or lawfully issued subpoena.
Documentation of Requests to Access Records
Each program will maintain documentation of requests for and disclosure of personally
identifiable information from the early intervention record in each child’s record for all
persons using the Early Intervention Record Access Log, Form 3-4. Persons
determined to have a legitimate educational interest (see Rights to Access on previous
page, #1 under “consent is not required”) do not have to be included on the log.
Parents who request to see their child’s record should be included on the log.
The record of requests will be maintained as long as the child’s record is maintained
and the parent may inspect it.
Access to Records by DCF
If a child is under the guardianship of the Department of Children and Families, the
child’s DCF worker may have access to the child’s early intervention record without the
consent of the child’s surrogate parent, parent, or legal guardian. If the child is not
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under DCF guardianship, however, then only the surrogate parent, parent, or legal
guardian may consent to releasing information from the early intervention record to
DCF.
The exception to this would be if there is an active investigation of abuse or neglect. In
those instances, when the request is made in writing on DCF letterhead, DCF
investigators will be granted access to any information in the early intervention record.
There is no need for consent or for a subpoena.
Amendment of Records
Parents have the right to request that information collected on their child or family,
which they believe inaccurate, misleading or in violation of their child’s rights or privacy
be amended. The request will be acted upon within thirty (30) days. If the program
decides to refuse to amend the information in accordance with the request, it shall
inform the parent of the refusal, and advise the parent of the right to have a hearing by
an independent third party. The program will notify the Birth to Three Family Liaison.
A hearing is held within a reasonable period of time after the Birth to Three Family
Liaison receives the request. The parent is given notice of the date, place, and time in
advance of the hearing. The hearing will be conducted by an impartial hearing officer
who will make a recommendation to the Commissioner of the Department of
Developmental Services. The parent is afforded a full and fair opportunity to present
evidence relevant to the issues raised, and is assisted or represented by individuals of
his or her choice at his or her own expense, including an attorney. The hearing officer
makes his decision in writing within thirty (30) days after the conclusion of the hearing.
If, as a result of the hearing, it is determined that the information is inaccurate,
misleading, or otherwise in violation of the privacy or other rights of the infant, toddler or
family, the program shall amend the information accordingly and so inform the parent in
writing.
If, as a result of due process, it is determined that the records do not need amending,
the parents may enclose a statement indicating that they disagree with the contested
information. Their statement will then become a formal part of the child’s record and be
kept as such for the life of the record. Copies of the statement will be released,
whenever copies of the contested part of the record are released (always with parental
permission).
Parents also have the right to file a complaint with the U.S. Dept. of Education
concerning alleged failures of compliance with FERPA.
Destruction of Records and Data
The destruction of early intervention records that are more than six years old will take
place after the parents have been notified and given an opportunity to obtain the record.
The provider program should notify parents that these records may be needed by the
child or parent for social security benefits. For children that were living in foster homes
at the time they received early intervention services, the DCF worker, surrogate parent,
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and biological parent (unless parental rights were terminated) should be notified of the
pending destruction of the record.
The information in the Birth to Three data system is maintained indefinitely.
Highly Confidential Records
Confidential records contain information that if disclosed would likely constitute an
invasion of personal privacy. Records containing information on HIV status of the child
or family are considered confidential.
To Obtain Highly Confidential Information
In order to obtain information on the HIV status (testing included) of a child, the written
consent by the parent or guardian, specific to the HIV information, is needed. The
general release of information for individual records is not sufficient in this case. See
Authorization for Programs to Obtain Confidential Information, Form 3-15.
Authorized records containing HIV information shall be maintained separately from the
early intervention records, unless the parent specifies that each person who has access
to the early intervention record has access to this confidential information. Upon a child’s
exit from Birth to Three services, confidential records kept separate from the child’s
early intervention record will be destroyed with parental notification or the contents
returned to the parent.
To Release Highly Confidential Information
In order to release information on the HIV status of a child (testing included), the written
consent by the parent or guardian is needed. The consent must indicate that HIV
information will be shared and must indicate to whom. The HIV status of a child shall be
released only to those providers who have a need to know.
If a child with known HIV positive status is to participate in a community group setting, the
family must be advised to consult with the physician who is documented to know the
child's status to determine the risk to that child. Written permission by the parent or
guardian is needed before the HIV status can be shared with the director of a community
agency.
Unauthorized Information
If verbal or written information regarding HIV testing, HIV status, or any information that
leads to a suspicion of HIV status (referral for testing, treatment or medication, residence
in a foster home for HIV positive persons) is received by any provider without the proper
releases on file, it shall remain confidential.
Once a provider has knowledge of confidential HIV related information, regardless of its
source, providers may not disclose or be compelled to disclose the information.
Unauthorized written information shall be returned to the source.
Whenever a party, other than the parent or legal guardian, discloses confidential HIV
related information without written permission, providers should interrupt the disclosure.
Remind the party that Section 19a-585 of the Connecticut General Statutes protects the
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confidentiality of the information and Section 10a-590 of the Connecticut General
Statutes states that willful violation of the statute that protects HIV information may
subject a person to damages to compensate the injured party.
Sharing Information from a Record
All information received by a provider using the authorization to obtain information will
become part of a child’s early intervention record and will be kept confidential in
accordance with the Individuals with Disabilities Education Act and the Family
Educational Rights and Privacy Act (FERPA). With a signed Authorization to Release
Information Form 3-3, any information within the child’s early intervention record may be
released. Form 3-3 is a one-time release of the information listed. The “date” listed is
meant to cover the time between when the form is signed and when you expect the
information to be released. It gives the parent a timeframe during which they may
change their mind about releasing the information and can revoke their consent by
filling out the bottom of the form. A typical date might be a week after the parent has
signed though it may be shorter to accommodate getting the primary medical provider’s
signature as soon as possible on the IFSP.
When a child exits the Birth to Three System to attend a program under the jurisdiction
of their LEA, the minimum information shared from their early intervention record with
parental permission is the current IFSP and most recent evaluation of progress. With
parental permission, any information from point of referral on may be shared. Upon a
child’s exit from Birth to Three services, confidential records kept separate from the
child’s early intervention record will be destroyed with parental notification or the
contents returned to the parent.
At the request of the parent and upon a signed Authorization to Release Information
Form 3-3, any specified information may be shared with other community agencies or
service providers. Note: the parent(s) must have had an opportunity to review the
document(s) being released before signing Form 3-3 or Form 3-15.
_______________________________
References:
Form 3-2, Authorization for Programs to Obtain Information
Form 3-3, Authorization for Programs to Release Information
Form 3-4, Early Intervention Record Access Log
Form 3-15, Authorization for Programs to obtain Confidential Information
Family Educational Rights and Privacy Act
34 CFR Sections 303.401 through 303.417
Section 17a-248-6 of the Regulations of CT State Agencies
Section 19a-585 and 19a-590 of the C.G.S.
Parents Rights Under IDEA Part C booklet