2012 IDEA Leadership Conference Leading Together to Achieve Success from Cradle to Career Part C Regulatory Changes to Parent Rights, Safeguards and Consent: Implications for Families Joicey Hurth, NECTAC/NERRC Anne Lucas, NECTAC/WRRC Rhonda Spence, OSEP Hillary Tabor, OSEP

Acknowledgement This presentation was adapted from a presentation by Sharon Walsh, Division of Early Childhood, Council for Exceptional Children and IDEA Infant Toddler Coordinators Association

3 Changes in Part C: Procedural Safeguards General Responsibilities Confidentiality of Information Parental Consent and Notice Surrogate Parent Dispute Resolution Options Use of Insurance, Benefits, SOPs, and Fees 3

4 General Responsibilities Adds requirement to make available to parents an initial copy of the child’s early intervention record, at no cost to the parents (34 CFR § (c)) 4

5 Confidentiality & EI Records §§ Incorporates Part B (§§ ) and FERPA (§99) confidentiality provisions with modifications Clarifies procedures apply as soon child is referred for EI services until records are no longer maintained Primary referral source may be required to obtain parental consent prior to making a referral under other applicable laws (such as HIPAA, CAPTA, or State laws) 5

6 Confidentiality §§ The required Notice to families (§ ) at referral must incorporate all the new confidentiality requirements Changed timeline for parental access to records from 45 days to 10 days 6

Fees for Records § (c) Added “A participating agency must provide at no cost to parents, a copy of each evaluation, assessment of the child, family assessment, and IFSP as soon as possible after each IFSP meeting”

8 Records & Confidentiality §§ Comments clarify right to amend records only applies to information about the parent and child, not other family members Defines early intervention records Includes opt-put policy for notification Adds GEPA and EDGAR provisions to language about destruction of records

Consent—Definition §303.7 Consent means parent has been fully informed of all information relevant to the activity for which consent is sought (in native language) and parent understands and agrees in writing Consent form describes activity and EI records (if any) that will be released and to whom Parent understands that consent is voluntary and may be revoked at any time but revocation is not retroactive (i.e., does not apply to action that occurred before consent was revoked)

Prior Written Notice—Definition § Prior written notice must be provided to parents a reasonable time before LA or EIS provider proposes, or refuses, to initiate or change the identification, evaluation or placement of child or the provision of EI services Content of notice must inform parents of the action being proposed or refused, the reasons for the action, and all procedural safeguards Prior notice must be written in language understandable to general public and be provided in native language of parent or other mode of communication used by parent unless clearly not feasible to do so

IFSP Meeting Notice § (d)(2) IFSP meeting arrangements must be made with, and written notice provided to, the family and other participants early enough before the meeting date to ensure that they will be able to attend

12 Parental Consent and Notice § Clarifies parental consent required before: Administering screening (§ ) All evaluations and assessments Providing early intervention services Public benefits or insurance or private insurance are used, if required Disclosure of personally identifiable information May not use hearing procedures to challenge parent’s refusal to provide consent (now including consent to evaluation) 12

13 Determination Child Is Not Eligible § “If, based on the evaluation… the lead agency determines that a child is not eligible under this part, the lead agency must provide the parent with prior written notice required in § , and include in the notice information about the parent’s right to dispute the eligibility determination through dispute resolution mechanisms under § , such as requesting a due process hearing or mediation or filing a State complaint.”

14 Surrogate Parent For children who are wards of the State or placed in foster care, the lead agency must consult with the public agency that has been assigned care of the child In the case of a child who is a ward of the State, the surrogate parent may be appointed by the judge overseeing the infant or toddler’s case provided that the surrogate parent meets the requirements Requires lead agency to make reasonable efforts to ensure assignment of surrogate parent not more than 30 days after determination child needs a surrogate parent

15 Mediation § May be requested at any time Mediation agreement is a legally binding agreement and is enforceable in state or federal court Agreement is signed by both the parent and a representative of the lead agency who has the authority to bind such agency

16 Mediation § Adds impartiality criteria for a mediator Changes optional procedure to offer (not require) meeting to encourage mediation Lead agency must select mediators on a random, rotational, or otherwise impartial basis

17 State Complaint Procedures §§ Eliminates option to have another agency investigate a complaint with subsequent lead agency review Adds reference to compensatory services Modifies filing deadline; only one year now Details content of complaint (including for child specific complaint, proposed resolution) and requires copy to public agency or EIS provider when filing with LA Gives public agency/EIS provider opportunity to respond and at state discretion to offer a resolution Adds option to extend timeline if parties agree to mediation

18 Due Process Hearing §§ Retains state option to use either Part B or Part C process Incorporates Part B procedures into Part C regulations with modifications including option of 30 or 45 day timeline Under Part C process, extension of 30 day timeline can now be granted by hearing officer at request of either party Requires copies of transcription, findings of fact, and decisions to be provided to parents at no cost

Finance Provisions – Public Benefits § (a) Cannot require parent to enroll in Medicaid or other public insurance program Need consent to use Medicaid if parent not already enrolled or will incur any cost Requires written notice if state wants to use Medicaid Requires consent, if applicable, to release personally identifiable information to Medicaid agency for billing purposes 19

Use of Public Benefit: Consent Required If – § (a)(2)(ii) Decrease available lifetime coverage or any other insured benefit for child or parent under program Result in the child’s parents paying for services that would otherwise be covered by the public benefits or insurance program Result in any increase in premiums or discontinuation of public benefits or insurance for child or child’s parents, or Risk loss of eligibility for the child or child’s parents for home and community-based waivers based on aggregate health-related expenditures 20

Private Insurance – Consent § (b)(1)(i) Consent to use private insurance is required: To pay for the initial provision of an early intervention service in the IFSP, and Each time consent for services is required due to an increase (frequency, length, duration or intensity) in the provision of services in the child’s IFSP 21

Private Insurance – Consent not Required If § (b)(2) Private insurance statute states: Use of private insurance does not count towards or result in a loss of benefits due to annual or lifetime health insurance coverage caps for infant/toddler, parent, or child’s family members covered under insurance policy Use of private health insurance does not negatively affect availability of health insurance to infant/toddler, parent, or child’s family members covered under insurance policy, and insurance coverage may not be discontinued for these individuals due to use of insurance to pay for services Use of private insurance is not the basis for increasing insurance premiums of infant/toddler, parent, or child’s family members covered under insurance policy 22

System of Payment and Fees § Requires parents get copy of family cost participation policies and procedures, identifying potential costs that parent may incur Co-pays, deductibles and premiums are family costs Prohibits disproportionate family cost related to public and private insurance Cannot be charged more than actual cost of service

Explaining Safeguards to Parents: A Step by Step Model TA tool developed by NECTAC Developed to help providers recognize the many opportunities to explain Rights and Safeguards throughout the flow of the Early Intervention Process 24

Understanding and Explaining Rights and Safeguards to Families Procedural Safeguards are much more than “paper work” Rights and Safeguards represent the values and professional ethics underlying Part C Early Intervention Services TA tool for simple, family friendly explanations of rights and safeguards 25

Contact Information Hillary Tabor, OSEP Rhonda Spence, OSEP Joicey Hurth, NECTAC/NERRC Anne Lucas, NECTAC/WRRC