1. What Professionals Need to Know to Promote Parent Advocacy EHDI 2007 Leeanne Seaver, M.A. Executive Director Hands & Voices National Judy Harrison, M.A. Senior Director of Professional Programs Alexander Graham Bell Association For the Deaf and Hard of Hearing Barbara Raimondo, JD Staff Attorney National Association of the Deaf

2. Early Intervention Principles & Transition to Part B

3. Infants and Toddlers with Disabilities, Part C, IDEA and EHDI WORKING TOGETHER TO MAKE A DIFFERENCE Legislation: 20 USC §1431-1445 et.seq. Legislation: 20 USC §1431-1445 et.seq. Regulations: Not published as yet—Dept. of Ed. Regulations: Not published as yet—Dept. of Ed. H.R. 1198 Public Health service Act --Reauthorization H.R. 1198 Public Health service Act --Reauthorization Federal Budget Appropriations Process $$ Federal Budget Appropriations Process $$ UNHS and Part C under Labor HHS UNHS and Part C under Labor HHS Copyright 2007 Gerri Hanna Copyright 2007 Gerri Hanna

4. Buzz Words… Eligible or NOT (Deficit Model) Eligible or NOT (Deficit Model) Modes of Communication Modes of Communication Service Coordination Activities Service Coordination Activities Natural Environments Natural Environments Speech, Cued, Sign, Audiological Services Speech, Cued, Sign, Audiological Services Parent Training Activities Parent Training Activities Assistive Technology—Hearing Aids $$$ Assistive Technology—Hearing Aids $$$ Transition to Preschool! Transition to Preschool! Copyright 2007 Gerri Hanna

5. IFSP: Individualized Family Service Plan Family Centered under IDEA Family Centered under IDEA Family Supports under EHDI Family Supports under EHDI Peer Reviewed Research Peer Reviewed Research Family Choice vs. Appropriateness Family Choice vs. Appropriateness Natural Environment ?? is the HOME? Natural Environment ?? is the HOME? PLUS: All the OTHER STUFF PLUS: All the OTHER STUFF Copyright 2007 Gerri Hanna

6. FAMILY FAMILY FAMILY What do families say?? Service coordination/EHDI activities to provide comprehensive information about resources, service options, communication methods and be unbiased. (research based from family surveys) Service coordination/EHDI activities to provide comprehensive information about resources, service options, communication methods and be unbiased. (research based from family surveys) Experienced personnel with background, training and expertise in hearing loss. Experienced personnel with background, training and expertise in hearing loss. Program and service options and placements. Program and service options and placements. HOW DO WE DO THIS??????????? Copyright 2007 Gerri Hanna

7. Take Action! IDEA Part C, Comment Periods and testimony locations on the regulations will be announced when the regulations are released. IDEA Part C, Comment Periods and testimony locations on the regulations will be announced when the regulations are released. Support for House and Senate EHDI Bills and Appropriations can be a grassroots advocacy initiative through you as a constituent in your home districts. Support for House and Senate EHDI Bills and Appropriations can be a grassroots advocacy initiative through you as a constituent in your home districts. Continued collaboration and interagency agreements between EHDI and Part C. Continued collaboration and interagency agreements between EHDI and Part C. ASK US TO ASSIST YOU! Copyright 2007 Gerri Hanna

8. General Principles of the Individuals With Disabilities Act: IDEA

9. FAPE: Free & Appropriate Public Education Special education and related services Special education and related services public expense public expense public supervision and direction public supervision and direction meet SEA standards meet SEA standards in conformity with individualized education program (IEP) in conformity with individualized education program (IEP) Special education – specially designed instruction Special education – specially designed instruction Related services – services that allow a child to benefit from special education Related services – services that allow a child to benefit from special education Goal: to have child access and progress in general curriculum Goal: to have child access and progress in general curriculum Question: What is needed to help the child access and progress in the general curriculum? How should instruction be designed? What related services will support the special education of the child? Copyright 2007 B. Raimondo

10. Evaluation Not racially or culturally discriminatory Not racially or culturally discriminatory Language and form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally Language and form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally Valid and reliable Valid and reliable Trained and knowledgeable personnel Trained and knowledgeable personnel Question: Do evaluators have experience evaluating deaf and hard of hearing children? Are the assessments appropriate? What is done with evaluation and assessment data? Copyright 2007 B. Raimondo

11. IEP: Individualized Education Program Present levels of academic achievement and functional performance, based on data Present levels of academic achievement and functional performance, based on data Measurable annual goals, including academic and functional goals, and aligned with general curriculum Measurable annual goals, including academic and functional goals, and aligned with general curriculum Special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child Special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child Explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class and in other activities Explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class and in other activities Statement of accommodations that are necessary to measure the academic achievement and functional performance of the child on State and district-wide assessments Statement of accommodations that are necessary to measure the academic achievement and functional performance of the child on State and district-wide assessments Questions: Are parents involved in pre-meeting preparation? Are they provided an opportunity to give their views? Are they viewed as experts on their child? Copyright 2007 B. Raimondo

12. Least Restrictive Environment To the maximum extent appropriate, children with disabilities... are educated with children who are not disabled... Continuum of alternative placements Settings must meet communication and related needs of the child Regular classroom is an appropriate placement for some children who are deaf, but for others it is not Individual placement determination about LRE is to be considered within the context of FAPE LRE determined only after IEP is developed that addresses full range of child’s needs Question: Does the professional fully explain to the parent the choices and options available to them and their child? Are choices and options available? Copyright 2007 B. Raimondo

13. Parent/Student Participation in Making Decisions Integral role in developing the IEP Integral role in developing the IEP Part of the group that decides placement Part of the group that decides placement Can challenge the school’s decisions if they disagree Can challenge the school’s decisions if they disagree Protected by procedural safeguards Protected by procedural safeguards Questions: Does the professional ensure that parents receive and understand sufficient information so that they can be equal participants? Does the professional fully explain to the parent what is being proposed? Is information sent to the family well in advance for review? Copyright 2007 B. Raimondo

14. Reference Benedict, B. & Raimondo, B. (2003). Family Rights, Legislation, and Policies. In B. Johnson & M. Sass- Lehrer, eds., The Young Deaf or Hard of Hearing Child (pp. 61-95. Baltimore: Paul H. Brookes Publishing Company. Benedict, B. & Raimondo, B. (2003). Family Rights, Legislation, and Policies. In B. Johnson & M. Sass- Lehrer, eds., The Young Deaf or Hard of Hearing Child (pp. 61-95. Baltimore: Paul H. Brookes Publishing Company.

15. What does the law say about students who are deaf or hard of hearing?

16. IDEA’s Special Considerations for Students Who Are Deaf or Hard of Hearing “In the development, review and revision of an IEP…consideration of special factors: (iv) Consider the communication needs of the child, and in the case of the child who is deaf or hard of hearing, consider the language and communication needs, opportunities for direct communication with peers and professionals in the child’s language and communication mode, academic level, and full range of needs including opportunities for direct instruction in the child’s language and communication mode, and (v) Consider whether the child requires assistive communication devices and services.” IDEA Statute Sec. 614 (3) (B) & Regs: Section 300.324 (2) (iv) (v)

17. 2004 Reauthorization Impacts You Need to Know… Evaluation Procedures require the gathering of “academic” information & that the “language and form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally, unless it is not feasible to do so” rather than in the child’s native language” (Sec. 615(b)). Evaluation Procedures require the gathering of “academic” information & that the “language and form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally, unless it is not feasible to do so” rather than in the child’s native language” (Sec. 615(b)). Strengthening the role and responsibility of parents (in Findings) Strengthening the role and responsibility of parents (in Findings) Transition Services are to be more results oriented “focused on improving academic and functional achievement of a child with a disability to facilitate” movement from school to …….. (Sec. 602 (34)) Transition Services are to be more results oriented “focused on improving academic and functional achievement of a child with a disability to facilitate” movement from school to …….. (Sec. 602 (34)) If the LEA representative is excused from the staffing, a team member present must be authorized to commit the LEA. If the LEA representative is excused from the staffing, a team member present must be authorized to commit the LEA. Procedural Safeguards distributed less--once annually, or at the initial referral or request for evaluation, upon filing a complaint, or at the request of the parent. Parents can initiate a request for an initial evaluation, which must be completed within 60 calendar days (unless state regs require a tighter timeframe). The Determination of Eligibility must also serve as an evaluation of the Educational Needs of the student. Parents must approve in writing the absence of any required member of the IEP team. Copyright 2007 Hands & Voices

18. New with 2004 Reauthorization “Medical device that is surgically implanted or the replacement of such device” is excluded from the definition of an assistive technology device or related service. Sec. 602 (1)(B) & Regs at Sec. 300.34 Related Service PART B RELATED SERVICES 34CFR300.34(b) Exception; services that apply to children with surgically implanted devices, including cochlear implants. (1) Related services do not include a medical device that is surgically implanted, the optimization of that device’s functioning (e.g., mapping), maintenance of that device, or the replacement of that device. (2) Nothing in paragraph (b)(1) of this section— (i) Limits the right of a child with a surgically implanted device (e.g., cochlear implant) to receive related services (as listed in paragraph (a) of this section) that are determined by the IEP Team to be necessary for the child to receive FAPE. (ii) Limits the responsibility of a public agency to appropriately monitor and maintain medical devices that are needed to maintain the health and safety of the child, including breathing, nutrition, or operation of other bodily functions, while the child is transported to and from school or is at school; or (iii) Prevents the routine checking of an external component of a surgically-implanted device to make sure it is functioning properly, as required in §300.113(b). PART B ROUTINE CHECKING OF HEARING AIDS AND EXTERNAL COMPONENTS OF SURGICALLY IMPLANTED MEDICAL DEVICES 34CFR300.113 Hearing aids. Each public agency must ensure that hearing aids worn in school by children with hearing impairments, including deafness, are functioning properly. External components of surgically implanted medical devices. (1) Subject to paragraph (b)(2) of this section, each public agency must ensure that the external components of surgically implanted medical devices are functioning properly. (2) For a child with a surgically implanted medical device who is receiving special education and related services under this part, a public agency is not responsible for the post-surgical maintenance, programming, or replacement of the medical device that has been surgically implanted (or of an external component of the surgically implanted medical device).

19. IEP Impacts Include…. Benchmarks or short-term objectives deleted; only required for students taking alternative assessments. (Sec 614 (A) (2)). A statement of measurable annual goals including “academic & functional” goals. (IDEA 614 (i) II). ID accommodations necessary to measure the academic achievement and functional performance of the child on state & district assessments (VI)(aa). IEP progress towards annual goals must be reported “concurrent with the issuance of report cards” (Sec. 614(d)(1)(A)(i)(III).. IEP services & supplementary aids must be qualified with “based on peer- reviewed research to the extent practicable”. (Sec 614 (4)). Parents & school IEP teams can agree to change an IEP w/o convening a full staffing via the amended IEP. (Sec. 614 (3) (D)) Copyright 2007 Hands & Voices

20. Case law gems… Deal v Hamilton Board of Education (6 th Circuit, 2004) Here’s the Deal: “Meaningful Educational Benefit must be gauged by the child’s potentialities” – seen as a Maximizing Standard Deal v Hamilton Board of Education (6 th Circuit, 2004) Here’s the Deal: “Meaningful Educational Benefit must be gauged by the child’s potentialities” – seen as a Maximizing Standard L.B. v Nebo School District (10 th Cir., 2004) High functioning child with autism cannot be placed in school’s non-categorical preschool due to “window of opportunity” requiring super-FAPE! L.B. v Nebo School District (10 th Cir., 2004) High functioning child with autism cannot be placed in school’s non-categorical preschool due to “window of opportunity” requiring super-FAPE! Copyright 2007 Hands & Voices

21. Efforts to make the system more responsive…

22. How do we strengthen services & supports for students who are deaf or hard of hearing? “Meeting the Needs of Students Who Are Deaf or Hard of Hearing” Educational Services Guidelines updated & published by NASDSE, July 2006 “Meeting the Needs of Students Who Are Deaf or Hard of Hearing” Educational Services Guidelines updated & published by NASDSE, July 2006 The National Deaf Education Project seeks to fix a ‘flawed’ law thru legislation www.ndepnow.org The National Deaf Education Project seeks to fix a ‘flawed’ law thru legislation www.ndepnow.orgwww.ndepnow.org National Leaders Summit calls for stakeholder commitment to systemic improvement via The National Agenda. National Leaders Summit calls for stakeholder commitment to systemic improvement via The National Agenda. Deaf Child’s Bill of Rights Deaf Child’s Bill of Rights State legislation has been passed in Colorado, Hawaii, California, Louisiana, South Dakota, and New Mexico, to address the unique needs of students who are d/hh…beyond the limits of the IDEA.

23. POWERPLAY: a state DCBR plus IDEA’s Special Considerations! Examples from New Mexico & Colorado’s Deaf Child’s Bill of Rights…. Requires a Communication Plan or Communication Considerations as addendum to every d/hh student’s IEP. Creates a mechanism to promote discussion about the unique needs of the student relative to: - Language & Communication, and student’s proficiency - Opportunities for direct communication & direct instruction - Peers & DHH adult role models - Accommodations & access to instruction/extra-curricular activities - Staff ability, support services, and educational placement. Avoids the ‘checklist’ approach. Operationalizes the IDEA’s ‘special considerations’ for DHH Copyright 2007 Hands & Voices

24. Your questions & input…

25. Hands & Voices National Leeanne Seaver parentadvocate@hndsandvoices.org www.handsandvoices.org ASDC Barbara Raimondo braimondo@deafkids.org www.deafkids.org AG Bell Gerri Hanna ghanna@agbell.org www.agbell.org Other great advocacy resources:. www.wrightslaw.comwww.wrightslaw.com. www.ndepnow.orgwww.ndepnow.org. www.copaa.netwww.copaa.net. www.pacer.orgwww.pacer.org Contact information & further resources…