Author: Melinda Gillinger, Advocacy Consultant   2 questions from the field – same answer: “My child was just diagnosed with hearing loss. How and where do I even start the process of getting services with our school district?” “ Our child was attending a private school when we found out about his hearing loss. We have never worked with the public school system. How do we start, and are we too late?” The entire process/journey of navigating the Special Education system can be overwhelming to both families as well as many professionals. Teachers and therapists often know their role and their unique piece of the IFSP and IEP puzzle, but they do not always have the full picture of what the family needs to do to get started or what they need to do in the case of a disagreement. The purpose of this article is to share, for both families and educators, the steps to getting started depending on the age of the child. Depending on when your child has been diagnosed you will be initiating one of two plans, either the Individualized Family Service Plan (IFSP) or the Individual Education Plan (IEP). While the IEP is the responsibility of your local school district, the IFSP may be the responsibility of your school district or your state’s Early Intervention or early childhood disability services program (not all states use the term “early intervention”)¹ Either way, everything starts with a request in writing and comprehensive assessments. The IFSP is a written treatment plan for children from birth to 3 years old that maps out the Early Intervention services a child will receive as well as how and when these services will be administered. It details a child’s current levels of functioning in all domains, specific areas of need, and goals for treatment, referred to as outcomes¹. The IEP is a plan developed to ensure that children from 3 to 22 years old, or when they graduate from high school, who meet one of the 13 qualifying eligibilities identified under special education law (IDEA) receives appropriate placement, specialized instruction, and related services in the least restrictive environment (LRE) so that the child can receive a free and appropriate public education (FAPE). Neither the IFSP meeting nor the IEP meeting is the end of the process in initiating services and supports for your child with hearing loss. This is just the beginning of your journey.   Step by Step Guide: In most states when your child has been diagnosed, the clinical audiologist will send a referral to the local education agency which should trigger the school district or regionalized education office to reach out to the family and begin the process. That being said, the family can also initiate the process by submitting a written request for the assessment to determine eligibility for special education services. Under the Individuals with Education Act (IDEA) Part C, which governs early intervention services, an IFSP is developed for children from birth to 3 who meet eligibility criteria¹. Services for children who have solely low incidence disabilities, such as hearing loss, may receive services through a path that is different from the majority of children with early delays in development.   IFSP

1. 1. Request for assessment is provided in writing or referral is made from clinical audiologist
2. 2. Assessment Plan generated for all developmental domains
3. 3. Assessments are conducted and reports are written
4. 4. Team meets to discuss assessment results and document the following components:
   1. 1. Parent Priorities and Concerns
   2. 2. Results of assessments and the child’s present levels of performance
   3. 3. Contact information for all additional providers serving the family
   4. 4. Outcomes to meet the needs for both the child and the family
   5. 5. How these outcomes will be measured and who will be responsible
   6. 6. Offer of services for the child and the family
5. 5. Parent Signature – “Parent signature” does not equal agreement*

For the IFSP, the team must take into consideration and address the family’s priorities and concerns as a means to develop the plan. These priorities and concerns drive the IFSP, so parents should plan to be as specific as possible in order to assist the team in the process. *Note, once the offer of services has been made, the family has the right to sign in agreement to implementation of the parts of the offer to which they agree and to sign in disagreement with the portions of the offer to which they disagree. There are avenues in place to support families and districts to work collaboratively in order to resolve these disagreements. For children with developmental delays in addition to a low incidence disability such as hearing loss, the steps are all the same in the process however the EI program may be the agency responsible for managing the IFSP until they refer the child to the school district for an IEP prior to the 3rd birthday. Just because the school district is not the lead agency responsible for the IFSP does not preclude the district from serving children with hearing loss. School districts may, but are not required by IDEA to, provide early intervention services. The team is to be multidisciplinary and is to address all of the needs of the entire family. IEP

1. 1. Written request for a full evaluation of your child
2. 2. Assessment Plan generated for all areas of suspected need within 15 days of request
3. 3. Assessment Plan signed by family within 15 days of parent signature
4. 4. Parent may put request in writing to relieve draft copies of reports and proposed goals*
5. 5. Assessments are conducted and reports are written
6. 6. Draft documents provided to the family prior to the IEP meeting
7. 7. Meet as a team to discuss assessment results and develop the IEP document within 60 days of parent signature on assessment plan
8. 8. Develop each required component of the IEP document as a team, which includes parents
9. 9. Offer of Free Appropriate Public Education (FAPE)
10. 10. Signatures

Just as in the IFSP process, the family has the right to agree or disagree in part or in whole with the IEP document and the district’s offer of FAPE. Just as with the IFSP, there are procedures in place in the IDEA that guide families and districts to resolve these differences. Each step of the process should be documented in writing from the initial request for assessments to and including the IEP signature. It is important for each request to be in writing as this triggers the timelines. It is also important for parents to understand that their signature does not equal agreement. The parent signature is documentation of the components of the plan and the offer in the IFSP or the IEP to which the family both agrees and disagrees. Many families will misunderstand the signature process in a couple of different ways. I have met families who disagree with the offer and therefore decline to sign the IFSP/IEP thinking that not signing is how to disagree. However, if there is no signature, then nothing can move forward – including the services with which you may agree as well as resolution to any differences. Everything comes to a standstill without signatures and documentation of parent input. The other misunderstanding is when families or teams believe that the IFSP/IEP must be signed in full (i.e., all or nothing). This is not accurate. The family may sign in agreement to the portions of the offer with which they agree as well as documenting any areas of disagreement. This will actually move the process along much more quickly as the district then has permission to implement what was agreed to as well as to begin working with the family to resolve areas of disagreement.   Melinda Gillinger, M. A. Special Education Consultant www.melindagillinger.com

About 25-30% of children identified by universal newborn hearing screening have hearing loss in only one ear. This prevalence increases with age to about 1 ½ -2% of the school-age population. Students with unilateral hearing loss are at 10 times the risk for educational challenges as compared to their peers with typical hearing in both ears. Recent research has clarified the issues most likely to be experienced by these children. Terminology Unilateral Hearing Loss (UHL) is used to indicate ALL children who have hearing loss in one ear, and specifically for those with useable residual hearing. Single-sided deafness (SSD) is used only for students with severe-profound hearing loss in one ear. These two populations are treated differently for amplification solutions, but ALL of these students require FM/DM devices to improve classroom listening and ‘level the playing field’. The Heart of the Resulting School Problems for Students with UHL

• Poorer ability to listen and localize sound in noisy environments.
• Even a very low level of noise is likely to interfere with listening, especially when speech is presented toward the poor ear and noise is toward the typically hearing ear.
• The amount of difficulty localizing and processing speech in noise increases with degree of hearing loss.
• These children require speech to be at a higher signal-to-noise ratio if they are to perform similar to normal hearing peers (NH).
• It may take longer for these students to localize the speaker. Some children may benefit from seeing the talker (young children) however the effort required to localize who is speaking may impact the ability to comprehend what was said.
• Children are not always aware that they experience more difficulty listening than peers with NH.

  Summary of Research Findings In October 2017 Phonak held the Unilateral Hearing Loss in Children Conference. The PowerPoints and audio recordings of these presentations have generously been made available by Phonak and the speakers. Go to the following link to view the presentations about UHL in depth: https://www.phonakpro.com/us/en/training-events/events/past-events/2017/uhl-in-children-conference-philadelphia.html   Impact of UHL on Language and School Performance (Judith Lieu)

• The first 2-word phrase occurs at 18 months for UHL versus 15 months for NH.
• Delays in auditory behavior were found in 21% of UHL versus in 4% of NH.
• Delays in preverbal vocalizations were found in 41% of UHL versus only 2.6% of NH.
• Preschoolers ages 4-6 years were found to have delayed language development and have poorer scores on the Children’s Home Inventory of Listening Difficulties (CHILD) checklist.
• Early childhood: the mean total language score = 91.78, almost 10% lower than ‘average’. Converting this difference to age equivalence results in language delays of 6 months for children with UHL. These language findings were not correlated with the severity of the loss or side of UHL.
• Lower scores have been found for syntax, morphology, vocabulary for children with SSD.
• Lower scores on oral language skills, especially oral composite scores (standard score (SS) of 90 vs 99, which was a significant difference).
• Impact of cognitive ability: children with UHL who had a higher IQ (90+) had higher oral skills. Their oral skills improved over time (ages 6-12 years). Children with lower IQ (90 or less) did not improve or improved at a much slower rate in their oral skills over time. Lower IQ UHL students who were on IEPs had oral skills that improved over time whereas those who were not on IEPs decreased in their oral skills relative to age peers over time. (Longitudinal study 2013).
• Academic difficulties are apparent to the teacher: Comparisons of SIFTER checklist scores for students with UHL compared to NH indicated significant differences across SIFTER content areas: Academics – 8 vs 11, Attention – 7.8 vs 12, Communication – 8 vs 11, Class Participation – 9 vs 12.5, School Behavior – 11.5 vs 13.5.
• Quality of life: On the HEAR-QL checklist, children with UHL scored substantially lower than NH (as in scores of 72-80 compared to NH scores of 95).
• Speech/Language Summary: UHL is associated with language delays in young children and school-aged children. There is improvement over time, especially for children with 90+ IQs and those with 90 IQs or less who were on IEPs. Children with UHL do not catch up to the language level of their siblings over time. Risk factors for language delays include: Profound UHL, lower IQ, poverty, maternal education, male.
• Educational Consequences Summary: Children with UHL have an increased risk of grade failure, increased risk to be on IEPs, increased academic weaknesses per teachers, high rates of speech therapy (~50%). Language delays in infancy through adolescence may widen with age and do NOT disappear. Verbal IQ differences may widen with age and do NOT disappear.

  Effort and Fatigue Issues for UHL (Ben Hornsby)

• Fatigue can look like tiredness, sleepiness in the morning, inattentiveness and distractibility, mood changes (irritability, frustration), changes in classroom contributions, difficulty following directions.
• Listening-related fatigue may be associated with factors that increase perceived effort. UHL or BHL can increase listening difficulties, which increases listening effort, increases risk for fatigue. This may impact the individual’s evaluation of the effort-reward ratio, meaning when a listening problem is detected the student may initially increase their effort so that they can understand. When, too often, they are not successful in understanding despite the greater effort committed, they can learn that trying harder ‘isn’t worth the effort’.
• As language ability (i.e., as determined by a CELF score) improves, evidence of fatigue secondary to UHL is reduced. Better language = less risk for fatigue.
• Children with UHL who have the largest asymmetry between their ears report the most overall fatigue. SSD likely to have greater fatigue than mild/moderate UHL.
• Adults with UHL were 5 times more likely to report severe fatigue than adults with no hearing loss.

  Amplification Findings for UHL

• Younger children (6-9 years) who received their first hearing aid by age 5 showed benefit in localizing sound when they were using the hearing aid in their poor ear (UHL, not SSD). Older children (10-14 years) who received a hearing aid at age 7 or older indicated that the hearing aid was detrimental to localization. Providing early ‘balanced’ hearing to children with usable hearing in the poor ear prior to age 3 provides the best results. Early intervention success was linked to bilateral ‘balanced’ hearing. If a hearing aid is going to be fit, it should happen prior to age 3. Waiting until kindergarten will likely result in rejection (2010).
• Retrospective parent survey results: 72% of parents felt their child improved or greatly improved using a hearing aid in the poorer ear in various listening situations. Of this group of parents, 100% were happy they chose to have their child fit with a hearing aid and 50% expressed that they wished a hearing aid were fit sooner (2002).

Elizabeth Fitzpatrick Phonak presentation:

• At diagnosis, the degree of hearing loss for 154 children with UHL was 31% mild loss, 19% moderate loss, 19% moderate-severe loss, 9% severe loss, 15% profound loss, 7% high frequency loss.
• Based on 337 children, only 21% received amplification shortly after diagnosis. Most take a year or more to get their first hearing device. Average age of diagnosis was 13.9 months; average age at amplification was 42.9 months.
• Of those who received hearing aids, 37% of children with UHL did not use them. (2010)

Erin Picou Phonak presentation:

• This researcher studied whether CROS aids improve speech recognition and comprehension in the classroom. Findings indicated that in comparison to FM use, the benefit of a CROS hearing device is most notable in multi-talker situations with peers who are not using the remote FM microphone. Benefits were most apparent for speech from the ‘bad side.’

Douglas Sladen Phonak presentation:

• Cochlear implants for students with SSD: The most improvement in speech understanding is in the first 3 months after implant activation. Words/sentence scores prior to implantation are about 5% correct. After 3 months they are 35 and 55%, after 6 months they are 40 and 60%, and 12 months post-activation scores are 45 and 65%.
• CI for SSD can improve speech understanding but may have a negligible impact on listening effort.

Intervention for Students with UHL and SSD

• Seating: When possible, the classroom should be arranged in a U-shape, with the child’s poor hearing ear facing away from the students.
• Amplification options:
  • Roger FM – microphone should be passed during small group activities and discussions (i.e. Touchscreen has automatic omnidirectional mics when in group)
  • FM/DM (i.e. Roger Focus) receiver is placed in the typical ear
  • Soundfield (CADS) amplification is an option but this does not improve access during noisy group activities. CADS + FM/DM is a good option, but the teacher may have to use 2 microphones.
  • Even with optimal amplification, we cannot assume students are fully accessing communication or that they understand and process what they hear.
• Direct teaching:
  • Language, syntax, and listening comprehension should be assessed for intervention needs.
  • Students need to learn to use their hearing devices and monitor/troubleshoot appropriately.
  • Students need to learn self-advocacy skills, including communication repair strategies.
  • Students are at risk for identity, self-concept, and social/pragmatic communication skills. They need to connect with other students with UHL to develop a healthy self-concept.

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Who should be the “DHH expert” on the student’s team? Melinda Gillinger, Advocacy Consultant   Our question from the field: “We recently had a student move into our district. She has bilateral cochlear implants and uses spoken language to communicate. Her previous district had completed a triennial IEP meeting which includes DHH Itinerant services as well as services from an Educational Audiologist. I am an SLP, and the district has asked me to work with all of the students with hearing loss. How can I help the district understand that we need a Teacher of the Deaf? I was recently asked by professionals in 2 different states about the need for a Teacher of the Deaf (TOD) to support students in their schools. In one case the district contracts with an SLP to serve all of the students with hearing loss no matter their chosen mode of communication, and in the other state, the district did not include either a TOD or an Educational Audiologist in the student’s initial evaluations or any of his IEP meetings. There are many school district administrators who do not have a clear understanding of the role of the TOD and how it is separate and unique from the Speech/Language Pathologist (SLP) and the Educational Audiologist. Each of these experts should be included as members of the child’s IEP team. If you’ve met one child with hearing loss, you’ve met one child with hearing loss. Children who are eligible for special education as deaf or hard of hearing do not all present with the same needs. They may have unilateral or bilateral hearing loss and use hearing aids, cochlear implants, or no hearing technology. Depending on the family’s choice, they may communicate using only ASL, only spoken language, or a combination of sign and spoken language. For this reason, there are many varying roles for Teachers of the Deaf. The role of the Teacher of the Deaf is critical to supporting students who are deaf and hard of hearing (DHH) in the educational setting. As more and more students with hearing loss are included in the general education setting, it is important to understand the role of the DHH Itinerant teacher. These specialists should be included from the beginning to conduct assessments, identify needs, and propose appropriate goals during the IEP meetings. They provide services to students in the form of academic support which can be either push-in or pull-out depending on the IEP team’s decision. This support often includes preview and review of concepts and vocabulary that the student may not be familiar with, facilitation of communication with peers and adults, and monitoring of the educational environment. The DHH Itinerant also provides consultation with the general education teacher, SLP, administrators, and others who interact with the student on campus in order to support their understanding of the student’s unique and sometimes invisible needs. They also support staff with the use of the FM/DM technology and support students in developing their self-advocacy skills. Because the communication needs of students with hearing loss vary and are affected by their mode of communication as well as the length of time they have had auditory access to linguistic information, the itinerant DHH teacher is often involved in supporting language instruction and can collaborate with SLPs and AVTs who work with the student. For more detailed information and resources to share, professionals and parents can visit deaftec.org/itinerant. Ensuring a TOD is available on the team. Hearing loss is a low incidence disability, and there continues to be a considerable lack of understanding across both general and special educators regarding how it affects students academically, socially, and with regard to communication in general. Some districts may not have a TOD on staff. “Almost every state in the nation has some type of regional entity that helps deliver special education services in a geographically broader area than a single school district.” (cga.ct.gov)  If a district does not have a TOD on staff, the option first would be to reach out to this regionalized program. If the regional program does not have the appropriate provider, then the district can choose to establish a contract with a TOD to be on the child’s IEP team.

NOTE:

The IDEA defines the IEP team as “a group of individuals composed of” the following members https://sites.ed.gov/idea/statute-chapter-33/subchapter-II/1414:

1. The parents of a child with a disability 2. Not less than 1 regular education teacher of such child (if the child is, or may be, participating in the regular education environment) 3. Not less than 1 special education teacher, or where appropriate, not less than 1 special education provider of such child 4. A representative of the local education agency who is qualified to provide or supervise the provision of, specially designed instruction to meet the unique needs of children with disabilities; is knowledgeable about the general education curriculum; and is knowledgeable about the availability of resources of the local education agency 5. An individual who can interpret the instructional implications of evaluation results, who may be a member of the team described 6. At the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate

Whenever appropriate, the child with a disability

A few years back a district in Montana had two students with cochlear implants who use spoken language move to their schools. Their district hired a TOD from out of state for the purpose of serving these students. In California, as more and more students are being placed in their neighborhood schools in inclusive classrooms, thereby increasing the need for DHH Itinerant services, one of the regionalized county programs also reached out of state and brought in an appropriately trained TOD. Another way to facilitate that a TOD is on board is for the family to request an assessment with a TOD in writing. The district is then required to either provide the assessment or formally and in writing deny the request. (specialeducationguide.com) While the SLP and Educational Audiologist are highly trained individuals with knowledge and expertise, unless they have 2 degrees, they are not Teachers of the Deaf. Even among Teachers of the Deaf there are critical variables in training, knowledge, and expertise depending on the student’s language. Each of these three specialists is important, and each is needed on the IEP team in order to appropriately serve and support both the student with hearing loss as well as to support the general education teachers/staff who do not have the unique lens of the TOD.   Melinda Gillinger, M. A. Special Education Consultant www.melindagillinger.com

While the educational prognosis for students with hearing loss has never been as promising as it is now, we continue to have students who are deaf or hard of hearing who have not been identified, or who have not received intervention, prior to school entry. We have all encountered students with two or more years of language delay at kindergarten age. The “Special Considerations” clause and other portions of the IDEA law provide requirements for how school teams should plan the least restrictive environment (LRE) to support effective educational programs for all students who are deaf or hard of hearing. Lost intervention opportunities: Over 25% of infants who failed newborn hearing screening had no documented diagnosis of hearing ability. Although many students with hearing loss receive early identification followed by early intervention, almost 20% of those who were diagnosed with a hearing loss following newborn hearing screening did not receive early intervention. Some children receive cochlear implants as infants or toddlers without the necessary intensive intervention to develop age-appropriate oral language. Other families choose to use sign language without the needed instruction in ASL or connections with the Deaf community to develop fluency, even to meet the vocabulary growth needs of a young child. Still other families ‘want it all’ but are not provided intensive support by skilled interventionists to be able to provide both a rich auditory and visual communication environment. Such missed opportunities for early development can result in a scenario like the following: “We have a student entering kindergarten who received cochlear implants at ages 2 and 3. His oral language development is 2 years delayed. Because he is so delayed, the school team is suggesting we put an interpreter with him in a regular kindergarten class. The family knows a few signs but they want him to listen and speak. How do we figure out the most appropriate program for him?”

Note:

The recent Optimizing Outcomes for Students who are Deaf or Hard of Hearing Educational Service Guidelines (NASDSE, September 2018¹) and the still relevant policy guidance on Deaf Students Education Services (US Department of Education, 1992²) are both valuable resources in helping to answer this question.

Full-Inclusion as a Driver: With the push toward full inclusion in the classroom, including limiting pull-out for specialized instruction, school teams may seek to provide an interpreter in the situation above as a way to address communication needs in the inclusive environment. However, for the varying communication needs of students with hearing loss, an interpreter may be an inappropriate solution, or only a part of a solution, to meet these communication needs. As made clear from the following paragraph², school teams must thoroughly understand a student’s communication needs, how to provide the least restrictive educational environment and the appropriately intensive specialized instruction in light of those communication needs. Meeting the unique communication and related needs of a student who is deaf is a fundamental part of providing a free appropriate public education (FAPE) to the child. Any setting which does not meet the communication and related needs of a child who is deaf, and therefore does not allow for the provision of FAPE, cannot be considered the LRE for that child. A full range of alternative placements as described at 34 CFR 300.551(a) and (b)(1) of the IDEA regulations must be available to the extent necessary to implement each child’s IEP. There are cases when the nature of the disability and the individual child’s needs dictate a specialized setting that provides structured curriculum or special methods of teaching. Just as placement in the regular educational setting is required when it is appropriate for the unique needs of a child who is deaf, so is removal from the regular educational setting required when the child’s needs cannot be met in that setting with the use of supplementary aids and services.” ² To consider these language and communication special factors, the IEP team should ask¹:

• What is the child’s primary language and mode of communication?
• What communicative needs and opportunities does the child have? Can he comprehend what is said in school?
• Does the child have the skills and strategies necessary to meet those communicative needs and take advantage of communication opportunities? (social, self-advocacy)
• Can the child fulfill his or her need to communicate in different settings? (listening in noise, social situations)
• Does the child communicate appropriately and effectively, and if not, why not? (full participant in class?)

Strategies to Obtain Information About Communication Needs Considerations for the school team to answer what communication services are appropriate include:

1. 1. 1. What is his most effective communication mode of communication? The PARC checklists should help to tease this out (PARC Instructional Communication Access Checklist, followed by the appropriate grade level readiness checklist).

1. 1. 2. What is his degree of delay compared to the language level of typical peers? An extensive language assessment must be performed, including listening comprehension. If providing an interpreter is being discussed, then assessment needs to be performed to determine his development level with both languages. Assessments that provide age expectations for learning ASL can be found in this document.

1. 1. 3. Is there reason to believe that there is a cognitive component that is further impairing language growth (nonverbal IQ measure by someone skilled in DHH cognitive assessment)? When provided appropriately intensive services focused on oral language development was rapid progress made? Given intensive ASL instruction, not just interpreter services, does he pick up language at a rapid rate?

1. 1. 4. What intensity of services are required for him to learn language at a pace of more than one month of development for one month of time? The school team can complete this matrix that assists teams in teasing out student communication, skill level, impact of hearing loss on education and resulting service intensity needs. This is a situation where it is highly likely that a full-day inclusive classroom setting is the most restrictive placement for a student to receive FAPE.

1. 1. 5. What service providers are need for him to develop language quickly? A teacher of the deaf/hard of hearing and/or speech clinician with extensive training in oral education of students with hearing loss is likely necessary to reach the eventual goal of age-appropriate language.

    Targeted assessment data is necessary to determine appropriate placement and IEPs goals. Appropriately educating most students with hearing loss requires specialized knowledge, appropriate intensity of DHH  services, accessibility accommodations for effective classroom communication, and contact with DHH peers. Download this Article