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Joseph's Coat: People Teaming in Transdisciplinary Ways

Originally published in Spring 1998 SEE/HEAR newsletter, from TSBVI Outreach Programs
Versión Español de este artículo (Spanish Version)

by Millie Smith, Educational Specialist, TSBVI VI Outreach

In the last five years I have been working with staff and families to support their efforts to team more effectively using the transdisciplinary model. I have not seen or created any perfect transdisciplinary teams during that time. I have seen staff and parents use bits and pieces of the model very effectively to improve programs for students. I am more convinced than ever that transdisciplinary teaming is the best of the service delivery models available to us at the present time. I am equally convinced that the best chance we have of increasing its use is to assure staff and parents that partial implementation is not only realistic, but probably as effective as a more idealistic whole cloth application. The product may be a patchwork conglomeration of pieces supplied by different people at different times, but a coat nevertheless.

The most powerful aspect of the transdisciplinary model, in my opinion, is its emphasis on plugging the expertise of specialists into the day-to-day instruction of students with severe multiple impairments. In this model specialists work in classrooms. They may provide direct instruction or therapy to the student during a regular activity or they may model, coach, and monitor interventions implemented by others. Often they do a combination of both.

Another powerful aspect of the model is that, whenever possible, specialists, instructors, and family members collaborate by meeting together to design instructional activities. More often, they collaborate by leaving each other notes, sharing video tapes, and calling each other on the phone. By collaborating, an effort is made to provide as much consistency in programming as possible across settings and people.

The best approach for implementing transdisciplinary teaming strategies may be to treat the total model like a menu of options. Teams can choose to concentrate their efforts on assessment, IEP development, or instruction. They can do some transdisciplinary work in each category without doing everything that category offers. In order to make informed decisions about where to concentrate efforts, a global understanding of the model is helpful.

Why is transdisciplinary teaming important?

Students with severe impairments receive instruction and services from a variety of different people. Instructors include teachers, teaching assistants, and family members. Special services may include speech, occupational therapy, physical therapy, vision, hearing, and others. Teaming allows specialists, teachers, and families to work together to teach skills in natural contexts where there is more opportunity for frequent practice.

Many specialists have changed the way they serve students with severe impairments in the last ten years. The professional organizations to which most specialists belong have endorsed a service delivery model that emphasizes integration of special services. Integration of special services benefits students with severe impairments in two ways: skills are worked on in natural contexts so that students don't have to try to generalize skills learned in a special setting, and skills are worked on every time the opportunity occurs, whether the specialist is present or not, so that practice is frequent.

In an integrated service delivery model, specialists assess needs, do diagnostic teaching to try out techniques and strategies, model techniques and strategies for other staff and family members, and monitor effectiveness and progress. When the integrated model is transdisciplinary, information is shared among specialists, instructors, and family members. This type of service is intense and dynamic, and highly effective.

How can specialists provide natural contexts and frequent practice?

The traditional service delivery choice for specialists has been direct or consult. For students with severe impairments a wider range of choices is necessary.

 AdvantagesDisadvantages
Direct Pull-out Always one-to-one. Special equipment. Infrequent practice. Context not natural.
Integrated Direct One-to-one or small group. Natural context. Infrequent practice.
Traditional Consult General information shared. Contact very limited
Collaborative Consult Specific information shared with team. Accountability  tied to progress in instructional activities. Requires more time.

Each of these models has a place in transdisciplinary teaming. For instance, direct pull-out may be appropriate for post trauma students or for a student learning a new communication device. Usually, this service is provided for as short a time as possible and a very structured transition period follows pull-out in order to transfer skills to natural contexts. That transition period might be integrated direct service. Integrated direct service is often used by speech/language pathologists teaching communication skills in natural contexts and by OT's and PT's teaching motor skills in natural contexts. Consult is usually provided in conjunction with direct service. Sometimes consult is the only service provided.

What type of consultation tends to be most effective?

Most consultation is general. Specialists write recommendations in their assessment reports. When specialists consult with teachers, they talk to them about their recommendations. Information is shared at a general level. For example: "This student has CVI. Most CVI students like the color red. If you want the student to look at something, try using red. Moving the object slightly in the peripheral field might also help."

Many teachers will remember the student might like red and they will probably make an attempt to select red materials when they can. When the VI teacher checks back with the teacher after this kind of consult, she may hear something like, "Well, I don't notice that red really makes that much difference."

Specific consultation tends to be more effective. In this type of consultation the specialist assesses, recommends, demonstrates in a natural context, and evaluates results. For example: "This student has CVI. CVI students tend to like red. Let's use a red scoop dish at mealtime instead of the cream colored cafeteria tray. If he can see the bowl, it may be easier to get him to scoop. We may need to position the bowl slightly to the left and move it a little at first. When he looks at the bowl, we'll give him a touch prompt to move his hand to the bowl. I'd like to come in at lunch time and try this a few times. Let's keep data on this for two weeks and see if there are more independent attempts to scoop. We may need to do something with the spoon as well."

Traditional consult by itself puts a very heavy burden on classroom teachers and family members to come up with activities and specific modifications for students with extremely intense needs. Transdisciplinary teams use a more dynamic kind of consultation. When consultation is specific and collaborative, it is a highly effective type of service. It also requires more time than traditional consultation. Students with severe multiple impairments tend to be chronically underserved. The average amount of service in Texas for traditional consult appears to me to be about thirty minutes a month. In many places it is less. A more reasonable average for collaborative consultation would be between two and four hours a month. Time demands are more intense when a team is starting a new program. Once the program is established, less time is needed for monitoring and maintenance.

What are the components of transdisciplinary teaming?

Collaborative Assessment

Collaborative assessment occurs when team members identify strengths and needs through shared observations and discussion. One type of collaborative assessment is an arena assessment. Team members meet together to observe a child as one team member (frequently the parent) interacts with the child. Collaborative assessment can also occur during team meetings designed to share and interpret information gathered by individual team members in one-on-one assessments with the child.

Integrated IEP

A team IEP is a document containing goals and objectives developed collaboratively by all team members. Based on family priorities, the group establishes an integrated set of goals (four to six) and two to three objectives per goal (eight to twelve objectives total for the IEP). If an objective relates to a particular related service, that related service provider is identified as responsible for insuring that instruction addressing the objective is implemented and that documentation is collected.

Natural and Frequent Instruction

IEP goals and objectives are taught in activities which occur naturally and frequently at home, in school, and in the community. A team member, usually a classroom teacher, parent, or teaching assistant, is identified as the direct implementor of instruction for a specified activity which may have several IEP objectives imbedded in it. The related service team member responsible for developing a given IEP objective either integrates direct service or consults with the direct implementor of instruction.

Role Release

Team members share knowledge and skills in their particular areas of expertise by role releasing. This is a systematic process whereby one team member trains another to use specific procedures and techniques. The team member who has received this training may then implement a procedure or technique in a given activity when the trainer is not present. The person with specific knowledge is responsible for ensuring that these procedures and techniques are used effectively and appropriately with a given child.  

Documentation

Information is gathered for the purpose of evaluating and refining instruction, reporting student progress on objectives, and sharing information with families and team members.

What assessments are important and how does the team use them?

Students with severe impairments are sensory-motor learners. Assessments of sensory and motor skills are extremely important. Cognition and communication are also important areas. Information about skills in each of these areas may be obtained by specialists in their individual assessments done as part of the Comprehensive Individualized Assessment. Assessment of biobehavioral states of arousal may be very helpful for students with the most profound impairments.

In transdisciplinary teams, specialists collaborate to plan their assessments, to carry out their assessments, and to interpret their assessments. Sometimes arena assessments are done. In this type assessment, one person interacts with the student while other team members observe and ask questions guided by the use of protocols specific to their disciplines. The advantage to this assessment approach is that the student interacts with the persons most familiar with him or her. Performance is likely to be more typical under these conditions. The disadvantage to this approach is that, although total assessment time tends to be less overall, assembling all team members in the same place at the same time can be difficult.

After teams assess, they must share information and come up with program priorities. Instruction is sometimes ineffective for students with severe impairments because too many needs are addressed. Instruction is much more effective if instruction is very focused on four or five priorities. These priorities become goals. Specific needs in each goal area are then identified. These become objectives.

What should a good transdisciplinary IEP contain?

Goal

The team uses assessments to select four to six priorities for the school year. Each of these becomes an annual goal. Some teams write very broad goals; some write more specific goals. Each annual goal should be a statement of what the team believes the child can accomplish within a school year. A broad goal would be: "Student will improve his expressive and receptive communication skills." A more specific annual goal would be: "Student will use ten expressive signs in appropriate contexts." Specific goals work best for students with severe impairments.

Objectives

Objectives are the steps between the child's current level of performance and the annual goal. They state one specific task the child will do, at what level, by when, and what criteria will be used to measure progress. For a broad goal, the team might write: "Student will use five expressive signs during meal time and snacks, independently, eighty percent of the time, measured by teacher observation." For a more specific goal, the team might write: "Student will use name sign to greet nurse when he gets meds, independently, eighty percent of the time, measured by teacher observation." Specific objectives work best for students with severe impairments.

Skill

A skill is the behavior to be learned. The phrase following the word "will" in the objective is usually the skill. In a transdisciplinary IEP, specific discipline skills are imbedded in objectives. An objective might be that a student will assist during meals by opening his mouth for bites. The VI teacher might add that the student will open his mouth for bites when a brightly colored spoon is moved slightly in the right peripheral field of the right eye from a distance of six inches.

Activity

An activity is the context in which the skill will be used. The phrase following the word "during" in the objective is usually an activity. Teams include information about context in objectives to make measurement more meaningful.

Modifications

These are the techniques, technology, and strategies which are necessary to ensure the highest level of participation for the student in the activities of his school day. Federal law requires that these be specified in the IEP. Most school districts include a generic modification page in the ARD papers. Some of these may be useful, but teams have to come up with more specific modifications in order for progress on objectives to occur. A general modification for a special education student might be "shorten assignments." A specific modification for a student with severe impairments might be "use adapted spoon."

Some teams continue to write traditional IEP's in which each team member comes up with his or her own set of goals and objectives. Students with severe impairments can't usually learn as many things as team members can come up with to try to teach them. Also, when team members are trying to teach too many things, they tend to scatter their energy and not teach any one thing very intensely. Teams tend to be more accountable when they focus their attention by writing one collaborative IEP. In this approach special skills are integrated into short-term objectives.

Student: Catherine 
Date Accepted by ARD Committee: 5/1/95 
Annual Goal: Will improve functional use of objects*

Short-Term ObjectivesEval. Method
Observation Formal testing
Criteria 
(Accuracy Level)
TargetedPresent  CompetenciesMet  Y/N
1. Will visually locate a desired object in an adapted environment during rec/leisure time. 
Direct Implementor(s): Classroom Teacher/TA 
Support Staff Responsible: VI Teacher 
Begin Date: 8/95 End Date: 5/96
Observation Independent Frequent physicalmanipulation  
2. Will look at an object presented by a caregiver to request continuation of an activity during grooming activities. 
Direct Implementor(s): Teaching Asst./Mother 
Support Staff Responsible: VI Teacher 
Begin Date: 8/95 End Date: 5/96
Observation 90% 20%  

* Sensory skills are integrated in short-term objects.

Sometimes a column for modifications is added. The example given in objective number one might include: Modifications: Den/Little Room

How is instruction provided in natural contexts by the whole team?

routine is a teaching strategy that focuses the team's efforts on specific activities that occur with high frequency in the student's schedule. Routines are designed to teach specific special skills to students who require consistency and repetition in order to learn. As skills are learned, the student's level of participation in activities increases. Any activity can be developed into a routine when team members plan what they will teach and adapt for a given student. An activity is not a routine unless it meets the following criteria:

  • There is a clear signal to the student that the activity is starting.
  • The steps of the activity occur in the same sequence every time.
  • Each step is done in the same way each time (same materials, same person, same place).
  • Modifications and techniques provided by specialists are implemented exactly as directed.
  • The minimum amount of assistance is provided in order to allow students to do as much as they possibly can.
  • The pacing of instruction is precisely maintained until the activity is finished (no side conversations, going off to get something you forgot, or adding new or different steps that won't happen the next time the activity is done).
  • There is a clear signal to the student that the activity is finished.

Why are routines worth the trouble?

The power of a routine is the precise planning of what the student will do and how he will do it on each step of the routine. Many students are able to learn new skills and participate at higher levels when this strategy is used because they need the following things that routines provide:

  • Predictability: "I know what is going to happen from start to finish."
  • Consistency: "I know what I am supposed to do."
  • Anticipation: "When you do that, I know what to get ready for."
  • Practice: "I remember what I did last time and I can try to do more this time."

Students with severe impairments rarely do every step of a routine independently, but they are afforded the dignity of doing everything that they are cognitively and physically capable of doing.

What do routines look like?

Mealtime is a good activity to develop into a routine because it usually happens three times a day. Practice opportunities are frequent. The team's plan might look something like this:

  1. Get spoon from calendar box to begin activity. 
    Target skill: Tactual exploration of objects in calendar to recognize spoon. 
    Person responsible: VI teacher. 
    Strategy: VI teacher demonstrates shadowing technique to TA to decrease student's aversion to hand over hand manipulation.
  2. Take spoon to eating area. 
    Target skill: Maintain grasp, intentional release. 
    Person responsible: OT 
    Strategy: OT demonstrates use of "buncher" for grasp and pressure point technique for release to T.A. who will implement instruction.
  3. Give spoon to adult to request meal. 
    Target skill: Use object to request. 
    Person responsible: Speech/Language Pathologist (SLP) 
    Strategy: SLP demonstrates touch cueing technique to TA who will implement instruction.
  4. Eat. 
    Target skill: Manipulate spoon for scooping. 
    Person responsible: OT 
    Strategy: OT provides adaptive equipment and demonstrates technique to TA who will implement instruction.
  5. Put spoon in washtub at dish window to end activity. 
    Target skill: Maintain grasp, intentional placement. 
    Person responsible: OT and VI teacher. 
    Strategy: OT demonstrates arm support technique to TA who will implement instruction. VI teacher provides visual enhancement of target.

How do specialists help other team members address needs in their areas?

Transdisciplinary teams use a procedure called role release. Any team member having special skills may train any other team member needing those skills. The need for a team member to have certain skills is usually dictated by scheduling. Specialists cannot always be present when a skill needs to be taught in a natural context. Specialists have certain responsibilities. They cannot release their role to another until that person demonstrates that she can perform without prompts. The specialist must then monitor the activity to ensure that the released procedure is performed as taught.

The role release process usually consists of the following steps:

  • The specialist and other team members share information related to the need.
  • The specialist teaches the designated person(s) a specific procedure to address the need.
  • The specialist supervises the implementation of the procedure and makes adjustments as needed.

Communication among team members is essential in the role release process. Members must be able to ask questions, seek help, and respond quickly. Here are some tips for increasing and maintaining contact:

  • Schedule time to observe activities.
  • Review videotapes of activities between observations.
  • Attend team meetings.
  • Post notes to team members on a special bulletin board.
  • Keep documentation in an area where all team members can access it.
  • Keep a school/home notebook.

How do teams document student progress?

There are two things to remember about documentation:

  • It is important because team members have to know what's working and what isn't working
    Students with severe impairments don't fail to make progress, but teams may fail to provide the necessary level of support in order for progress to occur.
  • It must be easy to gather so that it does not take time away from teaching and attention away from the student.

Different kinds of documentation are appropriate in different situations. Here are some common types:

  • Frequency Tally Method: A mark is entered each time the designated behavior occurs. The event may be a student behavior (signed "more") or the event may be a teacher behavior (touch prompt given).
  • Annotation: The teacher may write a comment describing the student's performance on a given trial.
  • Plus/Minus: The target skill occurred or did not occur.
  • Level of Prompt: A letter is entered to indicate the highest level of prompting given during the trial (hand-over-hand, touch prompt, verbal prompt, independent).

Be consistent. Decide which method fits best for a given situation and stick with that method. The whole team must use the same methods in the same situations.

Routine and data sheet sample.

An example of a routine with annotative documentation is included on page thirteen (Routine and Data Sheet). Notice that documentation is kept only if the step is one in which an IEP objective is addressed. If there is no number in the IEP column, no documentation is kept.

How do specialists document service time?

Parents typically do not demonstrate a high degree of confidence in consultative services. Some demand direct service because they fear that their children's needs will not be addressed adequately in a consultative model. This can be counterproductive for students with severe impairments who need frequent intervention in natural contexts. One way to assure parents and other team members that real help is being provided is to share documentation.

Most specialists are used to keeping records of some sort for their supervisors. These may consist of student contact logs or observation summary forms. An example of a contact sheet which emphasizes the team approach is shown on page fourteen (Sample of a Collaborative Service Delivery Contact Sheet).

Routine and Data Sheet 
Student: 
Catherine 
Routine: Hair Care Time 
Implementor: Classroom Teacher, TA 
Time: 9:00 a.m. 
Location: Classroom

Routine StepsAdaptation/ModificationIEPComments/Data
1. Travel to hair drying area. Chair pushed to hair drying area. Looks at caregiver to signal readiness.    
2. Visually locate hair dryer. Caregiver wears dark-colored smock against which bright yellow hair dryer is held. Use object lighting, if necessary. #1 Looked at hair dryer on third  of three presentations after light enhancement provided.
3. Turn desired part of head/ face to airflow as caregiver holds dryer.      
4. Visually locate hair dryer each time care-giver turns it off to request continuation of activity. See #2 #1 Looked at hair dryer on second and fourth - presentations no light.
5. Visually locate hair-brush held by teacher. Caregiver holds bright red  hairbrush against smock. Use object lighting, if necessary. #1 Did not respond, four presenta tions with light (contrast may not be adequate, try different  colored brush.)
6. Cooperate while hair is brushed by caregiver.      
7. Travel to area of next activity. Looks at caregiver to signal  readiness for lift. Chair is pushed to next area.    

Documentation Date: 10/7/95 Documentor's Signature: (VI Teacher)

Sample of a Collaborative Service Delivery Contact Sheet

Student: Catherine 
Service Provider: M. Smith, VI Teacher

DateTime InTime OutStaff PresentService Delivered
2/7 9:30  10:00 T. Johnson, Linda Evaluated visual responses (JVE)
2/11 2:00 2:30 Linda Evaluated visual responses (JVE)
2/18 3:00 3:30 T. Johnson, Linda & Parent Wrote activity routine
2/22 9:30 10:00 Linda Role release hair dryer procedure
3/12 9:30 10:00 Linda Observed & modified hair routine

Administrator's Signature: _______________________

Conclusion

Remember Joseph's coat. It was made a piece at a time. It might be a good idea to remember that Joseph probably wore some other garments as well. If your team ends up with a vest or a really good pair of socks, success is just as sweet. Good luck!

Below are a list of website resources related to various types of progressive vision loss or progressive eye conditions.

Adrenoleukodystrophy (ALD)

Batten Disease

Best Disease

Choroideremia

Cone Dystrophy

Cone-Rod Dystrophy

Glaucoma

Leber's Congenital Amaurosis

Leber's Hereditary Optic Neuropathy

Retinitis Pigmentosa

Retinoblastoma

Retinoschisis

Stargardt Syndrome

Usher Syndrome


 

Adrenoleukodystrophy (ALD)

United Leukodystrophy Association

http://ulf.org/adrenoleukodystrophy

ALD Database

http://www.x-ald.nl/clinical-diagnosis/facts-on-x-linked-adrenoleukodystrophy/


Batten

Batten Disease Support and Research Association

http://bdsra.org/

http://bdsra.org/what-is-batten-disease/

Beyond Batten Disease Foundation

http://beyondbatten.org/understanding-batten/what-is-batten/

Noah’s Hope

http://www.noahshope.com/about.php

U.S. National Library of Medicine

https://ghr.nlm.nih.gov/condition/juvenile-batten-disease

Batten Disease: The Story of Jake (YouTube)

https://www.youtube.com/watch?v=mJQgIdhgprc


Best Disease

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/best-disease/

Royal National Institute of Blind People

http://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/best-disease-vitelliform-macular-degeneration

Macular Disease Foundation Australia

http://www.mdfoundation.com.au/resources/MDFA_VitelliformMacularDystrophy-Bests_Factsheet_web.pdf

MedScape

http://emedicine.medscape.com/article/1227128-overview

Facebook

https://www.facebook.com/beatthebest/


Choroideremia

Choroidermia Research Foundation

http://curechm.org/

http://curechm.org/what-is-choroideremia/

Fighting Blindness

http://www.blindness.org/eye-conditions/choroideremia


Cone Dystrophy

The cone dysfunction syndromes

The National Center for Biotechnical Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1771989/

National Organization of Rare Diseases (NORD)

https://rarediseases.org/rare-diseases/cone-dystrophy/


Cone-Rod Dystrophy

Genetic and Rare Diseases Information Center (GARD)

https://rarediseases.info.nih.gov/diseases/10790/cone-rod-dystrophy

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/cone-rod-dystrophies/

Orphanet Journal of Rare Diseases

Cone rod dystrophies

https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-2-7


Glaucoma

American Academy of Pediatric Ophthalmology and Strabismus

https://www.aapos.org/terms/conditions/55

EyeWiki

http://eyewiki.aao.org/Glaucoma,_Congenital_Or_Infantile

American Academy of Ophthalmology

Glaucoma: Definitions and Classification

https://www.aao.org/pediatric-center-detail/glaucoma-definitions-classification

Glaucoma Research Center

Childhood Glaucoma: Parents are the First Line of Defense

http://www.glaucoma.org/glaucoma/childhood-glaucoma-parents-are-first-line-of-defense.php

Digital Journal of Ophthalmology

Congenital Glaucoma (childhood)  

http://www.djo.harvard.edu/site.php?url=/patients/pi/416

Bright Focus Foundation

Childhood Glaucoma

http://www.brightfocus.org/glaucoma/article/childhood-glaucoma


Leber’s Congenital Amaurosis

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/lebers-congenital-amaurosis-lca/

Scottish Sensory Centre

http://www.ssc.education.ed.ac.uk/resources/vi&multi/eyeconds/LebCA.html


Leber’s Hereditary Optic Neuropathy

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/lebers-hereditary-optic-neuropathy/ 

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/search/site/lebers

Patient

http://patient.info/doctor/lebers-optic-atrophy

NIH U.S. National Library of Medicine

https://ghr.nlm.nih.gov/condition/leber-hereditary-optic-neuropathy#genes


Retinitis Pigmentosa

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/eye-health/eye-conditions/retinitis-pigmentosa

YouTube

Retinitis Pigmentosa - CRASH! Medical Review Series  https://www.youtube.com/watch?v=7xxkyQkW_C8

National Eye Institute

https://nei.nih.gov/health/pigmentosa/pigmentosa_facts

National Organization for Rare Disorders

https://rarediseases.org/rare-diseases/retinitis-pigmentosa/


Retinoblastoma

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers-insight-magazine-insight-features

National Organization for Rare Disorders (NORD)

https://rarediseases.org/rare-diseases/retinoblastoma/

American Cancer Society

http://www.cancer.org/cancer/retinoblastoma/detailedguide/retinoblastoma-what-is-retinoblastoma

New York Eye Cancer Center

https://eyecancer.com/eye-cancer/conditions/retinal-tumors/retinoblastoma/


Retinoschisis

Fighting Blindness

http://www.blindness.org/eye-conditions/retinoschisis

https://www.asrs.org/patients/retinal-diseases/14/congenital-x-linked-retinoschisis

NORD National Organization for Rare Diseases

https://rarediseases.org/rare-diseases/retinoschisis/

U.S. National Library of Science

https://ghr.nlm.nih.gov/condition/x-linked-juvenile-retinoschisis


Stargardt Disease

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/stargardts-disease/

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/stargardt-disease

http://www.rnib.org.uk/nb-online/stargardts-disease-update

American Macular Degeneration Foundation (AMDF)

https://www.macular.org/stargardt-disease

Facebook Pages for Stargardt

https://stargardt.wordpress.com/2011/11/15/stargardts-groups-and-pages-on-facebook/

Contact a Family website

http://www.cafamily.org.uk/medical-information/conditions/s/stargardt-macular-dystrophy/


Usher Syndrome

American Speech, Language, and Hearing Association

http://www.asha.org/Articles/Understanding-Usher-Syndrome/

Boys’ Town National Research Hospital

https://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

Usher Syndrome Coalition

http://www.usher-syndrome.org/

Medicine Net

http://www.medicinenet.com/usher_syndrome/article.htm

 

 

Video of student in the HOPSA dress

When a student is visually impaired or deafblind with significant cognitive and physical disabilities (especially if the condition is congenital) unique instructional strategies must be used to systematically teach what other children learn incidentally. One of these strategies is known as Active Learning, an approach developed by Dr. Lilli Nielsen. This approach uses specific equipment and techniques to help students from birth thru high school age functioning developmentally at ages younger than 4 years or 48 months. This approach focuses on creating environments for the learner to develop foundational concepts and skills in all areas. It can be used to provide instruction at an appropriate learning level in both the standard curriculum and the expanded core curriculum for these students with the most profound disabilities.

Some teachers and administrators have questioned the use of Active Learning because it looks very different from typical instructional approaches used in most educational settings. It looks like “play” to many people. However, very specific learning goals and prerequisite skills are the focus of a true Active Learning approach.

In a guidance letter from Office of Special Education and Rehabilitation Services, Department of Education (November, 2015) the appropriateness of a focus on prerequisite skills aligned to the standard (or general) curriculum was discussed. Below are pertinent excerpts from this document related to these students:

Based on the interpretation of “general education curriculum” set forth in this letter, we expect annual IEP goals to be aligned with State academic content standards for the grade in which a child is enrolled. This alignment, however, must guide but not replace the individualized decision-making required in the IEP process.5 In fact, the IDEA’s focus on the individual needs of each child with a disability is an essential consideration when IEP Teams are writing annual goals that are aligned with State academic content standards for the grade in which a child is enrolled so that the child can advance appropriately toward attaining those goals during the annual period covered by the IEP.

The Department recognizes that there is a very small number of children with the most significant cognitive disabilities whose performance must be measured against alternate academic achievement standards, as permitted in 34 CFR §200.1(d) and §300.160(c). ….The standards must be clearly related to grade-level content, although they may be restricted in scope or complexity or take the form of introductory or pre-requisite skills.


Excerpt from Pages 4-5 of a guidance document from OSERS on alignment to the standard curriculum, November 2015

Texas School for the Blind & Visually Impaired Outreach Programs has developed a process for aligning instruction for these special learners that utilizes Texas Early Learning Pathways, Pre-K Guidelines, Essence Statements, and Texas Essential Knowledge and Skills. This is done by utilizing the Functional Scheme assessment and other assessment tools to determine the learner’s current developmental levels prior to developing the PLAAFP and setting priority areas goals and objectives. For learners at this level, many if not all of these goals are focused on pre-requisite skills.

We invite you to learn more about Active Learning and utilizing this approach at Active Learning Space (http://www.activelearningspace.org/active-learning-and-general-education), a special website developed by Penrickton Center for Blind Children, Perkins School for the Blind and Texas School for the Blind and Visually Impaired. You may also want to view a webinar about Active Learning, alignment and instruction which can be found at http://library.tsbvi.edu/Player/12992.

This magnifier unit is designed to pique the interest of the kindergarten-junior high student with low vision, teach concepts which may be incomplete due to the sensory deficit, and provide extended activities in an effort to challenge children and expand the transfer of magnifier skills.  The magnifier(s) recommended for these activities include any combination of a hand held magnifier (preferred), stand magnifier, or microscopic lenses.  The ultimate goal of magnifier use is increase the student’s access to the wide array of visual materials, including objects, pictures, and print.

Fun with Magnifiers is divided into 8 stand-alone units that can be taught by teachers of students with visual impairments, classroom teachers, and/or parents.  Since some children are sensitive to being the only child using a magnifier in their classrooms, these units might be more successful if arranged in a learning center for all classmates to use.  Other alternatives might involve having the student present a completed unit project of his/her choice to the class or to a class of younger students during a science lesson.  Each unit includes optional activities that are designed to provide enrichment and higher order cognitive skills.  Please note that some of the units involve using print books/materials to help classify objects.  The intention of using actual books (rather than a website) is to provide further experience with print size, contrast, color, and photos.  

Download Fun with Magnifiers (Word or PDF)

New concern arises from:

  1. Full Independent Evaluation processor or
  2. Expressed concern by staff or
  3. Teacher

Step 1

The school nurse conducts hearing screening. Was the concern about the hearing loss validated by the hearing screening?

If YES or if COULD NOT TEST

Staff requests ARD and collects information:

  1. ARDPreparationListWhenHearingLossisSuspected(AppendixB-2)
  2. TeamconductsInformalAuditorySkillsInventory(AppendixC-2).
  3. TeacherofDeaf&HardofHearingiscontacted(TEAQ&A–AppendixE)

If NO:

Hearing loss is ruled out. No additional information is needed at this time.

Step 2

At ARD to consider new assessment:

  1. Team discusses the need for audiological and communication
  2. Team develops Audiological Testing Plan with support from the TD&HH
  3. Obtain parents’ permission for the additional assessment.
  4. TVI collaborates with the TD&HH to complete the communication assessment making sure to address the impact of the vision loss on the child’s access to their preferred communication form and amends the FVE/LMA as needed. Reference these articles:
  • Issues Regarding the Assessment of Vision Loss in Regards to Sign Language, Fingerspelling, Speechreading and Cued Speech
  • Making Sure the LMA, FVE and Communication Assessments Address Dual Sensory Loss

Step 3

All assessment is completed. ARD committee receives all results.

If YES:

The ARD Committee:

  1. Considers educational need and deafblind eligibility. (Deafblind Checklist). Questions about identifying the student as deafblind should be directed to Regional Deafblind Specialist or to the Texas Deafblind Project.
  2. Amends related services, accommodations, adaptations and modifications as needed (see Documenting Adaptations, Accommodations, Modifications, and Related Services in the IEP for the Student with Deaf-Blindness)
  3. Amends IEP goals and objectives as needed. (Reference the IEP Quality Indicators for Students with Deafblindness)
  4. Paperwork is completed by designated school to add student to Texas Deafblind Child Count and submitted to Regional Deafblind Specialist.

If NO:

Hearing loss is ruled out. If there is still concern, the audiologist will make a referral for medical follow-up and/or consider testing for CAPD.  Otherwise, no additional information is needed at this time, but results must be reported back to ARD committee.

New concern arises from:

  1. Full Independent Evaluation process or
  2. Expressed concern by staff or parents about possible vision loss or
  3. New medical information or
  4. Teacher

Step 1

School nurse conducts vision screening. Was the concern about the vision loss validated? NOTE: If Vision Loss Quick Check indicates possible field loss, current screening may not address this type of loss – Continue to step 3.

If YES or Could Not Test, Staff requests ARD and collects information:

  1. Preparation for ARD When Vision Loss is Suspected (Appendix B-1)
  2. Team conducts Informal Vision Skills Inventory (Appendix C-1).
  3. Teacher of the Visually Impaired (TVI) is contacted (TEA Q & A – Appendix E)

If NO:

Vision loss is ruled out. No additional information is needed at this time.

Step 2

At ARD to consider new assessment:

  1. TVI is invited to ARD
    • Team requests VI eligibility information including but not limited to: eye doctor’s report, FVE and
  2. Team develops Vision Testing Plan before eye doctor’s visit with informal support from the Teacher of the Visually Impaired–Appendix D-1
    • Obtain parents’ permission for additional assessment
  3. Following receipt of eye doctor’s report, TVI and TD&HH collaborate to complete the FVE/LMA and to review the Communication Assessment for needed

(Note: In completing the FVE/LMA and reviewing the Communication Assessment it must be determined if vision loss impacts access to the child’s preferred communication form in any educational environments.) Reference the following articles:

  1. Issues Regarding the Assessment of Vision Loss in Regard to Sign Language, Fingerspelling, Speechreading, and CuedSpeech–AppendixF
  2. Making Sure the LMA, FVE and Communication Assessments Address Dual Sensory Loss – Appendix G

Step 3

All assessment is completed. ARD committee receives all results. Is vision loss confirmed?

If YES:

ARD committee:

  1. Considers educational need and deafblind (Deafblind Checklist Appendix Questions about identifying the student as deafblind should be directed to Regional Deafblind Specialist or to the Texas Deafblind Project
  2. Amends related services, accommodations, adaptations and modifications as needed (see Documenting Adaptations, Accommodations, Modifications, and Related Services in the IEP for the Student with Deaf-Blindness)
  3. Amends IEP goals and as (Reference the IEP Quality Indicators for Students with Deafblindness)
  4. Paperwork completed by designated school to add student to Texas Deafblind Child Count

If NO:

Vision loss is ruled out. If there is still concern, the ophthalmologist will make a referral for medical follow-up. Otherwise, no additional information is needed at this time, but results must be reported back to ARD committee.

This document is designed to help educational teams develop appropriate IEPs for students with DeafBlindness.  Indicators not present may indicate a training need for the team.  The presence of these indicators demonstrates a well-designed IEP in areas related specifically to the impact of DeafbBindness.  Other factors indicating a quality IEP in general are not covered here.

There seems to be some confusion around the topic of determining a student’s educational eligibility for DeafBlindness. It is a fascinating subject and one that we love to talk about here at the Texas DeafBlind Project. We have tried to assemble some common (and not so common) questions to help alleviate confusion and allow everyone a better night’s sleep.

Question 1: What is the eligibility definition for DeafBlindness* in the Commissioner’s/SBOE Rules Eligibility Criteria?

§89.1040. Eligibility Criteria.

 2)  DeafBlindness. A student with DeafBlindness is one who has been determined to meet the criteria for DeafBlindness as stated in 34 CFR, §300.8(c)(2). In meeting the criteria stated in 34 CFR, §300.8(c)(2), a student with DeafBlindness is one who, based on the evaluations specified in subsections (c)(3) and (c)(12) of this section:

(A) meets the eligibility criteria for auditory impairment specified in subsection (c)(3) of this section and visual impairment specified in subsection (c)(12) of this section;

(B)  meets the eligibility criteria for a student with a visual impairment and has a suspected hearing loss that cannot be demonstrated conclusively, but a speech/language therapist, a certified speech and language therapist, or a licensed speech language pathologist indicates there is no speech at an age when speech would normally be expected;

(C)  has documented hearing and visual losses that, if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely affects the student's educational performance; or

(D)  has a documented medical diagnosis progressive medical condition that will result in concomitant hearing and visual losses that, without special education intervention, will adversely affect the student's educational performance.

Question 2: What is the benefit for the IEP committee to assign a DeafBlind label to a student?

Answer(s):

  • A student with dual sensory impairment (i.e. DeafBlindness) can have very different educational needs than those with a single sensory impairment (AI or VI). It will be important for her team to think about questions of access from a combined sensory loss, or DeafBlind, perspective. Staff who are trained in a single sensory area may need additional support specific to DeafBlind educational assessment and programming strategies in order to develop an appropriate IEP.

Typical educational approaches for students with AI labels involve the use of vision as a compensatory strategy. For those students with a VI label, compensatory approaches involve the use of hearing.  Emphasizing the DeafBlind label can help to more clearly define the uniqueness of the disability.

  • There are specific resources and unique services for students with DeafBlindness and their families. Without the DeafBlind label, teams and families may not be made aware of information about the Texas DeafBlind Outreach Project, DeafBlind services through HHSC and the TWC, the National Center on DeafBlindness, the DBMD Waiver, Helen Keller National Center, or iCanConnect. – See PDF Download Resource Guide for Parents of Students with DeafBlindness or download it as a Word file.
  • Some families or students may identify as Deaf/hard of hearing and not as a person with DeafBlindness. For example, a person with Usher syndrome may identify strongly with the Deaf community and culture. They may lack important information about their visual impairment and its implications.  While it is very important to be sensitive to these issues, the DeafBlind label can help the education team identify resources and strategies around counseling, braille instruction, tactile sign, Orientation and Mobility, and other supports that may be beneficial to the student and family.
  • While either DB or AI/VI are acceptable, it is recommended that DeafBlind (DB) be selected and then ranked in the primary positionsee question 5.

Question 3: Does the DeafBlind label qualify a student for additional services that the AI/VI label does not?

  • Generally speaking, a student qualifies for the same services, regardless of whether they have an AI/VI label or a DB label. All students with both VI and AI eligibility will be counted on the DeafBlind Child Count and can access the support of the TX Deafblind Project.

Question 4:  Why is the student with mild dual sensory impairments considered DeafBlind?

*A student with DeafBlindness is one who:

(C) “has documented hearing and visual losses that, if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely affects the student's educational performance;"

Answers(s)

  • We affectionately call this “The third way”.  The question to consider is whether the combined effects of the mild vision and hearing losses impact educational performance.  Do these combined sensory deficits affect the student's ability to gather information and participate in the instructional environment? If so, to address this problem, the child may need accommodations, special technology, or unique strategies that require professionals with a background in dual sensory loss to participate in assessment and program development.
  • If a student qualifies as DeafBlind under the eligibility criteria section C, a Teacher of Students with Visual Impairments (TVI), as well as a Teacher of the Deaf and Hard of Hearing (TDHH), will participate in the student's ARD.  This means the professionals with training in these types of sensory losses will be involved in programming for this student. Among other things, they are needed to address optical and amplification devices, accommodations that assure appropriate access to information, and the development of IEP objectives, which address self-advocacy and effective use of sensory devices.  They will need to consider the combined impact of the mild sensory losses when designing programming.

Question 5: Why is it recommended that DB always be ranked as the primary disability?

Answer(s)

There are two separate counts that students with DeafBlindness should be reported on each year.

The first is the US Department of Education, IDEA count. The second is the DeafBlind Child Count that is collected by the Office of Special Education Programs (OSEP).

IDEA Count:

  • The US Department of Education (ED) is required by the Individuals with Disabilities Education Act (IDEA) to report to Congress annually on the number of children receiving special education, by disability category, for ages 3-21 years. The count must be unduplicated - that is, children can only be counted in one category, regardless of the number of disabilities they experience.

http://www.afb.org/Section.asp?SectionID=3&TopicID=138&DocumentID=3350

For this count, the primary ranking is the only one reported to the federal government for IDEA data collection. Therefore, unless the Deafblind label is stated as the primary disability it will not be recorded on this count. This information is used in policy development. Since DeafBlindness is the rarest of the low incidence groups, it is important to be sure they are not missed. Policy makers may not see the separate DeafBlind Child Count that OSEP collects from the state DeafBlind Projects. 

DeafBlind Child Count:

  • The Texas Education Agency (TEA), Division of Special Education, is required to report annually on individuals, 0-21 years of age, who are DeafBlind in Texas. This information, collected by state DeafBlind Projects, informs the National DeafBlind Child Count recorded by OSEP.
  • The DeafBlind Child Count collects different information than the IDEA count, and provides information that is used for regional and statewide planning to develop funding and appropriate services for infants, children, and youth who are DeafBlind.

Students with both the DeafbBind and the combined AI/VI eligibility labels are reported on the DeafBlind Child Count. Using either the AI/VI as primary/secondary (i.e. first and second) or DeafBlind as primary is best practice. There is no impact on funding or services either way.

Question 6:  What information on community and state service resources for DeafBlindness is provided for the parents and student?

Due to the low incidence of DeafBlindness, information is often not included in the typical resource packets distributed by school professionals regarding vision loss and deafness.

  • It should be noted that there are specific resources and unique services for students with DeafBlindness and their families. For instance, information about the Texas DeafBlind Outreach Project, DeafBlind services through HHSC and TWC, the National Center on DeafBlindness, the DBMD Waiver, Helen Keller National Center, or iCanConnect. The Texas DeafBlind Project has assembled a resource guide for parents and students with DeafBlindness – See Resource Guide for Parents of Students with DeafBlindness.

Question 7: If the Texas DeafBlind Child Count is due before the FIE process of assessing vision and hearing is complete, should the child be reported?

  • Yes!  Students for whom vision and hearing loss are suspected, but who have not been tested, may be reported on the DeafBlind Child Count and remain there for one year. During that year, evaluation of their sensory functioning should be completed. Technical assistance related to appropriate assessment techniques is available from the Texas DeafBlind Project at the Texas School for the Blind and Visually Impaired”.

Instructions for completing the DeafBlind Child Count

Here are some resources to help you learn more about driving with low vision using bioptics.  This resource list was developed for a collaborative workshop from Short-term and Outreach Programs for parent and students with low vision called, In the Driver's Seat, which is offered annually at Texas School for the Blind & Visually Impaired.

Books

Peli, E. & Peli, D. (2002). Driving with Confidence: A Practical Guide to Driving with Low Vision.  Singapore: World Scientific Publishing Co.

Region 4 Education Service Center. (2013). 2nd ed. Program in Low Vision Therapy. Houston, TX: Region 4 Education Solutions (Chapter 10, Driving)

Corn, A.L. & Rosenblum, P. (2000). Finding Wheels: A Curriculum for Nondrivers With Visual Impairments for Gaining Control of Transportation Needs. Austin, TX: Pro-Ed Publishers. (Unit 7, Bioptic Wheels: Low Vision Driving)

Websites                                                      

Bioptic Driving Network (BD) http://www.biopticdriving.org/countries/USA.htm with the American Optometric Association

Bioptic Driving USA (Drs. Richard and Laura Windsor) http://www.biopticdrivingusa.com/publications/

The Low Vision Gateway http://www.lowvision.org/Default.htm

Webinar

Steps to Becoming a Bioptic Driver presented by Chuck Huss, April 4, 2011. http://www.youtube.com/watch?v=S7Aat58FrsA&list=UU5OAT-O6MFn-iNAsNH4uwDw&index=1&feature=plcp

Organizations

Strowmatt Driver Rehabilitation Services (Texas Education Agency licensed driving school member) http://www.driverrehabservices.com/              

The Association for Driver Rehabilitation Specialists (ADED) http://www.driver-ed.org/

NOAH (National Organization for Albinism and Hypopigmentation http://www.albinism.org/publications/driving.html

Handouts

Huss, Chuck, 2014. Step-by-Step Guide to Reinforcing Pre-Driver Readiness Skills with Novice Bioptic Driving Candidates. Handout from TSBVI Outreach Programs workshop, In the Driver's Seat.  Download this document in regular print (Word or PDF) or in large print (Word or PDF).