Individuals with Disabilities Service: Overview with emphasis on the NEEI/Perkins Low Vision Clinic Barry S Kran, OD, FAAO...
Introduction <ul><li>“ not blindness, but the attitude of the seeing to the blind is the hardest burden to bear” </li></ul...
Who Are Our Patients? <ul><li>100,000 children in Mass with special needs including CP  (UCP Metro-Boston) </li></ul><ul><...
Babies Count: Birth to 3 Preliminary Data <ul><li>14 States, n = 1553 </li></ul><ul><li>Demographics </li></ul><ul><ul><li...
Babies Count:  Birth to 3 <ul><li>Multiple disability risk at time of referral to specialized agency </li></ul><ul><ul><li...
Babies Count:  Birth to 3 <ul><li>Most prevalent visual conditions </li></ul><ul><ul><li>Cortical visual impairment 24% </...
Babies Count:  Birth to 3 <ul><li>Most prevalent disabling conditions were </li></ul><ul><ul><li>Syndromes associated with...
Babies Count:  Birth to 3 <ul><li>Most prevalent health/medical conditions were </li></ul><ul><ul><li>Orthopedic impairmen...
Summary of Data from elsewhere <ul><li>Depending upon one’s definition.. </li></ul><ul><ul><li>MR is seen in 25 – 80 % of ...
Current Sites of IDS <ul><li>Perkins School for the Blind -  Watertown </li></ul><ul><li>Cotting School -  Lexington </li>...
Vision Continuum 20/20 Visual Acuity Full Visual Fields Totally Blind NLP Legally Blind 20/200 and/or visual field of 20° ...
NEEI/Perkins Low Vision Clinic
Trans-disciplinary Approach <ul><li>Sequential vs. simultaneous data collection and collaboration with a unified report </...
Exam Room <ul><li>Increased illumination </li></ul><ul><li>Multiple lighting controls </li></ul><ul><li>Comfortable  seati...
Components of a Functional Low Vision Exam <ul><li>Visual acuity </li></ul><ul><li>Refraction </li></ul><ul><li>Visual fie...
Cases <ul><li>WW  </li></ul><ul><ul><li>Example of collaborative approach; multiple evaluators – H Vanguard, Children’s, P...
Cases <ul><li>WW continued </li></ul><ul><ul><ul><li>What we added to process: </li></ul></ul></ul><ul><ul><ul><ul><li>Bif...
Visual Fields <ul><li>Modified Confrontation VF </li></ul><ul><ul><li>Provides general information </li></ul></ul><ul><ul>...
Cases <ul><li>WW continued </li></ul><ul><ul><li>Discussion point </li></ul></ul><ul><ul><ul><li>Bifocals with inferior fi...
Cases <ul><li>20 yr old female from the community with CP whose parents report has never had a successful acuity measureme...
Visual Acuity <ul><li>LEA Symbols </li></ul><ul><li>Symbols are easily recognized </li></ul><ul><li>Crowded or Single Symb...
Cases <ul><li>14 yo boy who came to Perkins from NY with minimal visual information, except that the educational reports s...
Case example of Functional Acuities
Craniosynostosis Case –Pfeiffer Syndrome Acrocephalosyndactly Syndromes (ACS) <ul><li>~3 yo boy when first seen at Perkins...
Motility
Motility
Ocular Health - external <ul><li>5x illuminated hand magnifier </li></ul><ul><li>Hand-held slit lamp </li></ul><ul><li>Ton...
Cases <ul><li>Unresolved Case 1 </li></ul><ul><ul><li>11 yo deaf female, adopted six years ago </li></ul></ul><ul><ul><li>...
Cases <ul><li>Unresolved Case 2 </li></ul><ul><li>Born 1986, student at Perkins, rarely seen at our clinic.  Followed by a...
Cases <ul><li>Unresolved Case 2 </li></ul><ul><li>Deaf, spastic quadriplegia </li></ul><ul><li>Implications </li></ul><ul>...
Conclusion of the Evaluation <ul><li>Make the connection between the manipulation of the testing environment to home, clas...
Questions <ul><li>You can reach us at: </li></ul><ul><li>Barry Kran </li></ul><ul><li>[email_address] </li></ul><ul><li>Da...
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Individuals with Disabilities Service: Overview with emphasis on the NEEI/Perkins Low Vision Clinic

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Individuals with Disabilities Service: Overview with emphasis on the NEEI/Perkins Low Vision Clinic

  1. 1. Individuals with Disabilities Service: Overview with emphasis on the NEEI/Perkins Low Vision Clinic Barry S Kran, OD, FAAO Associate Professor, NEWENCO Chief, Individuals with Disabilities Service Optometric Director, NEEI/Perkins Low Vision Clinic Darick W Wright, COMS, CLVS Adjunct Faculty NEWENCO and UMASS Boston Clinic Coordinator, NEEI/Perkins Low Vision Clinic Perkins School for the Blind, Watertown, MA
  2. 2. Introduction <ul><li>“ not blindness, but the attitude of the seeing to the blind is the hardest burden to bear” </li></ul><ul><ul><ul><li>Helen Keller </li></ul></ul></ul><ul><li>“ They’re retarded, why do they need glasses?” </li></ul><ul><ul><ul><li>A unit director at the Dever School during a combined medical staff meeting circa 1992 to determine the need and frequency of eye care for the clients of the facility </li></ul></ul></ul>
  3. 3. Who Are Our Patients? <ul><li>100,000 children in Mass with special needs including CP (UCP Metro-Boston) </li></ul><ul><ul><li>3428 children<18 with CP (CDC 27/10000 kids <18) </li></ul></ul><ul><ul><li>15, 231 children with MR </li></ul></ul><ul><ul><li>1861 blind children (B-22 MCB 12/31/03) </li></ul></ul><ul><ul><li>221 Deafblind children in MA (469 CT, ME, NH) (B-22) </li></ul></ul><ul><li>23,000 Adults with MR </li></ul><ul><ul><li>8289 with vision impairment </li></ul></ul><ul><li> (DMR Consumer Registry Survey March, 2002) </li></ul><ul><li>2,835 MA TBI (nonfatal hospitalized in’98) </li></ul><ul><li>( http://www.cdc.gov – TBI Incidence & Distribution) </li></ul>
  4. 4. Babies Count: Birth to 3 Preliminary Data <ul><li>14 States, n = 1553 </li></ul><ul><li>Demographics </li></ul><ul><ul><li>Gender: Males 55%, Females: 45% </li></ul></ul><ul><ul><li>79% from two parent families </li></ul></ul><ul><ul><li>Ethnicity: 60% European American, 22% Hispanic/Latino, 8% African American, 5% Asian American, 4% Other, 1% Native American, 1% Missing </li></ul></ul>For Background: Hatten, DD et al. Model Registry of Early Childhood Visual Impairment Collaborative Group. Model Registry of Early Childhood Visual Impairment: First Year Results. JVIB 95(7)2001, 418-433 Data that follows :From Hatten D , Boyer B presentation at AER-2005 Biennial International Conference July 15, 2004 Babies Count: The National Registry for Children with Visual Impairments, Birth to 3 years
  5. 5. Babies Count: Birth to 3 <ul><li>Multiple disability risk at time of referral to specialized agency </li></ul><ul><ul><li>50% appeared to be visually impaired (VI) only </li></ul></ul><ul><ul><li>3% appeared to be VI/DD </li></ul></ul><ul><ul><li>47% appeared to be at hi risk for VI/multiple disabilities </li></ul></ul>
  6. 6. Babies Count: Birth to 3 <ul><li>Most prevalent visual conditions </li></ul><ul><ul><li>Cortical visual impairment 24% </li></ul></ul><ul><ul><li>Retinopathy of prematurity 17% </li></ul></ul><ul><ul><li>Optic nerve hypoplasia 9% </li></ul></ul><ul><ul><li>Albinism 6% </li></ul></ul><ul><ul><li>Structural abnormalities 5% </li></ul></ul><ul><ul><li>Retinal disorders 5% </li></ul></ul><ul><ul><li>Other 24% </li></ul></ul><ul><ul><li>Unknown/missing 10% </li></ul></ul>
  7. 7. Babies Count: Birth to 3 <ul><li>Most prevalent disabling conditions were </li></ul><ul><ul><li>Syndromes associated with cognitive disabilities 19% </li></ul></ul><ul><ul><li>Brain trauma/damage associated with cognitive disabilities 16% </li></ul></ul><ul><ul><li>Cerebral palsy 15% </li></ul></ul><ul><ul><li>Developmental delay 14% </li></ul></ul><ul><ul><li>Deafness/hard of hearing 9% </li></ul></ul>
  8. 8. Babies Count: Birth to 3 <ul><li>Most prevalent health/medical conditions were </li></ul><ul><ul><li>Orthopedic impairments 23% </li></ul></ul><ul><ul><li>Feeding problems 18% </li></ul></ul><ul><ul><li>Technology dependent 12% </li></ul></ul><ul><ul><li>Seizures 5% </li></ul></ul><ul><ul><li>Respiratory problems 5% </li></ul></ul>
  9. 9. Summary of Data from elsewhere <ul><li>Depending upon one’s definition.. </li></ul><ul><ul><li>MR is seen in 25 – 80 % of blind children </li></ul></ul><ul><ul><li>CP is present in 6-15 % of blind children </li></ul></ul><ul><ul><li>Hearing loss found in 10 % of blind children </li></ul></ul><ul><li>Higher incidence of significant refractive error, amblyopia and strabismus </li></ul><ul><li>Diverse population of low incidence groups with multiple medical issues besides problems with the visual system </li></ul><ul><ul><li>Potential difficultly with communication (Dr to Pt and vice versa) </li></ul></ul><ul><ul><li>Daunting to work with </li></ul></ul><ul><ul><ul><li>Many rare and medically needy conditions </li></ul></ul></ul><ul><li>We are not alone </li></ul><ul><ul><li>Other medical professionals </li></ul></ul><ul><ul><li>Patients, guardians, TEAM and others </li></ul></ul>
  10. 10. Current Sites of IDS <ul><li>Perkins School for the Blind - Watertown </li></ul><ul><li>Cotting School - Lexington </li></ul><ul><li>May Center for Education and Neurorehabilitation - Brockton </li></ul><ul><li>Spaulding Rehab Hospital Traumatic Brain Injury Unit - Boston </li></ul><ul><li>New England Pedi Care – Billerica </li></ul><ul><li>Cardinal Cushing School – Hanover (May 05) </li></ul>
  11. 11. Vision Continuum 20/20 Visual Acuity Full Visual Fields Totally Blind NLP Legally Blind 20/200 and/or visual field of 20° or less in the better eye with correction Visually Impaired/Low Vision Unable to correct visual acuity or visual fields with corrective lenses or surgical interventions. Individuals unable to perform functional tasks due to loss of vision.
  12. 12. NEEI/Perkins Low Vision Clinic
  13. 13. Trans-disciplinary Approach <ul><li>Sequential vs. simultaneous data collection and collaboration with a unified report </li></ul><ul><li>Uses TVI/LVT & other TEAM members in exam </li></ul><ul><li>Patient management (communication, behaviors, motivation) </li></ul><ul><li>Directly communicates daily routine & visual needs </li></ul><ul><li>Efficient collaborative method to set appropriate goals/recommendations </li></ul><ul><li>Effective F/U & training </li></ul>
  14. 14. Exam Room <ul><li>Increased illumination </li></ul><ul><li>Multiple lighting controls </li></ul><ul><li>Comfortable seating/observation areas </li></ul><ul><li>Variety of functional testing areas </li></ul>Breaking Patient Barriers
  15. 15. Components of a Functional Low Vision Exam <ul><li>Visual acuity </li></ul><ul><li>Refraction </li></ul><ul><li>Visual fields </li></ul><ul><li>Alignment </li></ul><ul><li>Motility </li></ul><ul><li>Binocularity </li></ul><ul><li>Color Vision </li></ul><ul><li>External eye health </li></ul><ul><li>Internal eye health </li></ul>
  16. 16. Cases <ul><li>WW </li></ul><ul><ul><li>Example of collaborative approach; multiple evaluators – H Vanguard, Children’s, Perkins </li></ul></ul><ul><ul><ul><li>Seen twice at Perkins, last visit Aug 2003 </li></ul></ul></ul><ul><ul><ul><li>Born 1994 </li></ul></ul></ul>
  17. 17. Cases <ul><li>WW continued </li></ul><ul><ul><ul><li>What we added to process: </li></ul></ul></ul><ul><ul><ul><ul><li>Bifocal, slant board, minimum text size relative to working distance </li></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Positive effect on working distance and posture </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><li>Using less analytical measures confirmed the presence of inferior and lateral field constriction </li></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>1.5” yellow star </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Small illuminated target </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><li>Advocated for community based functional vision assessment with TVI and an O&M eval </li></ul></ul></ul></ul>
  18. 18. Visual Fields <ul><li>Modified Confrontation VF </li></ul><ul><ul><li>Provides general information </li></ul></ul><ul><ul><li>Motivating and “Out of instrument” </li></ul></ul><ul><ul><li>Utilizes other TEAM members </li></ul></ul>
  19. 19. Cases <ul><li>WW continued </li></ul><ul><ul><li>Discussion point </li></ul></ul><ul><ul><ul><li>Bifocals with inferior field defect? </li></ul></ul></ul><ul><ul><ul><ul><li>With bifocal, able to use glasses fulltime in classroom for simultaneous distance near activities. </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Uses sun Rx outdoors – no bifocal </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Uses bifocals for school/homework </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Materials are on slant board or computer not down under his chin….thus, by moving eyes in down gaze, field defect should be out of his way thereby allowing for functional utilization of the bifocal </li></ul></ul></ul></ul>
  20. 20. Cases <ul><li>20 yr old female from the community with CP whose parents report has never had a successful acuity measurement, nor a full eye exam (yet came in with spectacles). </li></ul><ul><ul><li>Poor communication skills </li></ul></ul><ul><ul><ul><li>Limited vocabulary, minimal sign, some gestures </li></ul></ul></ul><ul><li>First seen at Perkins 1.5 years ago </li></ul>
  21. 21. Visual Acuity <ul><li>LEA Symbols </li></ul><ul><li>Symbols are easily recognized </li></ul><ul><li>Crowded or Single Symbol </li></ul><ul><li>Ideal for pediatric patients </li></ul><ul><li>or those with cognitive </li></ul><ul><li>impairments </li></ul><ul><li>Patient may verbally identify </li></ul><ul><li>or match (non-verbal) </li></ul>
  22. 22. Cases <ul><li>14 yo boy who came to Perkins from NY with minimal visual information, except that the educational reports stated that he had light perception </li></ul><ul><ul><li>Staff felt that his vision was far better and wanted us to quantify his acuity </li></ul></ul>
  23. 23. Case example of Functional Acuities
  24. 24. Craniosynostosis Case –Pfeiffer Syndrome Acrocephalosyndactly Syndromes (ACS) <ul><li>~3 yo boy when first seen at Perkins </li></ul><ul><li>Followed elsewhere, but wanted functional vision evaluation </li></ul><ul><li>Was in EI and was beginning preschool </li></ul><ul><li>Had some vision services </li></ul><ul><li>Need to be aware of increased intracranial pressure and impact on behavior, vision </li></ul><ul><li>Monitoring of ONH and IOP </li></ul>
  25. 25. Motility
  26. 26. Motility
  27. 27. Ocular Health - external <ul><li>5x illuminated hand magnifier </li></ul><ul><li>Hand-held slit lamp </li></ul><ul><li>Tonopen </li></ul>
  28. 28. Cases <ul><li>Unresolved Case 1 </li></ul><ul><ul><li>11 yo deaf female, adopted six years ago </li></ul></ul><ul><ul><li>One of many children, only one deaf of presumed maternal CMV </li></ul></ul><ul><ul><li>Newly discovered pedi-opthal eval when less than 1 yr old notes “no evidence of CMV retinitis” </li></ul></ul><ul><ul><li>Mother (adopted) has perceived an inferior field defect </li></ul></ul><ul><ul><li>Recent community based functional vision assessment felt one was present as well </li></ul></ul><ul><ul><li>Subsequent tangent screen assessment at NEEI/Perkins clinic found bilateral paracentral scotomas that were present with a 2mm while target but mostly gone with a 6mm white target </li></ul></ul><ul><ul><li>Will see Dr Fulton for eval/Dx and Dr Mayer for confirmation of defect </li></ul></ul><ul><ul><li>Impact of diagnosis on patient/family </li></ul></ul>
  29. 29. Cases <ul><li>Unresolved Case 2 </li></ul><ul><li>Born 1986, student at Perkins, rarely seen at our clinic. Followed by a Pedi Ophthal. </li></ul><ul><ul><li>Longstanding presumed ocular diagnosis: “probable optic atrophy from neonatal asphyxia” </li></ul></ul><ul><ul><li>Most recently (late ’04) noted: “I think there is a retinal degeneration here because of the combination of pale discs, attenuated retinal blood vessels, and mottling of the retinal pigment epithelium” </li></ul></ul>
  30. 30. Cases <ul><li>Unresolved Case 2 </li></ul><ul><li>Deaf, spastic quadriplegia </li></ul><ul><li>Implications </li></ul><ul><ul><li>Speech/communication </li></ul></ul><ul><ul><ul><li>2 x 2 Mayer- Johnson Symbols (50 to 100 symbol vocabulary) </li></ul></ul></ul><ul><ul><ul><li>Acuity (late 04) OD: 20/130, OS: 20/63, OU: 20/63 Teller acuity cards at 55cm </li></ul></ul></ul><ul><ul><li>Mobility </li></ul></ul><ul><ul><ul><li>Visual </li></ul></ul></ul><ul><ul><li>Planning Transition? </li></ul></ul><ul><li>Eval being set up for ERG at Children’s </li></ul>
  31. 31. Conclusion of the Evaluation <ul><li>Make the connection between the manipulation of the testing environment to home, classroom or vocational setting issues </li></ul><ul><li>Refer to initial concerns as findings are reviewed </li></ul><ul><li>Be clear about follow-up </li></ul><ul><ul><li>“ Co-Management” of visual issues with ophthalmologist </li></ul></ul><ul><li>Initial environmental / low vision information </li></ul><ul><ul><li>Lighting, glare, positioning </li></ul></ul><ul><ul><li>Return for complete LV evaluation if necessary </li></ul></ul>
  32. 32. Questions <ul><li>You can reach us at: </li></ul><ul><li>Barry Kran </li></ul><ul><li>[email_address] </li></ul><ul><li>Darick Wright </li></ul><ul><li>[email_address] </li></ul>

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