Evolution In A Time Of Revolution?

1. Low Vision Services: Evolution In A Time Of Revolution? Gregory Goodrich, Ph.D. VA Palo Alto Health Care System

2. My Goals • Starting point was Krister Inde’s reference to Darwin and what hasn’t worked: • What forces drive low vision? Are these evolutionary or revolutionary? • Are we in the midst of an evolutionary response to a revolutionary change? • I am trying to be controversial and precipitate discussion so my hypothesis is that we are governed by evolutionary change in a time when we need to instigate revolutionary change (that is; evolution is too slow and the dinosaurs need to change more rapidly or the mammals will take over).

3. The Question • In low vision are we seeing a gradual change from common ‘ancestry’ that has led to a continuation of successful low vision services? • Or, are we seeing a dramatic change with abrupt departures from the past that threaten quality services for all who need them?

4. Evolution Change over successive generations Minimal or substantial Enhances survival and/or reproductive success Implies some predictability Revolution Turning point Overthrow of idea or government Sudden or momentous change in a situation Implies lack of control Its a Matter of Perspective (or can we tell the difference?)

5. Why do we care? • Evolutionary changes are usually those that can be relatively easily adjusted to, and change can be incorporated into our standard of care over a period of time • Revolutionary changes may happen so quickly and responses need to be of such magnitude that the standard of care is no longer adequate and must be radically redefined. “Do we need a revolution?”

6. Some Perspectives On: • Patients/clients • Low vision devices • Low vision knowledge base • Service delivery • Professional services • Medical advances

7. The Changing Population • Children • Number remaining about constant • Increase in percent of children with multiple disabilities (CVI) • Working Age • Transition from youth to adults about the same • Iraq/Afghanistan; polytrauma and TBI increasing • Seniors • “Epidemic growth” in age-related disease • Lack of attention to Stroke/TBI (may exceed the visually impaired population in size)

8. The “simple” numbers • ~200,000 new cases of macular disease/yr. • ~250,000 new cases of visual impairment/yr. • Un-served populations • ~20% to ~40% of all stroke/TBI patients • <about 15% in VA TBI population • ~60,000+ cases of field lose from stroke/TBI/yr. • If caused by a virus these numbers of new cases would be labeled an epidemic and medical funding made available • The population numbers suggest a revolution is needed!

9. 1910 Telescopic Devices 1930 Practical Telescopes 1950 Magnifiers More Available 1959 CCTV First Described 1970 CCTV First Marketed 1980 Computers/Reading Machines 1990 Head Mounted LV Devices 2000 to present - Continued Trend to Evolve Better Devices Feinbloom LV Practice/Optical Design First Low Vision Service Spectacles/lenses evolve Magnifiers evolve Electronic devices evolve Internet, communication, electronic books, accessibility evolves History - Low Vision Devices Darwin’s happy – its evolution!

10. Growth in Knowledge Base

11. Knowledge Base • Rapid growth • Specialization • Children/Education; Adults; Devices; Services/Training; etc. • More professional disciplines recognize impact • Need documented (numbers, cost) • Few positive outcome studies – limits growth of services • Over-all growth is revolutionary

12. Service Delivery • Currently there are highly trained professionals, however too few • Optometrists & Ophthalmologists • Special Ed, Rehabilitation, OT, etc. • Support services • Appear to be few opportunities to increase growth in professions • Services often outside medical profession and this limits growth through traditional medical funding sources

13. Service Delivery • No widely accepted or applied standard of clinical care • Internationally • Vision 2020 • Low Vision Resource Center, Hong Kong • Service Delivery appears to be evolutionary although there may be a revolution going on in some parts of the world

14. Medical Advances • Improved treatment • Lucentis and Avastin • Laser surgery for diabetic retinopathy • Significant advances • Reduce severity • Prosthetic vision • Long term gain? • More to come?? • Undoubtedly, but…

15. Medical Advances(illustration from the Artificial Retina Project) • Two companies in Stage III Clinical Trials • In next 12 to 24 months perhaps 100 to 200 people will use one of these implants • Rehabilitation Needs? • Will this reduce the blind population & increase low vision population? • Effect on low vision services…

16. Evolution or Revolution? • Patients/clients - Revolution • Low vision devices - Evolution • Low vision knowledge base – Revolution? • Service delivery – Evolution? Revolution? • Medical advances - Evolution

17. Conclusions • It appears that the population and our knowledge base are in the midst of a revolution. • Our development of devices and medical advances are evolutionary • Service delivery change is (in many countries) evolutionary but some parts of the world are having a revolution

18. Implications • More patients/clients will “trump” other processes • No substantive increases in professional providers or services • Limited by lack of 3rd party funding, separation from medical model, failure to integrate into mainstream care, professional apathy, professional “turf” (we don’t “play well with others”), conflicting/apathetic consumer input • In short, we may be in the midst of a revolution with response that will leave too many un/underserved!

19. The Result… • No agreed upon “gold standard” of care or even “minimum standard” of care • Majority of clients/patients faced with no available services or services that many would consider to be less than effective • Low vision professionals replaced by more numerous but less qualified opportunists?

20. Thank you for your attention… • Please feel free to publicly voice your disagreement or agreement! • And feel free to try to change the status quo (for the better, of course)! • My contact information: Gregory.Goodrich@va.gov