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SEE THE POSSIBILITIES: Support and Training for Caregivers of Visually Impaired Seniors Michael J. Epp, Director, Outreach  Envision Rehabilitation Center Wichta, Kansas USA
SEE THE POSSIBILITIES “ I’m not blind – I just can’t see” “ More people are blinded by definition than by any other cause”  (Greenwood in Ritter 1957) “ Blindness" can have many connotations and is difficult to define precisely USA- “Legal Blindness”-visual acuity with best correction in the better eye worse than or equal to 20/200 or a visual field extent of less than 20 degrees in diameter   Approximately 3% USA legally blind  90-95% have residual vision
SEE THE POSSIBILITIES 23% USA population is estimated to have a vision-related disability National Health Interview Survey, 2002 Vision Supplement – Correlated with International Classification of Functioning, Disability and Health (ICF) (World Health Organization [WHO], 2001) (Gerry E. Hendershot, Paul J. Placek, and Nanette Goodman 2006)
SEE THE POSSIBILITIES To many people, blindness means complete loss of vision with no remaining perception of light Stigma of “disability” and “handicapped” Telling a person that he/she is blind (legally or otherwise) tends to categorize that person and leads to the assumption that “nothing more can be done” Has little value for low vision rehabilitation or other interventions
SEE THE POSSIBILITIES BLINDNESS = Total and Near-total Vision loss, i.e. for cases with little or no residual vision LOW VISION = cases that have residual vision. These patients require low vision rehabilitation VISION LOSS = term for all conditions. Vision loss can range from mild to moderate, severe, profound and total loss VISUAL IMPAIRMENT = visual function measurement (acuity, field, etc.) rather than on an assessment of functional vision (e.g. the ability to read newsprint). Low Vision = partial impairment, to Blindness = total impairment) International Council of Ophthalmology (ICO) and the International Federation of Ophthalmological Societies (IFOS)   VISUAL IMPAIRMENT = ANY VISUAL LOSS WHICH NEGATIVELY AFFECTS A PERSON’S QUALITY OF LIFE
SEE THE POSSIBILITIES National Eye Institute, National Institutes of Health & Prevent Blindness America Study Blindness or Low Vision affects 3.3 million Americans over 40, or 1 in 28 This figure will reach 5.5 million by the year 2020 Low Vision and Blindness increase significantly after age 65 People over 80 account for 69% of Blindness
SEE THE POSSIBILITIES Current    2020 Estimates  Projections   (in millions)  (in millions) Macular Degeneration  1.8* 2.9 Glaucoma  2.2 3.3 Diabetic Retinopathy 4.1 7.2 *Another 7.3 million are at substantial risk from AMD
SEE THE POSSIBILITIES 2.7% 3,298,000 2.0% 2,361,000 0.8% 937,000 Total   23.7% 2,180,000 16.7% 1,532,000 7.0% 648,000 >80 3.8% 605,000 3.0% 471,000 0.8% 134,000 70-79 1.2% 235,000 0.9% 176,000 0.3% 59,000 60-69 0.4% 147,000 0.3% 102,000 0.1% 45,000 50-59 0.3% 131,000 0.2% 80,000 0.1% 51,000 40-49 (%) Persons (%) Persons (%) Persons Years All Vision Impaired Low Vision Blindness Age,
SEE THE POSSIBILITIES   2002 NEI Prevalence of Adult Vision Impairment and Age Related Eye Disease in Kansas
SEE THE POSSIBILITIES 2004 US Census Prevalence of Specific Disabilities Among Persons 16 & Older KANSAS & WICHITA MSA
SEE THE POSSIBILITIES National Eye Institute (NEI) National Eye Health Education Program (NEHEP)  Life With Low Vision:  A Report on Qualitative Research Among People With Low Vision and Their Caregivers (1997) Research among individuals with low vision. Middle-aged and older people with low vision and those close to and caring for them
SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) How low vision affects quality of life Awareness of services, information, and devices available to help Appropriate interventions to create awareness of available services, information, and devices
SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) Focus group participants were more interested in seeking a cure for the eye disease than in learning how to cope with vision loss Did not perceive their vision loss to be serious enough to warrant the use and expense of services and devices Did not perceive themselves to be “blind” or within the constituency of organizations that offer services for “the blind” Low vision as part of the natural aging process
SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) Most caregivers were not aware of services and devices that would help people cope with low vision Many caregivers did not feel family members and friends with low vision were in need of services and devices to help them cope Caregivers would like to know how they can assist people with low vision and suggest coping strategies without injuring their pride Most respondents said that their eye care professionals provided little to no medical information about their vision problems and no information about how to cope with their conditions or diagnoses
SEE THE POSSIBILITIES NEHEP goals of the Low Vision Education Program (NEI, 1999) Increase awareness among people aged 65 and older, their families and friends, and the general public about low vision, and assure them that services, assistive technology, and environmental modifications and techniques are available to help people with low vision and to improve their daily functions
SEE THE POSSIBILITIES Increase awareness among those affected by low vision that they are not alone and that help is available Increase actions taken by people with low vision, including consulting with eye care professionals and vision rehabilitation specialists, and expand the use of appropriate services, assistive technology, and environmental modifications that might improve their daily functions
SEE THE POSSIBILITIES Increase steps taken by family members, friends, and significant others to support those with low vision
SEE THE POSSIBILITIES   Envision Rehabilitation Center Caregiver Outreach Founded 1933 Wichita, KS Envision is a private, not-for-profit agency uniquely combining employment opportunities with rehabilitation services and public education The mission of Envision is to enhance the personal independence of individuals with low vision or blindness through employment and vision rehabilitation  Envision is associated with National Industries for the Blind, an organization that serves as a liaison between the federal government and 112 industries nationwide Envision is funded through the sale of products that we manufacture, rehabilitation fee-for-service contracts, grants, and contributions from the community http://www.envisionus.com
SEE THE POSSIBILITIES   Envision Rehabilitation Center Caregiver Outreach Envision Rehabilitation Center low vision clinic Serving patients across the lifespan 1,500 annual patient census Medicare Low Vision Rehabilitation Demonstration Project  Information, resources and support groups Adaptive aids store (Envision Everyday) Public education and outreach Continuing education for medical professionals (Envision Conference)  http://www.envisionconference.org
SEE THE POSSIBILITIES   Envision Rehabilitation Center Caregiver Outreach Grant recipient National Eye Institute (NEI) HEALTHY VISION COMMUNITY AWARDS PROGRAM (National Institutes of Health, Healthy People 2010, Vision) Healthy People 2010 provides a set of 10-year evidence-based objectives for improving the health of all Americans  Objective 28-10. Increase the use of rehabilitation services and adaptive devices by persons with visual impairments  Grant awarded to Envision 2005 and 2006
SEE THE POSSIBILITIES Goals: Provide support and training to caregivers in the Central Plains Area Agency on Aging (CPAA)* on assisting older adults cope with vision loss and accessing vision rehabilitation services and adaptive devices Provide essential training and resource information on managing the challenges caregivers confront and providing the best care to seniors with visual impairments, maximizing their success for continued independent living *Geography defined by MSA State Unit on Aging (Older Americans Act, amended,1973)- CPAAA is 1 of 11 area agencies on aging in Kansas. Harvey, Sedgwick, and Butler Counties - highest number of older people of any AAA in the state: approximately 83,000 people aged 60 and over  http://www.cpaaa.org
SEE THE POSSIBILITIES Objective: Provide 18 training sessions annually in the CPAA region to caregivers of visually impaired seniors in 2005 and 2006 Training sessions in the community at senior centers, assisted living centers, and senior services provider agencies Focus on sensitivity to vision loss in older adults, vision and aging, adaptive aids, coping strategies for caregivers, common severe eye disorders affecting older adults, independent living skills, accessing resources and vision rehabilitation services
SEE THE POSSIBILITIES Collaboration with CPAAA Older Americans Act Title III E Caregiver Support funding Marketing word-of-month and referrals from  aging partners and the Central Plains Area Agency on Aging information and referral network and direct marketing in the target audience’s community, i.e. senior service centers, assisted living and retirement communities Direct mailing to caregivers had 2% response in reaching the target population
SEE THE POSSIBILITIES If you or someone you care about is an older adult with vision loss, Envision can help
SEE THE POSSIBILITIES Training tools: age-related eye diseases education National Eye Institute brochures  http://catalog.nei.nih.gov
SEE THE POSSIBILITIES Training tools: Vision simulations
SEE THE POSSIBILITIES Training tools: Vision simulations, SLO
SEE THE POSSIBILITIES Training tools: Brochure for caregivers
SEE THE POSSIBILITIES Training tools: Brochure on low vision rehabilitation
SEE THE POSSIBILITIES Caregiver education Tips for speaking to eye care professionals Referral sources and multidisciplinary nature of low vision care
SEE THE POSSIBILITIES Results 2005: 18 training sessions, 276 caregivers and older adults with vision loss 2006: 26 training sessions, reaching at least 217 caregivers and older adults with vision loss
SEE THE POSSIBILITIES
SEE THE POSSIBILITIES 70% Survey completion 4=Agree, 5=Strongly Agree Reducing common stereotypes and miss-information caregivers have about age-related vision loss by 80% 80% program participants benefited greatly from the training sessions
SEE THE POSSIBILITIES New patient referral source tracked in patient scheduling 40% > in the number of referrals by caregivers of visually impaired older adults
SEE THE POSSIBILITIES References Archives of Ophthalmology 2004; 122:564-572, Archives of Ophthalmology 2004; 122:532-538, Vision Problems in the U.S. Report (Prevent Blindness America and NEI). Gerry E. Hendershot, Paul J. Placek, and Nanette Goodman (2006). Taming the Beast: Measuring Vision-Related Disability Using the International Classification of Functioning.  Journal of Visual Impairment & Blindness , 100, 806-823. International Council of Ophthalmology (ICO) and the International Federation of Ophthalmological Societies (IFOS) 2002. Greg Link (2002). Serving Older Persons With Visual Impairments and Their Caregivers. Suggestions for State Units on Aging. National Association of State Units on Aging.  National Eye Institute. (1997). Life with low vision: A report on qualitative research among people with low vision and their caregivers: Executive summary. Bethesda, MD: Author
SEE THE POSSIBILITIES References National Eye Institute. (1999, April). National eye health education program (NEHEP): Low vision public education plan. Bethesda, MD: Author. Ritter, C. G. (1957). Questions and answers on low vision.  New Outlook for the Blind, 51 , 446–453.
SEE THE POSSIBILITIES Thank You Michael J. Epp, Director, Outreach & Continuing Education Envision Rehabilitation Center 610 N. Main St. Wichita, KS 67203 USA 316.682.4646 [email_address]

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See Vision08

  • 1. SEE THE POSSIBILITIES: Support and Training for Caregivers of Visually Impaired Seniors Michael J. Epp, Director, Outreach Envision Rehabilitation Center Wichta, Kansas USA
  • 2. SEE THE POSSIBILITIES “ I’m not blind – I just can’t see” “ More people are blinded by definition than by any other cause” (Greenwood in Ritter 1957) “ Blindness" can have many connotations and is difficult to define precisely USA- “Legal Blindness”-visual acuity with best correction in the better eye worse than or equal to 20/200 or a visual field extent of less than 20 degrees in diameter Approximately 3% USA legally blind 90-95% have residual vision
  • 3. SEE THE POSSIBILITIES 23% USA population is estimated to have a vision-related disability National Health Interview Survey, 2002 Vision Supplement – Correlated with International Classification of Functioning, Disability and Health (ICF) (World Health Organization [WHO], 2001) (Gerry E. Hendershot, Paul J. Placek, and Nanette Goodman 2006)
  • 4. SEE THE POSSIBILITIES To many people, blindness means complete loss of vision with no remaining perception of light Stigma of “disability” and “handicapped” Telling a person that he/she is blind (legally or otherwise) tends to categorize that person and leads to the assumption that “nothing more can be done” Has little value for low vision rehabilitation or other interventions
  • 5. SEE THE POSSIBILITIES BLINDNESS = Total and Near-total Vision loss, i.e. for cases with little or no residual vision LOW VISION = cases that have residual vision. These patients require low vision rehabilitation VISION LOSS = term for all conditions. Vision loss can range from mild to moderate, severe, profound and total loss VISUAL IMPAIRMENT = visual function measurement (acuity, field, etc.) rather than on an assessment of functional vision (e.g. the ability to read newsprint). Low Vision = partial impairment, to Blindness = total impairment) International Council of Ophthalmology (ICO) and the International Federation of Ophthalmological Societies (IFOS) VISUAL IMPAIRMENT = ANY VISUAL LOSS WHICH NEGATIVELY AFFECTS A PERSON’S QUALITY OF LIFE
  • 6. SEE THE POSSIBILITIES National Eye Institute, National Institutes of Health & Prevent Blindness America Study Blindness or Low Vision affects 3.3 million Americans over 40, or 1 in 28 This figure will reach 5.5 million by the year 2020 Low Vision and Blindness increase significantly after age 65 People over 80 account for 69% of Blindness
  • 7. SEE THE POSSIBILITIES Current 2020 Estimates Projections (in millions) (in millions) Macular Degeneration 1.8* 2.9 Glaucoma 2.2 3.3 Diabetic Retinopathy 4.1 7.2 *Another 7.3 million are at substantial risk from AMD
  • 8. SEE THE POSSIBILITIES 2.7% 3,298,000 2.0% 2,361,000 0.8% 937,000 Total   23.7% 2,180,000 16.7% 1,532,000 7.0% 648,000 >80 3.8% 605,000 3.0% 471,000 0.8% 134,000 70-79 1.2% 235,000 0.9% 176,000 0.3% 59,000 60-69 0.4% 147,000 0.3% 102,000 0.1% 45,000 50-59 0.3% 131,000 0.2% 80,000 0.1% 51,000 40-49 (%) Persons (%) Persons (%) Persons Years All Vision Impaired Low Vision Blindness Age,
  • 9. SEE THE POSSIBILITIES 2002 NEI Prevalence of Adult Vision Impairment and Age Related Eye Disease in Kansas
  • 10. SEE THE POSSIBILITIES 2004 US Census Prevalence of Specific Disabilities Among Persons 16 & Older KANSAS & WICHITA MSA
  • 11. SEE THE POSSIBILITIES National Eye Institute (NEI) National Eye Health Education Program (NEHEP) Life With Low Vision: A Report on Qualitative Research Among People With Low Vision and Their Caregivers (1997) Research among individuals with low vision. Middle-aged and older people with low vision and those close to and caring for them
  • 12. SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) How low vision affects quality of life Awareness of services, information, and devices available to help Appropriate interventions to create awareness of available services, information, and devices
  • 13. SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) Focus group participants were more interested in seeking a cure for the eye disease than in learning how to cope with vision loss Did not perceive their vision loss to be serious enough to warrant the use and expense of services and devices Did not perceive themselves to be “blind” or within the constituency of organizations that offer services for “the blind” Low vision as part of the natural aging process
  • 14. SEE THE POSSIBILITIES NEHEP Life with Low Vision (1997) Most caregivers were not aware of services and devices that would help people cope with low vision Many caregivers did not feel family members and friends with low vision were in need of services and devices to help them cope Caregivers would like to know how they can assist people with low vision and suggest coping strategies without injuring their pride Most respondents said that their eye care professionals provided little to no medical information about their vision problems and no information about how to cope with their conditions or diagnoses
  • 15. SEE THE POSSIBILITIES NEHEP goals of the Low Vision Education Program (NEI, 1999) Increase awareness among people aged 65 and older, their families and friends, and the general public about low vision, and assure them that services, assistive technology, and environmental modifications and techniques are available to help people with low vision and to improve their daily functions
  • 16. SEE THE POSSIBILITIES Increase awareness among those affected by low vision that they are not alone and that help is available Increase actions taken by people with low vision, including consulting with eye care professionals and vision rehabilitation specialists, and expand the use of appropriate services, assistive technology, and environmental modifications that might improve their daily functions
  • 17. SEE THE POSSIBILITIES Increase steps taken by family members, friends, and significant others to support those with low vision
  • 18. SEE THE POSSIBILITIES Envision Rehabilitation Center Caregiver Outreach Founded 1933 Wichita, KS Envision is a private, not-for-profit agency uniquely combining employment opportunities with rehabilitation services and public education The mission of Envision is to enhance the personal independence of individuals with low vision or blindness through employment and vision rehabilitation Envision is associated with National Industries for the Blind, an organization that serves as a liaison between the federal government and 112 industries nationwide Envision is funded through the sale of products that we manufacture, rehabilitation fee-for-service contracts, grants, and contributions from the community http://www.envisionus.com
  • 19. SEE THE POSSIBILITIES Envision Rehabilitation Center Caregiver Outreach Envision Rehabilitation Center low vision clinic Serving patients across the lifespan 1,500 annual patient census Medicare Low Vision Rehabilitation Demonstration Project Information, resources and support groups Adaptive aids store (Envision Everyday) Public education and outreach Continuing education for medical professionals (Envision Conference) http://www.envisionconference.org
  • 20. SEE THE POSSIBILITIES Envision Rehabilitation Center Caregiver Outreach Grant recipient National Eye Institute (NEI) HEALTHY VISION COMMUNITY AWARDS PROGRAM (National Institutes of Health, Healthy People 2010, Vision) Healthy People 2010 provides a set of 10-year evidence-based objectives for improving the health of all Americans Objective 28-10. Increase the use of rehabilitation services and adaptive devices by persons with visual impairments Grant awarded to Envision 2005 and 2006
  • 21. SEE THE POSSIBILITIES Goals: Provide support and training to caregivers in the Central Plains Area Agency on Aging (CPAA)* on assisting older adults cope with vision loss and accessing vision rehabilitation services and adaptive devices Provide essential training and resource information on managing the challenges caregivers confront and providing the best care to seniors with visual impairments, maximizing their success for continued independent living *Geography defined by MSA State Unit on Aging (Older Americans Act, amended,1973)- CPAAA is 1 of 11 area agencies on aging in Kansas. Harvey, Sedgwick, and Butler Counties - highest number of older people of any AAA in the state: approximately 83,000 people aged 60 and over http://www.cpaaa.org
  • 22. SEE THE POSSIBILITIES Objective: Provide 18 training sessions annually in the CPAA region to caregivers of visually impaired seniors in 2005 and 2006 Training sessions in the community at senior centers, assisted living centers, and senior services provider agencies Focus on sensitivity to vision loss in older adults, vision and aging, adaptive aids, coping strategies for caregivers, common severe eye disorders affecting older adults, independent living skills, accessing resources and vision rehabilitation services
  • 23. SEE THE POSSIBILITIES Collaboration with CPAAA Older Americans Act Title III E Caregiver Support funding Marketing word-of-month and referrals from aging partners and the Central Plains Area Agency on Aging information and referral network and direct marketing in the target audience’s community, i.e. senior service centers, assisted living and retirement communities Direct mailing to caregivers had 2% response in reaching the target population
  • 24. SEE THE POSSIBILITIES If you or someone you care about is an older adult with vision loss, Envision can help
  • 25. SEE THE POSSIBILITIES Training tools: age-related eye diseases education National Eye Institute brochures http://catalog.nei.nih.gov
  • 26. SEE THE POSSIBILITIES Training tools: Vision simulations
  • 27. SEE THE POSSIBILITIES Training tools: Vision simulations, SLO
  • 28. SEE THE POSSIBILITIES Training tools: Brochure for caregivers
  • 29. SEE THE POSSIBILITIES Training tools: Brochure on low vision rehabilitation
  • 30. SEE THE POSSIBILITIES Caregiver education Tips for speaking to eye care professionals Referral sources and multidisciplinary nature of low vision care
  • 31. SEE THE POSSIBILITIES Results 2005: 18 training sessions, 276 caregivers and older adults with vision loss 2006: 26 training sessions, reaching at least 217 caregivers and older adults with vision loss
  • 33. SEE THE POSSIBILITIES 70% Survey completion 4=Agree, 5=Strongly Agree Reducing common stereotypes and miss-information caregivers have about age-related vision loss by 80% 80% program participants benefited greatly from the training sessions
  • 34. SEE THE POSSIBILITIES New patient referral source tracked in patient scheduling 40% > in the number of referrals by caregivers of visually impaired older adults
  • 35. SEE THE POSSIBILITIES References Archives of Ophthalmology 2004; 122:564-572, Archives of Ophthalmology 2004; 122:532-538, Vision Problems in the U.S. Report (Prevent Blindness America and NEI). Gerry E. Hendershot, Paul J. Placek, and Nanette Goodman (2006). Taming the Beast: Measuring Vision-Related Disability Using the International Classification of Functioning. Journal of Visual Impairment & Blindness , 100, 806-823. International Council of Ophthalmology (ICO) and the International Federation of Ophthalmological Societies (IFOS) 2002. Greg Link (2002). Serving Older Persons With Visual Impairments and Their Caregivers. Suggestions for State Units on Aging. National Association of State Units on Aging. National Eye Institute. (1997). Life with low vision: A report on qualitative research among people with low vision and their caregivers: Executive summary. Bethesda, MD: Author
  • 36. SEE THE POSSIBILITIES References National Eye Institute. (1999, April). National eye health education program (NEHEP): Low vision public education plan. Bethesda, MD: Author. Ritter, C. G. (1957). Questions and answers on low vision. New Outlook for the Blind, 51 , 446–453.
  • 37. SEE THE POSSIBILITIES Thank You Michael J. Epp, Director, Outreach & Continuing Education Envision Rehabilitation Center 610 N. Main St. Wichita, KS 67203 USA 316.682.4646 [email_address]