- Email: [email protected]
Low vision rehabilitation services: The Saskatchewan experience
Low vision rehabilitation services: the Saskatchewan experience George R. Gilmour, MB, ChB ABSTRACT • RÉSUMÉ
From a suitcase carrying various magnifiers in 1955, the Saskatchewan Low Vision Clinic has enlarged— and the affiliated Canadian National Institute for the Blind (CNIB) has slimmed down through provincial amalgamation and budgetary cutbacks. Now, aids range from magnifiers to closed-circuit televisions, new technologies can be obtained on loan from the CNIB, and some financial assistance is available. Because Saskatchewan is still comparatively rural, with 60% of the population distributed throughout the province outside the two major urban areas, access to low vision services can be a problem. Increasing use of specialized counsellors, however, is helping deal with specific needs, and we hope to add psychologists, occupational therapists, and social workers as money is available. Réserve de loupes diverses qu’elle était en 1955, la clinique de malvoyance de la Saskatchewan a grossi et l’INCA, affilié, a réduit. L’aide varie maintenant entre la loupe et la télévision à circuit fermé, les nouvelles technologies peuvent être obtenues sur prêt de l’INCA, et une certaine aide financière est accessible. Parce que la Saskatchewan est encore relativement rurale, 60 % de sa population y étant répartie à l’extérieur des deux grands centres urbains, l’accès aux services d’aide pour malvoyance peut poser un problème. Le recours accru aux conseillers spécialisés aide cependant à combler des besoins particuliers et nous espérons y ajouter des psychologues, des thérapeutes et des travailleurs sociaux à mesure que croîtra le financement.
DEMOGRAPHIC
BACKGROUND
S
askatchewan is a large province, although most of its population is concentrated in the southern third of its area. Approximately 40% of Saskatchewan’s population is found in the two largest cities in the province, divided equally between Saskatoon and Regina. The remaining 60% of the population is scattered throughout smaller cities, towns, hamlets, and rural areas. Saskatchewan has the highest percentage of seniors per capita in Canada (14% compared with the national average of 11%).1 Such demographics have implications for the prevalence of age-related macular degeneration and the provision of low vision services in the province. HISTORICAL
BACKGROUND
The Canadian National Institute for the Blind (CNIB) was apparently the first to deliver low vision services in Saskatchewan. The province was divided into north and south service areas, with the dividing line passing through the small town of Davidson, approximately halfway between Saskatoon and Regina. This dividing
From the Department of Ophthalmology, University of Saskatchewan, Saskatoon, Sask. Originally received Nov. 11, 2005 Accepted for publication Feb. 16, 2006
line, established by the CNIB to conduct their work, split the population in half, with the south district served out of Regina and the north district out of Saskatoon. A low vision clinic was started in Saskatoon in 1955 by the head of ophthalmology and later dean of medicine at the University of Saskatchewan, Dr. R.G. Murray. Dr. Murray interested Dr. C.H. Andrews, an ophthalmologist from Prince Albert who was nearing retirement, in providing low vision ophthalmological care in Saskatoon on an itinerant basis every month or so. He arranged for him to take some training at Lighthouse International in New York and after that Dr. Andrews performed this function far longer than anyone had anticipated, almost 20 years. Once a month, Dr. Andrews travelled 150 km to Saskatoon and saw referred patients in the offices belonging to the 3 ophthalmologists affiliated with the Department of Ophthalmology at the university. He had a variety of visual aids in a large suitcase that he used in his practice. Once the aids had been shown to a patient and identified as useful, Dr. Andrews wrote to the CNIB office in Saskatoon suggesting such aids be supplied to the patient.
Correspondence to: G.R. Gilmour, MB, Northern Saskatchewan Low Vision Rehabilitation Clinic, Saskatoon City Hospital Eye Centre, 701 Queen St., Saskatoon SK S7K 0M7; fax (306) 764-4501 ; [email protected] This article has been peer-reviewed. Can J Ophthalmol 2006;41:370–2
370
LVR in Saskatchewan—Gilmour
LVR in Saskatchewan—Gilmour
One of the CNIB counsellors then visited the patient with the aids and demonstrated how to use them properly. After Dr. Andrews retired, a number of other ophthalmologists took over the position, but there was often a hiatus of many months before the next visiting ophthalmologist was appointed. Gradually the gaps between filling the position grew longer until eventually the optometrists in Saskatoon assumed the running of the clinic. Still, there was not a regular routine clinic on specific days. Optometrists would change quite often, too, so the waiting list, which had already grown significantly, continued to slowly increase in size until waiting times for an appointment to the clinic were between 14 and 18 months. In 2001, at the request of the Department of Ophthalmology at the University of Saskatchewan, the author assumed directorship of the clinic. By this time, it had become known as the Northern Saskatchewan Low Vision Rehabilitation Clinic, located in the Eye Centre at Saskatoon City Hospital. In Regina, a low vision clinic has been in operation for at least the past 25 years serving the vision rehabilitation needs of the southern part of the province. PROVIDERS AND
PRACTITIONERS
By far the largest provider of low vision services in Saskatchewan is the CNIB. For the purpose of providing services, the northern and southern districts each have a similar complement of service, fundraising, and administrative staff. Until recently, Saskatchewan and Manitoba were separate divisions of the CNIB; however, they have shared one Executive Director since 2002, and as of spring 2005, Saskatchewan and Manitoba have become one CNIB division. The Saskatchewan Executive Director moved to Winnipeg to assume leadership of the new division, and a new management structure has been developed. CNIB has a core set of services, and it endeavours to provide these services throughout the province. The service delivery methods, however, vary slightly from one location or district to another, depending on staffing and on other community resources or needs. Rehabilitation training in the province is done solely by the CNIB, and low vision assessments are provided by other eye care professionals. The CNIB has highly specialized counsellors available in a number of disciplines. There is 1 instructor for orientation and mobility in each district. There is a 1.5 counsellor position for the province for child and family counsellors for children to 18 years of age. There is a 1.5 counsellor position for each district for vision rehabilitation counsellors who work specifically with aids such as magnifiers and closed-circuit televisions (CCTVs).
There is a 1.5 counsellor position for each district for client services counsellors who help people adjust to their visual impairments and who ensure that clients are aware of low vision services and support available to them in the province. Also available and staffed are positions for employment counsellors, a rehabilitation teacher, and technicians and technical support who work with computers and CCTVs, JAWS, ZoomText, and other adaptive devices. Depending on their specific role, CNIB staff may come from such backgrounds as nursing, social work, education, psychology, or sociology before joining the CNIB. Once hired, counsellors receive specialized training in specific areas as needed for their positions. For example, vision rehabilitation counsellors complete the Johns Hopkins Vision Rehabilitation distance education course via the Internet, which is approximately equivalent to a 4-week program. Counsellors also complete a 2-week CNIB course that covers such topics as eye conditions, magnifications of various types, and teaching reading with peripheral vision fixation. Services are provided from CNIB offices in Saskatoon and Regina. For patients some distance from these centres, CNIB personnel travel to 6 or 8 towns outside the major urban areas once per year to see both new and repeat patients. Counsellors return a few weeks later to the same locality for follow-up visits, checking the suitability of aids provided and addressing issues related to emotional and psychological support. This service is only provided once per year because of workforce constraints at CNIB. The other two providers of low vision rehabilitation services in the province are the clinic affiliated with the University of Saskatchewan’s Department of Ophthalmology, namely, the Northern Saskatchewan Low Vision Rehabilitation Clinic at Saskatoon City Hospital, and the Southern Saskatchewan Low Vision Rehabilitation Clinic in the CNIB building in Regina, overseen by Regina General Hospital’s Department of Ophthalmology. Both clinics provide low vision assessment and rehabilitation training services and have been run in cooperation with, and with the full participation of, the CNIB as an equal partner for more than 30 years. When the author, a retired ophthalmologist from surgical practice, joined the Northern Saskatchewan Low Vision Rehabilitation Clinic in 2001, he voluntarily undertook further training in low vision rehabilitation as a clinical fellow in the low vision service under the direction of Dr. D.C. Fletcher in Fort Meyers, Florida. In Saskatoon, the clinic runs approximately 50 times a year, more or less on a weekly basis. About once every 6 weeks, a children’s clinic takes place where all the patients seen that day are children, from newborns to 18
CAN J OPHTHALMOL—VOL. 41, NO. 3, 2006
371
LVR in Saskatchewan—Gilmour
years of age. The low vision service has access to the equipment in the Eye Centre at Saskatoon City Hospital. The CNIB supplies specialized pieces of diagnostic equipment and low vision aids for demonstration to patients. During a regular low vision clinic, 6 patients are seen, each case taking about 1 hour and 15 minutes for a low vision assessment performed by the ophthalmologist followed by demonstration and trial of low vision aids by a counsellor provided by the CNIB. The low vision assessment includes an interview with the patient, assessment of visual acuity and field testing, and any other tests necessary. The CNIB counsellor then provides some initial training on the proper use of various low vision devices recommended to the patient, including high-tech devices such as Aladdin and Jordy video magnifiers (CCTVs). The counsellor may arrange for the loan of a device for use at home, thus affording patients the opportunity to try devices before purchase. Other aspects of rehabilitation are covered at the same time by the counsellor, such as accessing phone calls with the help of an operator or acquiring special bus passes. Instructions for purchase of devices are given to the patient at this time. In Regina, the Southern Saskatchewan Low Vision Rehabilitation Clinic provides low vision assessments by individual optometrists with an interest in low vision, plus rehabilitation training given by the CNIB staff. ACCESS TO
SERVICE
The majority of patients in need of low vision rehabilitation (30–50 per month in each district) have a CNIB form completed by their family doctor, ophthalmologist, or optometrist. The forms are sent to Winnipeg where a telephone triage is conducted to determine the patient’s situation. Patients are asked if they would like to see someone at the nearest CNIB office regarding low vision aids. At the same time, an attempt is made to confirm that the person has been seen by an ophthalmologist or an optometrist and that their vision cannot be improved further. Many patients make use of the offer of obtaining visual aids directly from the CNIB and are not seen at all in the low vision clinics. This is particularly the case in the south district because the clinics run by optometrists there have been less frequent in the past couple of years. At present, most patients go directly to the CNIB, receive devices on loan and instructions on the aids suggested, and are then reassessed a few weeks later. The patients seen at the low vision rehabilitation clinic in Saskatoon are therefore only a minority of all patients initially triaged from Winnipeg, the minority of patients not accessing CNIB services directly. Clients at the clinic are all referred from ophthalmologists or optometrists. Prior referrals from family physicians or
372
CAN J OPHTHALMOL—VOL. 41, NO. 3, 2006
home care nurses are redirected to ophthalmologists or optometrists to ensure that the patients seen at our clinic have a definitive visual problem that cannot be improved or cured by any surgical or medical help, and that their vision is significantly reduced. No specific cutoff limit for visual acuity is applied for determining access eligibility to our clinic. Our service is in demand and the waiting list, fortunately, has come down to a manageable 3 or 4 months. FUNDING
OF SERVICES
The Saskatchewan Medicare Insurance Commission pays $109 once a year for a low vision assessment performed by an ophthalmologist. If the patient is seen again within the year, one can only bill a repeat visit at $19.25. The Saskatoon Health District provides a travel allowance for the author, a resident of Prince Albert, for one journey to Saskatoon once a week. Saskatchewan Health, the provincial health care system, has the Saskatchewan Aids to Independent Living (SAIL) program, which assists patients with disabilities. Patients with vision less than 20/150 in the better-seeing eye will have standard visual aids supplied to them free of charge. This program is run under the auspices of the Saskatchewan division of the CNIB. High-tech items such as CCTVs are not covered. A
CLOSING NOTE
Ideally, one would like to see all patients go through a low vision assessment in a low vision clinic as a starting point of any contemplated vision rehabilitation program. After a low vision assessment performed by either an ophthalmologist or an optometrist with special interest in vision rehabilitation, suggestions for visual aids and rehabilitation training should be addressed in a multidisciplinary context with involvement of opticians, occupational therapists, clinical psychologists, social workers, and appropriate rehabilitation teachers and counsellors. Suitable funding for this process must be in place to obtain successful outcomes. It is essential that any low vision rehabilitation plans for the future include the experience of long-standing providers like the CNIB and the talent of professionals interested in low vision rehabilitation. REFERENCES 1. Saskatchewan Division Annual Report 2003–2004, Canadian National Institute for the Blind. Available: http://www.cnib.ca/divisions/saskatchewan/annual_report/ index.htm (accessed 2005 May 18). Key words: low vision rehabilitation, Saskatoon, Saskatchewan, SAIL program, multidisciplinary
From a suitcase carrying various magnifiers in 1955, the Saskatchewan Low Vision Clinic has enlarged— and the affiliated Canadian National Institute for the Blind (CNIB) has slimmed down through provincial amalgamation and budgetary cutbacks. Now, aids range from magnifiers to closed-circuit televisions, new technologies can be obtained on loan from the CNIB, and some financial assistance is available. Because Saskatchewan is still comparatively rural, with 60% of the population distributed throughout the province outside the two major urban areas, access to low vision services can be a problem. Increasing use of specialized counsellors, however, is helping deal with specific needs, and we hope to add psychologists, occupational therapists, and social workers as money is available. Réserve de loupes diverses qu’elle était en 1955, la clinique de malvoyance de la Saskatchewan a grossi et l’INCA, affilié, a réduit. L’aide varie maintenant entre la loupe et la télévision à circuit fermé, les nouvelles technologies peuvent être obtenues sur prêt de l’INCA, et une certaine aide financière est accessible. Parce que la Saskatchewan est encore relativement rurale, 60 % de sa population y étant répartie à l’extérieur des deux grands centres urbains, l’accès aux services d’aide pour malvoyance peut poser un problème. Le recours accru aux conseillers spécialisés aide cependant à combler des besoins particuliers et nous espérons y ajouter des psychologues, des thérapeutes et des travailleurs sociaux à mesure que croîtra le financement.
DEMOGRAPHIC
BACKGROUND
S
askatchewan is a large province, although most of its population is concentrated in the southern third of its area. Approximately 40% of Saskatchewan’s population is found in the two largest cities in the province, divided equally between Saskatoon and Regina. The remaining 60% of the population is scattered throughout smaller cities, towns, hamlets, and rural areas. Saskatchewan has the highest percentage of seniors per capita in Canada (14% compared with the national average of 11%).1 Such demographics have implications for the prevalence of age-related macular degeneration and the provision of low vision services in the province. HISTORICAL
BACKGROUND
The Canadian National Institute for the Blind (CNIB) was apparently the first to deliver low vision services in Saskatchewan. The province was divided into north and south service areas, with the dividing line passing through the small town of Davidson, approximately halfway between Saskatoon and Regina. This dividing
From the Department of Ophthalmology, University of Saskatchewan, Saskatoon, Sask. Originally received Nov. 11, 2005 Accepted for publication Feb. 16, 2006
line, established by the CNIB to conduct their work, split the population in half, with the south district served out of Regina and the north district out of Saskatoon. A low vision clinic was started in Saskatoon in 1955 by the head of ophthalmology and later dean of medicine at the University of Saskatchewan, Dr. R.G. Murray. Dr. Murray interested Dr. C.H. Andrews, an ophthalmologist from Prince Albert who was nearing retirement, in providing low vision ophthalmological care in Saskatoon on an itinerant basis every month or so. He arranged for him to take some training at Lighthouse International in New York and after that Dr. Andrews performed this function far longer than anyone had anticipated, almost 20 years. Once a month, Dr. Andrews travelled 150 km to Saskatoon and saw referred patients in the offices belonging to the 3 ophthalmologists affiliated with the Department of Ophthalmology at the university. He had a variety of visual aids in a large suitcase that he used in his practice. Once the aids had been shown to a patient and identified as useful, Dr. Andrews wrote to the CNIB office in Saskatoon suggesting such aids be supplied to the patient.
Correspondence to: G.R. Gilmour, MB, Northern Saskatchewan Low Vision Rehabilitation Clinic, Saskatoon City Hospital Eye Centre, 701 Queen St., Saskatoon SK S7K 0M7; fax (306) 764-4501 ; [email protected] This article has been peer-reviewed. Can J Ophthalmol 2006;41:370–2
370
LVR in Saskatchewan—Gilmour
LVR in Saskatchewan—Gilmour
One of the CNIB counsellors then visited the patient with the aids and demonstrated how to use them properly. After Dr. Andrews retired, a number of other ophthalmologists took over the position, but there was often a hiatus of many months before the next visiting ophthalmologist was appointed. Gradually the gaps between filling the position grew longer until eventually the optometrists in Saskatoon assumed the running of the clinic. Still, there was not a regular routine clinic on specific days. Optometrists would change quite often, too, so the waiting list, which had already grown significantly, continued to slowly increase in size until waiting times for an appointment to the clinic were between 14 and 18 months. In 2001, at the request of the Department of Ophthalmology at the University of Saskatchewan, the author assumed directorship of the clinic. By this time, it had become known as the Northern Saskatchewan Low Vision Rehabilitation Clinic, located in the Eye Centre at Saskatoon City Hospital. In Regina, a low vision clinic has been in operation for at least the past 25 years serving the vision rehabilitation needs of the southern part of the province. PROVIDERS AND
PRACTITIONERS
By far the largest provider of low vision services in Saskatchewan is the CNIB. For the purpose of providing services, the northern and southern districts each have a similar complement of service, fundraising, and administrative staff. Until recently, Saskatchewan and Manitoba were separate divisions of the CNIB; however, they have shared one Executive Director since 2002, and as of spring 2005, Saskatchewan and Manitoba have become one CNIB division. The Saskatchewan Executive Director moved to Winnipeg to assume leadership of the new division, and a new management structure has been developed. CNIB has a core set of services, and it endeavours to provide these services throughout the province. The service delivery methods, however, vary slightly from one location or district to another, depending on staffing and on other community resources or needs. Rehabilitation training in the province is done solely by the CNIB, and low vision assessments are provided by other eye care professionals. The CNIB has highly specialized counsellors available in a number of disciplines. There is 1 instructor for orientation and mobility in each district. There is a 1.5 counsellor position for the province for child and family counsellors for children to 18 years of age. There is a 1.5 counsellor position for each district for vision rehabilitation counsellors who work specifically with aids such as magnifiers and closed-circuit televisions (CCTVs).
There is a 1.5 counsellor position for each district for client services counsellors who help people adjust to their visual impairments and who ensure that clients are aware of low vision services and support available to them in the province. Also available and staffed are positions for employment counsellors, a rehabilitation teacher, and technicians and technical support who work with computers and CCTVs, JAWS, ZoomText, and other adaptive devices. Depending on their specific role, CNIB staff may come from such backgrounds as nursing, social work, education, psychology, or sociology before joining the CNIB. Once hired, counsellors receive specialized training in specific areas as needed for their positions. For example, vision rehabilitation counsellors complete the Johns Hopkins Vision Rehabilitation distance education course via the Internet, which is approximately equivalent to a 4-week program. Counsellors also complete a 2-week CNIB course that covers such topics as eye conditions, magnifications of various types, and teaching reading with peripheral vision fixation. Services are provided from CNIB offices in Saskatoon and Regina. For patients some distance from these centres, CNIB personnel travel to 6 or 8 towns outside the major urban areas once per year to see both new and repeat patients. Counsellors return a few weeks later to the same locality for follow-up visits, checking the suitability of aids provided and addressing issues related to emotional and psychological support. This service is only provided once per year because of workforce constraints at CNIB. The other two providers of low vision rehabilitation services in the province are the clinic affiliated with the University of Saskatchewan’s Department of Ophthalmology, namely, the Northern Saskatchewan Low Vision Rehabilitation Clinic at Saskatoon City Hospital, and the Southern Saskatchewan Low Vision Rehabilitation Clinic in the CNIB building in Regina, overseen by Regina General Hospital’s Department of Ophthalmology. Both clinics provide low vision assessment and rehabilitation training services and have been run in cooperation with, and with the full participation of, the CNIB as an equal partner for more than 30 years. When the author, a retired ophthalmologist from surgical practice, joined the Northern Saskatchewan Low Vision Rehabilitation Clinic in 2001, he voluntarily undertook further training in low vision rehabilitation as a clinical fellow in the low vision service under the direction of Dr. D.C. Fletcher in Fort Meyers, Florida. In Saskatoon, the clinic runs approximately 50 times a year, more or less on a weekly basis. About once every 6 weeks, a children’s clinic takes place where all the patients seen that day are children, from newborns to 18
CAN J OPHTHALMOL—VOL. 41, NO. 3, 2006
371
LVR in Saskatchewan—Gilmour
years of age. The low vision service has access to the equipment in the Eye Centre at Saskatoon City Hospital. The CNIB supplies specialized pieces of diagnostic equipment and low vision aids for demonstration to patients. During a regular low vision clinic, 6 patients are seen, each case taking about 1 hour and 15 minutes for a low vision assessment performed by the ophthalmologist followed by demonstration and trial of low vision aids by a counsellor provided by the CNIB. The low vision assessment includes an interview with the patient, assessment of visual acuity and field testing, and any other tests necessary. The CNIB counsellor then provides some initial training on the proper use of various low vision devices recommended to the patient, including high-tech devices such as Aladdin and Jordy video magnifiers (CCTVs). The counsellor may arrange for the loan of a device for use at home, thus affording patients the opportunity to try devices before purchase. Other aspects of rehabilitation are covered at the same time by the counsellor, such as accessing phone calls with the help of an operator or acquiring special bus passes. Instructions for purchase of devices are given to the patient at this time. In Regina, the Southern Saskatchewan Low Vision Rehabilitation Clinic provides low vision assessments by individual optometrists with an interest in low vision, plus rehabilitation training given by the CNIB staff. ACCESS TO
SERVICE
The majority of patients in need of low vision rehabilitation (30–50 per month in each district) have a CNIB form completed by their family doctor, ophthalmologist, or optometrist. The forms are sent to Winnipeg where a telephone triage is conducted to determine the patient’s situation. Patients are asked if they would like to see someone at the nearest CNIB office regarding low vision aids. At the same time, an attempt is made to confirm that the person has been seen by an ophthalmologist or an optometrist and that their vision cannot be improved further. Many patients make use of the offer of obtaining visual aids directly from the CNIB and are not seen at all in the low vision clinics. This is particularly the case in the south district because the clinics run by optometrists there have been less frequent in the past couple of years. At present, most patients go directly to the CNIB, receive devices on loan and instructions on the aids suggested, and are then reassessed a few weeks later. The patients seen at the low vision rehabilitation clinic in Saskatoon are therefore only a minority of all patients initially triaged from Winnipeg, the minority of patients not accessing CNIB services directly. Clients at the clinic are all referred from ophthalmologists or optometrists. Prior referrals from family physicians or
372
CAN J OPHTHALMOL—VOL. 41, NO. 3, 2006
home care nurses are redirected to ophthalmologists or optometrists to ensure that the patients seen at our clinic have a definitive visual problem that cannot be improved or cured by any surgical or medical help, and that their vision is significantly reduced. No specific cutoff limit for visual acuity is applied for determining access eligibility to our clinic. Our service is in demand and the waiting list, fortunately, has come down to a manageable 3 or 4 months. FUNDING
OF SERVICES
The Saskatchewan Medicare Insurance Commission pays $109 once a year for a low vision assessment performed by an ophthalmologist. If the patient is seen again within the year, one can only bill a repeat visit at $19.25. The Saskatoon Health District provides a travel allowance for the author, a resident of Prince Albert, for one journey to Saskatoon once a week. Saskatchewan Health, the provincial health care system, has the Saskatchewan Aids to Independent Living (SAIL) program, which assists patients with disabilities. Patients with vision less than 20/150 in the better-seeing eye will have standard visual aids supplied to them free of charge. This program is run under the auspices of the Saskatchewan division of the CNIB. High-tech items such as CCTVs are not covered. A
CLOSING NOTE
Ideally, one would like to see all patients go through a low vision assessment in a low vision clinic as a starting point of any contemplated vision rehabilitation program. After a low vision assessment performed by either an ophthalmologist or an optometrist with special interest in vision rehabilitation, suggestions for visual aids and rehabilitation training should be addressed in a multidisciplinary context with involvement of opticians, occupational therapists, clinical psychologists, social workers, and appropriate rehabilitation teachers and counsellors. Suitable funding for this process must be in place to obtain successful outcomes. It is essential that any low vision rehabilitation plans for the future include the experience of long-standing providers like the CNIB and the talent of professionals interested in low vision rehabilitation. REFERENCES 1. Saskatchewan Division Annual Report 2003–2004, Canadian National Institute for the Blind. Available: http://www.cnib.ca/divisions/saskatchewan/annual_report/ index.htm (accessed 2005 May 18). Key words: low vision rehabilitation, Saskatoon, Saskatchewan, SAIL program, multidisciplinary