Friday, August 19

4:30 – 6:00 WBU Session 4

Rehabilitation for blind and partially sighted persons

Presentation of Survey Results by Rebecca Sheffield

Thank you, Kirk.

Good afternoon distinguished guests, colleagues, and friends. I am so glad to be here and thankful to the World Blind Union, the Rehabilitation Committee, and everyone who made this presentation possible.

Imagine for a moment if, after leaving this assembly next week, you could continue to keep your fingertips on the pulse of the global blindness and visual impairment community. Imagine what we could learn if we could listen into the conversations and advocacy efforts happening in countries next door and around the globe. What would we do differently? What would we learn from what others have tried? A few years back when I was planning my dissertation research and wanted to focus on the Convention on the Rights of Persons with Disabilities, I reached out to Lord Collin Lowe, and he advised me, “we need to find a way to stop reinventing the wheel” on human rights and education for people with vision loss. We need to know what is going on around the world so that we can identify best practices that are working.

Well, unfortunately, I am not here today to unveil a time travel and teleportation machine that will keep us all connected over the next four years. But I am excited to report on research which gives us insight into rehabilitation services for people with vision loss around the world. I believe strongly in learning from and with international partners, and so I hope this study is just the beginning of more collaboration and research.

First, a little background information. Last year, World Blind Union and the American Foundation for the Blind planned and conducted research to better understand the strengths, challenges, and diverse characteristics of rehabilitation programs provided adults who are blind or visually impaired in countries around the globe.

As you probably know, rehabilitation services are often delivered through residential programs, community-based programs, and in-home programs. And so we developed a survey which focused on these three service models. The survey was translated from English into Spanish and French, and the WBU headquarters helped with sending electronic copies to member agencies around the globe. Forty-seven WBU member organizations responded to the survey.

What did we learn, and what can we do with what we learned?

Well, there is certainly more information in the report than I could possibly share this afternoon, but I would like to focus on three key findings: the who, the where, and the what of global vision rehabilitation services.

Who is being served, and who are the people who are not receiving receive services?

Where are people receiving services, and what trends have we seen and can we expect to see in location of services?

And finally, what services are being provided?

Let’s begin with the “who”

Who

On average, more countries are unable to serve the majority of the potential clients for the service they offer than are able to serve everyone who is qualified. Residential rehabilitation services appeared to be least likely of the three service delivery models to be provided to everyone who was interested and qualified for the services.

From the survey, we found that it is common for rehabilitation programs to focus on serving people with visual impairments, including those who may also have additional disabilities. Of the 33 countries that reported offering residential rehabilitation programs, 12 said that their residential programs served people with visual impairments who may also have additional disabilities. 36 countries reported offering community-based services, and of those, 15 offered these services to people with visual impairments who may also have additional disabilities. And of the 26 countries with in-home rehabilitation programs, 14 served people with vision impairments and other disabilities.

However, there were also many countries with programs which only serve people with visual impairments and no other disabilities. And somewhat less frequently, services are provided through non-vision-specific programs that serve a broad range of disabilities. The Estonian Federation of the Blind reported that, in Estonia, “every disabled person can theoretically get about 30 hours of rehabilitation services every year but in practice, very few can use that opportunity… only three small rehabilitation institutions specialize in services for blind and visually impaired children and adults.”

Another challenge – particularly in countries which have established job training and employment services – is that adult rehabilitation programs may not have the flexibility or expertise to support older adults and those who lose their vision later in life. In Austria, the Federation of the Blind and Partially sighted shared “the gap between adults who have an occupation and adults who are retired has increased. The offer for adolescents seeking employment has improved... Occupational rehabilitation will receive further funding but support for rehab-programs for adults with acquired sight loss is likely to decrease.” This is also a challenge in the United States, where recent workforce legislation may limit the ability of some rehabilitation programs to provide services to people who are not seeking competitive employment. Senior citizens with vision loss are also often disadvantaged by systemic government reforms.
The Australian Blindness Forum shared that, in Australia, “Disability and Aged Care reforms [are] taking place... Whilst those under 65 years will be catered for through the National Disability Insurance Scheme (NDIS), the risk of the specialist blindness workforce may be lost in a market driven environment where single disability organizations cannot survive. For those over the age of 65… the Aged Care sector is focused on frail aged home and residential support and does not cater for people under the age of 80 years to receive rehabilitation services after the loss of vision to remain independent. This cohort will be disadvantaged in the future and be at risk of social isolation, suffer from depression and enter residential support earlier.”

Now that I’ve shared a bit about who is being served in rehabilitation programs around the world, let’s look at where these services are being provided.

Where

Of the three types of service delivery models considered in this survey, community-based rehabilitation programs are the most likely to be offered and serve the most people. 73% of the countries responding to our survey anticipated future increases in services provided in the community, 12% expected these services to stay the same, and 15% projected a decrease in community services for people with vision loss.

Organizations reported that in-home rehabilitation services were also expected to increase. 64% of responding countries anticipated an increase, 13% anticipated a decrease, and 23% expected no change. Importantly, the in-home service delivery model is frequently used to provide services for older adults who may not be able or willing to travel, even to a community-based center, or who may benefit most from services delivered within the contexts of their day-to-day lives. For example, according to the National Committee of Welfare for the Blind in Japan, “the number of elderly people has been increasing, the services both at community and home are keenly important. More rehabilitation specialists and experts have to be employed by local communities in the rural area to meet the need of those people in rural area.”

Although most countries projected increases in in-home and community-based services, only 43% of responding countries expected an increase in residential programs to serve people with vision loss. “O-N-C-E” or ONCE, in Spain, described being part of a “global shift from residential rehab services to community-based services, based on the principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).” In Hungary an example of this shift is apparent in the report from the Hungarian Federation of the Blind and Partially Sighted, sharing that “there used to be one single Rehabilitation Centre, while during the past years several additional Regional Visual Impairment Rehabilitation Centers have been established.” Likewise, the Uganda National Association of the Blind explained, “Government services are now decentralized/brought nearer to people and communities where they live.”

Another reason for the shift away from residential programs is that, in comparison with other service delivery models, residential programs often serve the fewest total number of people in a country within a given year. Countries which rely on these programs as an important component of their rehabilitation systems reported that they do not have the capacity to provide services to everyone in need. The Sri Lanka Council for the Blind and the Sri Lanka Federation of the Visually Handicapped reported, “The limited resources and inadequate funding makes it a challenge to expand the program and include more participants.”

Regardless of the service delivery approach, geographic and transportation factors significantly impact both provision of services and access to services. The National Organization of the Blind of Brazil described in their response to the survey that the “huge dimension of the country” is a major challenge for providing services to all Brazilians with vision loss. In Cyprus, the Pancyprian Organization of the Blind reported that a major challenge for participants is “traveling to the venue where the programs are offered due to very poor transportation service,” and in Equatorial Guinea, the National Organization of Equatorial Blind has directly addressed the accessible transportation issue by providing transportation services themselves: “We pick them up every day and take them back home when they finish their rehabilitation and recreation sessions.” Remote and rural areas pose some of the greatest challenges for providing services; however, even urban areas can pose limitations to services if the public transportation services and/or pedestrian pathways are not accessible.

Additionally, countries from the U.K. to the Philippines are including peer support as a part of their in-home services. The Norwegian Association of the Blind and Partially Sighted offers a peer-service in which, “individuals, who want a home-visit, can get a visit from a peer. Many feel alone about their situation and they don't know about the opportunities and don't know anything about their welfare rights. To have a meaningful conversation with an experienced person with low vision can contribute to inspiration and more faith in the future. The organization recruits, educates and tutors equal persons (peers).”

So I have shared a bit of what we have learned about who is receiving services and where these services are being provided. The final aspect of the report, and perhaps the most critical, is the “what” – what specific services are being provided, and what have we learned about the quality of those services?

What

Whether services are overseen by public or private organizations, all countries reported a need for more resources in order to extend and improve (or develop and initiate) rehabilitation services to people who are blind or visually impaired. Often these resources hinge on recognition of a need for services at a national level, as reported by Association CEFODEV in Chad, where “There is still no formal rehabilitation system for blind and partially sighted persons... While a Disabled Persons Act was developed, that would provide protection for persons with disabilities, this was not signed by the President. As a result, there is no government support of services or programs and all programs are delivered by private organizations. As a consequence, there is no money to develop rehabilitation programs.” Even in countries with multiple, established service delivery models, services vary in quantity and quality from location to location because – as was described by the Union of the Blind in Bulgaria – service levels “depend on the budget and the number of staff serving there.” Additionally, with advances in access and accessible technology, rehabilitation providers increasingly require more equipment and funding to provide appropriate tools and training.

Not surprisingly, the survey responses revealed variations in the quantity and types of services provided. Travel training and orientation and mobility were provided in over 85% of responding countries.

All 25 of the responding countries which have in-home service programs offer travel training and/or orientation and mobility in at least some of their programs. However, 15 of the 36 responding countries with community-based rehabilitation programs reported that few or none of their community-based programs offer travel training or orientation and mobility. All but 5 of the 34 countries with residential programs offered at least some travel training or orientation and mobility in these programs.

In contrast, job and business development services were offered in less than 62% of responding countries. Only 13 of the 24 of the responding countries with in-home training programs offered any job and business development services in those programs. Only 20 of the 34 countries with community-based programs offered any job/business development services in those programs. Half of the 32 responding countries said that some or all of their residential programs offer job and business development.

Conclusion

I have briefly reviewed what the survey reveals about the who, where, and what of global rehabilitation services for people who are blind or visually impaired. I hope you will find time to review the entire report and contact us if you have questions.
As a researcher, teacher, advocate, and policy analyst, I believe that we have identified many areas of strength and growth, but there are certainly areas for improvement.

Perhaps most exciting to me, numerous organizations report recent, significant changes in national legislation, policies, and services, often in connection with the ratification and/or implementation of the United Nations Convention on the Rights of Persons with Disabilities. This time of change is both an impetus for raising public awareness of disability rights as well as a unique opportunity for organizations to engage with their governments and with international partners in shaping quality rehabilitation programs. The National Union of the Blind in the Congo shared that “the adoption of the UN Convention on the Rights of Persons with Disabilities and the subsequent adoption of internal legislation has resulted in significant gains with respect to awareness on the part of government of to the situations faced by persons with disabilities.”
The National Association of the Blind in Mauritania wrote that, “Given… the establishment of a disability advocacy strategy and its implementation in accordance with commitments required as a result of ratification of the UN Convention, we are hopeful for improvements with respect to the rehabilitation of the blind in all categories.” World Blind Union member organizations are playing key roles in helping influence new policies and legislation, as with the Mongolian National Federation of the Blind, which “is negotiating with the respective Ministry of Mongolia on the issue [of making] the rehabilitation training center [a] Vocational Training Center,” which they anticipate will lead to an increase in services and participants.