by Ann S. Williams, M.S.N., R.N., C.D.E.
This column focuses on providing information to help people make their diabetes care fit their needs and their lives.
Last year, the Board of Directors of the American Association of Diabetes Educators (AADE) accepted and published the new "Position Statement on Diabetes Education for People With Disabilities." This action makes AADE the first of the national diabetes organizations in the United States to officially affirm as a matter of policy that people who have disabilities have a right to receive reasonable accommodations for their disabilities in both the process and the content of diabetes education. This is good news for people with disabilities, who often have not had full access to the particular tools, techniques, and information they need for fully independent diabetes self-management.
What does this position statement mean to readers of the Voice of the Diabetic, many of whom are blind? This article summarizes what the position statement says, gives an example, and also gives a few of my own thoughts about how people with disabilities can use the position statement to get the services they need.
If you want to read the full text of this position statement, you can find it on AADE's Web site at: http://www.aadenet.org/PublicAffairs/PositionStatements/positionstateindex.html.
Click on "Diabetes Education for People with Disabilities".
What does the "Position Statement on Diabetes Education for People With Disabilities" say?
To understand exactly what the position statement says, it's important first to clearly define what we mean by "disability". The position statement uses a definition very similar to that used in the Americans with Disabilities Act: "an impairment that substantially limits one or more major life activities." For a person with diabetes, both diabetes education and the activities of diabetes self-management, like monitoring blood glucose, drawing insulin, inspecting feet, and exercising, are part of that person's major life activities. So any impairment that substantially limits a person's ability to participate either in diabetes education or in diabetes self-management activities is a disability. Examples of disability include, but are not limited to: amputation of all or part of a limb, blindness, deafness, low vision, learning disabilities, numbness or stiffness in the hands, mental retardation and developmental disability, partial or complete paralysis of a limb, and serious mental illness.
This definition focuses on function, not on specific numbers or techniques that measure abilities (like visual acuities and fields), and not on the source of the disability. So, for example, anyone who has a condition that makes it difficult to read print, or to see lines on a syringe, has a disability, whether that person is legally blind or not. And anyone who cannot use standard diabetes equipment because of low vision or numb fingers has a disability, and should receive accommodations in diabetes education, even if other parts of that person's life are not affected.
The core intent of the position statement is contained in these two sentences: "The AADE recognizes the special diabetes education and care needs of people with disabilities. The Americans with Disabilities Act requires that diabetes educators provide reasonable accommodations for people with disabilities in response to their particular individual needs."
In other words, all diabetes educators are required to provide reasonable accommodations for people with disabilities in order to make diabetes self-management education accessible and usable. Furthermore, they are required to provide diabetes self-management education equivalent to the education provided to people who do not have a disability.
The position statement is quite specific about two aspects of the responsibilities of diabetes educators. First, it states "Disabilities do not necessarily preclude effective diabetes self-management. People who have disabilities and diabetes are usually capable of caring for themselves when they are provided with appropriate, adaptive diabetes self-management education, tools, and techniques." This means if a person has a disability that makes it difficult or impossible to use a standard diabetes tool, like a syringe or a blood glucose meter, or a standard technique, like visual foot inspection, a diabetes educator working with that person is required to teach them how to use adaptive tools and techniques for those tasks.
The position statement further states, "People who have disabilities should receive diabetes education that is equivalent to that received by people without current disabilities. Disability per se should not be a barrier to the pursuit of desirable levels of glucose control." This means ALL diabetes self-management knowledge areas and skills normally provided to people without disabilities should also be provided to people with disabilities. The education should cover all the content areas listed in national standards. Furthermore, intensive management should be just as available to disabled people as it is to non-disabled people.
An Example
Let's look for a minute at how this position statement would affect a real person I know. I'll call him Carl (not his real name).
When I first met Carl, he was 54-years-old. He had lived with type 1 diabetes for 32 years. He said most of that time, he had not had good diabetes control. His vision had been measured at 20/250 in his right eye, and 20/200 in his left. He told me his vision fluctuated a lot, depending on his blood glucose levels. At its best, he could read a little bit of very large print, and at its worst he could barely see at all. He had some neuropathy in his hands, and he had an old foot injury that left him with a right-sided limp. He had to wear a special shoe on that foot.
Before his vision loss, he had worked in a factory, and lived alone. Now, he was living with his brother and sister-in-law, and none of them were happy with this arrangement. "But," said Carl, "what can I do? I have to have someone draw my insulin for me." His sister-in-law is drawing his insulin for him every time he needs it. He is using a 70/30 mixture of NPH and regular insulin, given twice a day.
Let's consider what the "Position Statement on Diabetes Education for People with Disabilities" requires me, as a diabetes educator, to do for Carl. First, as I would for anyone without a disability, I should find out how much Carl knows and what he does in all the major areas of diabetes self-management--medications, monitoring, nutrition, exercise, prevention and screening for complications, and stress management. While I am doing this assessment, I should also ask Carl about how his disabilities and his life situation affect what he does in each of these areas. For example, we already know someone else is drawing his insulin. Is Carl doing his own blood glucose monitoring? Is he getting any exercise or physical activity? Is he inspecting his feet? How is he dealing with the stress of having a disability, of having diabetes, of losing his job, and of living with his brother?
I should also think about how Carl's disabilities affect the diabetes education process. I usually give print handouts to people who have good eyesight, to help them remember the things we have discussed. But I already know Carl won't be able to use my standard print handouts, so I have to think about what kind of handouts Carl would find useful. He might be able to use large print, but because he cannot read large print when his vision is at its worst, he might prefer to have his handouts on audiotape, or on a computer disc. (I am not including Braille as a possibility here because Carl has not yet had blindness rehabilitation services, so he has not yet had a chance to learn Braille.) The best way for me to find out what sort of materials would be best for Carl is simply to ask him what he would prefer.
Once I have assessed Carl's situation thoroughly, I would be ready to plan his care. A reasonable plan for Carl might include the following adaptive techniques:
* A talking blood glucose meter he could use independently.
* A way to measure and give his insulin nonvisually, perhaps using a tactile tool like the Count-a-Dose or an insulin pen.
* Up-to-date nutrition teaching, with reference materials in a format Carl can use.
* Planning for a safe and appropriate form of exercise. Because Carl has a foot injury, I might refer him to a physical therapist to help with this.
* Nonvisual foot inspection, using his hands and his sense of smell.
* Audiotaped stress management exercises, such as relaxation and imagery.
* All handout materials on audiotape.
* If using a videotape as part of Carl's diabetes instruction, I would sit near him and describe visual portions of the video to him.
In addition, because I know Carl realizes his diabetes control was not good in the past, I should discuss with him the pros and cons of a more intensive diabetes regimen. I should give him enough information to decide whether he would like the flexibility and greater control of using multiple injections or an insulin pump. Of course, the decision about whether to actually pursue intensive management should be made in cooperation with his doctor. But I have a responsibility to make sure Carl has enough accurate information about the treatments, tools, and techniques available so he can decide what he wants to choose for himself.
What Does This Position Statement Mean To You?
If, like many readers of Voice of the Diabetic, you are blind or otherwise disabled, this position statement could help you get the diabetes education you need. Suppose, for example, you are blind, and you worked with a diabetes educator four years ago. At that time you were never offered any ways of monitoring your blood glucose independently. Or suppose that five years ago you went to a diabetes education class, and you found the experience very frustrating. Maybe you wished you could have take-home materials, because there was too much information to absorb all at once; but the take-home materials were only available in print. Or maybe the class used a lot of videos, and although you could hear the soundtrack, some of the important information you need was shown visually on the screen, and not in the soundtrack. Or, suppose you would really like to try using an insulin pump. But you have hesitated to ask for this, because you think that your diabetes educator and your doctor will tell you can't do that since you are blind. This position statement applies to exactly these sorts of situations.
Your first task will be to find a diabetes educator to work with. Your doctor, or other people with diabetes, may be able to tell you about diabetes educators who are available in your area. It's good to get a referral this way, since a referral from someone you know might give you some idea of the educator's skills and reputation. Your doctor, in particular, may also have information about which local diabetes educators are covered by your health plan. But if you're having trouble getting a referral to a diabetes educator from people you know, AADE has a referral line through which you can get the names and contact information for diabetes educators in your area. The phone number is 800-TEAMUP4, or 800-832-6874. Or, you can check the AADE Web site at: http://www.diabeteseducator.org/FindAnEduc/index.html
Once you have found a diabetes educator and made an appointment, I would suggest that you prepare carefully for your first visit. You should be ready to tell your educator what kinds of adaptations would help to make the diabetes education meaningful to you. You don't need to know ahead of time which adaptive tools you want to use, but it will help if you know you want to try adaptive tools, say for insulin drawing and blood glucose monitoring. And it will help a lot if you can tell your educator what format will work best for you in handouts. It's also a good idea to let your diabetes educator know you are aware that AADE has a Position Statement on Diabetes Education for People with Disabilities. You might find it helpful to tell your educator where to find a copy of this position statement.
You might consider asking your educator if she or he has any experience working with other people who have your disability. It's probably true many diabetes educators will be a bit anxious when they first encounter a person whose situation they don't understand. But in my experience, most diabetes educators are glad to have a chance to improve their skills and learn how to serve their patients well. So if your educator has no experience with your disability, you might want to offer to help educate your educator about your disability and how it affects you. If you don't feel you can do this, you could tell your educator about organizations, like the National Federation of the Blind (NFB), that could provide accurate information about your particular disability. (Contact the NFB at: 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; Web site: http://www.nfb.org) You could also suggest your educator talk with other diabetes educators who have more experience with your disability. (Since 1987, AADE has had a Visually Impaired Persons Specialty Practice Group. These educators often share techniques with their colleagues who are working with a visually impaired person or blind for the first time.)
Thinking this all through ahead of time, and sharing it at your first meeting with your diabetes educator, will help you get what you need. If, in spite of your preparation, your educator balks at providing reasonable accommodations for you, a polite but firm reminder of the position statement should go a long way toward assuring you get what you need. Both the position statement and the Americans with Disabilities Act clearly state you have a right to reasonable accommodations. But if you're still having trouble getting needed accommodations, remember the old adage, "You catch more flies with honey than vinegar." You can remain firm about your needs, and helpful in pointing out how your diabetes educator can best serve you, without being harsh or rude. If you are in a difficult situation, it might help you to remember the professional you are dealing with today will probably meet other disabled people in the future, and the memory of the encounter with you will affect how those other people will be treated.
If you have done your best to explain your needs, and you are still not getting reasonable accommodations, you could simply "vote with your feet." Find a new diabetes educator who is more willing to accommodate you.
Since the Position Statement on Diabetes Education for People With Disabilities is relatively new, it is likely that right now many diabetes educators do not know how to provide reasonable accommodations for people who have even common disabilities. However, the more people with disabilities ask to receive diabetes education equivalent to what is given to non-disabled people, the more diabetes educators will learn how to provide reasonable accommodations. Already, I have seen many more continuing education offerings for diabetes educators that include information about diabetes self-management for people with disabilities. I certainly hope the time will come when diabetes self-management education is fully accessible to ALL people who need it, including people who have disabilities.
From the Editor: The National Federation of the Blind, with over 50,000 members, is the largest organization of blind people in existence. The Federation's collective expertise, not just in diabetes and blindness, but in all manner of conditions that can cause blindness or occur alongside it, is available to blind people, health professionals (including diabetes educators), family members, prospective employers, and anyone else who wants to know. Much of the NFB's literature (available in many formats) is about coping, about not allowing blindness or any other disability to interfere with each of us living a full, independent and productive life. Any diabetes educator wishing advice about training a blind person should contact the Federation; telephone: 410-659-9314; Web site: www.nfb.org.