Support Groups

Our Stories Photo Exhibit Featured in Worcester Telegram and Gazette

Photo of Dennise from Our Stories exhibit, smiling in wheelchair

The "Our Stories" photography exhibit, on display at the Lamar Soutter Library on the campus of UMass Medical through the end of October 2014, has been featured in an article in the Worcester Telegram and Gazette.

The article, written by Geraldine Collier, looks at the stories of some of the individuals featured in the piece and how their lives were affected by the deinstitutionalizion movement, as well as getting insight into the creation of the piece from photographer Meg Landers and MAB CEO Barbara Salisbury.

To read the full article, click here.

To learn more about the "Our Stories" photo exhibit, click here.

Partnerships Provide Adaptive Sports Opportunities for Adults with Developmental Disabilities

MAB partners with organizations such as Spaulding Rehabilitation Hospital and AccesSport America to provide adaptive sporting opportunities for its Adult Disability Services (ADS) clients. Recently client Zach got to try adaptive windsurfing!

"The ASA staff are really great in general, and particularly great with Zach," said MABWorks Vocational Counselor Patrick Giblin. "They coordinated to set up windsurfing for Zach and were very excited for him to participate in windsurfing."

The "board" was actually two smaller "boards" with a larger-than-usual standing platform in order to accommodate two sails (one for instructor in front, one for Zach in back). A standing bar was installed so that Zach could support himself with the bar while also manipulating the sail. "Zach was euphoric and it was great to see him surfing," Patrick said.

Additionally Zach has other opportunities in the community to focus on physical therapy in different, interesting ways. He attends a YMCA water aerobics class that allows him to work on strengthening muscles using floatable foam dumbbells and noodles for support. He also works with a Spaulding Occupational Therapist to address his individual needs. Spaulding OTs are great at working with MAB staff members to tailor programs for clients.

Community Partner Award Recipients

Spaulding representatives pose for a picture with Zach and MAB CEO Barbara Salisbury

At MAB Community Services' Annual Meeting on Oct. 8th, we took the time to honor a number of individuals and organizations with Community Partner awards for their continued support of MAB and our goals:

  • Spaulding Rehabilitation Network was presented their award by Zach, a MAB client who, thanks to our partnership with Spaulding, was able to learn how to windsurf through the Adaptive Sports program. As a slideshow of Zach’s adventures played, he embraced Spaulding Network President David Storto, who, highlighting Spaulding’s commitment to our shared mission, personally came to accept the award alongside Oz Mondejar, Senior Vice President of Mission and Advocacy, and Mary Patstone, Director of Adaptive Sports and Recreation.
  • The Memorial Foundation for the Blind was honored for their support in funding our vision rehabilitation services in Worcester County. Over the past year alone, MAB’s vision rehabilitation services have grown by 300%, and MFB has been a large part of our incredible recent expansion.
  • Gail Schechter, who worked with Ivy Street School students this past summer in a photography workshop, was presented her award by one of our students, who remarked that Gail “helped me do projects that look like art” and noted that “she is an awesome teacher.”
  • Dr. Steven Perryman was honored for allowing our Team With A Vision to use his Hopkinton optometry office on the day of the Boston Marathon. Our runners noted that having access to a private, temperature-controlled environment with kitchen and bathroom facilities makes their race day experience exponentially easier and helps them to perform better.

Vision Rehabilitation explained by the Expert: Q&A with Dr. Jamara

DR. JAMARA: So many people say to me when they finally come to low vision services, “how come I didn't know about you sooner?” What happened is that they had gone for their reg[ular] eye exams. In their conversations with their doctor, they were able to say, ‘I have this problem,’ they gave them some solutions, but it didn't meet their needs. As a matter of fact, standard eye care couldn't improve their vision. So they began this kind of search of doctor to doctor, but the fact that low vision rehabilitation wasn't brought up as an alternative was a problem for them, so they had to seek additional care. One of the things I realized is that so many people are missing out on things like magnification, tints for glare, so we started this idea of getting the information out to the practitioners so they could refer to low vision and start that network. It's interesting because it's kind of unnatural for me since I'm the kind of old-style doctor who sits and talks with the patient a little bit. What happens is I find the patient tells you what's wrong and they also tell you how you can help them. A lot of times that takes a special event, that takes a special visit. One of the things that we learned is that the patient has to come in prepared for the exam. They have to come with that knowledge that they're going to be presenting their information to the doctor, who needs that thinking time to process it and to get to be able to get them in that direction. This is an element that's missing in their care. I say this at the College of New England College of Optometry. We're always asking the students to become very efficient in their exam. We give them an hour and a half, the next year an hour, and then 45 minutes and then finally they're down to 25 minutes when they're in practice. We're constantly getting them to critically think faster in the examination, and I think that's important to have the regular eye exam volume that's expected of them. On the other hand, I think the pendulum has to swing back a little, to say “tell me about your vision. What is it that you're missing doing?” And then being able to identify, maybe in the electronic health records, what is a piece that could come up, and pop up and slow the patient and the doctor to have to say let's head in another direction like low vision rehabilitation.

MABVI: Now elaborate on what you're able to do in a low vision exam that then comes up with some recommendations of things that could actually make a difference for the person who has an uncorrectable vision problem.

DR. JAMARA: That's a great point because the very first thing that everyone has to decide or understand or know, both the doctor and the patient, is that this vision problem is not going to be corrected. There's no eye glass, no contact lenses, no medication or surgery that's going to give the patient their vision back. Once that is identified, then we will say “well what you're going to need is something to take its place. We're going to have some type of device or resource that's going to take the place of the vision loss that you just experienced.” Then what we'll go into is asking questions about their goals, “What is it that you miss the most?” Identifying that, say if it's reading, and then finding out the size they can see, say 20/100, what is the size they want to see, which is 20/550, which is the size of regular print, and then you have to see and magnify whatever they're looking at two or three or four times. Once you establish that, you find what's their sensitivity to light, and then a big thing that's hard to detect, it takes that little extra time, is do they have a blind spot right in the middle of where they're looking? They'll often say, I can see you, but I can't see your eyes, I can't see your nose. That blind spot has to be moved over so they can look around it. And this is something some people learn to do and some people have to learn how to do. So with those things identified—their magnification, their contrast sensitivity and their scotoma or blind spot—that leads us then to the prescription of the magnification or the lighting that's required, and that's not done in the regular eye exam. That's something that either has to be the optometrist that we trained would have the patient back to do that or that patient could refer to low vision services.

MABVI: You talk about moving the scotoma or the blind spot over. Can you elaborate on that?

DR. JAMARA: Once you discover that that's what the patient needs, they have to understand both where their blind spot is and how they're going to move it, then you begin this process of how do you train to do that? And that's where my occupational therapist comes in. We would make a referral to the OT so that they could do the eccentric viewing training, and this would go along with the fact of using the magnification, so that's another training aspect. And then sometimes even wearing eyeglasses, you would think that eyeglasses are pretty straightforward, but then what's the distance that the glasses are made for? So the occupational therapist is the main part of that eccentric viewing process. Once the patient can get the good skills in doing this say for example, a lot of times if the scotoma is right in front of you, and you want to move it up to the right by looking up right, you may have to move up right and just move the paper right in front of you. So this is a new way of reading, and this is something that the OTs are very good at introducing to the patient.

MABVI: If I have an optometrist, am I adding another doctor by going to a low vision exam or are they going to replace the eye care that I already receive?

DR. JAMARA: That's a great question because I think that's one of the reasons there's confusion about what to do. I have a lot of patients who say, ‘I'm going to see you but don't tell my other doctor’ or something like that. And that's good that they have that loyalty, but there's really no conflict. What the patient should feel is that they are entitled to this additional care. It's not even a conflict in their insurance because the low vision exam is coded differently. But to get back to the original eye exam, say you have your annual eye exam with your local optometrist in the town that you're in. That examination is essential to get to the level one where you say that this patient has a visual impairment that is not correctable by glasses, surgery, medication or any other contact lenses. Once that's established, then that optometrist, if they've had the recent training here at the New England College of Optometry, would do level 1 low vision, and that's where they would actually begin the process of testing for contrast, scotoma and magnification, and I'm hoping that as we look at the fact that there's an optometrist in virtually every town in Massachusetts then we would already have a network of low vision [doctors]. Very often, that aspect of the scotoma or the magnification goes beyond this sort of general practice of the local optometrist and then we would want that network of the advanced vision specialist. So now that's the same as if your internal medicine doctor would be referring you to the diabetic specialist. You’re still the patient of the internal medicine doctor, but you're getting a consultation with the diabetic specialist. In our case, you're still the patient of the optometrist or ophthalmologist practice, but you’re getting an evaluation or consultation on low vision, and either you can seek that out or the optometrist or ophthalmologist can do that for you or anyone in the community. I get a lot of referrals from the Mass. Commission for the Blind. So the patient is registered, goes to enroll at the Mass. Commission and then the Commission actually refers the patient to me. Then I will send a letter to that doctor who is taking care of them saying the patient is returning to you, but I'm intervening at this point with low vision recommendations. It's very well-received. It's sort of one of the few things that everyone's happy that you're working on it.

MABVI: What qualifications would a low vision specialist have that are different from my regular optometrist?

DR. JAMARA: I think what they would want to be able to do, first of all, is to be able to put low vision into their practice. I mentioned that a regular eye exam probably, in most practices, is about 30 minutes. In the low vision evaluation, time is a factor that actually takes longer to do this low vision about. You're really working a little more in the history asking the patient their specific goals. We actually already know what's wrong, but what we don't know is what is needed to replace that life activity that they're missing, could it be reading, or driving or something. So what we would be seeing is that the first thing you would do in that practice to set up for low vision is to add a double slot. Instead of one slot of 30 minutes, you might have two slots, and that is your low vision patient section. Then you might in your practice do that every Wednesday morning or every Thursday afternoon. You have to organize the practice to allow for that extra time. A big question that practitioners say, well I could see two patients in the time of seeing one. But what we do in low vision rehabilitation is billed according to time. I tell my students that I'm a taxi driver. When I walk in, just put down when I came in, and then you put down when I exit, and that time is what is actually billed to save Medicare or the other insurances. How much direct time did I spend with the patient? And then you reimburse for that. And then the other aspect of a practice is that the low vision level-one practice that might set aside that occasional day for low vision, either once a week or once a month, also needs to have some different devices: low vision magnifiers, electronic magnification. And I think what most practices are wondering is what devices should I have on hand? They have all their regular equipment; what is this additional magnification device? The idea is there are what we call introduction kits….which is what we would be using to provide initial magnification. And if the patient needed more than that, then that's a good reason for that referral. In the low vision advanced specialty, such as the New England Eye Commonwealth, we have a tremendous number of devices, magnifiers. You actually come to a place that has an assortment of them, and when we don't have them I like to send people to the Carroll Center, which is in Newton and they have the Carroll store, which has many more devices that patients can look at. When we start looking at a device that intervenes for what you're reason, we're starting to look at a group of resources. The Occupational Therapist is a resource, the talking book library at Perkins is a resource, things that aren't devices, but things that you would do as a doctor to refer your patient for additional services.

MABVI: Talk about your partnership with the occupational therapist.

DR. JAMARA: When we're talking about the occupational therapist, what is essential about that is that when you educate the patient of the services they need or the skills they need, we have just that one hour. We're going to identify a list of things that are going to be needed in their regiment to actually get beyond that visual impairment problem and get to their quality of life. Optometrists for the longest time had been trying to give the patient the device and say, "this is something most people know how to use: the magnifier, like Sherlock Holmes"--everyone knows how to do that and that wasn't true. That wasn't the fact. There were things that would fall through and what the occupational therapist does is actually go to the home. And this is where the optometrist has no information. They go to the home, they see what the lighting is like; they see what the chair is like that they're trying to read in, and my electrical devices don't work in the dark and they don't work with a glaring window. Only the OT can figure this out. We ask for first a safety evaluation from the occupational therapist to make sure that medications are appropriate, that the food hasn't expired in the refrigerator, things like that that would keep the patient safe. And then we ask them to do a lighting evaluation, where they actually measure the luxe or the brightness of the rooms and the hallways and the stairways. Then we ask them to look at their working situations. They may be at a desk where they write checks, and to move the light around so that's appropriate. Then the OT will train them with the device and write us this report so that when the patient returns, I can build on this with the patient and change or modify devices based on the recommendations. Before OT was part of the low vision rehabilitation, we had a tremendous perception of low vision that we would prescribe devices in the office that worked and then they went in the drawer at work. We just did a paper a year ago, and it was called the abandonment study: how many patients abandon their low vision device? Since I've been using occupational therapy with the low vision services, I knew that we were going to score very well at the New England College of Optometry and the New England Eye Institute. This was done in four other centers across the country, and the abandonment rate was 13 percent. This advent of having the occupational therapist join us has really changed that. I think anybody would've guessed the abandonment rate to be 70 percent, and now that's been flipped around. So this is a critical piece and when I talked to occupational therapists, they're very enthusiastic about getting involved in low-vision rehabilitation. I think the key was that Dr. Donald Fletcher, this was back maybe 12 years ago, when he put through the reimbursement for Medicare for OT. When that went through, optometrists now have the prescription ability to write the prescription, to have the occupational therapist to see the patient for an evaluation and follow up visit and it's something that's not very well advertised. And this is for all optometrists, not just low vision specialists. This type of care or resource is one of the essential things that can be done.

MABVI: You talked about a patient coming to the eye exam, the patient may have goals that they want to bring with them. Can you talk about what some of those specific goals may be?

DR. JAMARA: There's usually two main things that they come in with. I would say almost 80 percent of the patients I see are people who had vision who lost it through macular degeneration or glaucoma or diabetes, one of those conditions. So they are missing something they did. For a lot of people actually it's driving, and for another group of people it's their reading or their independence. They used to do their own checkbook, and now someone else has to do it. And, you think, that's nice, someone's helping them. But to reveal your finances, that's a big step in any relationship, so they'd like to hang on to that opportunity to manage their own money. So these are goals that they tell us, but it's actually coming back to those minutes. The patient doesn't pop in and say, "I want to write my check so I can stay financially independent." They come in and they have to talk about their loss, this fact that they lost their vision and explain to the doctor and maybe one more time to someone else that they have lost this and they're very disappointed and grieving that loss of their vision. That gives the doctor the time to sort of connect with that patient. One of the things that I find the most rewarding is that once you make that connection, then they start telling you those goals. I think they'd say, "well, why not have a survey up in that waiting room, everybody just check off your goals and someone will see them," but they don't even process what their goal is. They need to go through these steps almost, to tell you why they are here, why they have decreased vision and why they're disappointed and you say, well what would I help you to do, and they say "see better" and then you say "see better doing what?" If they don't have ideas, I can start with some lists by saying "how do you take care of your finances," or "how do you take care of grocery shopping." And then they start to say, "well, you know, what I really miss is, I used to play bridge and this is my social group and I feel really embarrassed not being able to see the cards anymore." And it could take 20 minutes to get to that point. That's where that low vision history has to have some of that extra time set aside. But the common things are some near activity, so we're going through the process to make magnification, but the other common theme is driving. I lecture both on the visual impairment and magnification, but I also lecture on elderly driving and driving with a visual impairment. It's quite a visual impairment. You'd think right away, ‘no, don't drive with a visual impairment.’ But it's a very interesting thing about how much vision plays, how much skill is involved. And a lot of people can actually return to driving with a bioptic telescope and other things like that. Those are two areas that are very critical for that, the independence with the driving and the personal finances.

MABVI: If I have physical rehabilitation for my leg because it hurts, it makes my leg better, is visual rehabilitation going to make my vision better?

DR. JAMARA: That's a great, great question because the theme has to be, if you walked in with 20/200 vision, unfortunately ,you're going to walk out with 20/200 vision. The idea is, though, your behavior coming in with 20/200 vision should be changed. You should have a new way to process things in daily life that makes you more efficient. What we say in rehabilitation is that the patient is at this level, and we're asking to maximize their visual efficiency. So I may move them up to here after that first visit because the one thing they couldn't do is read their mail. They were very disappointed that they had to leave it until their child came and read the mail for them. I've provided them with magnification. Now they can read their mail. They still don't feel much better about so many things, but that one thing was a success and we have to build on that and say, "what's the next thing?" and there's things to help them get back into their social group again. I think vision rehabilitation isn't something that someone measures. I had a funny case where I had two patients and I saw the first patient and the other one was in the waiting room. I provided magnification, they provided their goals. This patient was independent, and as she was leaving the patient in the waiting room recognized her and said, “hi how are you?” and said “I'm here to see Dr. Jamara too,” and she said "I hope he can help me," and she said, "oh, don't worry, he didn't help me." So what they measure as return to vision is always in their mind, but the constant education is that their visual efficiency is better, so they are functioning better. I think they appreciate it. When I called people on the low vision abandonment study and asked are you still using your device, they said, "I'm using it now as I'm talking to you. I couldn't get through my day without it." They still grieve losing their vision, but they feel very empowered to have some answer to being unable to participate in life.

MABVI: We know that people with vision loss are less compliant with medications, are at a higher risk for falls, and are more likely to be placed into a nursing facility. Could you talk a little bit about the positive clinical outcomes that are generated through low vision rehabilitation?

DR. JAMARA: That's a great list of things because that is being able to keep their independence. All of those things happen…all of those things get progressively greater as their visual impairment increases, especially someone who has side-vision defects and they have that risk, or they have the problem of seeing their medications and understanding which one they've taken. Low vision rehabilitation takes those particular things and looks at them for the patient. What's an interesting area are the new digital devices that are available, and it's not something that a lot of people embrace. Sometimes there's a learning curve. But you’re very surprised that someone who comes to me in their mid-80s and they want to learn to use their iPad. I'm saying, "my goodness, that's pretty wonderful," and what drove them to it was not that they were interested in becoming technologically up to date, but they wanted to go on Facebook to see their grandchildren or to visit people from far away. Finding some little key like that, some little motivation of what would be the purpose of this all of the sudden launches them to this return to their social group. When you have that sort of purpose, then you are better with compliance, you follow the rules about safety and you start to put better lighting in your house. You actually can go with other people so you have those individuals coming in, especially if you're living alone, to make sure that your health care is better. I think that social isolation becomes the downhill spiral. When aging creates vision loss, also it creates hearing loss. Addressing both of those things is essential to getting that person back on track.

MABVI: Final thoughts?

DR. JAMARA: By educating the doctor and by collaborating with other professionals, we've created sort of a phase of healthcare that is available to patients. We've given them something they can have access to, but the patients themselves have to seek this out. They have to be able to understand that there is help as your vision decreases. It's not that “I'm getting older. I've got worse vision. I need to stop doing this." Exactly how to connect with those patients, we've been learning about different groups that they are participating in such as their church or their rotary club or their Lions [club]. It's in these groups that I think some information needs to be available because they will trust their peers of some advice about that. I think that sharing information among professionals is helpful to provide something, but no one can access it until they understand it in their own groups. As we talk about the diversity in Massachusetts, there's a lot of groups that are not connected or have no personal groups and we need to reach them with this information for low vision rehabilitation.

Richard Jamara is a doctor of optometry and professor at the New England College of Optometry and the attending low vision specialist at the New England Eye in Boston.

Contact Us

200 Ivy Street
Brookline, MA 02446
Directions


799 West Boylston Street
Worcester, MA 01606
  • Toll Free 888-613-2777
  • Fax 508-854-0733

Newsletter Signup

Submit your email address to receive important MABVI Community newsletters