LVF Presents The Vision Rehabilitation Therapist
Seminars@Hadley
LVF Presents The Vision Rehabilitation Therapist
Presented by
Ed Haines
May 19, 2016
Ed Haines
Welcome, everyone. I was a little nervous, we didn't have much of a turnout until just recently, so we've got a good amount of folks that are participating today. Welcome to you all. This presentation is titled "The Vision Rehabilitation Therapist, Your Advocate for Independence." I, in addition to moderating today's seminar, I am also presenting. My name is Ed Haines and I'm an instructor here at Hadley, and also a member of the Seminars at Hadley team.
Just to give you a little background, I started working full-time at Hadley about a year ago. I've worked part-time for Hadley for quite some time but I started working at Hadley about a year ago. Before that time, I've worked for many years as an itinerate vision rehabilitation therapist. By "itinerate," that means I traveled every day. I worked primarily in a rural setting in people's homes. Honestly, it was a terrific job and really a terrific opportunity to learn firsthand how low vision affects the lives of older adults. It also was a great opportunity to observe, over the years, what works and what doesn't.
So, during my career as an itinerate vision rehabilitation therapist, and by the way, I'm going to start saying "VRT" really soon, because vision rehabilitation therapist is a mouthful and this term's going to come up an awful lot. So, during my career, it's been my observation that often the individuals I work with are not sure, at least initially, about what I do or how my role is different, for instance, from say a visiting nurse or a home healthcare provider. Honestly, this is natural because a lot of times, and it depends on the individual, there may be several agencies and professionals providing a whole range of services to older adults in their homes. It really is hard to keep track of who is who, particularly if staff keeps changing and people come and go, so it's really hard to keep track of who's visiting when. It was very common for me to arrive for the first time at a person's home and discover that they really weren't sure why I was there. They also weren't really sure who sent me or what I actually planned to do.
If there are VRTs in the audience today listening, you'll know that sometimes a lot of unnecessary time is spent explaining the purpose of that first visit, which is what I'm going to concentrate on today. I will tell you, I can't count how many times I've knocked on the door of a home for the first time and I've been greeted by a family member who then yells back into the house saying, "That guy from the blind place is here," and that's about the extent of the family's knowledge of my purpose. So, the reason I'm presenting today is that I think it would be helpful for folks who are going to be working with a VRT to understand a little bit about the job of the VRT and how they can work as a team with the VRT, and how the VRT fits in with their whole process of adjustment.
So, beginning now, I'm going to be addressing the rest of this presentation to those individuals. I'm going to be talking to folks who may be awaiting the visit from a vision rehabilitation therapist for the first time or they may have called an agency and asked for a visit, and they're preparing to work with that individual. So, I'm going to be addressing those folks that anticipate that they may be working with a vision rehabilitation therapist.
Often, the first diagnosis of an eye disease that causes low vision occurs in the office of an ophthalmologist or an optometrist. These are medical professionals and they will have a ton of information on the health of your eyes and there will be a lot of discussion during doctor visits about treatment and prognosis. But very little information is given out about what to do when the treatments are over and it's time to go home, and that's normal. Medical professionals, especially ophthalmologists, are specialists. They're focused on the physiological aspects of low vision. That means the medical aspects, the mechanical functioning of the eye. So, here's the difficult part, however; individuals are often told by an ophthalmologist, and this is especially when they have a diagnosis of say, dry macular degeneration, or treatments for other diseases have been exhausted, they are told by their eye doctor that, "Nothing more can be done." Now what that eye doctor means, of course, is that they know of no further medical treatments to reverse the damage done to visual acuity by whatever eye disease the individual happens to have, like macular degeneration.
In my experience, the person with low vision who's just had the diagnosis hears that statement from a very different perspective. A person with low vision is commonly less concerned with the physiology of their eye or their acuity measurements than with knowing they can continue to do all the things they want to do. In other words, persons with low vision are more concerned with the functional implications of their vision loss rather than with the medical or physiological implications. So, when they hear an eye doctor say there's nothing more that can be done, they may think that the doctor is speaking about their functional level, when in fact, the doctor is speaking about eye physiology. Here's the important part, functionally speaking, or in terms of a person with low vision still conducting their lives independently, a whole lot can be done, we know this. A great deal can be done. This is where the vision rehabilitation therapist comes in.
Now let me give you a parallel really quickly, just to put this in context. If you fall and you break your hip, after you have surgery and get the hip repaired, you may go to a rehab facility or you may have home-based physical therapy, but you're going to have a whole lot of therapy so that you can begin to walk again and function normally. The same process holds true when you lose some vision. You need therapy so that you can return to functioning normally. That means doing the things you want to do. The goal of the VRT is to help you do this.
Okay, so what's the job of a vision rehabilitation therapist? Here I'm going to read you the definition written by my mentors in graduate school. Here it is, "To instruct people with vision impairments in utilizing the adaptive skills that allow them to cope with everyday life." I'm going to read that again because it's important. "To instruct people with vision impairments in utilizing the adaptive skills that allow them to cope with everyday life." It's a subject for maybe a lot of other presentations, to talk about specific adaptive skills, but we'll talk about them in general terms. These adaptive skills fall under some general categories. These can include home management, that means cooking, cleaning, home repair, et cetera. Personal management, which can include managing medications and making sure that you can shave and do your hair, things like that. Communications, and that's a broad term. Communications, it can encompass everything from reading to using computers to financial recordkeeping to using the telephone. Leisure activities is another important category. Counseling is one as well, and that means assisting with the emotional adjustment to vision loss. Just as important, working with family and other caregivers to help them adjust as well. Finally, low vision skills themselves, and that can include working with magnifiers, finding what kind of lighting is optimal, working with eccentric viewing, glare, that kind of thing. Those are some of the general categories of adaptive skills that VRTs are experts in and are there to help instruct people with low vision.
If you're fortunate, you may actually have the opportunity to attend a rehabilitation center for the visually impaired. A lot of VRTs work in that setting and that's a wonderful opportunity. I encourage anyone who listens to this in the future, if they're wondering whether to go to a rehabilitation center, I certainly encourage it. They can get concentrated instruction and it's a wonderful environment.
This presentation today is meant to focus on the VRT that visits and works with a person in their home. I'm doing that because there really are some unique characteristics to your relationship with a VRT who comes to your home, and there are a lot of things you can do if you're expecting a visit, to optimize that relationship. That's what I'd really like to focus on now for the rest of this presentation.
I mentioned earlier that often individuals are confused as to why I arrive at their home. A lot of times, folks are not really sure how it all came about. So, let me explain how the process works a little bit. The first stage of our relationship happens when the VRT is sent a referral regarding your condition. In other words, you or someone else, maybe a doctor, maybe someone at a senior center, maybe a visiting nurse, a family member, et cetera. Someone or yourself have noticed that you're experiencing some functional limitations due to low vision. A decision has been made that you would benefit from some new adaptive skills. Either you or someone else has therefore then contacted a vision rehabilitation agency.
Before I, as a VRT, visit you, I've received a referral about you. Once I get the referral, usually it's a letter or phone call regarding your condition and possible need for services, then I or someone representing me calls you. Hopefully you're aware of the referral, but you know, it's common actually for me to have received referral on a person's behalf and when I call them, they're not aware the referral was made. It's possible you might not be aware of the referral if someone else sent it. It's also reasonable that you may or may not remember that a referral has been made to a VRT because you've been referred to a whole lot of medical and other professionals and it's awfully hard to keep track, and that's certainly understandable. If you're not aware of the referral, the VRT will explain who they are, who referred you, and why they're calling.
Now, a little caveat here, at this juncture, I'd just like to explain that VRTs can work from several different kinds of agencies. They may work for a private, non-profit agency for persons with vision impairments, or they may be working for a state agency, a division for people with vision impairments, or they may work for a federal agency like the VA. One thing I want to just say here quickly is that the name of that agency they work for may contain the word "blind" in the title. Please don't let that confuse you. If they are calling you, it's because they feel they can offer you some assistance and that you don't have to be blind to be eligible for their services. So, don't be put off by that. The first phone call when they call you, it may be just to confirm the information of a referral, but it may also be to schedule an initial appointment in your home.
So, I'd like to talk about scheduling just a little bit, because it's really important, and I'd like to talk about some things for you to consider when you're deciding on an appropriate day and time for your VRT to visit with you. Okay, scheduling; the first thing is to just make sure you have enough time for that initial VRT visit. The first visit is usually an assessment, and that's where the VRT takes stock of how you do things, what things you'd like to accomplish, what your goals and priorities are, and I will be talking more about the assessment later.
The main point here is that this first visit will probably take some time. It can take up to two hours, it depends, but certainly at least an hour. So, make sure you have time for the VRT to conduct a complete assessment. Ask them how much time they'll need, they'll know. Secondly, it's helpful if you don't have any pending appointments immediately after your visit with the VRT. Try to stay flexible that day. The visit may be tiring. It's also very helpful if you don't have any visitors due to arrive shortly after your VRT does. I understand that's really not always possible. Other professionals, like visiting nurses, et cetera, they have tight schedules and you just can't juggle them all, and that's perfectly okay. If it's possible, try to make sure there's a little lead time between appointments or visits.
Also, if possible, try if you can, to make sure there are no other professional-type individuals visiting at the same time and circumstances may require that. The people I'm talking about are house painters, plumbers, cable TV repairmen, et cetera, who may be a little demanding of your attention or maybe somewhat of a distraction. Sometimes if there's an emergency in the home, you need someone there and there's no choice, but if it's possible, try to avoid scheduling those kind of folks at the same time. You really are going to need to give your VRT as much undivided attention as possible.
Now another consideration when you're scheduling is to make sure you schedule at a time when you're at your best. By that I mean, if you're not a morning person, see if you can schedule a visit in the afternoon. If you have dialysis on a certain day, it's probably best to schedule your visit on the recovery day when you feel a bit stronger. Also, if you only have enough energy for about an hour or any given amount of time, tell your VRT that.
This is really important, it's important for you to think about who you want to be present at your meeting with your VRT. It is totally common and acceptable and natural to want someone there with you, like a spouse or a relative or a child, et cetera. Actually, that's often really, really desirable. Sometimes, spouses and family can help you remember all the information that you need to remember. There's going to be a lot of information that's going to be exchanged during your first meeting and undoubtedly, it would be helpful to have someone there to help you remember or to write it down. That being said, sometimes having too much family present can be a distraction. I have found in my experience, especially if children are present. If you are scheduled to babysit your grandchildren on the day the VRT is arriving, probably you need to let them know because they'll want to schedule a time when your grandchildren are not demanding your attention. I have to say, I have nothing against kids, but you need to focus. If you do decide to have family present, make sure they are in the room, there to listen and participate. As I said, it's really best if there aren't any other distractions, so this visit will include a lot of questions and it will be tiring. Family members that are present will need to be focused and hopefully not watching TV or cleaning your house or engaged in other activities. They'll also need to stay on the subject and the subject is you. The VRT is there to listen and to talk with you.
Finally, and this is not very important, but it comes from my own personal experience. If you have a pet, when you're scheduling, let the VRT know that you have a pet. For one thing, the VRT may be visually impaired him or herself and they may be using a guide dog. So, they'll need to know if there's a pet in the house, particularly another dog. Also, if pets are unpredictable, it helps if you put them in a bedroom or other confined place away from where you'll be meeting. I have, in the past, been bitten several times, mostly by small dogs. In fact, always by small dogs, and I remember one visit where, the minute the door opened, the dog ran out into the neighborhood and I spent the first half hour of my visit chasing the individual's dog. So, if the dog had been in a bedroom locked up when I arrived, we would've saved ourselves a little time. If you have unpredictable pets, please confine them.
Alright, we've talked about some things that you need to consider when scheduling your first visit and now I'd like to mention a few things you can do to prepare for your first visit. This is just a basic list and it doesn't fit everybody, but here's the basic list. If you use any magnifiers, either handheld magnifiers or electronic magnifiers, or if you use sunglasses or any kind of low vision device, it really helps if you have those ready to show the VRT when they arrive. The reason for that is, the VRT will really want to know what works for you and what doesn't work for you. So, have them all in one place, that way you don't have to go searching around for them when the VRT asks about them.
If you take medications, have your medications handy. The VRT, part of the assessment, they will want to know what you take and when you take it. The reason for that is, there may be ways to make this process easier for you. Now, here's another important thing you can do when you're preparing for a visit; make a mental list. You can have a family member help you with this. Make a mental list of things that you used to do that vision loss is now making more difficult or things that you have stopped doing altogether. If possible, just try to prioritize those things, just in your mind. Decide what's most important to you. Now, I'll tell you right off the bat, it's okay to put "driving" down on that list. Giving up driving is a shock for everyone, so it's okay to say driving. Even though your VRT, I will tell you, probably will not be able to help you with driving, but it's normal to feel that stopping driving is an important loss.