Some of this applies to vision specifically although most will apply to general health or general issues. So I will just dump it all in here to make it easier to find.
Know your medical condition(s). Everybody should have at least a basic understanding of their known medical problems. At absolute minimum, the medical name(s) and description. The more depth of the knowledge, the better the person will be to explain it and live with it. There may be times when a person encounters a new doctor or emergency worker who will not be familiar with them or the condition. Better treatment will occur if these new people are enlightened about these conditions right away rather than treatment waiting for medical records to arrive.
Know your medications. Some people carry a card in their wallet which lists the medicine they take, often including dosage and symptom information. This can prove valuable in the event the person is not able to communicate during an emergency situation. Sometimes the card can also list medical conditions. A person should have an understanding of what the medication treats, the possible side effects which can occur, when and how to take it, and if there are restrictions or reactions to other medicines. Think about it, the more you know about what you put into your body (be it food, drink, or medicine), the better equipt you are to have a healthier life.
Know your reactions. Communicate ANY changes in your life that may be a result of medication reaction or syptom difference. Such events include (but not limited to): drowsiness, dizzyness, breathing trouble, energy loss, weight gain/loss, or pain. If the doctor feels the reactions merit attention (sometimes they are considered normal), the medication dosage can be adjusted or alternate medications may be available with less reaction ratio. Tests may be conducted to allow the doctor to analyze what is going on medically. Since the doctor is not with the patient except for office visits, it is the responsibility of the patient to understand themselves and commuicate freely.
Get your medical records. You have the right to request your medical records from your doctor(s). These records contain the medical codes or terms for conditions, but can also list results of routine tests performed during each office visit. This can be helpful to monitor the progress of a condition or recovery.
Get your own facts. Consult books, websites, or pharmacists to gain further understanding of the condition(s) and medication(s). This not only helps to confirm that a diagnosis is valid, but many sources will say things in a different manner which might be easier to understand. Again, the more you know the better off you are.
Like everything else in life, things have a better chance of going smoother if good communications is used. Insurance companies have policies of what to cover, how much to pay, etc. You may not like their policy, you may not like the way they run their business, but if you don't work with them you are just asking for even more problems.
You should know the basic coverages of insurance at the time of signing up for a policy (even if it is provided through work). You should know what doctor(s) you are allowed to visit under the plan, what co-pay or deductible will be charged, what examinations are covered, etc. There may be special instructions for emergency care reporting after the fact.
You should call the insurance company for details about other events, such as a planned upcoming surgery or an emergency event which happened recently (many have time limits on reporting). This not only helps the insurance company to know an event is in progress, but provides a way for you to get the details on what it might end up costing you or what things you need to do for coverage.
Always be prepared to give doctor(s) names, addresses, and phone numbers when calling an insurance company. Dates, places, and times are also commonly asked questions. The more information you provide, the better your chances of having a smooth (although maybe not lovable) experience.
Make sure you, your doctors and the insurance all have the same facts. Don't just assume things are handled for you. Double check inportant issues. Review paperwork and ask questions if in doubt about anything. The more order you can provide in the mess of paperwork, the better off you will be in the long run. It isn't fun, but it is in your best interest.
Medical records, receipts, letters, and history are all part of the big medical picture. Although some of these should be saved for a minimum of seven or ten years (legally it depends on where you live), future generations would probably appreciate these being saved and passed down in the family history. Paperwork isn't one of those things that we look forward to storing or moving, but medical information also ranks as more priority than the electric bill from years back.
It takes just a short time to review and compare the paperwork from the doctors office with what actually happened. Another short time to check the insurance billing with the office receipt. Not much of a hassle to be sure the same figures are being used. Mistakes can happen. It is a good idea to compare paperwork.
In the USA, medical bills may be tax deductible when you itemize the income tax form. This may include medications, travel expenses and services needed for certain cases. Saving receipts allows you to claim everything accurately.
Raising a child is a huge responsibility. Raising a child with a disability is even harder. I have a lot of sympathy for parents who must deal with these extra issues. I also have a great deal of respect for parents such as my own, who handle the matter with dignity. This is written for visually impaired disability, but can reasonably apply to any disability.
Parents who have similar conditions as their children (genetic inheritance) have some advantage of experience and understanding of what the child will be going through in life. It still won't be easy, but the techniques used by the parent can often be used for the child.
For parents who do not share a condition with their children, it is not so clear what the child is or will be experiencing. That adds to the uncertainty of the route to help the child become all it can be. With this in mind, I share a few things that might be helpful.
First off, don't feel guilty about the fact that you've brought a child
into the world with a disability. The human body isn't perfect. ALL
of us have problems, just that some are more noticeable. Some parents
say their child is special
, well EVERY life is SPECIAL. There
is a potential in just about every life, no matter what hurdles will
be in store for that person over the years. Communicate this attitude
with the child.
Don't overcompensate and play favorites to any child. Yes, there will be some things done differently to meet certain needs, but this applies to all children rather than just disabled ones. Nobody is better or worse, loved any more or less, or just as much worthwhile. We are all equal in existance, just have different abliities to get us through.
Be open and honest about the facts. Don't avoid the issue or make it appear less of an issue. To the child, it is an important issue and a huge part of life. The biggest regret of my life is the fact that my father never shared his abundance of experience about vision problems with me (apparently having similar conditions). There should be no shame in having a disability (although our society seems to insist there should be). The real shame is not doing everything possible to accept it and deal with it as best we can.
Share with the child what you can see. Ask the child what they see. Compare differneces and openly discuss them. This helps the parent to gain understanding of the childs experience as well as learning better how to modify things for the child.
Use your experience with your child to teach others about how to interact with them. Communicate with teachers and school staff about what your child can see and do. Talk to the parents of the childs friends about the condition and effects. The goal is to make life easier due to better understanding by and interaction with others.
This section is written to teachers and school administrators. The job of such people is to educate all of the students. It has to be a very difficult job, but that IS the job at hand.
I had some teachers who looked beyond my disability and brought out potential talent. They knew I was doing the best I could on my own and offered help during the few times I requested something of them. These were my favorite teachers! They never made me feel like I was anything less than any other student.
Many teachers just ignored me for lack of knowing what to do with or for me. Several attempts on my part requesting simple modifications went unmet or with an empty promise. I could not read the blackboard from my desk. I'd ask that either the written words be verbalized as they were written or that they remain (unerased) after class so I could write them down myself. Even these simple requests were ignored. A few of these teachers would later tell me how poorly I did on a test.
Most administrators saw me as extra money for the school if they could
label me as a special needs
student. While I had a severe
vision problem, my goal was to do everything I could in spite of it.
Large print books are a great tool for those that truly need them, but
they are also an added burden (heavier weight, bigger pages). I tell
you true, if I needed them I would have requested them on my own. My
mother and two doctors also told these people that often students who
use large print books are less equipt to deal with regular print in
the workplace (where large print is rare) later in life. Trade the
money in on a better EDUCATED student.
The point of this is to allow students to communicate issues with you and tell you what is in the students best interest. Then follow it up as best you can. As long as there is an open channel of comminication and a willingness to work together, it is a win/win situation. THAT is the way it really should be.
We encounter people with various disabilities often. When you know the person, they are easier to deal with because you know more about their abilities and their method of doing things. Interacting with somebody you don't know can be much more difficult. However, there are things that can make the experience easier and more comfortable for both you and the disabled person.
Most disabled people appreciate being treated like everybody else. Avoid staring at those who are disabled or making a big deal out of their situation. It is acceptable to inquire about their situation, but keep it on a sincere level and don't push it too far. Usually if people want to talk about their condition(s) then will do so openly and show you they have no problems discussing it.
The degree of disability usually coincides with the degree of assistance that will be required. The more severe the condition, the more likely there will be a need.
Don't force help on anybody. Most people who want assistance will request it. However, if you see somebody struggling with something (such as opening a door) you may offer your help, but do so verbally first without just doing something. Often people will need something done in a particular way and if it is done differently will often make things more difficult.
Communication is very important in life, but especially when dealing with a disabled person. As above, verbally communicate with them before helping at least until you get to know what they want. It is also important when dealing with a visually impaired person that you keep them informed of what is going on if they are unable to follow it themselves. The more you know somebody the better you will be able to work with them. If you are helping a stranger though it is better to give too much verbal information than not enough. They will usually tell you if they are aware of something you are telling them and then you can use this information while you continue helping them.
One of the worst things people do is ask others what the disabled person wants when they should be asking the person directly. I've run into this quite often when ordering food or trying to make a purchase when somebody is with me. The person with me usually tells them to ask me, which is the thing to do (unless the disabled person truly can't perform the task).
While everybody will require different levels of assistance, there is a fairly well defined standard of how to bridge the gap between you and a disabled person. Many of the things discussed breifly here are related to vision loss, but can be useful in other situations also.
On your plate the chicken is at six o'clock, the potatoe is at ten o'clock and the vegetables are at two o'clock. Around your plate the silverware is at nine o'clock, your drink is at twelve o'clock and has a straw and your salad is at three o'clock.Some families use the term noon instead of twelve o'clock and some people just use the numbers with the o'clock part being implied.
Perhaps the best way to understand what a disabled person goes through is to try dealing with their issues yourself. Even routine things can become a challenge and teach you about how life without certain abilities can be. For example, when you wake up in the morning, try getting out of bed with your eyes closed to simulate blindness. Warning, do this very carefully because you would be surprized at how different the experience is. While standing in front of the sink, close your eyes and try to obtain the toothpaste or soap. Think about how detailed directions would be helpful to you in this search.
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