advoccy

Wait A Minute!

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 wait room

Why is everyone in America waiting incessantly in waiting rooms? There is waiting everywhere like doctors, dentists, insurance offices, hospital procedures etc. In most of these waiting periods are not just a 10 to 15 minute wait but anywhere from 40 minutes to over 2 hours. To make things worse all waiting rooms look alike. Old magazines, a TV in the corner, chairs shoved together so you can’t move yours away from a sick person spewing cold or flu viruses on you. The TV is supposed to suck up our time but it does more harm than good by never having suitable viewing material for everyone’s different taste. The various ages alone is a barrier to consensus. The noise can be an annoying background to someone who just needs some silence and is in pain. Elevator music is not much better and will put most people to sleep.

All of us crammed in one room look like we are watching a tennis match as our heads jerk up every time the door opens and a nurse or a business person calls the next person. We sit and read, try to tune out the annoying game shows on TV and fidget in the uncomfortable imitation leather seats while anxiously imaging 100 things we would rather be doing with this precious time we will never get back in our lifetime. I’ve even tried to be proactive and outsmart them by getting the very first appointment in the morning at 8 AM and it can still take another 45 minutes wait before they finally call me. Really? The same wait occurs for outpatient procedures that they warn you NOT to be late for. A 7 AM appointment can often be delayed up to and over two hours. I don’t know what all the answers are but I have a few suggestions.

As far as improvements I think an update frequently from a “courteous” staff as to order of selection and how much longer it should be. Just acknowledgment of who you are and that you are not forgotten relieves the stress and anxiety. I also think they need a little incentive like for every 30 minutes past your appointment time 10% off of your office visit will be deducted. I bet when they see that 10% turn in the 40% they pay more attention to their scheduling and treat the customer with respect as they are the ones lining the pockets. And of course a variety of reading material that’s not just based on the physician’s hobbies and investments. Right now the burden is on the patient (the “consumer” if you will) and not the ones providing the service. In another area of business we would not tolerate this treatment in order to give them our money.

Is it a Service Animal, Emotional Support Animal or a Psychiatric Service Animal?

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support dog

service hourse

These labels can be very confusing if you are not familiar with the jargon of disability world. They are not only quite different but are not treated equal under the law.  The definition of service animal was changed July 23, 2010 defining only dogs and miniature horses as a category for service animals. People are always surprised to see that miniature horses were approved as a service animal. While not common, they have earned a reputation as an alternative to traditional service dogs. They can be house broken, a requirement for service animals under the ADA and their life span of 30 years is a much longer working life span than dogs. Typically, people using dogs as service animals must find a new dog every 10 years as their service dog ages. For many reasons this can become an emotional trying experience. The miniature horse must be a docile, intelligent temperament even in the hectic urban environments just like the dogs are expected to be.

To be considered a service dog they are required to perform a “task” to qualify such as fetching a cell phone, opening or closing doors, taking garbage out, pull a wheel chair up an incline, etc. The task performed is based on the individual needs but they must perform one to qualify as a service dog.

Emotional support dogs assist people with mental impairments. They are not protected under the Americans with Disabilities Act. Needing glasses would be an impairment not able to see it all is the disability. This distinction is why a person using an emotional service dog is not protected under the ADA since the most important criteria is that the person has to have a disability according to the ADA definitions. However, there are provisions under the Fair Housing Act that allows them in HUD housing if proper paperwork is filed.

Psychiatric service dogs on the other hand can be taught to do tasks similar to mobility service dogs. Examples would be retrieving things dropped because on certain medication bending over would cause dizziness to the person, reminding or redirecting people with OCD to stop behaviors, alerting to smoke alarms, door bells, tornado warnings. They are a huge help for social phobias and much more so you can see how psychiatric service dogs would qualify because of the “task” they perform and the person’s status of disabled.

To clarify there is NO certification required by law. There are many organizations that are very good at training service dogs to accomplish tasks but it is not required. However keep in mind a service dog must act like a service dog. They should be socially trained to not only perform tasks but know their place in all situations so that’s the great benefit of the organization that knows their stuff and can instill that training in the service dog. An average training process for these dogs is typically 18 to 24 months, a huge investment of time and money.

If a service dog is not socially trained and barks and bites or growls or disturbs other people the business you are visiting can ask you to leave and not bring your dog in again and it would b their complete right to do so. These service animals’ open doors of freedom for people with disabilities that were once closed. They fill many roles such as companion, helper and unconditional love but they are also a tool when working and must follow regulations in order to have access to all the places a person wants to go. For more information visit the website http://www.swcil.org a nonprofit Center for Independent living and request an advocate to assist you with the current laws and compliance in your state.                                                                                                                                                                                                                                                                                                                                                                                                        .

Which Is More Life Limiting Diagnosis or Prognosis?

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Envision Empower Execute - Win

Diagnosis and prognosis are very different concepts based on different criteria. Diagnosis refers to identifying the nature or cause of the condition. Prognosis refers to the future of the condition based on previous case histories. People very often get these terms confused and link them together as a predetermined outcome of their injury or their illness. In other words, the prognosis is the likelihood of the person’s future with their condition based on other cases. It is a subjective not an objective conclusion but remember there are no two humans exactly alike physically, mentally, with beliefs or inner strength and ability. So really, how much credibility does that really give a prognosis?

In my long career as a disability advocate I’ve seen hundreds of people come for help as victims and helplessness because some doctor told them that they would never be able to do this or that and their future would be pretty bleak. Negative prognosis is more dangerous than the diagnosis itself because it fosters an attitude of giving up and giving in.

Why do doctors continue to make these negative diagnosis? I think there are two main reasons. One is that they are trained to look at facts based on previous outcomes and not to give patients “false hope” (how I hate those two words). Another reason is they are medically and scientifically trained and are not invested in transitioning their patients into the world after the hospital or diagnosis. In summary, they do not know the almost unlimited options living with disability.

They rely on a rehabilitation facility to do that but the rehabilitation staff is bound by doctor’s orders and his prognosis. Our whole medical system is based on specialists who are all under the control of the doctors. But guess who has the control over the doctors? You and only you. That’s right, you have the last say, you decide your own prognosis. You empower yourself by digging out the options, learning what is possible. You are a unique human with your own brand of determination and courage. Only you know what you’re capable of. Don’t let the medical field take away your self-determination by telling you what you can’t do.

The life journey is not about the destination but the process of every day and how you live that process is totally up to you. If you or someone you know needs a peer support or options in technology or just a place you can see people who have beat the odds and are living life on their own terms take a look at the website www.swcil.org it could possibly change your life. There is also a blog where you can ask questions and find resources.

Frustrated With Your Doctor?

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The doctor’s role as an authority figure is very much deeply ingrained in the American culture. In addition, no one wants to be perceived as a difficult patient. It’s fine to follow your doctor’s orders if it is based on shared medical decision-making. However, when you’re in a room with a paper on the exam table crinkling under your bare bottom you may not feel so empowered. That being said, you cannot afford to be intimidated by your doctor and be a passive bystander. You need to keep focused on what is being ordered for tests and medications. Do not make rash decisions at that moment but rather go home and research it and look at other options if they are available. I would disregard those doctors who tell you everything on the Internet is incorrect. You must be careful when researching of course but there are very reliable nonprofit organizations that provide sound guidance like the Mayo Clinic and the Cleveland clinic. Dig for the facts and not someone’s recommendations because they had a similar medication or similar test. Ask a lot of questions, make sure you know the tests are justifiable and medications are not in conflict with what you are ready taking or the side effects that could be dangerous to your particular condition. We would not dream of buying a weed-eater let alone a car on someone’s recommendation without looking at facts and figures and comparisons first.

Be careful and be precise when you explain a symptom to your doctor. Many unnecessary x-rays, MRIs, and other procedures are commonly ordered because doctors do not want to be sued for not screening properly, for instance, if the patient has a heart attack or some other unknown known event after the appointment. Doctors are often paid a fee for these procedures and have a “better safe than sorry” justification. The same goes for referrals to specialists. They are invaluable in diagnosing a problem but need to be terminated when their expertise is no longer needed and a primary care physician can take over.

Make sure your communication is open with your doctor.

  • Ask questions such as “what does that mean”? Most doctors just assume that you understand their medical terminology that they use every day. They are under incredible time pressure and if you do not bring a list of complaints to them you will probably get rushed out before you have all of your answers and concerns addressed.
  • Don’t be afraid to tell your doctor that you’ve considered other hypotheses about your health based on your own observations.
  • Avoid “on the way out the door” complaints. Those are things you suddenly remember like “oh and by the way I’m having pain in my back or trouble swallowing”. At that point the doctor can’t really do anything so they tell you to make another appointment or go to the emergency room. By then your 15 minute allotted appointment is up.
  • Be honest when talking to your doctor about your out-of-pocket costs. Most people are shy about bringing up financial concerns even thinking they might get substandard care if they mention money is an object. But the fact is that in almost all cases physicians have good options available. They may know about free prescription drug samples or programs from the pharmaceutical companies that could pay for your medications.

Putting these suggestions in place may be difficult at first but it will empower you as a patient. After all it is your body and your life. Too many times miscommunication or lack of communication between patient and doctor ends up with serious consequences. There are no old-time general doctors anymore that know your family and have the time to sit down and have a conversation with you. The old practice of physicians using critical questioning to get a better knowledge of what’s really going on with the patient has been replaced by scheduling as many patients in 15 min. increments as possible. Never forget the medical field is a huge business and as such you are the customer. You are the profit and the loss on their financial sheet but that also gives you enormous power because without your insurance and money they would not exist as the huge corporation that they are. You are the customer, you are the product and you have a right to accept or decline medications, tests or procedures. If you have a doctor that is very uncomfortable with that you need to look around and find a doctor that became one for the right reason.

Blaze The Trail

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Stand_up

Ever notice how subtle change is sometimes?  You know, like a new building appears where you were sure there was a field yesterday?  That’s how I felt when I started researching this article about access to people with disabilities in our community.  I found many things I had forgotten weren’t always there and now I see more and more access every day.  Almost all the large department stores have electric carts.  Even five years ago this was very rare.  A few stores had one, now the average is four.  Accessible bathrooms are being remodeled to include an accessible stall, lower sink and dispensers and larger turn around areas for wheel chairs.  Automatic doors are becoming more common as are entrances with no steps.  All of our city buses are equipped with lifts.  If you don’t live close enough to a bus stop, and you qualify, Access Express will pick you up at your door.  OATS provides vans with lifts outside the city limits. Everyone benefits, people with disabilities, people with baby strollers, and seniors with canes or walkers.

The community is finally realizing that the more they respond to the customers need, the more money they make.  It has started a mind set in entrepreneurs to offer more and more convenience.  For instance, pizza isn’t the only thing you can get delivered to your door.  A growing number of grocers will take your order over the phone and deliver it to you.  Many pharmacies are doing the same.  There are even people who will holiday shop for you or run errands for a fee.  Homes can be built already accessible now so it will be ready as you grow older when remodeling is usually too expensive on a fixed income.

 There are approximately 54 million people with disabilities in the United States and now communities are watching this sleeping giant wake up and demand equality.  Slowly but surely, it is being granted.  The Americans With Disability Act is a great liberating piece of legislation but it sits silent until you give it a voice.  Success has happened because of people’s perseverance and determination to set things right.  Freedom is the responsibility of all people who enjoy it.  We must be ever diligent, ever watchful.  When you observe no access, grocery carts parked in a disabled parking space, electric carts broken or not even available, bathrooms inaccessible, entrance doors too heavy to open; speak up, write a letter, make your requests be known.

Blazing The Trail

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Ever notice how subtle change is sometimes? You know, like a new building appears where you were sure there was a field yesterday? That’s how I felt when I started researching this article about access to people with disabilities in our community. I found many things I had forgotten weren’t always there and now I see more and more access every day. Almost all the large department stores have electric carts. Even five years ago this was very rare. A few stores had one, now the average is four. Accessible bathrooms are being remodeled to include an accessible stall, lower sink and dispensers and larger turn around areas for wheel chairs. Automatic doors are becoming more common as are entrances with no steps. All of our city buses are equipped with lifts. If you don’t live close enough to a bus stop, and you qualify, Access Express will pick you up at your door. OATS provides vans with lifts outside the city limits. Everyone benefits, people with disabilities, people with baby strollers, and seniors with canes or walkers.

The community is finally realizing that the more they respond to the customers need, the more money they make. It has started a mind set in entrepreneurs to offer more and more convenience. For instance, pizza isn’t the only thing you can get delivered to your door. A growing number of grocers will take your order over the phone and deliver it to you. Many pharmacies are doing the same. There are even people who will holiday shop for you or run errands for a fee. Homes can be built already accessible now so it will be ready as you grow older when remodeling is usually too expensive on a fixed income.

There are approximately 54 million people with disabilities in the United States and now communities are watching this sleeping giant wake up and demand equality. Slowly but surely, it is being granted. The Americans With Disability Act is a great liberating piece of legislation but it sits silent until you give it a voice. Success has happened because of people’s perseverance and determination to set things right. Freedom is the responsibility of all people who enjoy it. We must be ever diligent, ever watchful. When you observe no access, grocery carts parked in a disabled parking space, electric carts broken or not even available, bathrooms inaccessible, entrance doors too heavy to open; speak up, write a letter, make your requests be known. You can call Southwest Center for Independent Living (886-1188) and we will assist you in pursuing it. But, your voice is the most important. You are the customer and all of us have a right to all the services our community offers. Do it for yourself, do it for you grandparents, your grandchildren, do it for freedom.