The disabled are usually at the bottom of the poor, unable to pay for good medical care or housing. At least there are government programs in the United States to make sure that the disabled can take care of themselves and their families. Without these safety nets, the disabled have no way of working to take care of themselves or to pay for needed medical care or drugs. The government of Haiti will need to think about how they are going to care for people that cannot care for themselves. Just thowing the disabled to the wolves and forgetting about them is not the way to do this. Add the pubic stigma of being disabled and you have a recipe for disaster. With no government help and most companies refusing to hire the disabled and you have a group that is guaranteed to starve to death on an island that they have no way of getting off of. The United Nations has a significant group on the ground in Haiti that is used for peacekeeping but can and should be used to help the disabled. There should never be a group that is so shunned that they are allowed to starve to death with no medical help and no one cares. Especially where these people are disabled because they were the victim of a natural disaster, they did not create their problem, they are just trying to live through it. There must be rehab programs put in place to help the newly disabled to get the most out of their situation and to train them for jobs that they can do. Everyone wants to be useful and to work and take care of themselves and their family.

From a single device you can now access the Internet, have telephone support and move your wheelchair around. The company did not say so in the article but they should also be working on an application that let Dynamic Controls know about problkems so they could set up a technician to come out and fix the chair. Since all the new iphones have GPS hardware built in, it would be easy to determine where the user was at in case they needed immediate help or would be staying at that location until hardware support could come by. Integration of hardware into the wheelchair is about time as it now makes it easy to access the chair whether the user is in it or not. Many times my wheelchair was moved by hospital staff and I had to repeatedly call to et them to move the chair back so I could get to it. Rather than waiting for the nursing staff to get around, by using the iphone control, I could have moved the chair myself and accessed the movie or whatever else I needed. Any time that disabled people are given more control over their lives and more mobility it is a good day and that is the case here. It would be great if the interface hardware would be easily installed on any wheelchair that was powered. those that already have a wheelchair could now run it from their iphone.

The camera was not noted to be used on the iphone but depending on where the charger was placed, the camera could be turned on  and used as a video camera if the user wanted to show his friends where he was. IT would be also useful to get directions and show where you were so a business or friend could talk you in from where you were. With the hardware and software built into the iphone, it is almost limitless what can be done to integrate it into a wheelchair. Here hopes that other vendors use the same connection and docking station to reduce the cost of smart controls on the wheelchair. Rather than harging for a custom controller, the iphone could be used to control the wheelchair from the screen or from voice if the user was a quad. Plus it would be easy to add new features by merely downloading a new applet rather than having to install a whole new controller.

One would think that this was the script from a “B” movie in Hollywood, but states all over the country are debating the use of the New York protocols to determine what to do during an emergency and how to ration supplies that run low during a virus outbreak. However, public opinion has been strongly against any kind of rationing like this, and officials have worked hard to keep the public out of meetings that discuss these protocols. Our only safety net is that most states have not implemented this plan as law and most are worried what would happen to public opinion if they did put it into law. While officials are trying to state that this is for the national good and that work must be done to make sure medical care is available neglect to explain how this is going to occur. No one in any meetings to discuss the New York Protocols are willing to say that the will take ventilators and other lifesaving medical equipment from a person merely because they are disabled. We have not heard of something this sinister since the Nazi plan to rid the Reich of people that were “broken or not whole”. People that were forced to live in nursing homes because of disabilities were carted off to the same killing centers that the Jews were sent to. This law appears to allow the state to do the same type of thing under the veil of doctors and hospitals trying to give care to those that desperately need it.

People that live in states that frequently have disasters like Florida, Louisiana and California need to look carefully and see what their state officials are working on in this arena. If your state is looking to implement the New York Protocols you need to call everyone you know to put a stop to it. If this is allowed to become law then the governor of your state can decide at will that the disabled do not deserve to live and will be denied medical care that they may need to survive because others are felt to have a better chance to live. The control of life at this level is disgusting and it is sad that any doctors would be willing to put time and effort to make this a reality. No one should have the basic right to control who lives and who dies without having the family involved.

The American Red Cross is soliciting donations for help in Georgia. Feel free to help, but I have some questions I wish they would answer about their services to evacuees with disabilities:

Do evacuees in wheelchairs who seek shelter in Red Cross shelters in Georgia have accessible beds available to them, as required by the ADA?

 In Miami-Dade County, they don’t. They plan to get some, and plan to borrow some, but right now, 19 years after the passage of the ADA, they don’t have any.

Do evacuees who are deaf or hard of hearing who use sign language have access to qualified interpreters in shelters, in the event of a medical emergency, as required by the ADA?

 In Miami-Dade County, they don’t.

Miami-Dade County only offers “volunteer” interpreters, who lack knowledge of how to interpret the necessary medical terminology that would be required in such a situation. The Red Cross tells us: “We are a volunteer organization, so we use volunteers.” 19 years after the passage of the ADA, and the collection of millions of dollars in donations, they are still exploring ways to comply with the ADA.

Do evacuees who have mental illnesses, autism, or cognitive disabilities have a quiet area in the shelter, as a reasonable modification of policy?

In Miami-Dade, they don’t.

Under the ADA, the Red Cross and the County with whom they partner are both liable for the civil rights violations that occur in emergency management.

In its solicitation for donations, the Red Cross says that “Officials estimate more than 1,500 people may be seeking shelter.” Some of those evacuees are people with disabilities. What is the Red Cross doing to serve them? Where are the accessible beds? Where are the qualified sign language interpreters? How much of the money donated to the Red Cross, instead of to disability organizations serving evacuees with disabilities, actually go to serving evacuees with disabilities?

Are Counties that partner with the Red Cross aware that under the ADA they can be held liable for the failure to serve people with disabilities in general needs shelters operated by the Red Cross? Are they aware that under the Rehabilitation Act, they risk a cutoff of federal funding for violations of the ADA by the Red Cross?

Let’s never forget what happened to evacuees with disabilities in New Orleans with disabilities. As related in testimony before Congress by Marcie Roth:

On the morning of August 29th, I received a call that I will never forget and once I tell you about it, I hope you will never forget it either. My friend and colleague, former appointee to the Social Security Administration, Susan Daniels called me to enlist my help because her sister-in-law, a quadriplegic woman in New Orleans had been unsuccessfully trying to evacuate to the Superdome since Saturday. In my naiveté I thought a few phone calls to the “right” people would help, and I was sure I knew who to call. After many calls to the “right” people, it was clear that this woman, Benilda Caixetta, was NOT being evacuated. I stayed on the phone with Benilda for most of the day, assuring her that I was doing all I could to make sure help would be coming as soon as possible. She kept telling me she had been calling for a ride to the Superdome since Saturday, but, despite promises, no one came. The very same paratransit system that people with disabilities can’t rely on in good weather was what was being relied on in the evacuation. It’s no surprise that didn’t work.

I was on the phone with her that afternoon when she told me, with panic in her voice, “the water is rushing in” and then her phone went dead.

We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair. http://www.spinalcord.org/news.php?dep=1&page=0&list=643

Marcie described the Red Cross’ efforts as follows:

“As well as the disability community came together to try to take care of “our own”, we have been excluded from the larger relief community and told that we would just be “in the way” and “make things worse”. I received report after report about the Red Cross shelters turning people with disabilities away or separating them from caregivers and service animals, then sending them to nursing homes when they couldn’t maintain their independence. When I inquired about the sheltering needs of people with disabilities, one Red Cross operations official told me “we aren’t supposed to help those people, the local health departments do that. We can’t hardly deal with the “intact” people. Don’t you understand that we’re taking volunteers off the street to run these shelters?”” http://www.spinalcord.org/news.php?dep=1&page=0&list=643

When the disability community, and their allies, are asked to donate to the Red Cross, don’t donors deserve some assurances that the donations will help evacuees with disabilities? Shouldn’t some of the donations be dedicated to purchases helping evacuees with disabilities? Shouldn’t some of the money go to purchasing the services of qualified sign language interpreters, video remote interpreting (VRI), accessible beds, and other services needed by evacuees with disabilities?

Can’t the Red Cross do a better job of planning on behalf of evacuees with disabilities? Can’t the Red Cross do a better job of serving evacuees with disabilities? Shouldn’t the counties that partner with them and the donors who support them demand that the Red Cross prioritize serving people with disabilities?

As for me, I will donate to the Red Cross when the Red Cross shows its commitment to the disability community.

Marc

See http://www.spinalcord.org/news.php?dep=1&page=0&list=643 for Marcie Roth’s testimony before Congress. Also  See Transcript of Hill Briefing on Disaster Response (11.10.05) (Word Document)

See Transcript of Hill Briefing on Disaster Response (11.10.05) (PDF Document)

Marcie Roth was subsequently appointed by President Obama to serve as FEMA’s Senior Advisor on Disability Issues.

Americans are used to dramatically overpaying for equipment and services for some time. The all time classic was the military spending over $1000 for a hammer that anyone could purchase at the corner hardware store. It is sad that government contracts allow this type of insanity to continue, but many parts of congress do not have rules to purchase from the lowest bidder or to even try and negotiate with the supplier. It is bad enough when the military buys things that they can get cheaper, but Medicare is costing a fortune as it is so any savings would be helpful. If we are to get a handle on Medicare and Medicaid costs, then we need to start here. There is no reason to overpay on items merely because the government is used to doing business with a particular company. There is no way that we can keep overpaying on medical care and expect our tax structure to keep up with the increases.

All of us have a stake in making medicare care in this country affordable and safe. Doctors need to be able to order procedures and drugs without having to worry about what will be paid and what will not be. No one’s health ca be tied to a price tag and no one should have to worry that someone else will decide whether they will be healed or nor. As is stands now under Medicare Part D, insurance companies can decide what drugs to cover and which they don’t. If you pick a company that covers what you are taking now but get sick, you may not be able to get the drugs you need. This is especially true of expensive drugs that do not have a generic to purchase. Powerful pain drugs like Actiq are not covered so if you have chronic pain there may be no drugs you can take that are covered. So you get to suffer because of bureaucratic red tape. This needs to stop. There is no reason why a drug a doctor prescribes is not made available and covered by insurance. Unless this is fixed we will have a group of have and have nots. WHile that is bad enough in schools, it ks inexcusable for medical care.

Everyone deserves the best that we can properly afford. Please contact your congressman and senators to let them know what you think about this. The new bill going through congress will never be the best it can be unless we all participate and let everyone know what we need. Democracies are not spectator sports. If we don’t participate, don’t complain about what happens with the new Medicare changes.

This is an awesome idea that we all need to push in our own communities. As a tetraplegic (only 1 good arm) I find it very difficult to find an MRI or Cat scan that can drop down to wheelchair level or has personnel trained to transfer the disabled. Some have personnel, but they refuse to help and management merely stands there and stares at you. It is obvious that there needs to be standards for hospitals and equipment owners like standalone MRI units so the disabled are given the same access as the able bodied. It would be nice if the medical community could get their collective act together and create something that they would all follow. Unfortunately, self policing is not the strong point of the medical institutions in the U.S., which points us to laws enacted at either the state or federal level.

State level laws could solve some of the worst problems but there are very different problems and concerns in each state that would need to be addressed. Unfortunately it would mean that the laws would be a mish-mash of things that would be enacted based on local hospitals and insurance companies. States with large insurance companies are going to reduce and control the help the disabled would get. Large hospitals would fight this because of cost and perceived burden in having to deal with additional disabled people. This situation would not be fair to the disabled in states with strong hospitals and insurance companies as they would not get the same level of help as other states.

Federal laws tend to take longer to pass but force all states to follow the same standards. Powerful local hospitals and insurance companies tend not to have the same level of power at the federal level that they show at the local state level. This would also let the national disability groups have their say on what challenges the disabled deal with at hospitals so we get actual disabled people helping to make decisions. The law created here would be more generic than the state level but it guarantees that we would not have a patchwork of laws that would be difficult to enforce and even harder to deal with if the disabled travel.

Regardless of which way we go, this is an excellent start to help those that spend a great deal of time in the hospital as compared to the able bodied. Lets hope that more disability groups take this as an opportunity to help everyone so that we have hospitals and other buildings that are easy to access and have equipment that have the same ease of use. It does not take much additional effort to make everything disability accessible, but it is usually very expensive to rip out what you already have and start over again.

Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness

A training curriculum provided by the Community Emergency Preparedness Information Network (CEPIN) and developed by and for emergency responders and deaf and hard of hearing consumers

TOPICS COVERED:
- Understanding Hearing Loss: Communication modes and barriers
- Emergency Responder Roles: What do they do? What tools are needed?
- Emergency Preparedness: Responsibilities of consumers and responders
- Partnering for a Safer Community: How to become involved in community preparedness, response and recovery activities

The information presented in this training will benefit anyone involved with emergency planning, response and recovery efforts. The primary focus of the curriculum is direct interaction between emergency responders and people who are deaf, hard of hearing, late-deafened or deaf-blind. The Train-the-Trainer course is intended to teach participants how to provide “Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness” to citizens in their community. Check out our website at www.cepintdi.org for registration forms and more information.

TRAINING DATES & LOCATIONS:

November 6
Salt Lake City, Utah

November 16 & 17
Austin, Texas

December 5
Burlington, Vermont

TBA
Florida

NOTE: ASL interpreters, assistive listening systems and realtime captioning will be provided. All other accommodations will be provided upon request.

CEPIN would like to thank Hamilton Relay for providing lunch and refreshments at all official trainings being provided this grant period.

While this sounds wonderful, it remains to see how much work the hospitals will put in place. The article did not say whether disabled people would be added to groups verifying that all areas of the hospital do indeed follow ADA guidelines. But these two hospitals are showing that the ADA is doing great work throughout the country in forcing all public buildigs to be fully accessible and that personnel must be trained to help the disabled. This training is going to be the real deciding factor that decides if the hospitals are serious about helping the disabled. From the bus drivers to the nursing staff, everyone has to realize that the disabled are not an alien life form and need help for basic life functions that the able bodied just take for granted. Either forgetting to help or just all out refusing can put the disabled person in a dangrous position that could seriously injure them.

Ongoing training and verification that existing fixes are appropriate and that new areas of the hospital reach ADA guidelines will be an important aspect of this promise. The management of the hospitals can’t just look at this as a way to get away from lawsuits, they should want to help their fellow man because it is the right things to do. Opening the area to the disabled will bring more business to the hospitals because more people can access facilities there. Companies that complain about being forced to make accessiblity changes may be surprised at the amount of aditional traiffic now that the disabled can actually get in and move around.

With more and more people becomikng disabled, it will be important for these hospitakls to be accessible.l Baby boomers are getting older and many will eventually in walkers or wheelchairs and they will not be impressed if the hospital down the street cannot open the doors for them. This is something for all businesses to think about, not only are there customers you are losing, but eventually those owners and managers will be in those wheelchairs that they don’t care about. Then the shoe will be on the other foot.

Under current law, when federal financial assistance is used to create new single family houses or town houses, only 5% are required to meet accessibility standards that allow individuals with physical disabilities to visit or live in these houses. The remaining 95 percent of government-assisted new homes can be built with unnecessary architectural barriers.  As a result, residents who acquire disabilities are forced to live in unsafe conditions, unable to use their bathrooms or exit their homes independently.nbsp; They may face high renovation costs or long waiting lists for public funds to finance modifications.  They may become socially isolated because barriers in their homes prevent visits from other friends and family members with disabilities.  Ultimately, they may be forced from their homes and into institutions because of this lack of basic accessibility in their housing. (Source: concretechange@yahoogroups.com)

HR 1408 addresses these dilemmas in a cost-effective and practical way.  While leaving in place the existing requirement for extensive access in 5%, IHDA provides for fewer but important accessible features in the remaining 95%. This would ensure that all housing built with taxpayer monies enables a person with a physical disability to enter a home and use the bathroom on the main level.  For homes built on a concrete slab, the cost is less than $100 and for homes with a basement or crawl space the cost is estimated at less than $600.

In a study published last year by the American Planning Association, researchers determined that, using different measures of disability, there was a 25 to 60 percent chance that a house built in 2000 would at sometime during its useful life contain a resident with a severe, long-term mobility impairment.[1] This nation is not building homes to meet the needs of its people.  HR 1408 will take considerable steps to correct that.  Please  support HR 1408.

_______________________

This is a big deal for all Americans, not just the disabled. While folks in wheelchairs and walkers want to be able to buy a house like everyone else that they can actually use, the elderly have the same issues. You may be able to use your home just fine now, but what about 20 years from now? Stairs and sunken dens will suddenly be areas of the house that you cannot enter. Lots of money and effort will need to be put in place to either remove these barriers or to change them into ramps. Rather than trying to figure out how we are all going to pay for these problems then, lets fix it now. There is no reason why stairs are necessary on the first floor to get into most houses and entryways must be wide enough to allow a wheelchair through. This added space will make it easier to move into the home and to bring in new furniture and appliances. This opens up neighborhoods to the disabled so that there are fewer empty homes in a neighborhood that could be used by criminals to destroy the area. Everyone wins when we do just a few things to make all homes accessible to the ever increasing number of disabled and elderly people. Things will not get better unless we do something about it. A democracy requires that we all participate which fortunately is easy to do. Calling your congressman or sending an email to one of your senators goes a long way to let them know what you are expecting from them. If we don’t let them know then we can expect things to continue along where the disabled cannot access over 95% of the new homes built everyday. It would be very sad if nothing was done about this when a fix is right in front of us.

The NICE (National Institute of Health and Clinical Excellence) has made this recommendation to the UK which is looking for ways to keep up with spiraling medical costs. However, no pain specialists were on the NICE committee and pain specialists all over Britain are expressing outrage that major changes be made without any science to back it up. Making sweeping changes to the medical system merely to save money at the expense of patients is unacceptable. The UK has repeatedly been shown to the US as the best way to get medical coverage to everyone in the country at a price we all can afford. However, many are worried that b handing over medical decisions to bureaucrats is a dangerous decision that can put everyone at risk. Presently there is a major bill going through congress to make a system similar tot he UK, but still allow people to keep their existing policies if they wish. This sounds like a great idea, but who makes the ultimate decision on a procedure you need? Doctors? Senators? Judges? Doctors must be the ones that make the decision of what works best for a patient along with the patient’s wants and needs.

This change in how steroids are handled will create a whole new group of pain sufferers in the UK. These people have real pain problems that may keep them from working and paying the very taxes that are needed to keep the medical system running smoothly. But the government merely states they are going to save a bundle by cutting the number of procedures by half. What other procedures should be cut in half? Dialysis? Insulin injections? Heart attack medicine? Any group can be nailed with this so that tens of thousands are either put at great risk or die merely to balance a spreadsheet on someone’s computer. People are worth more than dollars or paper that is considered a law. In the end the UK government has to ask how many must suffer needlessly?

The major reason for a government to exist is to watch over it’s citizens and make sure they are safe from internal and external dangers. If patients are dying because a service is not available removes the very reason why that government exists. This isn’t a back woods country that has no doctors or facilities