Disabled Americans Fighting for Freedom from Beds, Wheelchairs and Society's Demands

There is a growing segment of society known as disabled Americans. This is a segment of society everyone wishes to ignore or give minimal attention.

How big is this segment of society? Well, according to amednews.com, "More than 40 million Americans-- about one in seven -- are now disabled."

Out of these 40 million Disabled Americans, almost 12 million Americans say they need assistance with everyday activities. Contrary to the popular perception, millions of these individuals are not elderly. About 5 million are working-age adults and about half a million are children under the age of 18. (Information taken from the Long-Care PDF.) Many of these people are forced to live in nursing homes because they do not have the services available within their communities to help them to remain in their homes.

This is not an article of opinion. It will contain some information about my own experience as a disabled person, but only in very basic terms. My situation is one which needs improving and could benefit from the information and actions mentioned in the article, but I am lucky compared to many other Disabled Americans. The focus of this article is not to tell my own story, but to plead the case of all Disabled Americans especially those who are fighting to get out of nursing homes where they are forced to live. It is to provide information about the needs of those who are currently disabled and those who will become disabled.

This article contains facts, and it represents a segment of this society which is growing on a daily basis.

You can no longer consider Disabled Americans as a minority of our population. We are a growing segment, and we are a group of people who deserve the same civil rights as every other person who lives in this country. We have the right to choices and to live in our homes. We do not deserve to be punished because we live with disabilities which may limit us, but which do not take away from our value as American citizens.

For the longest time Disabled Americans took the crumbs they were offered and just let life go on. You may have seen isolated instances of the Disabled people speaking out in their own particular situation trying to get people to listen. Since 1993, this has changed. The numbers of Disabled Americans speaking out on issues which are important to them or to their living as productive Americans continues to grow. This is because of an activist group called ADAPT (American Disabled for Attendant Programs Today). ADAPT's first issue was access to public transit. Now they fight to free people from nursing homes by the establishment of attendant services in all communities in the USA. Most of their members are users of attendant services and many had to fight to free themselves from nursing homes and similar institutions.

You will see a lot of information in this article about ADAPT. The reason for this is to allow the voices of Disabled Americans to be heard through these courageous people who are fighting for the rights of themselves and those unable to fight. It is also because I believe what they are fighting for is something which will benefit all current Disabled Americans; future Disabled Americans; and society as a whole. (More about this group will be explained in a later section of this article called The Actions of ADAPT. You may also visit their web site at ADAPT.)

Their fight represents the very ability of Disabled Americans to be just as productive, vocal, and able as any American to fight for their rights. This, in and of itself, shows the abilities of this growing segment of society to be active participants within their communities. Why not help all Disabled Americans to be productive citizens by providing them with the services they need?

In a country where we value our freedom, this segment of society is expected to take whatever they are given and just continue to survive. Disabled Americans need and deserve special services which will help all of them be more productive and will allow them to live and function within our communities. If this happened to you, wouldn't you want the same things?

I believe this article to be the most important article I have written to date. I see the information in this article as valuable to everyone. I hope the reader will read this article with an open mind. I hope the reader will see that even though they may not now be a part of this segment of society, the information in this article will help and benefit them if they should become a part and themselves become disabled. Please do not take your life, as it is right now, for granted. You may be active and normal today, but tomorrow that could all change. If you were to become disabled, how would you want your life to be? Would you want to loose your ability to choose how you live or where you live just because you become disabled?

Nursing Homes

Reports on nursing home abuse show that 30% of the facilities are cited for instances of abuse. Still, even more alarming is the nursing home abuse statistics showing that the majority of all nursing home abuse instances are never even reported. The nursing home abuse statistics include severe instances of abuse ranging from death to malnutrition and dehydration, inadequate medical care, and many other serious injuries and conditions. (Taken from the Nursing Home Abuse Resource.)

Please, understand I am not meaning to just make nursing homes appear to be all evil. Even ADAPT is not requiring that all funds be taken away from nursing homes. They are asking for 25% of nursing home funds be redirected to help with attendant services. I do want everyone to have all the facts should they need to make an informed decision.

I know how easy it is to have no options. I have home health care which includes 56 hours of an aide every week, but that could change at any moment. Medicaid keeps talking about making cuts in home health. If that happens, I will be in trouble, because I require these services to continue to live in my home. I am not suppose to be alone to shower, I am unable to cook, clean, or any other strenuous physical activity because of the my disease. I also shake too bad when holding things to be able to complete the tasks. I am not alone, there are many who require these services and others. There are many people who are being threatened with loosing these benefits, or who have been unable to receive any help and this in turn forces them to live in a nursing home.

I am housebound because there are limited services to help me go anywhere. My boyfriend helps to some degree, but according to the state I am housebound and should remain that way. In my situation I have been told, that I could loose my services if I do not comply with this. You see if you need these services then you are not permitted to leave your house. Requiring these services means you are housebound. At least this is how it is here.

Even thought this is not as bad as being in a nursing home, I do not believe anyone should be forced to be housebound because they require the use of attendant services. This is a form of medical house arrest. We should be able to leave our houses and services should be provided to help. There are ways to make these services available to the disabled.

Ohio is one of the states which does offer some attendant services. They just put a great deal of restrictions on them. They also have forced people to live in nursing homes because some counties do not offer much in the way of home health services. Even though many of the programs are suppose to be state wide.

My situation may seem bad, but others deal with much worse. I would rather be housebound then in a nursing home. At least I am in my own home. For many others, this is not the case.

We are trying to get people to understand that we want the choice. Many may choose to be in a nursing home. They may be far to sick to survive in a home environment and this may actually be the safest place for them. If that is the case, then fine. This is all about choices. If someone does not want to be in a nursing home, they should have other options made available to them. No one should be forced to be in a nursing just because they are disabled and need some help with daily activities. They should not be pressured to make this choice because there are no attendant services available for them.

About the Legislation in Place to Help the Disabled

The Americans with Disabilities Act and The Community Choice Act are geared toward making the lives of people with disabilities better. The Community Choice Act will add to our lives what the Americans with Disabilities Act did not.

The links at the end of this section will give the reader the details of these acts. I only want to give the reader the information here based on how these acts are viewed by those of us with disabilities.

* Americans with Disabilities Act ....This Act was signed in to law on July 26, 1990. It paved the way for modifications to be made to help people with disabilities. This act was mostly geared at how the Disabled are dealt with in employment and in the business community. It focused on modifications for those who must use assistive devices to walk and navigate.

The plight and problems of the Disabled American is far broader then this act covered. However, it was a great first step in getting people take a look at the problems faced by Disabled Americans.

No one will ever say that this act was not beneficial to people with disabilities, but it seems this was only a beginning in dealing with issues of people with disabilities. There are many others which need to be addressed.

Though this act helped to get people aware of the problems of the disabled, it did not get people to realize that disabled people deserve the right to live in their homes. If it had done that there would be no need for us to have to fight now. As disabled people, we will fight until we have gained the right to choose how we live and will fight for the services to be provided which will help us stay in our homes.

While the attendant services are not made available to every person with disabilities, we can not realize or experience our true place in American Society. We are excluded without these services. Those who have disabilities are ready to fight for their own freedom.

* The Community Choice Act ...Community Choice Act of 2007 - Amends title XIX (Medicaid) of the Social Security Act (SSA) to require state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals.

Outlines requirements for: (1) an enhanced federal medical assistance percentage (FMAP) for ongoing activities of early coverage states that enhance and promote the use of community-based attendant services and supports; and (2) increased federal financial participation for certain expenditures incurred by the state for the provision of such services and supports.

Directs the Secretary of Health and Human Services to: (1) award grants to eligible states which have established a Consumer Task Force to assist the state in its development of real choice systems change initiatives; and (2) conduct a demonstration project for the purpose of evaluating service coordination and cost-sharing approaches with respect to the provision of community-based services and supports to dually eligible individuals.
(Taken from WashingtonWatch.com.)

The Community Choice Act would establish community-based services in all States across the US, reforming Medicaid and ending the institutional bias that forces hundreds of thousands of people with disabilities into nursing facilities and other institutions.

This act will allow us the freedom to make choices about our living arrangements and have the lives we deserve. It will allow us to stay in our homes. This act is a major focus of the fight which ADAPT is fighting through peaceful demonstrations. Many in their wheelchairs continue to protest to bring about the completion of this bill. (The actions of adapt are explained in the next section.)

These links which will explain the details of both of the Legislative Acts mentioned in this section.
* The Community Choice Act Summary
* Database for Community Choice Act Alerts
* Talking Points on the Community Choice Act
* Americans with Disabilities Act

The Actions of ADAPT
This country has always been one of people speaking out for what they believe in and standing strong to face these battles. It happened with the Union demonstrations, Women fought for the right to vote and later burned their bras as a protest for equal rights. In the 60's people protested the war in Vietnam and civil rights demonstrations were everywhere. Abortion as been another big source of protest and continues to be one which both sides continue to battle. Today, there are demonstrations by people protesting the war in Iraq. We are people who take action about things we believe in and take stands to produce change.

The Disabled Americans are doing this to fight for their right to live in their homes. The Activist Group ADAPT is taking action to fight this right and to secure the attendant services to make this possible for all those who are disabled. They are fighting to get the Community Choice Act passed and enacted.

Many of these people are in wheelchairs, but their voices are heard. The actions of these courageous people speak loudly about the abilities of Disabled Americans. We may be limited by our disabilities and handicaps, but they do not stop us from fighting for our rights.

Their demonstrations do not hurt any one. They are peaceful demonstrations. They do not carry weapons or tools for destruction. They are armed only with their mouths and represent all of us with disabilities.

They take this cause very seriously and many have gone to jail for this cause. The title to one of their articles says it clearly, "I'd Rather Go to Jail Than to Die in a Nursing Home." This is the attitude of all the members of ADAPT. (Read the article by clicking on the linked title in this paragraph.)

The links below will give an idea of what these protests are all about and what they are like. I have posted the links to let the reader see first hand the abilities of people with Disabilities. The Action Reports you will read are explaining events beginning with one in Washington in April, 2007. There is one in Chicago on August 20, 2007. Then there are several which were in Chicago during the week of September 8 - 13 of 2007. Those from Chicago are listed beginning with the most recent first.

The following Action Reports will show the true nature of the actions of the group ADAPT.
Washington D.C.
April 30, 2007

Chicago
September 8 - 13 of 2007
August 20, 2007

Adapt will also help disabled people who want to get out of a nursing home or other institutions by giving them instructions and information on how to do it. Many of them have gotten out of nursing homes, and they know what it takes to do it.

"You can't live on your own. You'll never make it." Does this sound familiar?

That's what they told Karen, a woman who lived in a nursing home for 12 years. She has Cerebral Palsy and that is the only reason she was in there. Karen has been living in her own apartment for over five years. It hasn't always been easy, but Karen and others like her are proving them wrong!

Now Karen is part of a group of folks with disabilities who are trying to change the system. American Disabled for Attendant Programs Today (ADAPT) is working to help people get out of institutions, nursing homes and State Schools. ADAPT believes one quarter of the money which goes to keep people in nursing homes and State Schools should go to provide community based attendant services so people can live in their own homes.

If you'd like to talk to someone about getting out of a nursing home, or if you just want more information, give them a call. Each local contact person is listed at the following link, ADAPT Contacts. Click on your state and you will find the ADAPT contact person closest to you.

Click on the following links to find out more information about ADAPT and their commitment to helping Disabled Americans.

Access Across America.
ADAPT's Housing Commitment.

The Costs of Being Disabled

There is another aspect to the need for Assisted Services for Disabled Americans which seems to get left out of many of the debates. It is costs of being disabled. It is not just medications, doctors, or home health. It is equipment. Many of the disabled are not rich. As a mater of fact, many of us are poor. We have to depend on Medicare and Medicaid. Although they may pay for a lot of this equipment, many times we do not get the best of equipment or even adequate equipment. My wheelchair is far from being comfortable, but is what I can have been given based on what Medicare and Medicaid will pay allow.

Think about this. You spend all your time in this wheelchair, but you are not expected to do so comfortably. Different diseases cause different problems. People are in wheelchairs for many different reasons, but the wheelchair I have is standard for all. It does not allow for much flexibility.

This is not just my story. It is the same for many with disabilities. Many are even in worse shape then I am who are forced to stay in manual chairs because they are not permitted power chairs.

Someone stated to me, " Well, just go buy a better chair yourself." Obviously this person was being very ignorant of the cost of these items. Go to Google, and type in Power Wheelchairs and see what pops up. You will get many different companies which will be more then willing to sell a person a power chair; for the right price of course.

Even the discounted ones are a couple of thousand dollars. Many do not accept Medicare or Medicaid. Even if they did, Medicare and Medicaid may not approve it. If you already have one, they won't approve another one even if it would be better for you or you are willing to give the old one you have to help someone else.

The disabled have few choices if they are on Medicare and Medicaid. They must accept what they are given and are expected to be grateful for it. They are not allowed to expect a better quality of life. They must just function with what they are given and like it.

"If the lack of proper equipment or services force disabled people into nursing homes, then who cares. At least they are being cared for and that is the important thing." This mentality is cruel, but I have heard it stated many times by many different types of people. It says that because we are disabled, we get what we deserve. It adds insult to injury by saying we don't deserve better lives and the right to have choices. It is a way of punishing us for being disabled.

The only ones really benefiting are those who are getting rich at the expense of Disabled Americans. They are the ones selling the equipment and accessories, or running the nursing homes. They are leading great lives, and their choices are not being taken away from them. They get rich while we get locked away.

This is why we must continue to fight for our rights. Maybe one day we will get what we deserve. The right to a good quality of life, and the right to make the choices which will keep us in our homes.

Conclusion

I hope this article has made the reader understand the importance of allowing everyone the freedom to live their lives outside of institutions. No one wants to loose their freedom. Why should someone loose their freedom simply because they need help? We did not ask to become disabled, yet we must pay for it by loosing the basic freedoms most people take for granted. The freedom to live in our own homes.

Right now many Disabled Americans are housed in nursing homes and other institutions when they could be living in a home. Many of these people could be freed with Attendant Services within their communities. They deserve the right to choose where they wish to spend the remainder of their lives.

There is nothing more precious then freedom. No one has the right to take another person's freedom away just because they have a disability. ADAPT members have proven through their own activities and actions that people with disabilities can provide a service to their communities. They are vital, productive Americans which are speaking out and taking action to protect the rights of Disabled American in spite of their own disabilities.

I have heard many say that to protest is to be unpatriotic. I believe it reflects just the opposite. It is very patriotic to care and love your country. We do this by expressing our beliefs and ideas. We have the right to disagree with the happenings in the country we love and to say we disagree. We express our patriotism by showing love and compassion for all Americans, including those who are disabled.

The segment of society known as the Disabled Americans is growing and will continue to grow. If you are lucky enough to avoid becoming disabled yourself, someone you know and love will become disabled. It is something destined to affect everyone at one time another or in one way or another. The fight for the rights of the disabled is one which will benefit those who are disabled now; those who will be come disabled in the future; family members of Disabled loved ones; or those who care for the disabled. It is a cause worth fighting for and one which is important to society as whole.

This writer will continue to take up this battle with her computer. I have fought many battles with the use of my computer and this is just one more to add to the long list. I will continue to be the voice of those who are unable to speak for themselves. I will continue to fight for my own rights, and the rights of all my comrades with disabilities. I urge you to do the same. You will not be sorry for your efforts.