I’ve been racking my braintrying to figure out how to explain this to you. I guess it’s about a dumbing down, a denial of respect, a denial of dignity, a loss of voice.

I have a voice. I have a well thought out opinion. I have valuable knowledge. I am capable of making sound decisions.

But some people apparently think I don’t and I’m not. Just because I use a wheelchair. There’s a stereotype, an assumption, that people who use a wheelchair, people who are blind, people who are deaf, and other people with disabilities are not very intelligent.

As a result, some service providers, family members, co-workers, and community members feel compelled to tell us what to do. They feel a need to instruct us, guide us, inform us, explain to us, decide for us, and lecture us about how we should live our lives. And then they want to speak for us.

In other words, they treat us like children who must be protected for their own good. How terribly patronizing. It curls my toes. It sets me to screaming in frustration.

I am 46 years old. I have a college degree with a 4.0 GPA. I am a successful professional. I raised two children into two awesome and successful adults. I am not a child. Despite the fact I use a wheelchair.

I don’t need you to tell me how to manage my disability, what health care to pursue, what prescription drugs I should be taking, what supplements I should be taking, what food I should be eating, what exercise I should engage in, what extracurricular activities I should be participating in, where I should be living, whether or not I should be applying for social security benefits, what I should think, what I should believe, what I should do, and how I should breathe.

I really can figure these things out for myself. I am capable of doing my own research. And I have. I am capable of seeking out and evaluating the opinions of professionals. And I have. I am capable of weighing all the evidence and deciding for myself. And I have.

Why is it some people without a disability automatically think they know better than a person with a disability about how to live with a disability? It just doesn’t make sense.

Then some people without a disability want to speak to other people without a disability about what it’s like for people with a disability. How about if people with disabilities speak about what it’s like for people with disabilities?

I have a voice.

TASH, a civil rights organization for people with disabilities (www.tash.org) shares the following verse:

“You do not know what I see, what I believe, what I dream, what I know. You do not live my life! You cannot be my voice. - From the Voice of the Highly Regarded (If I ever do want you to speak for me I’ll give you a call.)”

T-shirts with the saying are available from The Nth Degree at www.thenthdegree.com<http://www.thenthdegree.com>; .

Sometimes I might have an opinion with which you might disagree. Sometimes I might make a decision with which you might disagree. Sometimes I might take a risk and do something that’s not totally safe. And that is my right.

There is dignity in formulating my own opinions. There is dignity in making my own decisions. There is dignity in taking risks. Not to mention a life well lived.

Show me respect my granting me this dignity. 

Published: http://www.summitdaily.com/article/20090315/NEWS/903159975/1078&ParentProfile=1055&title=Disability%20101%20%20I%20Have%20a%20Voice

The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.

Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.

The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.

Why can’t patients live in their communities with the same funds?

Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it’s also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.

Home care can also create more jobs. And it allows people to remain productive members of their communities.

So why hasn’t this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.

It’s time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.

With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.

The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania’s congressional delegation, including both of its U.S. senators, have signed on in the past.

Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?

Philadelphia Enquirer Op-Ed on February 24, 2009

The authors, Cassie James Holdsworth and Nancy Salandra, are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources. Liberty Resources, Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.

For more information, see www.libertyresources.org.

1. Focus on your state’s Medicaid nursing facility expenditures.

Nationally, from FY 2002 through FY 2007, the national % increase in Medicaid nursing facilities’ expenditures was only 1.3%. However, many states had significantly larger increases.

The following 21 states had more than a 20% increase in nursing home expenditures during these six years: Alabama, Alaska(45%), California, Colorado, Connecticut, Delaware, Florida, Hawaii, Kentucky, Maine, Maryland, Mississippi(55%), Nevada(45%), New Hampshire, North Carolina, Oregon, South Carolina, Tennessee, Utah(70%), West Virginia (35%), and Wyoming.

Organize to force your state to cap its nursing facility expenditures.
As long as your state continues to increase its Medicaid nursing home expenditures, nursing facilities will have an incentive to admit people who could otherwise live in the community. Therefore, no more Medicaid increases to unnecessarily institutionalize people with disabilities.

2. Save Medicaid funds by transferring nursing homes expenditures.

Get your state to tell nursing home residents that if a person moved to the community each of them will receive at least 90% of the amount of Medicaid funds your State spends on them in nursing facilities. In FY 2007, nationally states spent nearly $47 billion of Medicaid expenditures on nursing homes, compared to only $6.3 billion on all Aged/Disabled Waivers in the community.

For people who want to live in the community, your state could save 10% of the nursing home expenditures and, at the same time, do what people want
– permit them to reside in their own homes and apartments with services paid with the 90% of the nursing home costs.

3. Save Medicaid funds in hospital reimbursements.

In FY 2007, nationally states spent $43 billion on in-patient hospitalizations. Many of those people were hospitalized for some time because there was not a community-based support system where they could receive the same supportive services they were receiving in the hospitals.

I do not have good data that reflects how many days people were unnecessarily hospitalized primarily because there was not system to provide services in the community. However, I do know that nearly 60% of nursing home admissions are directly from acute care hospitals. Many of those people would not have gone to a nursing facility if there were a real choice and if someone explained to talked to them about community-based services.

4. Close the front door of nursing homes.

I am still dumbfounded why 11% of nursing home admissions are for persons who were in their own homes and apartments and had not received any home health services before they went straight into a nursing facility. (This 11% is separate from the 60% who were admitted from an acute care
hospital.) Clearly, states have not “closed the front door,” but still permit people to be admitted directly into nursing homes without the state Medicaid officialsb or advocates for elderly and disabled b asking these folks what services they might need and want to stay in their own homes and apartments.

5. Other Suggestions - Send In Your Ideas!

Please email to stevegoldada@cs.com, subject: “save Medicaid funds”.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects.
To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.

(Washington, DC) U.S. Senator Tom Harkin (D-IA) praised the efforts of the Road To Freedom bus crew for their part in the advocacy leading to the passage and signing of the ADA Amendments Act. For nearly two years, disability rights advocates have traveled the Nation in a modified bus educating citizens and policymakers alike of the pressing need to restore vital civil rights protections of the Americans with Disabilities Act (ADA).

On September 25, President George W. Bush signed the ADA Amendments Act into law and ADA Watch and the National Coalition for Disability Rights, the nonprofit organizations behind the Road To Freedom bus tour, praised all of those involved in this successful campaign to advance disability rights.

In recent years, the ADA - the world’s first human rights law for people with disabilities - has been dramatically narrowed in the courts leaving citizens with epilepsy, diabetes, mental illness, HIV-AIDS and other disabilities unprotected from discrimination. The ADA Amendments Act clarifies the intent of Congress and reverses the “judicial activism” that has resulted in more than 95% of employment-related ADA cases being dismissed on summary judgment.

Senator Harkin, lead sponsor of the ADA Amendments Act, acknowledged ADA Watch/NCDR’s role in passage of this legislation on the floor of the Senate, thanking the Road To Freedom’s crew for “dedicating almost 2 years of their lives traveling on a bus around the country to every State, showing people about the importance of restoring the protections of ADA.”

ADA Watch/NCDR founder and president, Jim Ward stated today, “This is a monumental victory for people with disabilities. As America seeks to respond to the economic challenges we face, this law - if enforced - will assure that people with disabilities are fairly included in the workforce and that we can do our jobs free from discrimination.”

“ADA Watch and the National Coalition for Disability Rights praises the thousands of Americans who produced and participated in Road To Freedom bus stops as, together, we called for restoration of the ADA. Likewise, we praise the tireless efforts of advocates such as Andy Imparato, Sandy Finucane, Curt Decker, Chai Feldblum, Jennifer Mathis, Arlene Mayerson, Shereen Arent, Donna Meltzer, Nancy Zirkin, Michael Collins, Yoshiko Dart, Tom Olin, Debbie Fletter Ward and so many others.”

The National Coalition for Disability Rights (NCDR) is a coalition of national, state and local disability, civil rights and social justice organizations united to protect and promote the human rights of children and adults with physical and mental disabilities.