What's at stake - Learn about this issue!

The Department of Labor (DOL) has proposed changes in federal labor rules that will have a significant negative impact on people with disabilities. These changes will most seriously impact people who have the most significant disabilities and rely on Medicaid services to live in the community. 

Labor advocates have urged people to support these rules to assure that attendants get paid minimum wage and are paid time-and-a-half for overtime work. The disability community recognizes the invaluable role that attendants play. We don’t oppose the requirement that attendants be paid minimum wage, but the overtime requirement will have a serious negative impact on people with disabilities.  In short, the proposed changes will: 

Force seniors and people with disabilities into institutions!

Increasing the cost of home and community based services by requiring overtime pay, without increasing the Medicaid rates or raising the Medicaid caps for available funding, will result in a reduction in hours of personal assistance, forcing some people with disabilities into unwanted institutionalization. The Department of Labor, itself, identified that some people would be forced into institutions because of these rules.

Cut the take-home pay of attendants!

Because Medicaid and Medicare rates are not being increased to cover the additional cost associated with these changes, states and home care agencies will simply limit the hours attendants can work, forcing attendants who currently work more than 40 hours a week to work for multiple agencies in order to match their current standard of living.

Reduce the attendant workforce!

Family and friends frequently work as attendants in consumer directed programs. These attendants won’t do attendant services for someone else. Consequently, we will lose those hours. By limiting the availability of family and friends as paid attendants in consumer directed personal assistance programs, the Obama administration will reduce this vital component of the attendant workforce and that will further threaten the independence of Americans with disabilities.

Force people with disabilities to hire strangers as attendants!

The Department of Labor dismissed concerns that their proposed rules would require people with disabilities to hire additional attendants. They noted that in traditional programs, turnover is high. However, they never considered that consumer directed programs are different. Attendants in those programs – some of whom are friends and family – may work for an individual for many years. With the hours attendants may work capped, people with disabilities will have to cut the hours of these trusted workers and bring strangers into their homes who will assist them with their most personal care.

Devastate consumer directed programs!

The Department of Labor did not adequately assess the impact of their proposed rules on consumer directed programs. In their analysis, the Department of Labor stated that "There is no consolidated source of data on state consumer-directed programs" even though there are several national resources devoted to the services within the disability community. It is our understanding that the Department of Labor has decided to determine who is the "employer" using an economic determination, which would determine that the agency is the employer in the vast majority of consumer directed programs. Even though the individual hires, trains, supervises, and dismisses their attendants. This approach disenfranchises the vast majority of people with disabilities who receive Medicaid services.

DOL Off My Body!

It's my body! The Obama administration and its Department of Labor have no business regulating me as if I were an assembly line! I want control of MY body – and who comes into my home, sees me naked, and touches me!

I should decide who touches me in bed...

but the Obama Department of Labor says it's their decision!

TAKE ACTION NOW!

As a law student I have learned that while our U.S. Constitution does not contain an express right to privacy, our nation and the Supreme Court of the United States have found that Americans do have a right to privacy. In fact, in 1992 the Supreme Court stated that "It is a promise of the Constitution that there is a realm of personal liberty which the government may not enter."

But now the Department of Labor is breaking that promise and entering a realm of personal liberty which the government may not enter - our bedrooms! The Department of Labor - under President Obama - has decided that it should regulate who touches people with disabilities in bed instead of allowing people with disabilities to make that decision for themselves by proposing rules that would require us to bring strangers in our homes and our bedrooms. 

The Supreme Court has consistently found that Americans have right to privacy in the bedroom. In Planned Parenthood of Southeastern PA v. Casey and in Lawrence v. Texas, both cases involving personal decisions made in the bedroom, our Supreme Court stated:

"These matters, involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are central to the liberty protected by the Fourteenth Amendment. At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life. Beliefs about these matters could not define the attributes of personhood were they formed under compulsion of the State."

For people with disabilities, deciding who your attendants are, how many attendants you have, who sees you naked, who helps you shower, who cleans you up when you use the toilet, and whoprepares you for sexual activity are all very personal choices that are central to our personal dignity and autonomy. The Fourteenth Amendment should protect the liberty of people with disabilities, just as it protects people without disabilities. At the heart of our liberty is the right to define our own concept of existence, including who assists us in our most personal matters. Our personhoods are stolen from us when choices about who assists us are made under the compulsion of the Department of Labor. 

Not only is the Department of Labor violating my right to privacy, it is also violating theExecutive Order that President Obama signed in January 2011 that sets the expectation that government agencies will "seek the views of those who are likely to be affected" by new rulemaking. Despite this explicit requirement in the Executive Order, the Department of Labor never worked with the Disability Community, including people with disabilities who use consumer directed personal assistant services. 

TAKE ACTION NOW!

Even though the Department of Labor didn’t work with the Disability Community, they did work closely with other groups - like PHI and the National Employment Law Project which are strong supporters of the rules. PHI is mentioned about 30 times in the proposed rules and NELP is mentioned seven, either in the text of the rules or in the footnotes. Conversely, the Department of Labor did not reference ANY of the major national disability organizations. As you read this, you might think that the Department of Labor simply forgot to mention the disability groups they worked with, but when you analyze the proposed rules, it’s clear that wasn’t the case.

The fact that the Department of Labor didn’t engage the Disability Community is obvious when it describes consumer directed services in the proposed rules. They note that "There is no consolidated source of data on state consumer-directed programs." Really! Apparently, staff at the Department of Labor are unfamiliar with this amazing resource called "Google".

Of course, they could have also called a Center for Independent Living and gotten the information the needed. Center staff are very familiar with any number of disability organizations around the country, which would be excellent sources of information on consumer directed services, including theNational Council on Independent Living and ADAPT. 

The only explanation for the omission is that the Department of Labor deliberately excluded the Disability Community from the process!

Advocates for this rule were well aware that the Disability Community had concerns about this policy direction. Disability groups in New York have expressed concerns about implementation of the Coke decision. Other national disability organizations had raised concerns about federal legislation which would require overtime pay. So, instead of seeking information from these organizations and the Disability Community which has a wealth of information about these programs but would also raise legitimate concerns, the Department of Labor relied on PHI to provide its analysis of the program. That way they could avoid needing to deal with the concerns the Disability Community had.

By not engaging the Disability Community in a dialogue about this important issue that will affect the lives of many people with disabilities in the most personal ways, the Department of Labor has not only violated the Executive Order, but also made a huge mistake. They ignored a long history that has clearly illustrated that people with disabilities are the best experts on how to assist people with disabilities. 

While earning my master’s in Disability Studies, I have read over and over again about how people with disabilities are in the best position to direct the assistance that we receive. The first Independent Living Center in the nation was created and directed by people with disabilities. The Americans with Disabilities Act was written based on the personal stories of injustice and discrimination that people with disabilities faced. The model of consumer directed services was developed by the Disability Community. It is a proven fact that the best outcomes are achieved when people with disabilities are involved in the process. Beyond proven fact, it is also just common sense – our input is vital because the rules will crucially affect us. 

I feel that the Obama administration is treating people with disabilities differently than it would treat any other group. Would the administration have developed rulemaking directly affecting African-Americans without engaging them? Can you imagine the administration pursuing rules that would affect the right of women to make decisions about their bodies without engaging ANY of the women’s organizations? Of course not! That’s why this is not only wrong – it’s utterly offensive! 

Now, to be clear, I don’t use attendant services. Not yet. However, I am realistic about what the future will hold and understand that it is very likely I will need attendant services. Right now, without attendant services, I decide who can come into my bedroom. I decide who touches me in bed. In the future, when I need attendant services, I should be able to still make those decisions. For the Department of Labor to make those decisions for me without my consent is criminal.

Luggage Tips for Wheelchair Travel – Packing to Carrying

The modern wheelchair provides the wheelchair user tremendous mobility and independence.  This ability transfers into more opportunities for solo business and pleasure travel.  Sometimes these trips require carrying a fair amount of luggage and gear.

The problem arises when wheelchair users attempt to apply able-bodied luggage systems such as rolling suitcases to wheelchair travel, or alternatively carry a large backpack on their back.  Only small suitcases are able to balance on the wheelchair user’s lap, and towing a large rolling suitcase risks a backward fall. A wheelchair user needs significant trunk control to handle the weight of a heavily loaded backpack. So what do you do when you have a lot of stuff to carry combined with a maneuverable but “tippy” wheelchair?

I am a T5 paraplegic.  When I travel and need to bring a “lot of stuff”, I use a six bag system. Six bags may sound like too many, but there is a method to the madness.

1. One small pouch contains all wheelchair related tools and supplies such as a spare inner tube, tire irons, Allen wrenches, lights, etc.
2. I use my everyday knapsack for carrying keys, glasses, and other personal items.
3. I use a medium sized cylindrical duffel bag for clothes and/or gear.
4. I use a rectangular bag with compartments for clothes and/or gear.
5. I use a medium sized backpack for more clothes and/or gear.
6. I use a large hockey duffle bag for consolidation for airline baggage.

For airline travel, in order not to exceed the fifty pound weight limit for a checked bag, I would put 25lbs in the Cylindrical Bag, 25 lbs in Rectangular Bag , and the remainder in the Backpack as a Carry-On as necessary. The Knapsack becomes the Personal-Item.

When I am on the move, I use the following setup:

1. The Pouch hangs under my seat.
2. The Everyday Knapsack goes on the back of my wheelchair.
3. The Cylindrical Duffel bag is place on my feet and bungeed securely to the front of my wheelchair.
4. The Rectangular Bag goes on the Cylindrical Duffel and my knees.
5. The Backpack goes on the back of my wheelchair over the Knapsack.
6. The Large Duffel bag is stored in any one of the other bags as most convenient.

The benefit of this multi-bag carrying method is that the Center of Gravity of the wheelchair is not dramatically changed.  This means that I am still able to pop and maintain wheelies for rough terrain and jump down curbs as needed.  Since the Rectangular Bag is not pressed up against my chest, I am able to lean forward for going up ramps and other inclines. On a side note, if a bag that I am carrying on my lap restricts my forward lean, I have found that going up backwards works very well.

In the event I was traveling from place to place with all my luggage and gear (i.e. backpacking through Europe) I would consolidate to a front Cylindrical Duffel, a rear Backpack, the under seat Pouch, and use a front Fanny Pack for items that need to be readily available such as money, phone, and camera. Valuables such as Passport and Cash go in an Hanging Pouch under my shirt for added security.

As long as the front Cylindrical Bag is tightly fastened this system is very stable and mobile. I have used this system in Europe, Korea, and Venezuela all while traveling solo.

For those that don’t feel that their feet make a stable enough platform to support the Cylindrical Bag, there are commercially available Folding Forks designed for that specific purpose.

In summary, bungee cords and duffel bags beat hard suitcases for wheelchair traveling almost every time.

Higher Ground-Adaptive Sports in Sun Valley Idaho

Tell the Obama Administration and OMB there should be NOTHING ABOUT US WITHOUT US

Help us stop proposed rules which will hurt people with disabilities and attendants.

For over a year, we have been pushing back against a proposal by the US Department of Labor to change the companionship exemption which will have a negative impact both on people with disabilities and attendants. If these rules are implemented people with disabilities will be forced to cut the hours of long-term attendants and hire strangers to replace them. According to DOL’s own analysis, some people with disabilities will be institutionalized as a result of these rules.
These rules are problematic because the Department of Labor failed to work with the Disability Community when it was first developing them. Despite assurances that the administration would work with the disability community to resolve the problems with these rules from Cecilia Munoz of the Domestic Policy Council and the President, himself, the administration has – instead – sent the rules to the Office of Management and Budget for final approval.
Make your voice heard! Tell the Office of Management and Budget and key Presidential advisors that the Obama administration should do the right thing and work WITH the Disability Community to find a solution that works for everyone rather than ignoring our concerns.

SEND A MESSAGE NOW! Click the link.

8 Month Old Deaf Baby's Reaction To Hearing For The First Time!

Spread the Word! March 6-End the R word awareness day

On Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD).

Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.