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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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Quest Vol. 15, No.5  September to October 2008

Game to Get Away

Online games provide an alternate world in which to play, say gamers with neuromuscular diseases. Here’s a primer of terminology, gaming options, social tips and info on how playing may affect muscles. In addition, Kid Quest, page 69, provides Internet gaming safety tips for kids.
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    Home> Publications > QUEST Extra >Volume 14, Number 4, July/August 2007

U.S. Justice Department Mediation Program Helps Settle ADA Complaints

The no-cost ADA Mediation Program, operated through the U.S. Department of Justice, provides impartial mediators to help parties discuss ADA violations and reach mutually agreeable solutions.

The DOJ says that in the last five years, 90 percent of ADA cases against government agencies and businesses were settled using mediation instead of through lawsuits. According to one DOJ staffer, “We’re not trying to get litigation; we’re trying to get compliance.”

It’s not necessary to have an attorney to participate in mediation. If no agreement is reached, the person who brought the complaint, or the DOJ, may pursue other legal remedies. If agreement is reached, the case isn’t formally closed until the solution has been implemented.

How to file a complaint

The easiest way to file an ADA complaint with the DOJ is to visit the ADA home page – www.usdoj.gov/crt/ada/adahom1.htm – and click on the Enforcement link at the top of the page.

Or, write to the U.S. Department of Justice, Civil Rights division, 950 Pennsylvania Ave. NW, Disability Rights Section – NYAV, Washington, DC 20530.

Complaints may be filed in the Title II category, covering violations by state and federal entities, or the Title III category, covering violations by businesses and public accommodations, like restaurants, hotels, public transportation, schools, sports stadiums, movie theaters and more. Title I complaints deal with employment discrimination based on disability.

Indicate on the complaint if mediation is desired; sometimes DOJ decides on its own to send the case to mediation. One warning: Complainants who refuse to mediate may have their complaints closed without a DOJ investigation. However, if the alleged violator refuses to mediate, DOJ automatically institutes a formal investigation.

For more on the ADA, see the articles in the July-August 2007 issue of Quest.

Living In an ADA World

by David Sweetman

Donna and David Sweetman
Donna and David Sweetman

I have IBMPFD (inclusion body myopathy associated with Paget disease and frontotemporal dementia), an adult-onset genetic disease covered by MDA.

My wife and I enjoy traveling and eating out, and have gained a lot of knowledge about what is available in terms of accessibility and what we need to do for ourselves.

The ADA has significantly helped increase accessibility, but there are limitations. The ADA does not (and probably cannot) apply to the entire population. Two major limiting factors are:

  1. The wide variation in types of impairments. Different people need different aids at different times and locations.

  2. The wide variation in physical size of those who are impaired. For example, I am 6’4”, and finding comfortable facilities is almost impossible, even if I were healthy. The needs of a small person who is completely wheelchair bound are different from those of a large person with some mobility.

Society cannot readily provide the infrastructure (at significant cost) to make things convenient or comfortable for everybody. While the ADA has made getting about a lot easier, we still must take responsibility in order to improve our traveling experiences. Each of us must be prepared to deal with lack of aids by using our own items that fit our specific needs, and by telling others the best ways to help us.

"Clueless" is a strong term to describe people without disabilities, even if accurate. The problem is the difficulty in obtaining clues. For someone who is not impaired, the ability to recognize and deal with mobility problems is quite a task. These are problems that are difficult for the impaired person to learn how to deal with, much less to expect a fully mobile person to know how to deal with.

We need to recognize that the problem is mostly lack of knowledge and experience, not an active desire to limit the impaired. Those of us who deal with the "clueless" need to be patient and tolerant, and do some educating.

I believe that education will be more effective than laws in spreading ADA implementation. For example, we can educate businesses about the large mobility impaired population that will utilize accessible facilities. We can educate hotels about well-designed handicapped-accessible rooms, which have a higher occupancy ratio than either regular rooms or poorly designed handicapped-accessible rooms, meaning a better return on investment.

The following are suggestions we have found both help us and encourage those who want to improve but do not know what to do or how:

  1. Carry a "booster seat" for all those low toilets. Use a “booster” or “up-lift” seat in restaurants, or request a chair with arms.

  2. Carry a walker or multiple-point cane for all those bathrooms without grab bars in useful locations.

  3. Fill out comment cards noting deficiencies in handicapped-accessible rooms, such as the room is far from the elevator or the showerhead is in the wrong position.

  4. Always tell business managers about the inadequacy of bathroom grab bars, accessible parking, or space for driving a scooter or wheelchair.

  5. Do repeat business at places that do a better job.

  6. Do not be shy about requesting assistance; most people are glad to help. Be prepared to suggest how to best accommodate your specific needs.

  7. Always thank people who help you, including a smile.

For more on the ADA, see the articles in the July-August 2007 issue of Quest.

David Sweetman, 59, Dyer, Nev., is a retired vice president of quality & reliability at Silicon Storage Technology (SST). Sweetman administers a Web site about IBMPFD at www.ibmpfd.com

 

Fighting the 'Do We Have To?' Mentality

by Bill Norman

Jordan Woods
Jordan Woods

Jordan Woods, 19, says one of the things he’s learned to expect in the older town (Athens, Ga.) where he’s attending college is that many of the public buildings are not accessible to people like him, with Duchenne muscular dystrophy.

That’s not so much the case at the University of Georgia, where Woods is a sophomore with a major in International Affairs and minor in Arabic. He hopes to work for the government in the intelligence field, focusing on foreign policy.

Because he’s a full-time student, he hasn’t much spare time off-campus to seek out and confront businesses that are not ADA-compliant. “Instead of approaching business owners that may be reluctant to take requests, I have spent a lot of time figuring out which businesses I can access,” he said.

Woods’ pet peeves include poorly designed sidewalk curb cuts and businesses that lack a wheelchair ramp to ascend a height of one or two stairs.

“Business building codes that address aisle width [as in restaurants], should have to take into account the reduced access width” that occurs when other diners at tables back their chairs into the aisle, he said. “The code should factor in six to 12 inches extra so the aisle is wide enough, even if I’m going between tables.”

Jordan’s father David, an architect, notes, “In commercial architecture, compliance with the ADA is still considered a ‘Do we have to do it’ aspect. Most owners do not see the benefits of universal design. Most look to cut their budgets by reducing accessibility items.”

David said he does see hope in Florida because most local building inspectors there are looking at enforcing the ADA in both plan review and actual inspections. Plus, he said, Florida’s building codes exceed ADA requirements, and enforcement is common.

“In my work I focus on designing a facility that provides above-minimum accessibility. I work to ensure that circulation is clear, doors can be easily operated and facilities can be used by all persons,” he says.

“I succeed when no one even notices that these items have been included. They are just part of the facility that fits in without being seen.”

For more on the ADA, see the articles in the July-August 2007 issue of Quest.


 

ADA Resources

The single most comprehensive source of information about the Americans with Disabilities Act is the ADA’s home Web site: www.ada.gov.

Among the site’s sections are:

  • ADA Questions & Answers

  • Assistance at Self-Serve Gas Stations

  • Readily Achievable Barrier Removal and Van-Accessible Parking

  • Job Accommodation Network

The Web site’s list of ADA publications is lengthy, but well worth reviewing for assistance in specific areas. The section titled “Other Federal Agencies with ADA Responsibilities” addresses topics such as employment, public housing, healthcare and public transportation.

Some sections of the Web site may not immediately appear to be pertinent to individuals with disabilities because they have headings such as ADA Guide for Small Businesses and ADA Tax Incentive Packet for Businesses.

However, individuals hoping to gain the cooperation of a non-compliant business will find the information useful in identifying the remedial measures required by law. That knowledge can form the basis of a first communication with a non-complying business, and may help avoid the need to file a lawsuit.

Regional Resources

Ten regional Disability and Business Technical Assistance Centers (DBTACs) are available to assist individuals and businesses with ADA matters.

Each “one-stop shop” assists with ADA issues related to public accommodations, public services, employment and communications. In the area of education, DBTACs address such matters as building accessible Web sites, ensuring that distance learning programs are accessible, and ensuring that computers are compatible with assistive communications devices.

Visit the DBTAC Web site at www.dbtac.vcu.edu/centers.aspx or call toll-free (800) 949-4232 for more information.

Additional Information

Although not directly connected to the ADA, significant help can be found in the PACER Center, a 30-year-old non-profit group jointly funded by the U.S. Department of Education, U.S. Department of Labor and private donations. The organization’s goals are to expand opportunities and enhance the quality of life for children and young adults with disabilities, and their families. Refer to www.pacer.org for more information about subjects such as school special education programs, transition to work, employment strategies for youth and adults with disabilities, health and insurance and legislative information.

For more on the ADA, see the articles in the July-August 2007 issue of Quest.


 

 
 
     
     
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