Roundup: Emergency Preparedness for People with Disabilities

Guest Blogger Tyler Bachelder

In light of the tragic and devastating results of hurricanes Harvey, Irma and Maria, we at The Chicago Lighthouse would like to offer our sincerest condolences to all who have been effected in the United States and across the world.

Disaster preparedness is important for everyone, but especially so for people with disabilities, as our needs vary so widely. With that in mind, I’ve compiled some resources to help in planning for events like these. Nobody can predict the future, but if we ask the right questions, we can be ready for it.

So what are the right questions, exactly? That’s determined by your own needs and situation. Most of the resources below will help you consider your needs and may shine a light on the unconsidered ones. Taking the time to think about those needs can mean the difference between panic and calm, and remaining calm is vital in an emergency. It is important for everyone to do a few very basic things. Prepare an emergency kit with first aid supplies, non-perishable food, water, backup batteries, flashlights, a radio or other means of getting the news, some basic tools, and other essentials.

As a person with a disability, your kit may be more extensive. Make sure you have access to your most important contacts in a format accessible to you, whether that be Braille, large print, an audio recording, or whatever suits your needs. Family and friends are the first and best means of support if you have a disability, as they know your needs better than emergency responders will. If you have a service animal, consider its needs. Do you have food, water, and the equipment needed to work with the animal? What about identification tags? Do you use any equipment that is necessary for you to live, such as a dialysis machine? If so, how will you power it in the event you lose access to electricity? If blind, do you have a spare cane? If in a powered wheelchair, do you have a lightweight manual one available to you? Is your environment easy for you to navigate quickly? Are emergency exits unobstructed?

As you can see, the needs of people with disabilities are quite complex. Although no one source can ask or answer every question, these tips are a good starting point.

Resources.

•The National Rehabilitation Information Center wrote a blog post to help Harvey survivors with disabilities find needed resources during the recovery process.

• The American Foundation for the Blind offers a general overview on emergency preparedness with further links to resources at the end of the article including those from the CDC, Red Cross, and more.

• Writing for the Vision Aware blog, Maureen Duffy discusses the importance of emergency preparedness with a focus on her harrowing personal experience with flooding.

• FEMA is required by law to provide accessible services at its disaster recovery centers so that people with disabilities can be made aware of the resources available to them. Here is an overview (pdf) of the services offered at their recovery sites for disabled people.

• Oregon’s Business Continuity Management Program, a division of the Department of Human Services, has a list of guides for businesses and organizations to better serve the disabled population in the event of an emergency, but they also feature guides for individuals as well.

We cannot stop emergencies from happening, as they are an inevitability of life. But with preparedness, we can mitigate their impact. Being prepared also means being calm and confident in a difficult situation, and a calm person is better able to take care of themselves and others. The more of us who can do that, the better off we are as a community. And when we move forward into the long and difficult rebuilding process, it’s the communities that matter the most.

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Commentary: Remembering Bill Jurek

 

This past weekend, members of The Chicago Lighthouse family were deeply saddened to hear of the passing of Bill Jurek, director emeritus of The Lighthouse’s CRIS Radio. CRIS Radio is the oldest and largest reading and information service in Illinois for people with visual impairments or who have other disabilities, and broadcasts programming specifically targeted to these communities. Bill, who was himself totally blind, had been the station’s director since 2006. He was also the host of The Beacon, the country’s only advocacy radio show recorded for and by people with disabilities. Prior to joining The Lighthouse, Bill worked for many radio and television stations, including WLIT-FM, WGN, WIND, WLS-AM and NBC. He was also the voice talent for numerous companies. Bill lost his vision in 1995, and was a strong mentor and advocate for people with vision loss, especially those interested in the broadcast journalism field.

I first met Bill nearly four years ago, when I was looking for a job after graduating with a bachelor’s degree in journalism from the University of Illinois at Champaign-Urbana. My supervisor at the organization I was interning for at the time suggested I contact Bill Jurek. After all, Bill was also blind, and it wouldn’t hurt to ask him for some words of advice for my future career. Bill’s reply to my email was completely unexpected! He told me CRIS Radio could possibly offer me an internship, and asked me to call him right away. I began my internship with the station a few months later, where I helped schedule and record interviews for The Beacon. Little did I know that this internship would help launch my future career as a journalist! I now work full-time at The Lighthouse, both as an associate producer for CRIS Radio and development assistant.

I will always remember Bill’s kindness and great sense of humor. Ever since our first conversation over the phone, I could immediately tell he was a friendly and caring individual. I will always treasure the wonderful and fun memories of working with him. Whether discussing future segments for The Beacon, or recording the show, our conversations would inevitably turn into talking about food, some of the funny or embarrassing experiences we encountered as people who are blind or other random musings! I could always count on Bill to learn about good restaurants or other places I might want to check out.

The Sandy’s View team and The Chicago Lighthouse extend our deepest condolences to Bill Jurek’s family, friends and colleagues. We all lost a great friend and mentor who will always be remembered. Bill’s services will take place this upcoming Saturday, September 9. For more information and to read more about Bill’s work with CRIS Radio, please visit this page. Thank you Bill for being a great friend and mentor. Most importantly, thank you for giving me an opportunity and opening the path to a wonderful career for myself and countless others. The following is a video Bill and I recorded nearly two years ago for the Chicago Community Trust, where we talk about CRIS Radio, and the high unemployment rate faced by individuals with vision loss.

Commentary: Accessibility in Business Should Be More Than An Afterthought

Commentary written by guest writer Tyler Bachelder

Did you know that businesses are letting over $8 trillion slip right through their proverbial fingers? Me neither. But Caroline Casey, an Irish disability activist does, and she wants to show them the money. That sum is the estimated amount of disposable income possessed by approximately a billion people with disabilities worldwide. She believes that with the right insight and guidance, businesses can begin tapping that money for their own gain. But this isn’t just a naked appeal to greed. It’s also good citizenship. It starts with a consideration for disabled consumers in the boardroom. She wants companies to know that they need to do more than pay mere lip service to accessibility. To her, this is a win-win situation. Businesses cater to the needs of disabled people, and in return they get loyal customers who feel appreciated and valued, plus the wallets that come with them.

Take a look around and you can see this ethos already paying off. The go-to example that most blind people would likely jump to is Apple. Apple has, through the entirety of its design process, considered the needs of disabled people, and it’s been revolutionary for us. Their suite of accessibility tools is comprehensive. The iPhone has screen magnification, LED flash to notify deaf users of alerts, image recognition to describe photos, the ability to type in Braille on the phone, shaped buttons for color blind users, guided access to minimize distractions for users with cognitive disabilities, and so much more. And those tools are generally replicated on a Mac. Apple is something of a prestige brand. Consumers pay a premium for its products. Often, disabled people don’t have as much money individually, due to lack of inclusion in the workforce. But, limited income aside, blind people flock to Apple devices no matter the cost. Why? Because Apple cares about their needs. For a lot of us, Apple is the brand, not a brand. Imagine, for a moment, what that means for this segment of the market. Apple has it largely on lockdown.

And that leads us to Casey and her mission. She imagines a world in which companies consider accessibility at all levels of operation, from supply to design to service to the built environment. That sort of consideration can engender a lot of loyalty from a demographic that often feels underserved and neglected. It’s also a clear win for public relations. Search Google News for Apple Accessibility and you’ll witness journalists frothing over how thoughtful, how philanthropic, and how cool Apple is for doing this work. What company doesn’t want that kind of public goodwill?

Let’s also remember that accessibility can benefit everyone, not just disabled people. How many times have you taken an elevator when stairs would work? Be honest, I won’t tell. You’ve had a bear of a day at work, the commute home is a nightmare, your feet hurt, all you want is to, for a second, be at rest. So into the elevator you go, and you’re grateful right? That elevator is intended for wheelchair users, but I’ll bet what’s left of my eyesight that you’re thankful for those precious thirty seconds of stillness, aren’t you? That’s accessibility at work.

Casey wants companies to realize that the investment of time and money into accessible products and services pays dividends both financially and in the court of public opinion. Too often, due to a lack of education about what it means to be disabled or what it would take to improve the status quo, businesses neglect it altogether. If informed at all, they’re usually misinformed, mistakenly believing that these considerations would be prohibitively expensive. For instance, minor changes like high contrast colors in design, larger signage, appropriate lighting, products that feature tactile elements, websites built with screen readers in mind, digital versions of manuals, TTY phone numbers, most of these things are insignificant changes with very little cost attached. And it’s much less expensive to design while considering accessibility, rather than retrofitting something later, because often if you change one small feature, others must change to make way. I’m thinking here of buildings built before the passage of the Americans with Disabilities Act, specifically, but the principle applies generally too.

So Casey plans to travel to Colombia and ride horseback across the country, all the while documenting her journey on social media. The #valuable campaign is meant to educate, rather than cajole. At the end of her journey, she will beseech over 500 companies to consider their lost money. Let’s hope this effort can create at least one more Apple in the world. The changes won’t happen overnight, but there is momentum. I’ll be in the elevator, waiting for the doors to open on a brighter future.

Commentary: How Smart Homes Are Empowering People with Disabilities

Imagine being at home, when all of a sudden you hear your doorbell ring. Unless you were expecting someone, like a mail or food delivery, you might not know who it is if you cannot see. Similarly, unless someone who is blind or visually impaired has a talking thermostat, the majority of these appliances currently in the market are inaccessible. We therefore might require assistance from a sighted friend to change the thermostat, which is not always convenient.

The evolving concept of smart homes is becoming a game changer for people with disabilities, including individuals who are blind or visually impaired. This story from NBC News shows how Apple’s technology, along with smart home accessories, are transforming accessibility for people with disabilities. Todd Stabelfeldt is quadriplegic, and has no movement below his shoulders. Thanks to new technology, he can use an iPhone and Siri to open his garage door, turn the lights on and off, open and close the blinds, adjust the thermostat and monitor his security system independently. You can see Todd interacting with this technology in this video. These are all things that were impossible for him and other people with disabilities to do independently prior to the advent of smart home technology.

Just as smart home technology has allowed people with physical disabilities to be more independent, it can do the same for those of us who are blind or visually impaired. We can now change the temperature on the thermostat by using our smartphone or tablet. It is also possible for us to know who is at the door by asking them before even opening. Moreover, we can control our security system independently, something that was not always easy because of accessibility challenges. Turning our lights on and off and locking our doors is also easier, and all of this will give us more peace of mind knowing we are safe.

As with anything else, there are cons to this technology. One of the biggest concerns is the risk of getting information – including personal details and passwords – stolen. This is a valid concern, but is something that is already being addressed. Facial recognition technology, for example, allows computers to identify users by taking a photo of their face. It is therefore important to make smart home technology, like switches, cameras and mobile apps, secure and accessible to everyone, including people with disabilities.

There’s no doubt that smart homes are changing the way we control our household appliances. People without disabilities enjoy the convenience of controlling their homes with a smart phone or tablet. For people who can’t see or have other disabilities, it goes beyond convenience. This technology allows us to be more independent in our own homes, something that everyone wants and deserves.

Commentary: Making Online Review Websites for People with Disabilities

Today, most of us turn to the internet to search for reviews of products we want to buy or restaurants we will be visiting for the first time. Sites like Yelp and Trip Advisor provide us with these reviews and information at our fingertips, literally! While these sites help us decide what products to buy and services to use, they don’t always include information or resources relevant to people with disabilities.

A group of social workers in Australia is trying to change that with the launch of Clickability, a website compiling different resources and reviews of programs and services for people with disabilities. Although still a pilot project, its developers want this webpage to provide Australians with disabilities and their loved ones with valuable information and resources. Better yet, they hope that having access to this information in one place will empower people to be more independent and make the best decisions regarding disability care and services.

Other individuals are expanding the concept of providing information relevant to disabilities to everyday places and experiences. Today, several websites and apps give information on a venue’s accessibility, the service and helpfulness of the staff, etc. Note that these websites and apps are relatively new, and only provide information about places in specific regions.

Although this is a relatively new concept, developing more websites and mobile apps with helpful information and reviews for people with disabilities can benefit everyone. As someone who is blind, I would like to see a website similar to Yelp that would provide accessibility reviews of restaurants, museums, shopping centers and the like. It would be helpful to know, for example, if a restaurant offers Braille or online menus, or if a movie theater offers audio description. Although some businesses already have this information on their websites, it sure would be nice to see it all in one place.

As someone who constantly looks at user reviews of businesses on the internet, I would be thrilled at having more webpages with information related to accessibility. Like anyone else, I want to visit places that are welcoming and offer the things and services I am looking for. I also have to consider other factors related to disability accessibility and accommodations, and having it compiled in one website would be of great help for myself and millions of individuals with disabilities and their loved ones. I hope that more people realize the importance of having websites similar to Yelp and Trip Advisor that cater to people with disabilities. This is something everyone – whether disabled or not – could benefit from.

Commentary: On President Obama’s Commitment to People with Disabilities

Since his inauguration as the 44th president of the United States in 2009, President Obama showed a strong commitment to Americans with Disabilities. He was the first president to appoint a disability advisor, Kareem Dale, who incidentally is a former Chicago Lighthouse program participant. Speaking of the Lighthouse, then Senator Obama toured the facility in 2005, and urged Congress and everyone in the federal government to continue purchasing clocks from The Lighthouse and similar organizations. In 2010, President Obama elected former Chicago Lighthouse President and CEO Jim Kesteloot to serve on the Ability One Commission, whose mission is to provide employment opportunities to people who are blind or have other severe disabilities in the manufacturing and delivery of products to the federal government.

President Obama’s efforts to work for and with Americans with disabilities went beyond Illinois and The Chicago Lighthouse. By signing the Affordable Care Act in 2010, people with disabilities gained access to healthcare, either through Medicaid, Medicare or other insurance. Also in 2010, President Obama marked the 20th anniversary of the ADA by signing Executive Order 13548, which calls for the recruiting, retention and hiring of more people with disabilities in the federal government. By October of last year, over 100,000 people with disabilities were working for the federal government.

In 2014, President Obama signed the Achieving a Better Life Experience, or ABLE Act, which will benefit millions of Americans with disabilities in the near future. Under this law, people with disabilities receiving Supplemental Security Income (SSI) can open special savings accounts where they can save up to $100,000 without risking their eligibility to Social Security and other benefits. Previously, those receiving these benefits could only have $2,000 or less in savings or other assets. During his administration, President Obama also signed into law the 21st Century Communications and Video Accessibility Act, which among other things will give greater access to media content with audio description and closed captions.

Throughout his eight years as president of the United States, President Obama demonstrated a strong commitment to Americans with disabilities. Social Security, better access to healthcare and more employment opportunities have always been pressing issues for those with disabilities, and President Obama’s administration worked hard to address these concerns. Still, a lot more needs to be done so that people with disabilities have more opportunities and equal access, and we hope that the new administration and members of Congress will work with us to make them a reality.

Top Three Pressing Issues for Americans with Disabilities

Top Three Pressing Issues for Americans with Disabilities

The 2016 presidential and congressional elections are over, and by this point most of us know who will represent us in Washington next year. Without a doubt, this has been a very heated and contentious election season, and – like in previous years – Americans can only hope that all three branches of government will work together for the good of the nation. As the largest minority group in the United States, people with disabilities continue to face several pressing issues that we would like our elected representatives to address. These are the top three topics that are most important to people with disabilities all over the country.

Better Healthcare Access

Programs like Medicaid and Medicare are often the only type of health insurance people with disabilities have. Unfortunately, not all health providers accept these forms of insurance, particularly Medicaid, which is provided to people who are disabled, blind or older than 65 with limited incomes. Unfortunately, few hospitals and clinics accept this form of insurance, making it difficult for individuals with disabilities to have adequate and timely access to health care. This is especially pressing given the high unemployment rate among people with disabilities, who depend on programs like Social Security and Medicaid to get by.

Improvements to Social Security

This has been a longstanding topic of concern to people with disabilities. Most people are not aware, but individuals with disabilities who receive Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) have set limits on what they can make on the job. Furthermore, SSI recipients can only have up to $2,000 in order to qualify for this program. In 2014, Congress passed the ABLE Act, which will allow Medicaid and SSI recipients to create special savings accounts where they can save money without jeopardizing their benefits. I and thousands of other individuals with disabilities and their families applaud this legislation, but feel much more needs to be done to improve the system.

Funding for Programs Supporting People with Disabilities

In Illinois as in many other states, recent budget cuts have affected, or even eliminated altogether programs and services for people with disabilities. These include day programs for those with developmental disabilities, vocational services and other programs providing information and resources to these individuals and their families. In Illinois, for example, centers for independent living throughout the state are being negatively impacted by the lack of funds. These centers are crucial for people with disabilities, as they help them find valuable information and resources on how to become more independent.

The government should work together with the disabled community to address these issues. They are topics often overlooked by the general public and politicians, but are extremely important to people with disabilities and their families. Until the government addresses these problems, people with disabilities will continue to experience the negative consequences. Finding solutions not only benefits this population, but also the community at large. What other disability related concerns should our newly elected government address?   Please share your thoughts!