You are or will be 1 of the 66 million: new caregiving study

317x224EScaregiversThe topic of caregiving isn’t new to Easter Seals. In fact, it’s at the core of everything Easter Seals is about — it’s in our DNA. We’ve always been committed to providing supports and counsel to caregivers to let them know they aren’t alone in what can be a challenging — yet rewarding — experience.

Caregiving has become the “new normal” for 66 million Americans today. Our reputation in responding to the needs of caregivers through high-quality services and supports, as well as through advocacy at the federal and state levels, continues to generate engagement with and support from companies and organizations equally committed to these consumers.

Easter Seals is changing the conversation about caregiving through awareness — building initiatives that promise to enhance our leadership in this space as we continue to impact the lives of caregivers in communities nationwide.

We already know that caregiving looks different for everyone. Whether a young newlywed is taking care of her husband who was injured in war (meet Andrea), a son or daughter taking care of aging or ailing parents, a sibling helping his or her brother or sister with Down syndrome, or a parent taking care of a child with autism or other disabilities, caregiving is pertinent to so many today.

We were able to take a closer look into the lives of caregivers thanks to our partners at MassMutual Financial Group through the Many Faces of Caregiving Study. The study has helped us discover the needs and attitudes of an emerging population of caregivers: Millennials and GenXers. You can check out a snapshot of study results here.

The study results show that caregivers are younger than one might have thought (one-third of Millennials and GenX respondents already identify themselves as caregivers, more than half report providing care on a daily basis) and that overall, we’re not ready to embark on the caregiving journey (70 percent of respondents have not yet had the critical conversation with their families and loved ones about the future as it related to their medical and financial planning).

I want to take this time to recognize our other partners in the caregiving space, too. For example, the CVS Health Foundation shares our commitment to assuring the health and wellness of caregivers as well as others we serve. We’re thrilled to be collaborating with the American Lung Association to leverage their state-of-the-industry Freedom From Smoking® Program starting May 1.

In addition, The University of Illinois at Chicago Family Support Research and Training Center has selected Easter Seals as its partner in a national online dialogue to generate research topics of importance to family caregivers. Join the conversation at FSNeedtoKnow.ideascale.com.

In the military and veterans space, we’re proud that the Department of Veterans Affairs continues to rely on Easter Seals to advance its training for veteran caregivers. To date, 28,000 family caregivers have participated in our multi-modal training options and we’re looking forward to helping many more.

Easter Seals also continues to play a leadership role within the Elizabeth Dole Foundation’s National Coalition for Military Caregivers and, moving forward, will spearhead their Respite Services Council.

Finally, thanks to Newman’s Own Foundation, we’ve been able to host additional webinars is our Easter Seals military/veteran caregiver webinar series — and now in Spanish too — to reach out specifically to the 20 percent of post-9/11 military and veteran caregivers of Hispanic origin!

Visit Easterseals.com/carewebinar to listen to prior sessions and learn about those scheduled in the months ahead.

 

6 things people with disabilities need in a transit system

Bus lift public transportationThere’s new legislation to increase transit accessibility being introduced that encourages public transportation providers to improve their services for individuals with disabilities. Since the passing of the ADA (Americans with Disabilities Act), it may be tempting to think that “all is well” in regards to equal accessibility. However, while it is obvious that very significant strides have been made for people with disabilities, there is still more work to be done.

Actually, there are still major issues that warrant attention. For example, almost 25 years ago now, the ADA established this thing called paratransit which requires a door-to-door service for people who can’t use public transportation independently. However, the availability of this service comes with strict disability requirements, making it unavailable to a large population in need of such services. This and many other issues often overlooked in the transportation world are why Easter Seals is excited to support a new act that encourages more creative thought and innovation in accessibility solutions.

Congressman Jim Langevin is leading the introduction of the Transit Accessibility Innovation Act. This legislation will create grants that will be awarded to local communities and transit systems that develop new, creative ways to continue to encourage and revamp accessibility for people of all abilities. Easter Seals and a few other disability, aging and transportation groups helped shape the contents of this bill.

The act will create a competitive grant program, and the most creative ideas will be awarded funding to help bring their ideas to reality. The FTA will evaluate applicants based on six long-term outcomes:

  • community integration
  • safety
  • accessibility
  • quality
  • coordination
  • customer service

Special consideration will be given to innovations that can be replicated for use in other communities as well.

For nearly 100 years, Easter Seals has worked to ensure that people with disabilities can live, learn, work and play in their communities. We see transportation as an important part of that mission and vision, and believe that all people should have safe, affordable, and accessible transportation options. We’re excited for the innovation that this new program would support and we look forward to future implementation. We need your help to make this legislation a reality. Please contact your members of Congress and ask them to support the Transit Access and Innovation Act using our handy on-line system.

 

Thrive: Advocating for myself and others with disabilities

thriveadvocacy400Easter Seals has been supporting mentorship programs for many years, and in 2012 we helped launch a mentorship program offline, called Thrive, that’s focused on young women with disabilities.

Every month Thrive — now offered online for everyone to access — focuses on a different aspect of disability, and in March Thrive has been talking with women about disability advocacy. It’s important for girls to take action for themselves and others in the disability community, so Thrive reached out to women online this month to gather perspectives on what disability advocacy means in today’s world. While reading through these women’s stories on Thrive’s Disability Advocacy page, I was struck by how many of them use storytelling as a way to advocate for themselves and others. What a coincidence: so do I!

An eye disease called retinopathy caused me to lose my sight at age 26. Until then, I’d been working in an international studies office, traveling and counseling college students who wanted to study overseas. I lost my job when I lost my sight.

While undergoing eye surgeries, I kept journals on tape. When ththriveslidere surgeries failed, my husband bought me a talking computer. I continued journaling.

My journal pieces weren’t initially written with a book in mind. To me, writing was simply cheap therapy, but when friends suggested I try putting my thoughts together in book form, I figured a book project would, at the very least, force me to finally gather my cassettes, floppy discs and other computer journal entries together in one place. In the end, I was lucky enough to find a publisher for Long Time, No See, and ever since it came out I’ve been advocating for people who are blind or have other disabilities by moderating this blog, leading writing classes, giving presentations at schools and speaking at conferences.

Go to Thrive’s Disability Advocacy page to read more stories from women with disabilities about how they advocate for themselves and others with disabilities, and then follow @ability2thrive and use the hashtag #thriveadvocacy to join Easter Seals Thrive for a twitter chat this Thursday March 26th at 2 pm CST to share your experiences and discuss the future of disability activism.

 

Global accessibility — a commercial drawing attention

samsung-adSamsung partnered with a group of local Turkish neighbors to overcome the barriers a Deaf man had in their neighborhood, and a video of that man’s reaction to all the sign language around him has gotten on the viral train in the last month. If you ask me, that video deserves all the attention it’s getting.

In the video, Muharrem is initially – and understandably — confused by the abundance of sign language surrounding him. The part where it’s revealed that all those people in his neighborhood learned sign so they could communicate with him is the part when my eyes start filling up with tears.

It wasn’t him crying that made my heart sing. It was the fact that a major corporation recognizes that there needs to be accessibility equality throughout the world. This video has been shared over 4 million times, and that really warms my heart. The message of awareness and accessibility is out there.

This year Americans celebrate the 25th anniversary of the Americans with Disabilities Act. Other countries may have good intentions about disability law, but, from what I can tell, they just aren’t quite there yet – they are not moving along quite as quickly with accessibility laws.

It was only last year that Canada got the okay to move along with Video Relay Services, and right now Australia is fighting to provide funding for services to give Australian children who are deaf access to learning Auslan (Australian Sign Language).

Full accessibility to everything is still a dream all over the world for people with disabilities, and a world completely accessible to a Deaf person is something those of us in the Deaf community dream of every single day. I sense that dream is within reach for us here in America, but it’s a long trek for others in other countries.

I hope the popularity of this video from Turkey is a step forward in the right direction in recognizing we need better accessibility laws, accessibility resources and awareness across the globe.

 

Good accessible NCAA brackets

basketballClose your eyes for a minute and try to imagine someone reading through the NCAA Basketball bracket out loud to you. “Okay, there’s Hampton and Manhattan, and then if Kansas beats New Mexico State and then Wichita State beats Indiana and then Notre Dame beats Northeastern and Butler beats Texas…but if New Mexico State surprises Kansas and then Wichita State beats Indiana and then Northeastern beats Notre Dame…well, that changes the whole bracket.” It’s already mind-boggling, right? And I haven’t even started with seeds yet!

My family and friends have been filling out brackets for the Men’s NCAA Basketball Tournament for years, and my colleagues have filled out brackets here at Easter Seals Headquarters before, too. I never participate, though. The online brackets aren’t compatible with the speech synthesizer I use with my laptop, and trying to remember or even memorize the brackets and seeds that volunteers read out loud to me isn’t much fun, either.

Eyebrows up! I just found out about a prototype Accessible NCAA Tournament Bracket that’s meant to “make March Madness more accessible to the full spectrum of college hoops fans, including those using non-visual interfaces such as screen readers and those who are physically unable to use a mouse.” The bracket was put together by Terrill Thompson, the technology accessibility specialist with the University of Washington, and part of the reason it’s accessible is that it’s well-structured. Headings, sub-headings and lists make it much easier for users who can’t see to navigate. The site even includes a link for tips on how to use a screen-reader to understand the relationships between the teams.

The pool feature on the Accessible NCAA Tournament Bracket site finally allows those of us with disabilities to make our own tournament picks without help –- or opinions! — from others. Lots of online tournament pools allow users to enter using their computers, but this pool uses HTML forms to capture users picks, which makes it more accessible to everyone.

But wait. There’s more! The site developer is hoping users might be willing to fill out an accessible sports survey to help him collect data about people with disabilities and their interest in sports. He’ll use the data to come up with a business case to motivate online sports authorities to improve their accessibility. Please spread the word!

Related easterseals.com content for sports lovers:

 

You can help train a guide dog too

The Today Show’s decision to raise an adorable puppy named Wrangler for Guiding Eyes for the Blind has increased interest in the generous work volunteers across the nation do to prepare puppies to head off to train as guide dogs. My friend Mary Ivory and her husband are two of those generous people –they volunteered to raise a puppy for Leader Dogs for the Blind last year. Mike and Mary live on the 12th floor of our apartment building here in Chicago. Imagine how many trips they took up and down the elevator for house training – and that was just the beginning! Mary explains it all in this lovely guest post.

Puppy raising: It changes the street life

By Mary Ivory

Everybody say aaaahhhhhhh! That's Ananda at a very young age taking a nap.

Everybody say aaaahhhhhhh! That’s Ananda at a very young age taking a nap.

My laid-back husband Mike came home one day sounding defeated. “I just walked up the street and no one said ‘Hi’ to me!” We’d been living with Ananda, a female Black Labrador Retriever for 10 months, and we’d just returned her to Leader Dogs for the Blind in Rochester Hills, Mich., two weeks earlier. Mike had forgotten what urban life without a puppy is like.

We live in a very friendly and close-knit neighborhood, but it’s still the big city. Everyone is in a hurry and distracted with their own lives, but you have to slow down when you are walking a puppy, and when others see you with the puppy, they often slow down, smile and say hello, too.

Watching and knowing what a dog can do for a person’s quality of life is a bit of happy mystery. Watching and knowing what a trained service animal can do for a person who needs assistance is the mystery turned into a real miracle. I have always had animals in my life, and as life would happen, I found myself with time and energy to volunteer to raise a puppy for Leader Dogs. Lucky for me, Mike was agreeable to this adventure.

As the job title implies, puppy raisers are charged with creating an environment and focusing on skills to help a puppy become a candidate for a career as a leader — a guide dog for a blind or visually impaired person.

Puppy raising is about nurturing a calm and focused dog to prepare them for the actual skill training that takes place after they are returned. For the first months of life after they leave the litter they live in homes to learn such skills as becoming housebroken — yes that means going outside hourly when awake when they are very small. Yes, that means even in the winter of the polar vortex you go for a walk. You also are taught how to teach calm walking on a leash, not easy when your pup is sweet and just full of friendly wiggles and licks, and the other ‘basics’ like sit, stay, come, no, heal, down……oh yes and ‘drop it’ or ‘leave it’ as she snuck a sock from the dirty clothes or found a stray chicken bone on the street.

Everybody say "thank you" to Mary, Mike and all the puppy raisers for all the schools. It's a tremendous and generous effort.

Everybody say “thank you” to Mary, Mike and all the puppy raisers for all the schools. It’s a tremendous and generous effort.

And all of this happens during all hours of the day, which means you walk down the street a lot. It’s a busy but fun time — strangers snap out of a distracted or grumpy state to talk about the dog, and people seemingly down on their luck rise up to chat about and pet a friendly puppy.

That mystery of connection with animals and people is powerful and amazing to me. My busy city street transformed into a small town lane during the 10 months Ananda was living with us. And yes, it was hard to take her back to her career home. Ananda, which means joy or bliss in Sanskrit, was an intense and wonderful presence in our lives.

I’ve received an email from the Puppy Development Department at Leader Dogs with the picture above telling us she is progressing in her career training. We miss her but are so happy we had this chance to be a part of this great big task, and who knows? We may do it again. Next time, though, we’ll sign up when the dog doesn’t need hourly walks in deep freeze weather.

 

What the TSA does for travelers with disabilities, and what you should do!

airplane-file0001305960191Spring break is coming up, so it seems like the perfect time to remind you blog readers that if you’re flying anywhere, the Transportation Security Administration (TSA) has ways you can get help navigating airport checkpoints. TSA’s Passenger Support Specialists Program trains select Transportation Security Officers, lead TSOs and Sspervisors to take on the extra responsibility of helping passengers who may be in need of extra help at security checkpoints. The Transportation Security Administration website says more than 2,600 Passenger Support Specialists throughout the country assist passengers who require additional assistance with security and checkpoint screening, and Passenger Support Specialists receive specialized disability training provided by TSA’s Office of Civil Rights and Liberties Ombudsman and Traveler Engagement. The training for Passenger Support Specialists includes:

  • how to assist individuals with special needs
  • how to communicate with passengers by listening
  • how to communicate with passengers by explaining
  • disability etiquette
  • disability civil rights

The site encourages travelers who need special accommodations or are concerned about checkpoint screening to ask a checkpoint officer or supervisor for a Passenger Support Specialist to provide on-the-spot assistance. Travelers can request a Passenger Support specialist ahead of time, too, by calling the TSA Cares hotline at 855.787.2227.

Many of you won’t be traveling until next week or so, but since TSA recommends you call approximately 72 hours ahead of travel to give them a chance to coordinate checkpoint support with a TSA Customer Service Manager at the airport, I thought it best to publish this now…happy trails!

 

Kids respond to having a dog at their daycare for a day

A child at the Lily Garden Child Care Center meets WhitneyWe’re focusing on inclusive childcare centers this month, and that gives me a great opportunity to tell you about a trip my Seeing Eye dog Whitney and I took to Easter Seals DuPage and the Fox Valley Region to visit the Lily Garden Child Care Center there. The Lily Garden Child Care Center is an inclusive preschool and child care program for children with or without disabilities –it offers both full- and part-time childcare to children from the community, children enrolled in therapy services, their siblings and children of Easter Seals DuPage and the Fox Valley Region employees.

From time to time, the Lilly Garden Center has guests come to read to the kids. They thought it would be especially appropriate for me to read from a Braille version of my children’s book Hanni and Beth: Safe & Sound, and they were right. We had a ball!

I knew that some of the kids at the center had disabilities, but truth is, without being able to see them, I couldn’t tell. Some were scared of Whitney, some couldn’t stop petting her, others gave her kisses. Some seemed shy, others went on and on and on  about their own dog at home. Which of these behaviors were due to disabilities, and which were due to… well … childhood? Who knew? All we did know is that something different was happening in the room during our visit, and that we were all having fun.

Our own son has significant physical and developmental disabilities. Gus is 28 years old now and lives in a group home, and now I sure wish there’d been an inclusive childcare center available for him when he was a toddler. My visit with Whitney to the Lily Garden at Easter Seals DuPage and the Fox Valley Region showed me that everyone can benefit from inclusive programs like theirs.

 

What our childcare centers are teaching one 4-year-old

I am pleased to introduce Jasmine Musgrave as a guest blogger today. Jasmine served as Head Teacher at the Easter Seals Child Development Center in Washington, DC, and now brings her writing, design, communication and people skills to the Easter Seals regional offices in Silver Spring, Maryland. She’s writing for us today about the inclusive childcare model that she chose for her son.

Jasmine-Musgrove-Family_Christmas_CaFSNow Franklyn wants eyeglasses, too

by Jasmine Musgrave

My four-year-old son Franklyn introduced me to a very special person at his school one day. “Mom!” he shouted loudly and clearly for everyone to hear. “This is my new best friend!” Franklyn was standing proudly with his arm wrapped around the shoulders of his favorite classmate. His new best friend was shy as he could be, wearing a pair of brown, rubber glasses and smiling from ear to ear.

I eventually learned that Franklyn’s new best friend was not only blind in one eye, but had undergone several surgeries after being born prematurely. To Franklyn and the other typically developing children in the class, he was just part of the crew — no different than the rest.

Franklyn has been attending the Easter Seals DC | MD | VA Child Development Program for nearly four years. He began at the Harry and Jeanette Weinberg Child Development Center in Washington, DC, at just 18-months-old, and transferred to the Safeway, Inc. Child Development Center in Silver Spring, Maryland, a few months later. He has been attending ever since, and is currently enrolled in the pre-kindergarten classroom at the Safeway Inc. Child Development Center.

The Easter Seals Child Development Program provides children and their families with an experience unlike any other: inclusion. From a very young age, Franklyn was taught that all children are special and loved, regardless of their abilities or disabilities. By attending the Easter Seals program, Franklyn has independently developed a sensitivity to children with all types of disabilities and continues to accept them just the same as the other typically developing children.

At age four, Franklyn is maturing and gaining more of an understanding of disabilities and the differences between himself and some of his classmates. Thanks to his experience at Easter Seals, he doesn’t base his acceptance of others on these factors. Franklyn has entirely accepted his new best friend in spite of his disability. The two of them are inseparable, and when Franklyn’s new best friend misses class to go to a routine medical appointment, he can always count on Franklyn to race to catch him up to speed when he returns to class – in fact, the very minute he walks in the door.

Being the parent of a child attending an inclusive child development center has been an interesting and beneficial experience for my husband and me, too. Our son Franklyn has reminded us of the true essence of friendship. He has taught me that no matter our differences, true friendship and acceptance comes from the heart. Our experience at the Safeway Inc. Child Development Center has been amazing, but it’s come with the challenge of over-sensitivity, too. Franklyn often expresses to my husband and me that he needs glasses like his new best friend.

Franklyn does not require glasses to see, so we have learned to thank him for his efforts to make his new best friend feel loved and accepted. We explain to him he does not have to rely on glasses to see. This has proven to be very difficult for such a young child to understand, but we know that understanding all these differences is a work in progress.

All in all, we are, collectively, extremely thankful to Easter Seals for such a great learning experience for Franklyn. We are hopeful that whatever the circumstances may be, because of his experience at the Safeway Inc. Child Development Center, Franklyn will always carry with him the principle that true friendship is not about how we appear on the outside, but does indeed come from the heart.

Find out how two families were saved by the Easter Seals childcare model, and the benefits of this inclusive child development model for all kids on easterseals.com.

 

Wired magazine’s article on Facebook accessibility disappoints

thI’m blind, and I don’t go on Facebook very regularly. Navigating through all those buttons and links and menus and edit boxes with a screen reader is very time-consuming, especially when you consider the reward at the end: A few funny posts, but mostly photos…and I can’t see them.

So I was pretty excited when my boss here at Easter Seals forwarded me a story in Wired about efforts by Facebook’s “Accessibility Team” to make the site more user-friendly to those of us who can’t see. Facebook’s Jeff Wieland founded the Facebook Accessibility team in 2011, and the Wired story was called “Meet the Team That Makes It Possible for the Blind to Use Facebook”. I was hoping it might be about Facebook coming up with an alternative website for blind users, one with fewer bells and whistles, or that maybe Facebook had decided they wouldn’t put apps or updates on their site until they’ve gone through a quality assurance process to make sure they meet accessibility standards.

But alas, the article was a disappointment. It focused on a speech-synthesizer program called VoiceOver, which is not a Facebook product at all. VoiceOver is a built-in screen access program that’s built into all Apple products. It’s fantastic, and I’ve been using it on my iPhone for years. It’s an Apple app, and it’s old news

The article was written by Cade Metz, and he only refers to one single blind Facebook user — a woman named Jessie Lorenz — in the piece. She speaks for all of us, I guess. An excerpt:

In letting her read and write on the social network, Voiceover and other tools provide a wonderfully immediate way to interact with people both near and far.

The story said Lorenz is one of about 50,000 people who actively use Facebook through Apple Voiceover, but it never referenced where it got that number, or how successful those 50,000 people are in their attempts to use the site. It also claimed “tens of thousands” of people who are deaf, or can’t use computer keyboards or mice or touchscreens use closed captioning, mouth-controlled joysticks, and other tools to access Facebook, but again, no reference to where the author got that number, either.

The writer said that some of the tools people with disabilities use to access Facebook come from other companies and plug into Facebook, but after he says that some are “built into Facebook,” the only built-into-Facebook accessibility tool he describes is one they’d developed to help with photos.

“Now, together with tools like Voiceover, Facebook can tell the blind when a photo was taken (based on meta-data uploaded with the photo) or who’s in it (based on tags from users).”

I haven’t heard descriptions like these when I go to the Facebook site, and I’m guessing that’s because I do that with another speech synthesizer –JAWS –on my PC. I’m not sure how many blind computer users use JAWS, but if I were this reporter, I suppose I could just say tens of thousands. The reporter would have learned about JAWS and other speech synthesizers if he’d interviewed a few other blind computer users besides Jessie Lorenz, and hey, even she had reservations about Facebook’s Accessibility Team. “Despite recent changes made by Wieland and team, Lorenz says Facebook still doesn’t give her much info on photos.”

Oh, well.