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Department of Education, Betsy DeVos Launches New IDEA Website

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On Thursday, the U.S. Department of Education, under the direction of Education Secretary Betsy DeVos, launched a new website dedicated to the Individuals with Disabilities Education Act (IDEA).

According to the Department of Education, the new website is more “robust” and features new and updated information. The website also includes improved search features and simplified site navigation. Updates and changes were made based on feedback from parents, educators, administrators and advocates, which the Department spent the last two months collecting.

In a statement announcing the website’s launch, DeVos said:

The launch of this new and improved site is a big win for children with disabilities, their families and the entire IDEA community. It is incumbent upon the government to provide accessible and accurate information to our citizens. That’s why one of my first actions as Secretary was to order the Department to fix and revitalize its woefully outdated IDEA site so that parents, educators and service providers could readily access the resources they need.

The update comes almost five months after DeVos’ confirmation hearing in which she was criticized for being unfamiliar with IDEA, a federal law ensuring special education services to children with disabilities. In February, under DeVos’ leadership, the previous IDEA website went offline and suffered multiple outages for several weeks — prompting concern from disability advocates and parents.

“The Department will continue to improve upon the new site by seeking and incorporating feedback from IDEA stakeholders in the coming months,” DeVos added. “We are committed to ensuring all children with disabilities and their families have the supports and services guaranteed under the IDEA.”

The Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) will continue collecting feedback regarding improvements to the IDEA website on its blog.

Photo credit: Gage Skidmore

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When My Daughter Noticed a Character's Speech on 'Space Jam'

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Namine commented on one character’s speech in one of the most unlikely of places: the movie “Space Jam.”

I believe one’s experiences can shape what we notice. It’s sometimes known as “blue car syndrome.” When you have a blue car, you notice all the other blue cars on the road.

But before I continue, let me provide some context.

Namine was born with Pierre Robin Sequence. It’s a birth defect that inhibits growth of the facial bones, and it can result in a regressed jaw, cleft palate and ankyloglossia (being tongue tied). The severity can vary from child to child, and in Namine, it resulted in her airway being blocked.

When Namine was a baby, she had a tracheostomy tube which allowed her to breathe. As she grew, she was able to have procedures done to eventually open her airway, allowing her to breathe on her own and get rid of the trache.

Namine didn’t start speaking until she was around 2 years old, simply because having the trache prevented her from making vocal sounds. To help her, she received speech therapy. She no longer does, but it was part of her life and helped to form the person she is today.

Not too long ago, I introduced Namine to one of the best movies ever made: “Space Jam.” She fell in love with it at first viewing, and she watches it on repeat whenever we let her. It probably helps that the movie combines two things she loves: cartoons and basketball.

One evening, while getting ready for bed, Namine commented that Porky the Pig stutters. She didn’t think it was comical, rather, she viewed it seriously and was concerned.

“You know the pig character in Space Jam? He should really see a speech therapist,” she explained. “He has trouble saying certain words, and seeing a therapist would help him, I think.”

Follow this journey on Eiche Fam

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6 Tips to Make Your Workplace Disability-Friendly

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Employers and managers are increasingly realizing the need of employing a varied and diverse workforce. About 17.5 percent of people with disabilities are employed as per statistics available for 2015. This means a large majority of disabled people who are qualified are unemployed and actively looking for a job.

Creating a disability-friendly workplace is the first step towards employing more qualified disabled candidates. A workplace which offers support and encouragement will help disabled employees perform to their full potential and be productive in what they do.

There are several things that a company, employer or the HR can do to ensure that they adopt a disability-friendly work culture. Physical accessibility should be of topmost concern, followed by the adoption of assistive technology, continued training of employees and consistent monitoring.

Here are a few tips:

1) Build Awareness and Invest in Training

An aware workforce is also an empowered workforce. For disabled employees to be fully integrated into a workplace, it is essential that all employees are familiar with the affirmed commitment of their organization to being disability-friendly.

Sensitizing training and etiquette classes will help able-bodied employees gain more insight into how to best interact with disabled coworkers. Some employees may be consciously or unconsciously biased about their disabled counterparts. Quality training from the part of the company will help dispel these notions. Employees should also be given basic information on how they can help their disabled colleagues in cases of emergency.

2) Make Use of Assistive Technology

Assistive technology enables disabled people to be an active part of the workplace and has grown by leaps and bounds in the last few years. Most modern jobs require computers and use of technology. If your company invests in the right assistive technology, apps, and online tools, disabled employees will be able to carry out their job responsibilities without impediments.

Some common assistive technology aids include color-coded keyboards, refreshable Braille displays, specialized screen reader software, assistive listening devices, speech recognition and sign language apps, and browsers that provide user-friendly and customizable Web interface.

It is also advised to install games or interactive activity apps on computers to engage and lighten the mood among employees.

Assistive technology becomes optimal only when you train disabled employees to best use it. Relevant and ongoing training are, hence, of utmost importance. Training should also be a crucial part of the entire onboarding process for disabled employees.

3) Consider Outside Support

Companies can also make use of outside support to give continued training to employees. Several non-profits and government agencies working towards more inclusive workplaces can hold seminars and awareness initiatives at your company. This not only improves employee participation and morale, but also helps bring fresh and new perspectives to approaching the issue.

Organizations can also work with local disability organizations and self-help groups to gain access to information regarding approaches and best practices.

4) Make Accessibility a Priority

A freely accessible workplace is incredibly important to disabled employees. It helps them move around, get their work done and enjoy the time spent at the workplace.

Disability-friendly parking, wheelchair accessible doorways, ramps at entries and exits of buildings and cafeterias, wide corridors and easy access to workstations, accessible operating buttons and/or Braille in lifts, and accessible washrooms are some of the basic necessities required to make a workplace disability-friendly. Meeting rooms and other common access areas also need to be given special attention to and made accessible to all disabled employees.

You must also make sure the company website and all other communication materials are accessible to disabled users.

5) Be Honest With Appraisal and Feedback

Another key factor for improving inclusivity at the workplace is to provide honest and fair feedback to employees, irrespective of any bias.

If managers tend to show leniency to disabled employees during appraisal, it may affect their ability to better their performance. Honest feedback will help the disabled employee feel as responsible for his or her work as non-disabled employees.

Senior management and managers need to be trained to inclusively lead and mentor disabled employees. The leaders may need to develop and understand communication styles that help them engage with disabled employees better. This may, in turn, require consistent and involved managerial training and workshops to achieve the desired outcome.

6) Focus on Health and Well-being

Employee health and well-being need to be of foremost priority, especially at disability-friendly workplaces. Games, physical activities, and other recreational options can be encouraged in your company. Gyms, relaxation rooms and even sleeping pods are becoming common at workplaces.

Another option you can consider is including families and caregivers of disabled employees in your awareness initiatives and pre-hiring training sessions. This makes it easier for disabled employees to get used to their new roles.

Conclusion

An inclusive and diverse workforce can up productivity, improve employee morale, build a better brand identity for companies, and help contribute to social development. With proper initiatives and steps in place, this is something all companies can strive for and achieve.

This piece is written by Jane Otterson – a Technical Writer at Confirm BioSciences.

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Ellen DeGeneres Gives $25,000 to 12-Year-Old Alex Knoll to Develop Ability App

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Accessing public spaces can be difficult if you have a disability. All too often, a store doesn’t have an automatic door, a restaurant has narrow aisles or a playground doesn’t have wheelchair accessible play areas. Noticing how difficult a lack of accessible options can be for people with disabilities, 12-year-old Alex Knoll decided he wanted to make a difference.

After conducting his own research, Knoll came up with the idea for Ability App — an app designed to help people with disabilities navigate public spaces. On Thursday, Knoll and his app, which is currently in development, hit a significant milestone after being featured on “The Ellen Show.”

Showing Ellen DeGeneres his prototype, Knoll explained how he imagines the app will work. On the app’s homepage, users are given a list of business types and services to choose from. After selecting an option, the app shows a list of establishments and each place’s accessibility features. Users can also search for features and services specific to their disability as well as disability-friendly employment opportunities.

ability app home page

Despite his working prototype, Knoll has had some troubling fundraising. Prior to his appearance on DeGeneres’ show, his GoFundMe page for had only made $350 of its $25,000 goal.

“I want to help you,” Ellen DeGeneres told Knoll. “We have an amazing team here because we have Heads Up app. We know what we’re doing here, so I’m going to put you together with our team to help make it the best app you can possibly make it,” she said presenting him with a check for $25,000, his fundraising goal.

According to the World Health Organization, approximately 15 percent of the world’s population lives with a disability. With such a large community to serve, Knoll’s app joins the ranks of other apps and services made for people with disabilities. These apps include AccessNow — created by Maayan Ziv, who lives with muscular dystrophy — which uses crowdsourcing to collect and share accessible spots around Toronto, as well as Jason Da Silva’s AXSmap. Using his experience as a filmmaker and as a person living with multiple sclerosis, DeSilva created an app allowing users to virtually visit a space before arriving.

Video of Knoll’s segment was shared on “The Ellen Show’s” Facebook page, where it received positive comments from people interested in his app. “Thank you, Alex, for recognizing a serious need in the disabled community,” one commenter shared. “I have to call ahead everywhere I go to inquire about obstacles like steps, distance from handicap parking spots to the entrance, elevators, etc. You wouldn’t believe how many times I call and people have no idea how to answer my questions. I often just stay home out of fear and frustration. Being disabled can be very isolating.”

“Alex! You are amazing! My husband would use this APP every day,” another wrote. “He is in a wheelchair, and has obstacles every day, getting around town, and when we travel (which isn’t often, because of the challenges). THANK YOU!”

Ability App is not available yet, but once it is, the preteen says, the app will be free to download.

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24 Secrets of People Who Receive Disability Benefits

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Although disability benefits can be helpful for those who are unable to work due to an illness or disability, there are unfortunately a number of challenges and stigmas involved. The application process can be long and tedious and cause applicants to feel judged by their peers or scrutinized by those reviewing their case. And when people do receive benefits (which still may not provide financial security), sadly there are still misconceptions that they get to “relax at home” or are “just seeking a handout,” neither of which could be further from the truth.

The last thing those who are already struggling with an illness or disability need is the added stress of these difficulties, which can manifest both physically and emotionally. So, we asked our Mighty community to share some of their secrets about what it’s like to receive (or apply to receive) disability benefits in order to promote understanding and put an end to these harmful stigmas.

Here’s what our community told us:

1. “I don’t get everything paid for. I’m not living the life of Riley! I’m scrambling around every month trying to find ways to make ends meet, which adds to the exhaustion and stress I already have living with a chronic illness.”

2. “You feel like a criminal, even when you have doctors and professionals documenting your disability and you have been approved. You have your life scrutinized by people who write the paperwork, people who make the decisions and society itself.”

3. “I don’t want disability benefits. I want to work. I want to be able to function, and I hate that I can’t.”

4. “The control and fear. I don’t think people realize that benefits can be stopped or withheld at any time – the government has that control. That fear is always at the back of your mind.”

5. “I can’t marry my partner of 13 years because it would interfere with my daughter’s benefits. That makes me sad.”

6. “It’s dehumanizing. You have to report almost every aspect of your life to strangers so that they can judge whether or not you’re sick enough to deserve basic disability benefits that, in the end, aren’t even enough to live on anyway.”

7. “A lot of people don’t know that we pay taxes and for our Medicare too! It’s not ‘free’ by any means.”

8. “How you live in fear every day of losing your benefits because someone tagged you in a photo on Facebook or you were seen out in public ‘appearing’ able-bodied.”

9. “Since our society equates productivity, and more specifically work, with a person’s inherent worth, it is difficult to learn a different way of being that also creates personal value and dignity.”

10. “It was a huge relief at first, but it didn’t take long to feel paranoid that I was being judged as a leech who was somehow not deserving of the benefit program I had paid into over my 30-year career.”

11. “The fear that your financial stability is reliant on someone else’s opinion about how ill you are rather than on how ill you actually are.”

12. “Having to tell someone you can’t work because of your health isn’t easy. It makes me feel like I failed.”

13. “The equal happiness and shame you feel. Happiness because you’ve got money to live on, but shame because of how people react to you and everyone else on benefits.”

14. “It is not an ‘easy street’ and it is not ‘great’ or ‘enjoyable’ not being able to work. The money is a help, but it does not solve everything, and barely covers the cost of living, let alone any extra cost you may incur due to your conditions.”

15. “People think I get paid to sit at home and therefore think I should be doing this or that for them since I am ‘sitting at home anyway.'”

16. “It’s hardly enough to live on, yet I still feel guilty for taking it. I’ve never not had a job… or two. Everything I have ever had, I worked hard for. I hate not working.”

17. “Some doctors treat you as a non-person or drug-hound. It’s so degrading.”

18. “To receive any form of public assistance means that you receive some medical coverage and some financial support with your food and shelter expense. But this does not mean financial stability or security. It means you are treading water with just your nose above water.”

19. “It’s a part-time (or full-time) job in and of itself filling out paperwork and jumping through hoops to apply.”

20. “It’s certainly not a glamorous life. I’d give it all up to be able to work… I want my back to hurt because I’ve put in a long day at work, not because of an injury and failed fusions. I want my old life back.”

21. “The guilt and disappointment in yourself for taking the money instead of earning the money like you did before you were ill/injured.”

22. “It isn’t enough. I often go without food so I can pay my rent, utilities and medical expenses. No one knows. I feel like it is my shameful secret.”

23. “That it’s sincerely the hardest thing to get. You have to go through several months of testing, keep hundreds of documents and have a lawyer – who you can already not afford – help you out.”

24. “You’re damned if you do, you’re damned if you don’t. If you get disability benefits, you are criticized for not being ill enough and stealing money from others. If you try to work through your illness, you are criticized for using more sick leave than average.”

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10 Ways to Help Families Affected by Disability

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Since becoming parents to a child with disabilities we’ve connected with many other families like ours. It’s a true community who support and love one another, no questions asked. It is a truly blessed thing to have a support system like that, however, many families already have so much on our plates that helping one another is not always an option.

Those who are touched by disability and their families can have it harder than most. We have appointments galore, therapies, medication pick ups, school, IEP meetings, fighting for services, medications, and equipment. Caregivers are often struggling to make it to the end of the day without falling asleep because sleep is usually interrupted too. We usually end the day in sheer exhaustion, but keep moving because we have no other choice.

Over the years, I have been learning just how alone many families are feeling. In truth many families like ours are excluded from plans, and become pretty isolated. Getting a babysitter is much harder. Parents often can’t devote time to their relationship because their family needs them to be parents, advocates, therapists, teachers, nurses, etc. They often do not have time to be a couple.

People often say, “Call me if you need me” and genuinely mean it, and that is wonderful. We certainly appreciate the offer, but the truth is, help is almost always needed or wanted, so often families just do not ask. And sometimes we aren’t sure what we need from one moment to the next. Some of us just never think to ask because we are so consumed with our daily lives that we do not realize our load is too heavy to carry by ourselves.

I have learned over the years that many people who aren’t affected by disability do not assist — not because they don’t want to help, but because they aren’t sure how to help. There are countless ways to help families of children with disabilities. Seriously, the list is endless. I have narrowed it down to the 10 I feel would be the most helpful for our community.

1. Respite. Come and watch the kid(s) so the caregiver can catch a nap or a shower. They need their alone time too. For that matter, do something just for the caregiver; we are often put on the back burner.

2. Parents’ night out. Once you get to know the child and family and they get to know you a trust can develop. Offer to babysit for a few hours. A couple needs time to be a couple to keep their marriage strong and keep their family together.

3. Make meals. I’ll be honest, by the end of my day exhaustion has set in. Many nights I have been far too tired to cook dinner and just have cereal instead. I feed my family, of course, but I definitely do not cook every day.

4. Help at home. Come by and mow the lawn, clean the house, fix something you know they don’t have the time or funds to fix themselves, etc.

5. Socialization. This one is probably the easiest to do. Come by and get to know the entire family. Take a glimpse into that family’s world. Almost everyone needs social interaction. Just taking the time to come into our lives is truly heartwarming.

6. Inclusion. Invite the entire family! Family-friendly events are great. As I said above, finding babysitters is very difficult. Families often cannot accept an invitation at the drop of a hat. Most of the time when invitations are declined multiple times, they eventually stop coming. Try to ensure your event is an inclusion event and will include all the family. Make them a part of your life, and you a part of theirs.

7. Educate yourself. Learn about your friend’s child’s specific disability so you can better understand what we deal with and what we may need. It will also help you to better interact with our families. This one is huge to me! It shows us you care enough to learn about our family.

8. Show up. As I said above, most families do not ask for help. They may not think to ask, they aren’t sure what to ask for, or they feel it’s too much to ask of someone. Instead of telling them, “Call if you need me” (they probably won’t call) offer to show up at a set time for a specific purpose.

9. Offer assistance rather than advice. I am not being rude here, it’s just that in many cases we’ve researched our own / our loved one’s particular disability so much we could likely write our own book(s). However, if you’ve researched and found something you didn’t already know about, great! Use that knowledge to think of ways to better support the family. I promise we’ll appreciate it, not just the fact that you’ve researched but that you cared enough to apply your knowledge to our family.

And the most important! 10. See the person first, not the disability. People want and need to be seen for who they are. Please remember a disability does not define an individual; it is a part of who they are but not the entirety of their being. If you can move past stereotypes about disability, you’ll be amazed at the person you get to know!

There are countless things someone could do to assist families touched by disability. It may seem like a lot to do for one family. But doing even one of these things can be a great help to families like mine.

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