Dad who uses a wheelchair plays with child.

New Center to Support Parents With Disabilities, Address Systemic Discrimination


The time shortly after giving birth is challenging for most parents — but that is especially true for parents with disabilities who face obstacles far beyond a crying newborn. They are often treated unfairly  — if not illegally — by the same systems that are intended to support them, says Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University’s Heller School for Social Policy and Management.

“The U.S. Supreme Court has ruled, unequivocally, that children cannot be removed from their parents just on the basis of parental disability, but it happens all the time,” Parish says. “That’s why we’re targeting the health care system, the court system and Department of Social Services workers who are on the ground, making determinations of whether parents are fit. This is an egregious social justice violation, and I think our potential to do some great work and to provide evidence is tremendous.”

Parish and a group of collaborators have been awarded a $2.5 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to establish a national center called Parents Empowering Parents (PEP). The goal is to fill what Parish and her partners, who include other scholars and a variety of community collaborators, say is a significant public information gap.

The center will support parents with disabilities, as well as those who engage with them, through research, training and tools, including a pair of web portals that will feature resources in both English and Spanish. Projects include developing tool kits for states trying to improve their services to parents with disabilities, evaluating support structures for parents who have psychiatric disabilities, a parenting peer specialist program for deaf and hard of hearing parents and an analysis of large-scale datasets for a better understanding of the national parenting with disabilities landscape.

“We are really trying to cast the net wide,” says Monika Mitra, who is one of three co-principal investigators, along with Parish and Joanne Nicholson of Dartmouth. “What’s novel about this grant and this center is that there is not much work that has been done to create evidence-based programs that support parents with disabilities. When we started working on this grant, we realized that there isn’t anything systematic or evidence-based that you can disseminate.”

In order to create such materials for distribution, Mitra, Parish and Nicholson will rely on a diverse partnership network. “The national PEP center team includes leading investigators from across the country whose work targets parents with psychiatric, intellectual, physical and sensorimotor disabilities and the deaf and hearing-impaired communities,” Nicholson says. “PEP Center initiatives and findings will be widely shared via online venues and social media, and cutting-edge technology-based solutions will be explored to enhance the accessibility of resources and supports for all parents with disabilities and their family members.”

The PEP team includes scholars from Brandeis, Dartmouth, the University of Michigan, the University of Minnesota, the University of Illinois at Chicago, the University of Massachusetts Medical School, the Human Services Research Institute and the Rochester Institute of Technology.

“The translational aspects of our research are really important,” Parish says. “There will be lots of training, online videos and webinars. Every project is going to have a suite of different products for different audiences. This is a field where almost nothing is known empirically, and working together, we’re going to provide some greatly needed information and resources.”

Learn more at the Lurie Institute for Disability Policy.




United Airlines Had 2 Million Reasons to Fix This Wheelchair Problem. They Didn't.


Bonnie Way and her elderly mother, Anne, recently flew from San Francisco to Edmonton, Canada on United. Unfortunately, they’re not in any big hurry to repeat the experience.

But to be honest, United is not in a hurry, either.

Way purchased the tickets for her 89-year-old mother as a gift so she could visit her only living sibling, who is 92 years old. When she booked the tickets, she let the airline know her mom would need wheelchair assistance. She also spoke up at the gate in San Francisco, where the gate agent assured her a wheelchair would await them in Edmonton.

But when Way and her mother landed in Edmonton, there was no wheelchair in sight. The entire plane had emptied out, and the flight attendant told Way she could find a wheelchair at the top of the jet bridge.

Way’s request for wheelchair assistance, a service that must be provided under the law, was ignored — sort of. We’ll get to that in a second. But the airline’s response to Way’s complaints is telling, and leaves us questioning how seriously United takes its responsibility to passengers with disabilities.

If you don’t have a disability — and I don’t — you might not realize what passengers with limited mobility go through to get from point A to point B. You may have noticed the airlines usually announce that passengers using wheelchairs may pre-board, although these passengers may choose not to do so.

Passengers with disabilities who need wheelchairs are typically also the last to leave the aircraft, where they must wait for the airline’s ground contractors to arrive to provide wheelchair assistance.

In Way’s case, their flight was already an hour late, and they needed to make a tight connection in Edmonton — a slim chance under even the best circumstances. But their hopes of making the connection grew dimmer as the ground crew they requested to help Way’s mother get through the airport simply didn’t show up.

Way and her mother slowly made their way up the jet bridge, rolling their carry-ons behind them, where a parked wheelchair sat unattended. But when Way saw that there was no attendant to push the wheelchair, her mother sat in the wheelchair, and Way, who is elderly herself, began doing the work that United’s ground crew should have been doing.

Way claims that United’s lack of service is in violation of federal disability regulations, a claim United denied in its email response.

Our agent asked if you were okay with pushing the wheelchair with your mother in it and the report indicates you walked away. The agent walked with you while pushing another passenger’s wheelchair.

Once in customs, the agent assisted you with claiming your luggage off the belt and placed it on a cart. Since you missed your connecting flight, she then rebooked you on the next Air Canada flight and pushed the wheelchair with your mother in it over to WestJet, the operating carrier. WestJet then used their wheelchair to transport your mother to the departure gate.

Way sent her complaint to both United and WestJet, the operating carrier on her connecting flight. The response from WestJet confirms that Way and her mother waited 25 minutes for wheelchair assistance before taking matters into their own hands.

In addition to sounding overly defensive, United’s response notably does not address why the agents were not available to assist sooner, and whether a 25-minute wait is unreasonably long.

Here’s a rough analogy: Have you ever been served a meal at a restaurant only to realize there was no fork and knife at the table? So you look around, hoping to see your server, and as your meal gets cold, you become impatient, give up waiting, and grab a place setting from an adjacent table. How is that not indicative of a lack of service on the part of the restaurant? Just because you took matters into your own hands doesn’t mean that the service shouldn’t have been provided in the first place.

Clearly, when passengers with disabilities need to make connections and get on with their lives, the difference between a 10-minute wait and a 30-minute wait for service can make a big difference.

In January 2016, United Airlines was fined more than $2 million for its failure to provide prompt wheelchair service to passengers when enplaning and deplaning. The fine was levied after the Department of Transportation completed an investigation into United’s practices, following a marked uptick in complaints from passengers with disabilities about this very issue.

The DOT’s investigation revealed that “United failed to provide passengers with disabilities prompt and adequate assistance with enplaning and deplaning aircraft and with moving through the terminal at Houston International Airport, Chicago O’Hare International Airport, Denver International Airport, Newark International Airport, and Dulles International Airport.

Prompt and adequate. Doesn’t sound like we are expecting too much, does it?

United suffered a public relations nightmare last year when a man with cerebral palsy waited 45 minutes for wheelchair assistance on the ground in Washington D.C. after a 5-hour flight from San Francisco. Unable to wait any longer, the man crawled 50 feet from his seat to the aircraft door where he was able to climb into his own wheelchair and enter the airport on his own. He couldn’t wait any longer because he desperately needed to use the restroom.

As part of the DOT fine assessed this year, United is supposed to invest $150,000 into improving quality assurance audits of its ground services contractor. Another $500,000 is intended to pay for the development of technology for passengers with disabilities to communicate with its ground services provider and other employees.

In other words, the fine is more like a supervised investment in improving services which ensure equal access to transportation services and compliance with the Air Carrier Access Act.

But is United following through on its commitment to ensuring passengers with disabilities are promptly and adequately assisted upon landing? Way’s experience would seem to suggest that the wait time for wheelchair assistance is still lengthy. And looking at an updated version of the United app installed on my iPhone 6s, I don’t see a section of the app dedicated to requesting wheelchair assistance or other special services. There are, however, integrated United Club, MileagePlus, Uber services and a fantastic Sudoku puzzle section.

Perhaps while you wait for your wheelchair, you can whiz through the 200 Sudoku puzzles loaded to the app?

I’m not trying to make light of this. We clearly need the regulation DOT provides, but if it’s not having any real impact on services, what good is it?

In the meantime, experts say passengers with disabilities can put themselves in a better position by being their own advocate. Knowing your rights and over-communicating with the flight crew can help. When things go wrong, ask to speak with a Complaints Resolution Official (CRO), an employee who must be available to passengers by law.

In Way’s case, both WestJet and United offered to send her $100 Electronic Travel Certificates, an offer Way says is useless because her 89-year-old mother rarely travels, and frankly doesn’t feel up for it after the way things went in Edmonton.

And I don’t blame her. The future travel voucher simply doesn’t heal all wounds. And for a company that made a net income of $7.3 billion in 2015, perhaps a $2 million fine doesn’t begin to send the right message.


The 'Positive' Message About Body Image That Hurts Me as a Person With a Disability


I had a conversation recently with a friend about body image. It went something like this:

Friend: “It’s not about how you look. It’s what you can do.”

Me: “Yep.”

Friend: “Physical appearance has nothing to do with ability. It’s not about how skinny you are, it’s about what you can do physically.”

Me: “Yep.”

I didn’t really want to say “yep.” I was absolutely cringing on the inside. On the surface, the statement my friend was making had credit – weight and physical ability are not the same thing. Just because a person is overweight, it doesn’t mean they are any less capable then the next person.

While I’m not overweight, my body has limited abilities due to rheumatoid arthritis and complex regional pain syndrome. Implying that physical ability is more important than outward appearance may have merit, but not if you are living with a physical disability. I can more easily change my appearance then I can my physical functioning.

This message – that ability is more important than looks – is such a double-edged sword. It frequently comes up in the media and advertising, and it is supposed to be inspiring and supportive. Yet I can’t help but feel it further marginalizes those of us living with a physical disability. Implying that ability is the most important aspect of body image only reinforces to me that I should feel bad about my body because it doesn’t work as “healthy” bodies do.

This type of message does not make me feel empowered. It makes me feel more limited.

I realized later that I missed an opportunity to explain this to my friend. His “inspirational” words were actually hurtful to me, although I know they were not intended that way. When faced with a similar conversation in the future, here’s how I would respond:

“Appearance is one aspect of body image. Ability is another. Neither of these defines a person and neither makes them better or worse than anyone else.”


When a Woman Didn't Realize I'd Heard Her Making Fun of My Speech Impediment


I try really hard to not take things that strangers say personally, especially when I know I wasn’t meant to hear it.

But that’s something I believe everyone should become more aware of: you never know who can hear you. You never know how deep your words will cut. Sticks and stones may break my bones, but your words are what will keep me up at night.

Despite my speech impediment I recently took a job at a call center, and let me tell you, I get my share of rude callers daily. But today something a little different happened. We are not allowed to hang up the phone at the end of a call; we must wait for the member to disconnect. I had finished my call and told the member to “have a great rest of her week,” and I thought she’d hung up, but instead she must of just put the phone down. That’s when I heard her begin to make fun of me to who I assume is her husband.

“Could you ever imagine having a person with a speech impediment work for you…?”

She then went on to mimic the way I talk and finished by saying she “couldn’t get my voice right” because I “sounded more retarded than that.” She and her husband laughed before realizing the phone wasn’t off and hanging up on me.

The thing is, I know I have a speech impediment, and I know it can be hard for people to understand me. I try so hard to speak slowly and clearly, and I have come to accept that I am not going to grow out of this, but that doesn’t stop it from being the thing I’m the most self-conscious about. The incident today involved a 70-something-year-old woman who was making fun of a stranger she will never talk to again and probably never think of. But to me she’s the woman who tore a hole in an insecurity I was just starting to close.

Yet another call came in, and my day went on. And I know I have a voice much greater than the one that woman made fun of.

Image via Thinkstock.


6 Reasons 'Speechless' Bringing AAC to TV Matters


Just recently, ABC premiered its new prime time show, “Speechless.”

But this isn’t just any new comedy. This sitcom is woven around the life of a nonverbal teenager with cerebral palsy (played by Micah Fowler) who uses AAC (augmentative and alternative communication).


While the show will likely bring some laughs and (hopefully) great reviews, the importance of this primetime entertainment endeavor goes much much deeper than a few chuckles and the occasional guffaw. Here are some of the reasons the show “Speechless” really matters.

1. People with disabilities are the largest minority group in the United States: According to the US Census Bureau, one in five Americans have a disability. But you might notice there is not similar representation in the world around you. Is one in five actors disabled? Is one in five politicians disabled? Now, it’s true, not all disabilities are visible and many who face disabilities struggle coming out into the world on a regular basis. But it seems this group which makes up a large portion of the population is shadowed to a great degree, and much of that may stem from a lack of acceptance. Bringing awareness to the lives of those facing disabilities helps legitimize their struggles and move them closer to the mainstream of society.

2. It opens the jar of AAC awareness: Many people don’t even know AAC exists. And even if they know it’s a thing, most people have never really seen someone use it. When we do think of AAC we often think of autism, and it’s true that nearly half of those diagnosed with autism are nonverbal — but AAC is not just an autism tool. Think of the dozens of diagnoses that can include speech impairment. Aphasia, cerebral palsy, ALS, dementia, depression, stroke, Parkinson’s, cancer, traumatic brain injury — and the list goes on. AAC is a solution for many people, and the more the world is exposed to its function and benefit, the more it can become understood and accepted. “Speechless” is a machine that can help make that happen.

3. Speaking of AAC, “Speechless” might just bring AAC to those who need it: If we are honest, there are plenty of people and families out there struggling because they (or a member of their family) cannot speak, and not all of them know AAC is an option. Can you imagine the excitement of a mother who has been trying to help her voiceless child when suddenly she sees a solution on her TV screen in primetime? This show is a comedy, yes, (and there will be plenty of situations to laugh about), but that doesn’t mean there is nothing serious about the topic. Bringing the idea of AAC to the world — and especially to families who could benefit from it — is serious business.

4. The main character of the show actually has a disability: “Speechless” is the story of a family centered on a mother fighting for the rights and needs of her 16-year-old son, JJ, who has cerebral palsy and is nonverbal. One of the beautiful elements of this show is that the actor who plays JJ, Micah Fowler, actually has cerebral palsy. While his condition is not as severe as JJ’s, what better way to bring depth and conviction to the role than by having lived it yourself? To add to this, Scott Silveri, the show’s creator, grew up with a brother who had cerebral palsy and was nonverbal. His experience touches every underlying piece of the foundation “Speechless” is built on.

5. It helps people see that different doesn’t mean broken: “Speechless” frames a disabled character in the role of hero rather than a person to be pitied (which has kind of been the norm in the past). Even from the trailer, it is obvious that JJ is a strong character with opinions, ideas, and desires. He is not just a place filler to sit by quietly and accept viewer’s sympathy. Audiences can relate to him, and that is powerful. This isn’t a show about a “disabled” kid. It is a show about a kid and how he maneuvers life. Just because JJ doesn’t have a voice of his own doesn’t mean he has nothing to say, and if we can connect with that idea in a sitcom, imagine what a beautiful movement it could launch into the real world.

6. Finally — and most importantly of all — families are families no matter their struggles: Some families face the very real life challenge of addressing the needs of a disabled member. It may be that one member necessarily receives more attention and care and that may leave hurt feelings and pain. It may be that other family members feel embarrassed or scared because of the issues. But that doesn’t make them any less a family. Families support and encourage each other. Families fight and argue. Families love each other fiercely. Whether they work through emotional issues, death, divorce, heartache, addiction, disability or any other trial, family life is not always easy — but it is real and it is incredible, and we should all be willing to see that.

It isn’t often that we hold our breath and hope for the very best when a new sitcom is parked in the spotlight of primetime — but this is one of those times. Here’s hoping that one cute, funny, TV show about an AAC user just might help to change the world.

“Speechless” airs on Wednesdays on ABC.


How to Become a Successful Parent Advocate for Your Child With Special Needs


The day my daughter was diagnosed with a rare genetic syndrome was the day I began my self-taught training program for special needs advocacy. I had much to learn about her diagnosis and much to change about my approach (I usually like to please people) and I knew the process would be intense. I had to educate myself on the diagnosis and its implications on her cognitive and physical development, and identify the special needs required to maximize her potential. I also had to find a strong, yet diplomatic voice inside me to make sure we received these needed services. The following 10 steps are what I learned in the process:

1. Learn to listen. In the days, weeks, and months after you receive your diagnosis, your only focus is to become an expert on the special needs of your child. Listen to everything the professionals have to tell you and learn as much as you can from other parents who are living it – you don’t always need to reinvent the wheel. The more you understand what it is you are dealing with the better you will be able to understand how to meet their needs. You don’t necessarily have to know the specific therapies your child needs, but you do need to become the resident expert on their diagnosis.

2. Make it personal, because it is. The best piece of advice I ever got was from my daughter’s early intervention teacher. She recommended I put an “all about me” packet together with every piece of information I had regarding her diagnosis. I included all evaluations that had been performed and any recommendations made. She also told me to include a short biography about my daughter that included her likes, dislikes, strengths and weaknesses. I also included a small paragraph about our family and how we were all managing her diagnosis. The most important thing I included was a picture of my daughter on the cover of the packet. It humanized my daughter and made her a live person instead of a folder full of disabilities. I then hand delivered it to the director of the program.

3. It is crucial to learn all aspects of special education law. Some useful resources are IDEA and Wrightslaw. Consider taking an online course or attending a workshop in your area. Learn how to read an IEP; it is the roadmap to your child’s education – if you can speak the language it will be easier to get their needs met.

4. Don’t be afraid to speak up (be firm but respectful). In order to be a good advocate for your child you are going to need to speak up. It is important that you clearly communicate your needs and concerns in order to receive the right services. How you communicate these needs are just as important as what you communicate. Remember to be direct about what you are asking for (provide specific examples – not vague generalizations), respectful in how you are asking for it, and diplomatic when listening to their response (you may not get everything but often a reasonable compromise can be reached – an all or nothing approach will not serve you or your child well).

5. Change your seat, change your perspective. Long before I had children, I was a social worker at a day and residential treatment program for children. I approached special needs from a completely different perspective than I do today. I was the clinician not the parent. My goal as a clinician was to make sure we were meeting the needs of the parent and the child, but also to make sure the child fit into the overall structure of the program. At that time the, child was one of many in my caseload and I had an obligation to all who were under my care.

From a parent’s perspective, I now have a caseload of one. My only concern is that my child’s needs are met. To be a fair advocate, you do need to remember the team you are apart of has obligations beyond your child and sometimes your needs cannot be met instantly. If you come at it with this understanding I can assure you will experience less hostility, less aggravation, and more of a team approach to getting your child’s needs met.

6. Remember you are part of a team. Educating a special needs child is a team sport. The team will be made up of many different disciplines, but will also include you, as only you can offer the perspective on how your child functions at home. Consider yourself just as important as everyone else gathered at that table. It is crucial to not only listen objectively to others, but also be honest in what you share. A multidisciplinary approach is a very strong tool in developing a comprehensive treatment plan for your child. Remember check your ego at the door and nicely remind others to do so as well. It is not about you or them, it is about your child.

7. The truth can hurt, but it is how we grow. Brene Brown said it best, “Vulnerability is the birthplace of innovation, creativity, and change.” In order to develop the most comprehensive and effective treatment, you need to be honest about your struggles and concerns. Do not be afraid to appear vulnerable — as a parent you need to express to the team the realities of raising a child with special needs and the dynamics it creates with other family members. Do not assume the rest of the team truly understands what it is like as well as you do. I know it can be hard to share the painful and emotional times, but without understating the difficulties it will be impossible to implement new and important strategies.

8. Reach out in the good times too (it is not all bad). Everyone likes to hear positive feedback. It makes people feel good, and when you feel good you tend to be more motivated and productive. Don’t just call on the team when things are bad. Tell them the positive stories that have occurred as a result of their input, or the strategies they have implemented at school or home. Drop them an e-mail and let them know they are making a real and honest difference. Trust me, it will motivate them to stay committed and invested in your child.

9. Consult with experts when you need to. The IEP is a legal document and it is important you understand how to read it and what to look for as it serves as the road map for their education. If you are not sure, then it is definitely worth the time and money to have someone review it for you. Ask a friend, or hire a lawyer or a special needs advocate to look it over for you. Better to be safe than sorry. Getting the IEP right is money well spent.

10. Trust your instincts. They are usually right. This is probably the most important lesson I have learned so far. Your child’s needs are unique and likely require an individualized approach. Therefore, there is not one right way to handle these complex issues. Therapists, doctors, and educators have their opinions and recommendations, but ultimately you as the parents know best. Always trust your instincts. If you genuinely feel something is wrong, it usually is and do not be afraid to change course or express your concerns.

It takes patience, practice and perseverance to learn how to be an advocate for your child and your family. Be kind to yourself and others while you learn how to navigate the complex and often overwhelming world of special needs. You will find your inner voice and discover all the incredible things it can accomplish.

Follow this journey on Strength for Sydney


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