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Whether it’s for a fun getaway or for work, staying at a hotel is usually an experience people enjoy. Getting away from day to day life is often something many people look forward to. Regardless of the length of time, staying in a different environment is usually kind of fun. Whether it’s the waterpark, the sauna, the workout room, or a different amenity, it’s often fun to look around and see what the place has to offer. For people with physical disabilities, exploring hotels is also enjoyable experience; however, we often look at different things.  How many people walk into a hotel room and the first thing they look at is the toilet seat? I certainly hope not many people, but for me that’s reality. Yes, it sounds absolutely ridiculous, but it’s true. Let me explain.

In past entries, I’ve mentioned that as a child my family traveled a lot. My parents wanted my sister and I to see and experience as much as we could. We stayed in hundreds of hotels across the country and beyond. Obviously, each hotel has different amenities and features.   “Accessible” rooms are available at most places these days which is nice; however, we’ve learned the word “accessible” can widely vary.  Many times, we’ve found that it’s better to ask for a reason with “more space” rather than an accessible room.  In many cases, accessible rooms have only one king-size bed in them.  For obvious reasons, that doesn’t work so well when there are multiple people staying in the room.  The accessible rooms often aren’t the rooms with the most space either.  Using a power wheelchair, I need space to maneuver around.  I’ve been in rooms where there wasn’t enough space to turn my chair around—I had to literally back my chair out of the doorway into the hotel hallway.  We’ve learned that when we book a hotel room, we not only ask for an accessible room, but also a room with lots of space.

Often, accessible rooms have roll-in showers.  Some hotels provide a basic shower chair; some people bring their own.  My shower chair is very customized and pretty cumbersome, so I’m not able to travel with it.  For various reasons, I can’t take a shower when I stay at hotels, so I sponge bathe and wash my hair in the sink.  That can be if (and it’s a big if) my wheelchair can get into the bathroom; I usually can’t fit it under the sink.  My mom and I have learned to get creative and can usually figure out a way.  As I mentored earlier, when I first enter a hotel room, the toilet seat truly is the first thing I look at.  Why you ask?  Because I’m notorious for breaking them.  Many hotels have inexpensive toilet seats with plastic hinges.   When I sit on them and move to stabilize myself, the hinges often crack.  At my apartment and at my parents’ house, we’ve put knobs on the bottom of the seat so it can’t shift back and forth.  Obviously, we can’t carry a toilet seat around everywhere we go, so my dad brings little toolkit along and he tightens the bolts on the seat.  When I’m on those kinds of seats, I have to be careful how I reposition myself.  I’ve broken way too many!

Another thing in hotels that sometimes cause issues for people with disabilities are the beds.  Depending on ability, higher beds are easier for people to transfer in and out of; for some, lower beds are better.  Everyone has a preference about bed mattresses.  Some people like a very soft pillow top mattress while others like more of a firm one.  Most hotels seem to have pillow top ones.  For me, personally, those don’t work out to well because my body sinks in and I don’t have the muscle strength to move my extremities around on it.  My muscles get very stiff on pillow top mattresses, but obviously when making reservations,, people can’t request a certain type of bed.

We’re a big swimming pool people in my family—we love to swim!  Swimming is so good for my muscles.  When we go on vacation, it’s usually centered around swimming.  For people with physical challenges, just accessing the pool deck can be a struggle.  Although, it’s vastly improved in recent years, stairs would be the only way to access the pool area at some hotels.  When I was young, my parents took my stroller or manual chair on vacation, so my dad would just tilt me back and bump me up and down the steps.  That changed as I got older and wanted my power chair so I could move around independently.  We’ve had to cancel reservations and find a different hotel due to this.   Once I’m in the pool area, another challenge is getting into the actual pool.  Thanks to a law, hotel pools are now required to have a chair lift to help people with various physical limitations get in and out of the pool.  Most pools we’ve been at recently do have one; however, the problem is either the lift isn’t working or the hotel staff doesn’t know how it works.  Over the holidays, my parents and I were in Florida for about three weeks and stayed in multiple hotels.  At many of the hotels the lifts were not working.  At one of the places, the repairman tried to fix it, told us it’d be fixed by the end of the week, but it wasn’t.  Luckily, my parents are still able to get me in and out of the pool so I was able to swim; hotels, it’s not very safe.  I think part of the problem is that the lifts don’t get used very often, so routine maintenance doesn’t happen.  Perhaps a requirement of a monthly maintenance check would help with this.

In my opinion, hotel accessibility has a long way to go.  I didn’t even discuss the many other accessibility issues the general public likely doesn’t even think twice about it.  Things such as curb cutouts, automatic doors, accessible counters, and wide doorways (just to name a few) are other things people with physical limitations have to consider when looking at hotels.  It’s getting better, but there’s definitely room for improvement! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.   

Meet Barbra.  This worldwide traveler believes that people with disabilities should make their own choices and live their most meaningful lives--just like people without disabilities.  She’s excited that self-determination is being talked about more and more.  We’re so fortunate to have this strong advocate as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

 Barbra was born in Brooklyn New York and has lived in the Washington DC area and Minneapolis before coming to Madison in 1991.  She loves living in Wisconsin!  She’s married and is the mom to three wonderful adult sons.  She also has a very active eight-month-old puppy.  She shares that her middle son, Ben, has a developmental disability and continually informs her as she lives and works as an advocate alongside him.  

How are you involved with self-determination? Why did you join the SD Network?

Barbra believes that people with disabilities should make their own choices and live their most meaningful lives--just like people without disabilities.  She explains that to her, that is the core of self-determination. “While it makes perfect sense and sounds so simple, often services, supports and programs that people with disabilities depend on  get in the way,” she explains. For the past 15 years, she has worked as Co-Director of Family Voices of Wisconsin, ensuring that individuals and families know how to access, navigate, use and advocate within programs for health care and long term supports. If people have this knowledge, it can help them as they create self-determined lives for their children and for themselves.  She joined the SD network so that she can be up to date on opportunities to advance SD in Wisconsin and learn about how others live self-determined lives. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

For Barbra, the best news is that people are talking a lot about self-determination and they’re seeing growing numbers of people living self-determined lives.  “Wisconsin has amazing Medicaid long term support programs for children and adults, like the Children’s Long Term Support Waiver and IRIS, that promote and support living meaningful, self-determined lives,” she says. 

What tip or resource would you like to share with people who want to be more self-determined?

Barbra would like to share a new fact sheet, “Self-Determination and Children with Disabilities” that Family Voices of Wisconsin recently published.  You can check it out here.  It is never too early to start practicing self-determination!

What are some of your hobbies?  

 In her spare time, Barbra loves to travel, spend time with her family and friends and read books — she tries to read at least one book a week.  She has been fortunate to travel to 35 states, Canada, various islands in the Caribbean, Mexico, England, Germany, Belgium, Luxembourg, the Netherlands, the Czech Republic, France, Italy, Spain, Portugal, Switzerland, Austria, Turkey, Israel, Greece, Jordan, Argentina, Uruguay and will be traveling to Japan in May.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

The U.S. Department of Transportation (DOT) seeks public comments on a new proposed rule to improve restroom access for passengers with disabilities on single-aisle aircraft with 125 or more seats. The rule is based on negotiated rulemaking undertaken by DOT's Advisory Committee on Accessible Air Transportation, which included aviation industry representatives, disability rights advocates, and other stakeholders.

The proposed regulation addresses lavatory interiors, on-board wheelchairs, and training of flight attendants.

Comments are due by March 2, 2020. 

Read the Notice of Proposed Rulemaking (NPRM) and submit a comment.

Stay tuned: In the near future, DOT plans to issue an advance notice of proposed rulemaking (ANPRM) to solicit comment and gather information on the costs and benefits of requiring airlines to make lavatories on new single-aisle aircraft larger, equivalent to that currently found on twin-aisle aircraft.

Wisconsin has a lot to offer in the winter, but not everyone can take advantage of it. However, a collaboration between three organizations want to change that. The La Crosse Area YMCA, the North American Squirrel Association, and Mount La Crosse are joining together to offer adaptive skiing lessons for people with disabilities.

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The U.S. Access Board is undertaking a study that has the potential to advance access to air travel for passengers who use wheelchairs. As directed by Congress, this project will assess the feasibility of equipping passenger planes with restraint systems so that passengers can remain in their wheelchairs on flights. Having to transfer out of wheelchairs makes air travel very difficult, if not impossible, for many people with disabilities.

The Board is conducting this study through the National Academy of Sciences' Transportation Research Board (TRB). TRB has organized a committee of experts to evaluate the feasibility of in-cabin wheelchair restraint systems. Members include experts in aircraft interiors and safety engineering, accessibility, wheelchair design and crashworthiness, airline operations, and other disciplines. Committee members will evaluate the design, engineering, and safety requirements for equipping aircraft with locking or tiedown mechanisms for non-motorized and motorized wheelchairs used as seats. If such restraint systems are found to be feasible, the committee will then assess the wheelchair restraint systems that can be used to accommodate passengers using wheelchairs through all phases of flight, from boarding to deplaning.

The committee will hold its first meeting February 5 – 6, 2020 at the Access Board's conference center. Most sessions will be open to the public and available by web conference. Those attending in person do not need to register in advance, but registration is required (free) to attend online.

Visit TRB's website for further information on this project, the meeting agenda, and the committee.

Questions about the study can be directed to Mario Damiani of the Access Board at damiani@access-board.gov, (202) 272-0050 (v), or (202) 272-0066 (TTY). Inquiries about attending the committee meeting or registering for the web conference should be addressed to Anusha Jayasinghe of TRB at AJayasinghe@nas.edu or (202) 334-2401.

Committee on the Feasibility of Wheelchair Restraint Systems in Passenger Aircraft

• Alan M. Jette [Chair], Emeritus Professor and Dean, Sargent College of Health & Rehabilitation Sciences, Boston University; Professor of Rehabilitation Sciences, Institute of Health Professions, Massachusetts General Hospital
• Naomi Armenta, Senior Associate in the Oakland, California office of Nelson Nygaard
• Peter W. Axelson, Founder and Director of Research and Development of Beneficial Designs, Inc.
• Rory A. Cooper, Associate Dean, Distinguished Professor, and FISA Foundation and Paralyzed Veterans of America Professor of Rehabilitation Engineering, School of Public Health and Rehabilitation Sciences, University of Pittsburgh
• Karen J. Erazo, retired Manager of Legal Affairs at Sun Country Airlines
• Francis S. Heming, Jr., independent consultant specializing in the testing and certification of aircraft seating systems, including dynamic test planning, implementation, and witnessing.
• Kevin L. Hiatt, specialist in the application of safety management systems in the transportation industry
• Katharine M. Hunter-Zaworski, Associate Professor, School of Civil and Construction Engineering, Oregon State University
• Auturo Jackson, Senior Director for Contracted, Paratransit, and Vanpool for METROLift, Metropolitan Transit Authority of Harris County, Texas
• Miriam A. Manary, Lead Research Engineer, Biosciences Group, University of Michigan Transportation Research Institute
• Clinton V. Oster, Jr., Professor Emeritus and former Associate Dean, Paul H. O'Neill School of Public and Environmental Affairs, Indiana University
• Gary M. Weissel, Founder and Managing Officer of Tronos Aviation Consulting

Inaugural Meeting of the Committee 

February 5 & 6, 2020
Open Sessions:
• February 5, 10:15 – 12:15 (ET) registration link
• February 5, 1:15 – 5:00 (ET) registration link
Access Board Conference Center
1331 F Street, NW, Suite 800
Washington, D.C.
Contact: Anusha Jayasinghe of TRB, AJayasinghe@nas.edu, (202) 334-2401
Note: For the comfort of all participants and to promote a fragrance-free environment, attendees are requested not to use perfume, cologne, or other fragrances.

The Assistive Technology Advisory Council is seeking new members to fill vacancies on their roster. If you are a consumer who uses assistive technology (AT), a family member or guardian representing a person who uses AT, or a professional who works with consumers on AT-related issues, and you are interested in providing guidance and direction related to AT products and services throughout Wisconsin, apply to be a member on the AT Council.

The national Recognize, Assist, Include, Support and Engage Family Caregivers Act (the RAISE Act) became law in January 2018. It requires the Department of Health and Human Services (HHS) to develop and maintain a national strategy to recognize and support family caregivers, and to organize an Advisory Council to make recommendations. Now, in preparation for the Advisory Council’s initial report to Congress, HHS is providing an opportunity for individuals and organizations to submit information on the challenges faced by caregivers. This information will help guide the development of the national family caregiving strategy. To offer your thoughts, submit this form by February 7, 2020.

This year is the 30th anniversary of the Americans with Disabilities Act (ADA)!

The Family Care Medicaid program provides long term care to frail elders and adults with disabilities in Wisconsin.The Wisconsin Department of Health Services announced recently the program will be funded through 2024.More than 50,000 people are enrolled in Family Care in the state.

Read more

Today, the ABLE National Resource Center (ABLE NRC) released the new ABLE Employer Toolkit. The toolkit consists of resources for employers to share with employees impacted by the additional and often significant expenses that can be associated with having a disability. Toolkit items are downloadable and free of charge.

Even with a well-paying job, employees who have a disability, or employees who support family members who have a disability, often face significant costs to maintain health, independence and quality of life. ABLE accounts are key to “Achieving a Better Life Experience” for your employees with disabilities and their families. An ABLE account can be used to support your employees’ ability to work and to increase their productivity, which results in a diverse, valued and productive workforce. The ABLE Employer Toolkit can help you understand and integrate ABLE into your employee benefits program to support their success in work and life.

View toolkit