News

Community Care Corps seeks proposals for innovative local models in which volunteers assist family caregivers or directly help older adults or adults with disabilities with non-medical assistance in order to maintain their independence.

Community Care Corps will award competitive grants between $30,000 and $250,000 to establish, enhance, or grow volunteer programs. A wide range of nonprofit entities, such as faith- and community-based organizations, institutions of higher education, and service organizations, as well as state, county, and local governments are encouraged to apply.

Community Care Corps seeks to fund local models that represent a diverse cross section of the nation reflective of geography, urban/rural/frontier and Tribal communities, underserved and limited English-speaking populations, communities with limited support programs, and more.

Through February 21, you may submit an optional Notice of Intent to Apply. Beginning February 10, the application portal will accept submissions at the same wepage.

Applications due April 3, 2020, 5:00 PM ET

Under a new bill introduced by a legislator who uses a wheelchair, BadgerCare would pay for standing wheelchairs.  These chairs lift people up, relieving pressure on parts of the body prone to sores and bone density issues. They are also useful for functional purposes such as reaching things.    

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 Self-Determination Network News:

January 2020

Connect | Share | Learn | http://sdnetworkwi.org/ 

ACTION ALERT:  New Wisconsin ABLE Legislation Could Help More People With Disabilities Save for the Future

ABLE (Achieving a Better Life Experience) accounts are a great new way for people with disabilities (or families on their behalf) to save money without harming their eligibility for important benefits like Medicaid or Social Security. Unfortunately, many Wisconsin residents don’t even know about ABLE or how to set up an account. That’s because Wisconsin is one of just 9 states that does not to operate or market an ABLE program.

Bi-partisan legislators have just introduced an ABLE bill that would require the state Department of Financial Institutions to start an ABLE program. This will increase awareness about ABLE as a savings tool so people with disabilities and their families feel more secure about earning and saving more money in an ABLE account to put toward important extra expenses like transportation, housing or other support needs.

You can learn more about ABLE here.

If you think Wisconsin should join the other 41 states with ABLE programs and make sure state residents with disabilities and their families know about ABLE here’s what you can do:

• Contact your State Assembly Representative and State Senator TODAY and ask them to support LRB-3165 and LRB-5380 – the ABLE bill!
• Go to Who are My Legislators to find your rep’s contact information.
• Contact your representatives by January 24^TH

 You can find links to the current ABLE bill draft and legislator memo here.

2020 Disability Advocacy Day

Mark your calendars!  Make certain your voice is being heard by joining us for the 2020 Disability Advocacy Day in Madison on Tuesday March 24th! It's a day designed to connect you with your legislators so you can talk about issues that matter to you. You are the expert in sharing how legislative policies affect people with disabilities in their everyday lives.  Registration and additional information will be coming soon.

Check Out The Latest Videos! 

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content.

The theme of the channel is: Self-Determination is Empowerment. It’s a place where self-advocates can be seen and heard, connect with others, and mentor each other. The hope is that the channel can be used as a teaching tool and show examples of what is possible.

Videos are posted weekly on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy. 

Check out the newest videos on the channel:

• Tips for a Stress Free Holiday
• New Year Resolutions for 2020
• Self-Determination Channel 2019 Top 10 Moments
• Darwin Makes Up for Lost Time

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

If you want to be notified every time we post a new video, click on the bell that is next to the subscribe button on Channel homepage.

Then, click the "All" bell.

That's all there is to it. You will now get an email notification every time a video is posted.

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

This month, we're shining the spotlight on 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.  Stop by this month's Member Spotlight to get to know Barbra.

Who should we shine the spotlight on next?

Stacy’s Journal

"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."  In this month's entry, Stacy talks about how accessibility widely varies. What accessibility issues at hotels have you faced?

We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Free Resource:  Check out the ABLE Employer Toolkit recently released by the ABLE National Resource Center.
• Help Shape the Future of the ADA:  This year is the 30th anniversary of the Americans with Disabilities Act (ADA)!  Help form the future of it by taking a survey. 
• Feedback Needed:  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.  Comments due February 7th.
• Members Needed:  The Assistive Technology Advisory Council is seeking new members to fill vacancies on their roster. Learn about the qualifications and consider applying.
• Winter Fun:  Wisconsin has a lot to offer in the winter, but not everyone can take advantage of it. Read about how three organizations want to change that. 
• Feedback Wanted on Airplane Restroom Accessibility: 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. Comments due by March 2nd.
• Changes to Social Security Could Put Beneficiaries with Disabilities at Risk: A proposed change to federal disability assistance would result in millions more case reviews, likely cutting off many recipients with disabilities if the changes are made.  Read about the proposed change.
• Program Extended:  For the fourth time in a year, lawmakers voted to keep alive a program that moves people with disabilities from institutions into the community, but its long-term fate remains in jeopardy.  Find out why.     

Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

• Waisman Center Day With The Experts: Autism: January 25th, 8:30a.m. to 12:15p.m., Waisman Center, Madison WI
• Ability Fest Planning:  February 6th, 9a.m. to 10a.m., Milwaukee World Festival Inc., Milwaukee WI
• Adaptive Sports Night:  February 8th, 5:30p.m. to 8:30p.m., YMCA, Kenosha WI
• SOPHIA Transportation Meeting: February 20th, 11:30a.m. to 1p.m., Unitarian Universalist Church West, Brookefield WI  
• Advocacy For Change 2020:  March 12th, 8:30a.m. to 4:30p.m., Concourse Hotel, Madison WI
• AbilityMKE NOW!: February 26th, 9p.m. to 10p.m., Online   
• Disability Advocacy Day: March 24th, 9a.m. to 4p.m., Monona Terrace and State Capitol, Madison WI 

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

For the fourth time in a year, lawmakers voted to keep alive a program that moves people with disabilities from institutions into the community, but its long-term fate remains in jeopardy.  The Medicaid program provides funding to states to cover employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community. It officially expired in 2016 and has been in limbo ever since as Congress has repeatedly passed short-term extensions.

Read more

A proposed change to federal disability assistance would result in millions more case reviews, likely cutting off many recipients with disabilities if the changes are made.  Anyone applying for Social Security Disability Insurance, Supplemental Security Income or both already faces a lengthy and complex application process that can take years to complete.  The proposal would create an additional review category where cases would be reviewed every two years.

Read more

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.

Read more

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.