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96 Self-Determination Network News:

January 2020

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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 24TH

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

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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.

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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:

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.

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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?

128 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.

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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.     

128 Upcoming Events

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

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. 

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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.

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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.

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Member Spotlight: Barbra Katz


By SD Network, 2020-01-16

795F494809904AFCBAE64C9E48C4E411_1_201_a.jpegMeet 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.

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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.

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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.

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