News

The U.S. Access Board has released for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight. These onboard wheelchairs are provided by air carriers as a means of facilitating the transfer of passengers with disabilities to aircraft lavatories since personal wheelchairs cannot be used in the cabin. The Department of Transportation (DOT) has expressed its intention to supplement its regulations under the Air Carrier Access Act (ACAA) to include performance standards for onboard wheelchairs on covered aircraft. The Board is developing these non-binding guidelines as technical assistance to air carriers and manufacturers of onboard wheelchairs by providing an example of how to meet DOT's planned performance standards.

As indicated in a https://www.federalregister.gov/documents/2019/08/20/2019-17873/advisory-guidelines-for-aircraft-onboard-wheelchairs">notice published in the Federal Register, the guidelines specify dimensions, features, and capabilities for onboard wheelchairs that will allow passengers with disabilities to be more safely and comfortably transported aboard airplanes in flight. In addition, the guidelines include criteria to allow the onboard wheelchair to fully enter the lavatory in a backward orientation and be positioned over a closed toilet, and for the lavatory door to be closed. This feature would afford those passengers who cannot independently transfer to the toilet to have privacy in performing non-toileting tasks related to personal hygiene or medical needs. The Board has posed a number of questions to the public about specific provisions in the guidelines but welcomes input on all portions of the document.

As part of a negotiated https://www.transportation.gov/sites/dot.gov/files/docs/ACCESS%20Committee%20Final%20Resolution.11.21.16.pdf">rulemaking to improve access for air travelers with disabilities, DOT has put forth plans to supplement its ACAA regulations and require onboard wheelchairs with enhanced functionality on aircraft with more than 125 passenger seats.

Related information, including instructions for submitting comments, is posted at https://www.regulations.gov/docket?D=ATBCB-2019-0002" target="_blank" rel="noreferrer noopener">www.regulations.gov (Docket ATBCB-2019-0002). Comments are due October 21, 2019. In addition, on September 12, 2019, the Board will hold a public hearing that will provide an opportunity to submit comments either in person or by phone. Further details will be posted on the Board's website at https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard. Those who wish to provide testimony at the hearing should contact Rose Marie Bunales at (202) 272-0006 (voice) or bunales@access-board.gov by September 5, 2019.

For further details on the guidelines or the public hearing, contact Wendy Marshall at (202) 272-0043 (voice) or marshall@access-board.gov, or Mario Damiani at (202) 272-0050 (voice) or damiani@access-board.gov.

Public Hearing on Advisory Guidelines for Aircraft Onboard Wheelchairs  
September 12, 2019, 9:30 - 4:00 (ET)
Remote attendance options will be posted at: https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard
Access Board Conference Center 
1331 F Street, NW, Suite 800
Washington, D.C. 

 Self-Determination Network News:

August 2019

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

Register Today!

The 2019 Self-Determination Conference will take place October 14th-16th at the Kalahari Resort in Wisconsin Dells.  The Conference empowers people with disabilities in Wisconsin to have more control over their lives. Technology is constantly evolving and so is the Self-Determination Conference. Join us as we learn ways to live healthier, happier and more productive lives.  Registration closes September 27th.  Register today!

Diehard Award Nominations

Do you know someone who goes above and beyond to improve community supports for individuals with disabilities?  Do they support self-determination?  Nominate them for a Diehard Award!  A Diehard is an individual who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a steadfast commitment to the principles of community integration and self-determination. Diehards go above and beyond to make sure everyone is counted.  Nominations are due by 12p.m. on September 5th.  Nominate someone today!

“Scotland Reports” from Lynn Breedlove

In early August, Lynn Breedlove represented In Control Wisconsin at an International Disability Congress in Glasgow, Scotland. He presented highlights of his paper entitled “Self-Direction Worldwide: Contrasting Beliefs and Their Impact on Practice” and attended several workshops focused on self-direction. He was the U.S. representative in a half-day brainstorm with self-direction advocates from 9 countries focused on the current state of self-direction around the world.  He is writing a series of articles for the SD Network about what he learned.  Today, we are pleased to share the first in his series.  Join the conversation: Please share comments, and thoughts with one another using the network. 

Read Scotland Report #1

Read a summary of “Self-Direction Worldwide”, with a link to the full paper

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.

For August, we shine the spotlight on Lydia. This college senior is determined not to let anything stop her from achieving her goals!  She believes it’s so important to advocate and show the world what people with disabilities can do. Stop by this month's Member Spotlight to get to know Lydia.

Stacy’s Journal

"The events of the last month have been a whirlwind. I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can. At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world."

In this month's entry, Stacy talks about trying to balance being a strong advocate and wanting to lead a "normal" life as possible.  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:

• Family Caregiver Characteristics: The Administration for Community Living released a data profile using data from the Caregiver Outcome Evaluation Study of the National Family Caregiver Support Program which examines characteristics of caregivers including age, relationship to care recipient, level of caregiving intensity, and use of NFCSP services.  Find out what the study found.
• State Budget Impact:  The state budget passed by the legislature and approved by the Governor will fund state programs for the next two years. Read the Survival Coalition's summary.
• Inclusive Emojis: An updated collection of emojis intended to be more inclusive and diverse was released.  Learn what new things are included.
• Housing Assistance Funding: Federal officials announced that they plan to set aside millions of dollars to help people with disabilities access housing in the community. Find out what the funding Will help with.
• Accessible Homes:  For people with disabilities, house  hunting can be very frustrating. Read about the push to make all homes more accessible.
• Employment First Partner Grants:  The Wisconsin Board for People with Developmental Disabilities is seeking up to eight organizations to engage in community outreach activities that lead to increased community, integrated employment for people with intellectual and developmental disabilities. Applications are due August 30th.
• Self-Advocate Leaders Needed:  People First Wisconsin is seeking applications from eight people with intellectual/developmental disabilities to become Self-Advocate Leaders for the Wisconsin Board for People with Developmental Disabilities’ Model Approaches to Living Well grant project. Learn more and apply today! 
• Partners in Policymaking:  Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program designed to develop a group of future leaders across the state who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life. Applications for Fall are due September 1st.
• New MCOs for Family Care: The Wisconsin Department of Health Services recently announced New managed care organizations (MCOs) have been selected to provide the Family Care program in some counties in Wisconsin beginning next year.  Learn about the change.
• PIP and YiPPE Trainings: Transition Parents in Partnership (PIP) and Youth in Partnership with Parents for Empowerment (YiPPE) Trainings for 2020-2021 are now open for registration. Find out more about these great programs and register today! 

Upcoming Events

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

• The Organizer’s Forum:  August 20th, 12p.m. to 1p.m., Online
• Webinar: Insights On Traveling With A Mobility Disability:  August 20th, 1p.m. to 2:30p.m., Online
• Adaptive Waterskiing:  August 21st, 10a.m. to 3p.m., Lauderdale Landing, Elkhorn WI
• Webinar: Self-Direction For Dually Eligible Individuals Utilizing Long-Term Services And Supports (LTSS):  August 21st, 11a.m. to 12:30p.m., Online  
• At The Lake:  August 23rd & 24th, Camp Whitcomb, Hartland WI
• Adaptive Sportsmen Family Picnic & Shoot:  August 24th, 10a.m. to 3p.m., Schultz's Gun Club, Muskego WI
• Transportation Consumer Advocacy Team (TCAT): August 27th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Caregiver Summit:  September 5th, 9:30a.m. to 3:30p.m., Department of Health Services, Madison WI
• Webinar: Disability-Competent Care Conversation On Care Coordination With Independence Care System (ICS):  September 5th, 1p.m. to 1:30p.m., Online
• Webinar: Web Accessibility:  September 5th, 1:30p.m. to 3p.m., Online
• Long Term Care Advocacy Team:  September 10th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Abilities Travel Club:  September 11th, 11:30a.m to 12:30p.m., Carroll University, Waukesha WI
• Community Resource Network :  September 11th, 11:30a.m. to 12:30p.m., AbilityNow, Waukesha WI
• Supported Decision-Making And Other Alternatives To Guardianship Training:  September 13th, 10a.m. to 4p.m., Kalahari Resort, Wisconsin Dells WI
• Laugh Comedy Hour:  September 14th, 3p.m. to 4:45p.m., ComedySportz, Milwaukee WI
• Transportation Consumer Advocacy Team (TCAT):  September 24th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Autumn Ability Fest:  September 29th, 7a.m. to 7p.m., Camelot Golf Club, Lomira WI
• 1st Annual HOPE And WISDOM Fundraiser:  September 29th, 10a.m. to 3p.m., Camelot Golf Club, Lomira 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.

Scotland Report #1: An International Brainstorming Session of Self-Direction Advocates

-Lynn Breedlove

On August 8, I participated in a half-day brainstorm of 23 self-direction (SD) advocates from 9 countries. It was the first time I’d ever been part of a conversation about what’s happening in self-direction around the world.  I began to get a sense of the potential for a Global Self-Direction Community. Here are a few takeaways:

Insights re Specific Countries

North America

• Ontario, Canada: Ontario is just beginning to scratch the surface of self-direction (“we have a long way to go”); not much SD activity in other Canadian provinces

Europe

• Scotland: A lot of local control in Scotland: 31 different implementation mechanisms for self-direction (and they’re not always consistent with Scotland’s progressive SD legislation)
• England: People self-directing in England experienced a 40% cut in funding during the last two years - that led to a lot of disillusionment about self-direction
• Republic of Ireland: There is only one person with I/DD self-directing in the Republic of Ireland (he and his dad were at the meeting), but a new pilot for 150 people is in the works
• Northern Ireland: In Northern Ireland, the initial self-direction pilot started out well, but then various local authorities turned it into their own distorted versions of self-direction - that’s been discouraging

Asia

• India: Self-direction is informal in India - it basically involves giving local people a little money and some space to organize, create, and innovate

Australia

In Australia, the enabling legislation in the NDIS (National Disability Insurance Scheme) sounds very progressive but they tried to grow from zero to 460,000 people nationwide in two years - that was way too ambitious and there are lots of implementation problems

Worldwide Key Issues, Concerns and Questions raised by the Group

• People with disabilities are at risk of having “our lives outsourced to government”
• The “self-direction brand” is at risk of being corrupted
• “Paid services should always be supplementary and complementary, and not the meaning of life”
• “If you do the right thing and do it well, you will almost certainly increase cost-effectiveness”
• How can we stay true to the spirit/essence of self-direction?
• How can citizens hold government accountable for doing self-direction right?
• We need to beware of “neoliberalism” (a tendency to assume free-market capitalism will solve everything)*
  

__________________________
*in the context of self-direction, I took this to mean that it would be a mistake to assume that all the supports and services people might need will automatically be available in the marketplace - this is especially a problem in rural areas

Meet Lydia.  This college senior is determined not to let anything stop her from achieving her goals!  She has done all sorts of amazing things with assistive technology and hopes to help students with disabilities discover how it can help them.  She believes it’s so important to advocate and show the world what people with disabilities can do.  We’re so fortunate to have Lydia as a member on the Network.

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

Lydia is a 22 years old senior at University of Wisconsin-Whitewater. Her major is Liberal Studies with special interest in Communication Sciences and Disorders and Special Education. She hopes to be an assistive technology specialist. She wants to figure out what and how students can use technology. Her goal is to have a clinic where there would be an assistive technology specialist, occupational therapist, speech-language therapist, and physical therapist. She explains that she wants to have a place for people with disabilities to go and get resources where everyone is on the same page.

Lydia is from Decorah, Iowa which is 3 1/2 hours away from Whitewater. She graduated from high school in 2015, and she was the first high school student in Iowa to participate in individual and large group speech competition who used an augmentative communication device. Since her junior year in high school, she has been an ambassador for Prentke Romich Company. She explains that they have communication devices and apps, and she goes around the Midwest to conferences talking about her experiences and about the app LAMP Words For Life.

This summer, Lydia is an intern at Access to Independence in Madison where she helped with the peer support program. Now, she helps teach classes at colleges about what resources there are in college for people with disabilities.

How are you involved with self-determination? 

When Lydia lived in Iowa, she spoke at events to help inspire others to advocate for themselves. “I think that is important” she says.

Why did you join the SD Network?

 Lydia explains that she believes it’s important to advocate and to bring awareness to the world, so that people with disabilities can be seen as people first and allowed the same opportunities as everyone else. 

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

Since she’s planning to graduate from Whitewater in May, Lydia is applying for grad school at UW-Stout for Rehabilitation Counseling Program, and she explains how it’s kind of stressful because she has to pull all of the items they need. She’s also applying for an Assistive Technology Certificate at the University of Illinois in Chicago; she wants to have enough creditability to work with people with disabilities because she’s afraid that parents won’t want their kids to see her.

Lydia is also excited that she recently got a job offer from Control Bionics to be a freelance writer for them. She’ll start writing about clients that use their device. She explains that the device is a patch that can be placed anywhere on the body and when the muscle contracts, it clicks on the device with the scanner feature.

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

Lydia encourages people to not be afraid to “beat to your own drum” and ignore the people who say that you can’t. “I can’t tell you how many times people said I couldn’t do something, and I just ignore them because I know that they don’t know me. I know myself so if they don’t want to help me, it’s okay,” she explains. 

What are your hobbies?

“I guess I don’t have any hobbies, I’m just a “typical” college kid,” Lydia jokes. She says she’s on social media all the time, and she likes to binge watch things on Hulu and Netflix. She points out that when she’s in school, she’s too busy with homework or work to do anything.

***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.

Ever find yourself wondering which side you’re on?  Whether it’s a game where your two favorite teams, deciding between two colors of paint for a home remodel project, determining which political candidate is best, or something as simple as deciding between your two favorite foods, everybody has had to make decisions that they’re uncertain of.  Often, there isn’t a right or wrong decision; but what we decide usually has a (positive or negative) impact.  When we are trying to decide on something, we sometimes have that feeling of uncertainty.  Should I be doing this?  Is this right for me?  What if I chose something different?  That feeling of uncertainty is something we all face on a daily basis and it’s not a bad thing.  Often times, we feel “on the fence” about the decisions we make which sometimes makes us questions things.  When we are “on the fence” about something, we don’t know how to feel about whatever it is.

In past entries, I’ve explained how unless I’m in situations that presents itself, I normally don’t think of myself of having a disability.  No, I’m not ashamed of it; it’s just not something I focus on.  It wasn’t really until after college that I learned the world of disability advocacy existed to the extent it does.  My first job of being an online mentor for students with disabilities really led me into the advocacy world.  Especially after college, I quickly learned that it was something I wanted to get involved in.  Advocating has opened many doors for me and I’ve found my purpose.  I truly love it!

Having said that, though, I often still find myself struggling to find a happy medium.  I feel like I’m somewhere in between most of the time.  I have many friends with disabilities.  It’s interesting to me that most are either completely involved in disability advocacy or they aren’t at all.  I know very few who are in between like myself.

The past month or so has been a great example of this conundrum.  I was gone three weekends in a row in late July and early August.  I had multiple events going on each weekend and my parents arranged their schedule to accommodate me.  The first weekend I met three of my friends from college for lunch and shopping in Milwaukee.  It’s something that I look forward to every year because it’s the only time we all get together.  One of my friends now lives in a different country and she and her family only come back once a year.  We always make sure we get together when she’s home.  These three girls were caregivers for me at UW-Whitewater and the four of us became really close friends. 

The second weekend was when I really felt mixed emotions.  I told my mom I felt like it was a weekend of two extremes.  Saturday, my mom and I were at Disability Pride Fest in Madison literally all day long.  I’m part of a group that’s creating to YouTube channel about people with disabilities and we taped some videos at the festival.  It was a long day, but I had a blast.   Again, I guess I’m used to sticking out, so when I’m around people with all types of different abilities, it’s a unique feeling.  I loved blending in with the crowd and not being stared at or judged If my muscles spasmed or if my tongue accidentally stuck out.  There are very few places where I don’t stick out.  As I’ve explained in other entries, since my disability is very apparent, when I’m at something like that, I automatically feel the need to prove my intelligence.  Please understand that by saying that, I’m in no way trying to belittle people who have intellectual disabilities; it’s just that when you’re nonverbal and use a wheelchair, people unfortunately make assumptions.  The more events I attend, the more comfortable I get.  I truly love being an active member of the disability community.

Sunday of that weekend I attended a gender reveal party for one of my best friends from grade school.  When I got the Facebook invite, I had to take a second to just breathe.  I knew I had to attend because love my friend and wouldn’t miss it for the world, but I also knew it’d be selfishly emotional for me.  As happy as I am for my friend, I just want those exciting life moments for myself.  Knowing I’ll never likely experience those life-changing moments can be a hard pill to swallow.  However, I knew I couldn’t let it stop me from going and supporting my friends.  Mom and I went and it was a great time. Their family and friends know me and are very accepting.  I caught up with another friend and her family too which was very nice.  When they did the reveal, I had to take a couple seconds to compose myself, but then I was fine.  I’m so happy for her and her family, and I’m incredibly blessed to have friends who continue to go out of their way to include me in their life—it truly means the world to me!

The last weekend my parents and I drove all the way up to Superior where I had a two-day Independent Living Council meeting.  The Council rotates meeting at the eight Independent Living Centers across Wisconsin.  I’ve been on the Council for about two years now, and I finally feel like I understand what it’s about.  I’m becoming more and more active on it.

One of the weekends, my mom and I were talking and I said, “man, I’ve taken us on quite a journey, haven’t I?” She chuckled and agreed.  The events of the last month have been a whirlwind.   I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can.  At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world. 

***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.

The Wisconsin Department of Health Services (DHS) recently announced that based on results from a recent procurement, Inclusa and Lakeland Care managed care organizations (MCO) have been selected to provide the Family Care program in Brown, Door, Kewaunee, Marinette, Menominee, Oconto, and Shawano counties beginning January 1, 2020. Incumbent managed care organization Care Wisconsin will no longer provide the program in those counties after December 31, 2019.

Read press release

Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program designed to develop a group of future leaders across the state who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life.

Download the application by following this link: http://wi-bpdd.org/wp-content/uploads/2019/06/201920-Partners-Application.docx

Applications are due at noon on September 1, 2019.

Who can participate?

• Adults with developmental disabilities
• Adult siblings of individuals with developmental disabilities
• Parents/primary caregivers of children and youth with developmental disabilities ages birth to 21.

If you have questions or would like more information about the Partners in Policymaking program, please contact Jenny Neugart at jennifer.neugart@wisconsin.gov or (608) 266‐7707.

NOMINATIONS ARE NOW OPEN FOR THE 2019 DIEHARD Awards

Do you know someone who goes above and beyond to improve community supports for individuals with disabilities?  Do they support self-determination?  Nominate them for a Diehard Award in one of the following two categories: 

PROFESSIONAL ADVOCATE   

SELF-ADVOCATE/GRASSROOTS ADVOCATE

(You may only submit a nomination for one individual per category.) 

A Diehard is an individual who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a steadfast commitment to the principles of community integration and self-determination. Diehards go above and beyond to make sure everyone is counted.

• Awards will be presented at the Self-Determination Conference on October 15th at the Kalahari Resort and Conference Center in the Wisconsin Dells.
• Nomination Forms must be in the BPDD office no later than 12 p.m. on Thursday, September 5, 2019.

•  The Conference Planning Committee reserves the right to present none or multiple awards in any of the categories. 

Download Nomination Form here: http://wi-bpdd.org/wp-content/uploads/2019/08/2019-SDC-Diehard-nominee-form.docx

Please complete the nomination form and submit to:
BPDD/Awards, 101 E. Wilson St., Room 219

Madison, WI 53703

Or Fax to  608-267-3906

Or Email to:  fil.clissa@wisconsin.gov