News
Lisa Pugh, the Director of The ARC Wisconsin, is leading a class for self-advocates this spring with Sydney Badeau, a great self-advocate leader. There is a cost to the course, but all Family Care organizations and IRIS agencies are funding it! Registration for the HealthMatters™ spring course closes April 1. It is five one-hour classes delivered monthly (there are 2 monthly times to participate to fit into someone’s schedule). Here is an overview of our 6 lessons:
• Lesson 1: What Does It Mean to Be Healthy?
• Lesson 2: Step Into Exercise
• Lesson 3: The Fab Five
• Lesson 4: How Much Food Is Too Much?
• Lesson 5: Benefits Healthy Eating Has on Our Bodies
• Lesson 6: Healthy Lifestyle Review
People who have used this course for in-person classes have lost weight, reduced BMI and blood pressure. And it is fun! Here is some basic helpful information to learn more or to share with your care manager or IRIS consultant: https://arcwi.org/the-arc-wisconsin-academy/
• Flyer: https://arcwi.org/content/uploads/sites/17/2021/01/21-009.06-WI-Health-Matters-Course-Flyer.pdf
• Detailed course booklet: https://arcwi.org/content/uploads/sites/17/2020/08/WI-The-Arc-Academy-Course-Description-booklet-3.pdf
• On-line registration: https://arcwi.org/the-arc-wisconsin-academy/#register
If you could meet one famous person, who would you want to meet? Questions like this are normally not asked to adults. It’s not a usual topic that’s brought up in everyday conversations. Meeting famous people isn’t something most adults care about. Of course, almost everyone has a person or two we would love to meet, but it’s not something we normally do. Often, meeting a famous person isn’t a high priority. Most people aren’t comfortable with being called out for doing something good. Often, people appreciate acknowledgement and praise, but we are uncomfortable with it. For people with disabilities or health conditions, many times, offering to meet a celebrity or being praised for something can be a unique experience.
In an entry I did a few years ago, I discussed my opinion about the whole inspiration controversy. In short, while many people with disabilities hate when the word “inspirational” is used to describe them, I personally don’t normally mind. Don’t get me wrong, I don’t like being praised or called out for something I do, but I hope that I can be an inspiration to others. I believe part of my role as a person with a significant disability is to educate and show others what is possible.
I’ve seen many news stories about people with disabilities or health conditions getting to meet celebrities or getting to do something special as a nice gesture of an organization or person. While this is totally awesome for some people, I personally don’t like the idea of this for someone like myself. Why would I deserve something like that? Just because I have some limitations and have a different life than most? To me, that is not a good reason. I understand and fully support things like Make-a-Wish for kids with terminal illnesses. Kids with terminal medical conditions unfortunately don’t have much to look forward to. If their one dream of meeting someone famous or going on that special trip somewhere can be fulfilled, by all means, it should. However, I don’t believe that those of us who have physical disabilities (that aren’t considered progressive or terminal) should get that type of special treatment.
I was talking with my mom a few weeks ago about this, and I was telling her how a recent article I read about a man with the same condition I have has special relationships with a few popular country singers. I told her how I thought that wasn’t right. She then brought up something I never thought about. She said maybe that’s another form of advocacy for some people. Maybe some people like sharing their story with famous people and need that recognition to feel worthy. For me, personally, I feel like that is completely asking for pity. For full disclosure, I’ve done meet and greets after a couple of country concerts I attended with my friends, but that’s purely because we were a couple of giddy girls wanting to get autographs and snap a picture with a singer we loved. It lasted about 30 seconds and nothing was even mentioned about me personally. That’s the only way I will ever “meet” a celebrity. I have also met and shared my story with legislators, but when I do that, I’m advocating for better funding for the services I need to receive in order to help me live independently.
I’ve been told that some people probably think some of the advocacy work I do is asking for pity or drawing the wrong type of attention that I want. When I write these articles and do the YouTube videos, I hope I educate people about what life is like for people with disabilities and what we can do. I never ever do this to invoke pity. By doing what I do, am I bragging or showing off? Honestly, I can understand why some people may think that way, and I don’t think they’re completely wrong. I’m proud of where I am and what I’ve accomplished given the curves life has thrown me. I think people have to realize that people with disabilities may never be able to accomplish those big “life milestones” that most of our peers will be able to, so, for me at least, when I share personal experiences about living with disability, many times when I post whatever it is on my social media, I think of it as another milestone or life accomplishment. Is it the same as one of my friends posting about a new house or something cute or funny that their child just did? Of course not, but that’s ok. I still appreciate getting praise and acknowledgement from it.
I’ve been fortunate to have received some awards and recognition various things mostly related to the advocacy I have done. A couple of examples come to mind. The first was back in my senior year of high school. At the end of the year, I was invited to the senior sports awards banquet. Now, I obviously wasn’t an athlete, so I had no reason to be invited. I was told that the athletes had voted me to get the sportsmanship award (I attended almost every football and basketball game during high school). I also received a special sportsmanship scholarship at the academic awards night. Were both of those due to having a disability? In a roundabout way, probably, but again, it was because of something I was able to do despite my circumstances. I’m sure some people in my class felt like I was given undeserved recognition, but, for me, it was a huge honor.
Another thing that comes to mind is when my coworker and I received the “You Make a Difference” award for the articles we wrote in the local newspaper. This was when I was in college, and another lady and I had a weekly column we switched off writing articles for. It was all about experiencing life living a disability. The lady’s son had a disability, so she wrote from her perspective, and I wrote about my experiences. It was all voluntary, but the exposure was incredible for us. We ended up getting an award in Madison. I don’t remember where it was even through, but it was a very special honor. Again, it was because of my willingness and ability to share personal experiences about my disability that this happened.
The last example is when I received the Self-Advocate Diehard Award at the 2019 Self-Determination Conference. I’m not one to boast about myself, so I haven’t mentioned it in any journal entries until now. I was incredibly surprised and honored to receive this. I had done quite a bit of work with the Self-Determination YouTube channel and other things that year, so it was very humbling to be recognized. That too, was directly related to having a disability.
While it’s often hard or uncomfortable to accept, everyone appreciates some type of recognition or praise to some extent. There are so many different views related to this topic. There isn’t a right or wrong--it’s really about individual preference. People with disabilities just have some extra things to consider when receiving acknowledgement.
***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.
WKOW: ‘It’s really tough’: Disability advocates frustrated over vaccine access
By SD Network, 2021-02-27
While Wisconsin has made progress in the vaccine rollout, disability advocates say some of the most vulnerable people still face multiple challenges accessing it. Mixed messages about who is eligible has been confusing and when people are eligible, many are having problems making appointments due to not having broadband access. The Department of Health Services is working on developing an online portal for people to sign up for the vaccine when they're eligible. They also state that there is a phone option. Transportation is another barrier people are struggling with. They are having a hard time finding transportation to the appointment once it's set up.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Employment First Conference: Sponsorship, Microenterprise and Save the Date
By SD Network, 2021-02-27
Wisconsin Employment
First Conference
Thursday, May 13, 2021
Virtual Format from 8:30am to 3:30pm
Registration opening soon!
This year’s Employment First conference will provide an immersion into person-centered thinking and practices. Throughout this interactive, virtual event you will have the opportunity to network with others and learn how genuine person-centeredness is essential for raising expectations, driving innovation and change, and supporting people to achieve meaningful lives and careers in the community.
Conference Sponsorship
Show your support for Employment First in Wisconsin by sponsoring the 2021 Virtual Employment First Conference! Last year, over 300 people attended the WI Employment First conference and this year we expect even more!
This year's program will feature experts on Person Centered Planning and employment from around the US, including:
Sheli Reynolds - Associate Director, Training and Technical Assistance University of Missouri Kansas City-Institute for Human Development (UCEDD) and key developer of the Charting the Life Course framework and tools
Serena Lowe - Senior Adviser to TASH and the newly established national Disability Employment Technical Assistance Center
Stacey Ramirez - Person-Centered Thinking trainer with HRS, Inc and State Director for The Arc Georgia
Nicole LeBlanc - Coordinator of the Person-Centered Advisory and Leadership Group for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS)
Alixe Bonardi – Senior policy associate with HSRI and director of the National Core Indicators effort
Laura Buckner - Founding Partner of The Institute for Person Centered Practices and Mentor Trainer with The Learning Community for Person Centered Practices (TLCPCP)
Doug Crandall and Patty Cassidy – Senior Associates with Griffin-Hammis Associates and nationally recognized Subject Matter Experts on Customized Employment
Jennifer Bumble - Assistant Professor of Special Education at the University of Missouri St. Louis and former educational consultant with the Vanderbilt Kennedy Center and Tennessee Works
Microenterprise Vendor
Sign up to be a Microenterprise Vendor at the 2021 Employment First VIRTUAL Conference! The All Abilities Market is an online marketplace where microenterprise owners and artists can sell their products and/or services. You have the unique opportunity to join this marketplace and sell online, not only at the Employment First Conference but all year long! Support is available to help you get set up in the All Abilities Market.
If you have any questions, please contact Molly Cooney at molly.cooney@wisconsin.gov or call 608-266-0266. Conference information will be posted at https://wi-bpdd.org/index.php/employment-first/
U.S. ACCESS BOARD: U.S. Access Board Launches Online Discussion Platform on Autonomous Vehicle
By SD Network, 2021-02-26
Self-driving or “autonomous” vehicles (AVs) stand to revolutionize transportation in the U.S. and around the world. It’s important that they’re designed to be inclusive of everyone. To promote accessibility for people with disabilities in the design of AVs, the U.S. Access Board is hosting “Inclusive Design of Autonomous Vehicles: A Public Dialogue” with the U.S. Department of Labor’s Office of Disability Employment Policy, the U.S. Department of Health and Human Services’ Administration for Community Living, and other federal agencies.
This national online dialogue is open to the public at this time. You’re invited to share your ideas for designing AVs that are inclusive of everyone, including passengers with physical, sensory, or cognitive disabilities. The dialogue hosts want to hear from you about:
- Design and development of AVs to ensure accessible entering, exiting, onboard maneuvering, and securement for individuals with mobility disabilities;
- Accessible ride hailing, on-board communication, and interacting with AVs for passengers with hearing, visual or cognitive disabilities; and
- Ideas for future research needs and next steps required to ensure accessible design and development of AVs for those with disabilities.
Join the dialogue at any time now through May 5 to submit your ideas or to comment and vote on ideas submitted by others. Visit TransportationInnovation.IdeaScale.com to participate at your convenience.
Virtual Public Meetings on AVs
The dialogue is being held in conjunction with the Board's public series of four virtual meetings on making AVs accessible to passengers with disabilities. Visit the Board’s AV webpage for more information about the series.
WISCONSIN DEPARTMENT OF HEALTH SERVICES: Request for Public Comment Home and Community-Based Settings Rule: Heightened Scrutiny
By SD Network, 2021-02-23
The Wisconsin Department of Health Services (DHS) is opening a 30-day public comment period on its findings about home and community-based service long-term care settings that were identified for heightened scrutiny review. Review is needed to determine if these settings are truly home and community based and not institutional. This public comment period is in accordance with federal requirements.
DHS operates several home and community-based services long-term care programs under federal authority from the Centers for Medicare & Medicaid Services (CMS). Medicaid waiver funding for these programs can only be used to support people living in community-based settings, and cannot be used to support someone who is living in an institution. Review is needed for settings that are located within another facility that provides inpatient treatment (like a skilled nursing facility), on the grounds of a public institution (like an inpatient facility that is financed and operated by a county, state, municipality, or other unit of government), or because of other factors that may lead to isolating some people from the broader community.
DHS has conducted a heightened scrutiny review process and determined there is enough evidence to show CMS that these settings are not institutional in nature and that they meet CMS’ compliance requirements. The evidence from the heightened scrutiny review is documented in “evidentiary summaries.”
Public comment is an opportunity to support or rebut information DHS obtained from its heightened scrutiny reviews of facility-submitted documentation and onsite visits.
Find more information about the public comment period, along with a list of the settings and their evidentiary summaries, on the DHS website.
ADMINISTRATION FOR COMMUNITY LIVING: New Research Funding Opportunity for Rehabilitation Engineering Research Centers Program on Blindness and Low Vision
By SD Network, 2021-02-20
The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has opened a new funding opportunity for a Rehabilitation Engineering Research Centers (RERC) Program on Blindness and Low Vision.
The purpose of the RERC program is to improve the effectiveness of services authorized under the Rehabilitation Act by conducting advanced engineering research on and development of innovative technologies that are designed to solve particular rehabilitation problems or to remove environmental barriers. RERCs also demonstrate and evaluate such technologies, facilitate service delivery system changes, stimulate the production and distribution of new technologies and equipment in the private sector, and provide training opportunities.
RERC on Blindness and Low Vision: This particular opportunity is for an RERC to conduct research and development activities toward technologies that will promote independence and community living among people with low vision and blindness.
View more details and application instructions.
Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on April 19, 2021.
THE HILL: Disabled people who had trouble voting falls dramatically: report
By SD Network, 2021-02-20
According to a new report, people with disabilities had far fewer problems with voting accessibility in 2020 than in 2012. The gap between disabled and non-disabled voters who experienced voting problems also narrowed significantly. About 75% of voters with disabilities used early voting or mail-in voting in 2020.
THE PLAYBOOK: Building a Culture of Person-Centered Care: Where We Are and Where We Need to Go
By SD Network, 2021-02-20
As health systems continue to test approaches to better health care quality, the delivery of person-centered care — defined as care that is guided by people's preferences, needs, and values — is key for health care system transformation. In a recent report, researchers analyzed responses to the question, “When thinking about your experiences with the health care system over the past year, how often were your preferences for care taken into account?" This will help to better understand how aging adults experience care, if their preferences are acknowledged, and whether their experiences vary by race and ethnicity, wealth and income, and/or insurance status.
February 2021
Connect | Share |Learn | http://sdnetworkwi.org/
Disability Advocacy Day of Action
Mark your calendar! Disability Day of Action is March 23rd. It's a virtual event focused on connecting Disability Advocates with their legislators to talk about issues that matter to them. Attendees are expected to participate in the morning briefing and call their legislators in the afternoon. Learn more and register today!
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. Videos are posted a couple times a month 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).
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 Lynndale. As a dedicated self-advocate, she encourages people to follow the path to look forward. Stop by this month's Member Spotlight to get to know Lynndale.
Who should we shine the spotlight on next?
Take five minutes to check out what's happening on the Self-Determination Network:
- Voter Challenges Continue: While some recent legislative changes and an increased emphasis on absentee voting helped some, Wisconsinites with disabilities continue to face multiple challenges when trying to exercise their right to vote. Find out how advocates are still working to get better access for voting.
- Plain Language Guide for Person-Centered Self-Assessment: Your state is trying to make services work better for people. They want people who use support services to be listened to. Take a look at this great resource.
- New Study Shows Prevalence of Intellectual Disability: According to a new study from the Center for Disease Control, there is an increase in children with intellectual disabilities. Read more about what the study found.
- Electronic Health Records: People with disabilities often face multiple challenges when accessing healthcare services. Learn about how Electronic Health Records may help with some of this.
- Voting Resources: There's a election coming up in April. Check out these great resources from the Wisconsin Disability Vote Coalition.
- The Future of the Direct Care Workforce: The direct care workforce shortage has continued across the country. Look at this detailed report which includes a current analysis of the workforce and recommendations to improve the jobs for this workforce.
- New Means of Emotional Support: Voice assistant devices, such as the Amazon Alexa, have made more things possible for people with disabilities. Learn about how a new study suggests that these devices also provide some emotional support for people.
- Employment Outcome Research Funding Opportunity: A new funding opportunity from the Disability and Rehabilitation Research Projects and Center Program hopes to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders. Grant applications are due March 22nd.
- Economy Recovery Agenda: National Disability Institute offers a 15-point agenda to advance economic recovery and resilience for people with disabilities who represent a most vulnerable population too often ignored in plans for the economic recovery for our nation. Learn about some of the suggestions.
- Opportunity to Provide Feedback on Web Accessibility Guidelines: The Accessibility Guidelines Working Group has published a working draft of the third version of the Web Accessibility Guidelines. Feed back is due February 26th.
- Employment for People with Disabilities Continues to Stall: According to the January Jobs Report, the pandemic continues to slow employment for people with disabilities. Find out why people are hopeful it will start to improve soon.
- New Administration Prioritizing Accessibility: The new president administration is making accessibility a priority. Learn about what steps are being made to ensure accessibility for everyone.
- Accessible COVID-19 Resources: The Center for Inclusive Design and Innovation, a part of the College of Design at Georgia Tech, has partnered with the CDC to ensure that important information about the virus is accessible for all people. Check out these great resources!
- "Nothing About Us Without Us" Call to Action: The saying, "Nothing About Us Without Us" has been used in the disability community for many years. It simply means that no decisions should be made regarding people with disabilities without their input. Read about a nationwide program that aims to increase participation of underrepresented communities in medical research.
- Television Representation: More and more entertainment companies are committing to consider actors/actresses with disabilities in their movies. Read about how a big tv network recently committed to auditions for actors/actresses with disabilities.
- Impact of the Pandemic: A recent survey done by the Wisconsin Survival Coalition revealed the impact of the pandemic is having on people with disabilities and their families. Learn what the survey found.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Financial Protection For Older Adults During The COVID-19 Pandemic: February 23rd, 12p.m. to 1p.m., Online
- Webinar: Self-Advocacy For Women Living With Paralysis: February 23rd, 2p.m. to 3:30p.m., Online
- Webinar: Medical Care And Long-Term Care Facilities: March 4th, 1:30p.m. to 3p.m., Online
- Disability Advocacy Day Of Action: March 23rd, 10a.m. to 4p.m., Online
- Virtual Advocacy For Change: March 30th and 31st, 9a.m. to 12p.m., Online
- Virtual Employment First Conference: May 13th, 8:30a.m. to 3:30p.m., Online
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.