Gold. Silver. Bronze. Those have been popular words on TV the last few weeks with the summer Olympics taking place in Japan. Yes, because of the pandemic, it’s a little different because no fans are allowed, but the games have brought some much-needed positive excitement to the world. From the many records broken, to the stunning upsets, to the inspiring stories, it’s been refreshing to hear so many positive news stories after over a year and a half of pretty rough times. The Olympics have also highlighted some pressing issues in today’s society.

As I write this, I can think of three different types of Olympics: The “regular” Olympics, the Paralympics, and Special Olympics. I can’t help but think of the movie Murderball when describing the difference between the Paralympics and Special Olympics. The movie is about wheelchair rugby and in the movie the athletes make a not-so-nice comparison between the Paralympics and Special Olympics. It was trying to illustrate that Paralympians and Special Olympians are very different. Often, there’s confusing between the two which can be very degrading for both parties. Admittedly, I don’t know much about Special Olympics, but they are games for people with mostly intellectual disabilities. From my understanding, the athletes train and compete like other athletes, but it’s more about giving the athletes the opportunities to participate just like everyone else. It’s about having the ability to show personal strengths. The competition isn’t as intense. Whereas, in the Paralympics, the competition is just as intense as it is in the regular Olympics and the athletes are considered elite.

In recent years, both Special Olympics and the Paralympics have received more media coverage. The Paralympics begin a few weeks after the regular Olympics end this month. The opening ceremony and a few of the events will be on tv. I watched the opening ceremony of the last Paralympics a few years ago, and it was cool because I actually knew some of the athletes from Whitewater. I recently looked at the roster for this year’s USA Men’s Wheelchair Basketball team and I realized I still know four or five of the players. In fact, I was talking with one of my caregivers about it and I was saying I couldn’t believe some of those guys are still playing—they were playing on the Whitewater team over 15 years ago.

Watching the Olympics makes me wonder if things were different, would I be athletic? Surely, I probably wouldn’t be an Olympian or anything, but I think I would have done some sports. In a previous entry a few years ago, I talked about my love for sports. I absolutely love watching them—especially football and basketball. As I discussed, besides trying a little recreational power soccer a few nights in college, I’ve never played a real sport. Could I have been in Special Olympics or played in a Miracle League (where kids with disabilities are paired with able-bodied buddies to play baseball)? Probably, but I didn’t. It wasn’t on my radar, and, as a kid, I wanted to fit in with my friends. My sister and brother-in-law are involved in myTEAM TRIUMPH. It’s where able-bodied athletes volunteer to help someone with a disability complete a race. The able-bodied people often pull the person with a disability in a bike cart or an inner tube (while swimming). I know my sister would love for me participate in a race, but, for me, I can’t bring myself to do this. Saying this will make me sound incredibly vain, but, as a fully intellectually capable person, I can’t imagine being put it the spotlight for something others did. It’s amazing my sister and brother-in-law are involved in this, but, unfortunately, I don’t see myself ever doing it.

Competition is good for everyone. It’s motivates us to become better at whatever we’re doing. However, as we’ve seen in this Olympics, the pressure to perform can lead to serious mental health issues. Simone Biles, who was supposed to the gold medal favorite in gymnastics, took herself out of two of the competitions citing mental health issues. As unfortunate as it was, it has brought so much awareness to the issue. Social media has blown up with posts about this. While there are some negative posts out there about how she left her team hanging, most of the posts I’ve seen have fully embraced and supported Simone for recognizing it and stepping away. For many people, including myself, seeing her step away made them realize that it’s ok not to be ok. Besides the pandemic, I think it’ll be the biggest thing remembered from this Olympics. It’s amazing to see how much impact one athlete can have on the world. 

Athletics give us great entertainment. Sports have a funny way of pushing people to their limit, but also bringing people together. They make people realize what they are capable of and how far they can go. They also help us realize that humans are humans, and nobody is perfect. Sports teach us what’s important in life!

***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 U.S. Access Board has released a summary report on its four-part series of virtual meetings on making autonomous vehicles (AVs) accessible to passengers with disabilities. The sessions featured presentations by invited speakers who shared information and research results on design considerations and solutions for making AVs accessible to passengers with mobility, sensory, or cognitive disabilities. They also provided an opportunity for members of the public to pose questions and to share information and ideas during the session or through an online discussion platform. 

Read summary

The Internet has opened up a whole new world for society, but it's far from being fully accessible to all people. Accessible websites allow users to absorb digital content by senses like sound and sight. They also have keyboard-based and voice-based navigation abilities. One of the challenges of improving website accessibility is that hundreds of new websites are created each minute. 

Read more

Late in July, we celebrated the 31st anniversary of the Americans with Disabilities Act (ADA). The Biden-Harris administration released a fact sheet about what they've done to ensure people with disabilities receive resources and are included in key administration proposals. 

Read fact sheet

Recently, the US Department of Justice and the US Department of Health and Human Services released guidance that explains that explains when “long COVID” may be a disability under the ADA, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act.  Many people are experiencing long-term effects of COVID and the government is committed to ensuring that people understand their rights under federal nondiscrimmination laws. 

Read guidance

Most use the Internet on a daily basis. The opportunities that the Internet brings are endless. However, for people with visual impairments, these opportunities are significantly more limited. While equipment like screen readers have improved, the opportunity for people with visual impairments to use the Internet is far from perfect. The author of this article explains why she thinks businesses should make web accessibility a priority. 

Read more

ACL Policy Update: Your input is needed on the “No Surprise Billing” rule

By: Vicki Gottlich, Esq., Director, Center for Policy and Evaluation

On July 13, an interim final rule with comment period (IFC) was published in the Federal Register that implements requirements set forth in the No Surprises Act to establish protections against surprise billing and excessive cost-sharing in health care.

Surprise billing can occur when someone receives care from a provider outside of their insurance carrier’s network. This often occurs in emergency situations, when people do not have control over where they are taken for medical care. It also can occur if someone visits their in-network doctor, but another provider who is outside of the insurance carrier’s network assists that person’s doctor in their care.

In those instances, if the person’s insurance carrier doesn’t cover the cost for the care received from the out-of-network provider, or only covers part of the cost, the person may be billed for the difference between what insurance covered and the total cost – even if they have met their deductible or out-of-pocket limits. Those surprise bills often do not count toward deductibles or out-of-pocket limits.

Medicare, Medicaid, Indian Health Services, Veterans Affairs Health Care, and TRICARE already provide protections against surprise billing and excessive cost-sharing. The new rule adds these protections for people who are covered by commercial health plans.  

People with disabilities and older adults are more likely to have to go to the doctor frequently or have medical emergencies than people without disabilities or younger adults. For people with disabilities and older adults who are covered by health plans through their employer, a federal or state-based Marketplace, or the individual market, this rule means those visits will be protected against surprise billing and excessive cost-sharing. The rule also ensures that no one can be charged for out-of-network costs without notice. That notice must be accessible to people with disabilities and people with limited English proficiency. This means that language assistance services and/or auxiliary aids and services must be provided at no cost to the individual. These include:

• Interpreters
• Large print materials
• Accessible information and communication technology
• Open and closed captioning
• Other aids or services for persons who are blind or have low vision, or who are deaf or hard of hearing

Patients also have to provide informed consent to the notice, meaning that they have to be able to understand the information in the notice and be free to make a decision about whether to consent to the out-of-network costs they are receiving notice for.

Input from the aging and disability networks, and the older adults and people with disabilities that we serve, is critical. HHS is particularly looking for comments on:

• Whether the provisions and protections related to communication, language, and literacy sufficiently address barriers that exist to ensuring all individuals can read, understand, and consider their options related to notice and consent
• Additional or alternate policies HHS may consider to help address and remove such barriers

Comments on the rule can be submitted online or by mail until September 7, 2021 at 5pm.

The Federal Communications Commission (FCC) recently released a public notice seeking nominations for membership on the Communications Equity and Diversity Council (CEDC) for the new two-year charter through June 29, 2023. 

The purpose of the CEDC is to provide recommendations to the FCC on advancing equity in the provision of and access to digital communication services and products for all people, without discrimination on the basis of race, color, religion, national origin, sex, or disability.

The FCC seeks applications from representatives of various sectors of the communications industry, representatives of state and local regulators, and representatives of consumer and community organizations. 

No specific nomination form is required; however, each nomination must include the following information:

• Name, title, and organization of the nominee and a description of the organization, sector, or other interest the nominee will represent (if any);
• Nominee’s mailing address, e-mail address, and telephone number;
• A statement summarizing the nominee’s qualifications and reasons why the nominee should be appointed to the Committee;
• A statement, if the nominee will represent a specific organization, describing the organization as well as the benefit of having the organization represented on the Committee; and
• A statement confirming that the nominee, if seeking appointment for the individual’s expertise and not as a representative of an organization or entity, is not a registered federal lobbyist.

All nominations, including the requisite statements listed above, should be submitted by e-mail to CEDC@fcc.gov. 

Application Deadline: August 10, 2021

General information about CEDC is available at https://www.fcc.gov/communications-equity-and-diversity-council. For additional information about the Committee, please contact Jamila Bess Johnson, the Designated Federal Officer for the Communications Equity and Diversity Council, at 202-418-2608, or Jamila-Bess.Johnson@fcc.gov.  Individuals who use videophones and are fluent in ASL may call the FCC’s ASL Consumer Support Line at (844) 432-2275 (videophone).

Self-Determination Network News:

July 2021

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

Registration Opens August 2nd!

The 2021 Self-Determination Conference will be October 18-20. As the COVID variants continue to be monitored, plans are being made to offer three options how people can safely participate in the conference. 

1. At the Kalahari! If you have been fully vaccinated and are comfortable with large in-door gatherings, join us at the Kalahari.
2. At one of the local Watch Parties around the state. If you have been fully vaccinated and are comfortable with smaller in-door gatherings, join others at a local watch party.
3. Join Virtually. If you are not comfortable with coming in person or have not been fully vaccinated, we are offering a virtual option.

Calling Microbusiness Owners

Business owners who have disabilities are encouraged to apply to sell their products/services/art at the conference. People will also have the opportunity to sell online all year long. Applications are due September 1.

Exhibitor Applications Available 

Applications to be an exhibitor at the conference are now being accepted. Organizations that support self-determination and self-directed supports are encouraged to apply. Applications are due September 1.

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 in one of the following two categories: Professional Advocate or Self-Advocate/Grassroots Advocate. Nominations are due September 1.

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 Kristi. This up-and-coming self-advocate has found her passion--disability advocacy. She has recently realized that her voice does matter and that she can make a difference in the world. Stop by this month's Member Spotlight to get to know Kristi. 

Who should we shine the spotlight on next?

Stacy’s Journal

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:

• Ideas for Job Coaches and Workers with Disabilities
• Virginia and Wisconsin Self-Advocates Speak Up

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

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

• Impact of the Pandemic: It's widely known that people with developmental and intellectual disabilities are at much higher risk of getting COVID and dying from it. Learn about what a study found about how COVID has impacted quality of life for people with disabilities. 
• Inclusion Employment Platform: The push for inclusion in the workplace has become more popular in recent years. Read about a professional and employment platform with a committed focus on flipping the conversation around.
• Budget Helps but not Enough: The state budget for the next two years has more money for nursing homes, an pay increase for in-home caregivers, and additional help for people with Alzheimer's and dementia, but it leaves out funding for improvements in services for people with disabilities. Find out what advocates feel was missed. 
• Become a Leader: Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program that develops 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 the next class are due October 1. Find out more and apply today! 
• Prioritizing Inclusion in Film: Recently, a famous Hollywood studio committed to putting more people with disabilities on screen. Learn how one Hollywood studio is taking steps to increase inclusion of people with disabilities. 
• Ipads for Loan: WisTech, Wisconsin's Assistive Technology Act Program, now has iPads available for short term loan for up to 30 days. Find out how the program works. 
• Paralympics May Help Boost Inclusion: Many experts think that this summer's Paralympic Games are an opportunity for businesses to embrace an underrepresented segment of the workforce and help with the global coronavirus recovery. Read about why advocates feel the games will spotlight the need for inclusion. 
• Public Comment on Statewide Transition Plan: The Wisconsin Department of Health Services opened a 30-day public comment period on its updated statewide transition plan to be submitted for final approval to the Centers for Medicare & Medicaid Service.  The public comment period closes July 26.
• Great Resources: Throughout the COVID-19 pandemic, the federal government has provided a range of programs to support individuals, families, and communities. Check them out! 
• Executive Order: Recently, President Biden signed an Executive Order to advance diversity, equity, inclusion, and accessibility (DEIA) in the Federal workforce. Learn what the order confirms. 
• Boost to Disability Services: Although, President Biden's effort to get eliminate waiting lists for people with disabilities by getting more funds into Medicaid and home-and-community-based services has halted at the moment, it appears the plan may soon get new life. Find out why advocates think an increase in funding will be coming soon. 
• Travel Website: The world is opening up again and that means people are beginning to travel. The International Transport Forum and the Federation Internationale de l' Automobile recently launched a new website that has information on facilities and options for people with disabilities traveling by car. Read about what kind of information the website provides. 
• Rise in Employment: According to the June jobs report, there were big rises in employment for people with and without disabilities. Find out how much it increased. 
• Celebrity Case Calls Attention to Questions on Guardianship: Recently, due to the attention from the Britney Spears case, debate over Guardianship has been highlighted. While legal oversight arrangements are needed as protection for some, many disability advocates question the need for them in many cases.  Learn about why many people feel guardianship is too widely used for people with disabilities. 

Upcoming Events

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

• Webinar: ADA Anniversary Update: July 20, 1p.m. to 2:30p.m.,Online
• EngAGED Virtual Social Engagement Summit: July 22, 11:45a.m. to 1:15p.m., Online 
• Webinar: New Approaches To Web Accessibility Requirements Under WCAG3: July 27, 12p.m. to 1:30p.m., Online
• Webinar: Accessible Pedestrian Trails And Shared Use Paths: August 5, 1:30p.m. to 3p.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.