News

The 30th anniversary of the Americans with Disabilities Act ( ADA) is this month. One of the many things it is to require public transportation to be accessible. While there have been giant improvements made in this area, there are still many things that need to change. 

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How far is too far? That’s a loaded question in this day and age. With the ongoing pandemic colliding with the outbursts from the equity movement, 2020 will be read about in history books for years to come. Many people feel like the country is in shambles. People have different opinions about the two situations which creates tension everywhere. Different beliefs even among families are causing more unease during this unprecedented time in the world.

I’ll be the first to admit, I’m a pretty conservative person—I always have been. On most things, I listen to the experts and follow the advice of professionals. My immediate family is the same way, but I also think living with a disability has made me extra strict on some things. That’s why it was unusual that I wasn’t worried when COVID was first talked about back in late February. My parents were worried about it, but I didn’t think it was going to amount to anything. It wasn’t until everything starting shutting down in early March that I began to worry. States began implementing stay-at-home orders, and the number of cases began to skyrocket. News stories about hospitals prioritizing ventilators and refusing to treat people with disabilities began popping up in my Facebook groups.  What would happen if I would get it? It’s a question that still lingers in my mind today.

I’ve noticed that many people have eased up on the guidelines such as mask-wearing, social distancing, and attending large group gatherings. While I understand we all are sick and tired of living in a bubble for so long, the virus is still very prevalent across the country. It’s very hard to understand this when people are asymptomatic, but yet, are carriers of the virus. This is where the concept of being accountable for one’s own actions is so important. A person may not be overly concerned about contracting the virus herself/himself, but the thing that the person needs to remember is that she/he can spread it to others without even realizing it.

Obviously, nobody intentionally means to spread the virus to other people, but when people choose not to follow the guidelines, it often seems like people don’t care about others. This can be very frustrating and cause tension among friends and family. To those of us who are concerned about getting the virus, it’s hard to understand why some people aren’t taking the recommended precautions. The saying, “if you don’t feel the need to do it for yourself, do it for others” comes to mind during times like this.

Taking responsibility for one’s own actions carries into the equity movement as well. I personally believe that every single person on earth is racist. Most of the time it’s unintentional and we don’t even realize it. As a society, I feel we need to do a better job of understanding different cultures. Regardless of what culture it is--ethnicity, sexual orientation, disability, economic status, or something else—we need to do a better job of understanding people.

There have been many posts on social media about comparing ethnicity inequality to disability inequality--some agreeing; others disagreeing. While I agree that there are some similarities, I don’t think now is the time to compare. I don’t think it’s right to draw attention away from the ethnicity inequality crisis. Yes, even though the 30^th anniversary of the Americans with Disabilities Act (ADA) is this month, there are still many inequalities for people with disabilities; however, we need to remember that we’re not the only culture still facing barriers.

Both of these issues boil down to having respect for one another. Yes, people have the right to have their opinions of what’s wrong and right and what people should and shouldn’t do, but we need to be respectful. How far is too far? That’s a rhetorical question. How far should the government go to enforce the pandemic guidelines? How far should law enforcement go to ensure equality?  How far does society have to go to have equality for all people?  Those are some questions that we may be pondering for years. Unfortunately, I don’t believe either situation will be resolved anytime in the near future. It’s my belief that both situations may take many years to resolve. My hope is that people will be more respectful of others as we create this new normal. Not only will it help to resolve the issues at hand, it will bring us closer together! 

***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 Great Lakes ADA Center is conducting a research to identify emerging practices to support disability inclusion in the context of the pandemic. They are looking for members of disability employee resource or affinity groups, and diversity and inclusion professionals to interview. Participation includes a 30-40 minute interview via a web-based platform where participants will be asked about their work experiences, success stories, and resources to support disability inclusion in the workplace. 

 Findings will be disseminated widely through the center and various disability and business-related networks. All responses will remain confidential and anonymous, with all shared results being de-identified. For more information contact: Courtney Mullin, Research Assistant, Great Lakes ADA Center at cmulli4@uic.edu.

The Task Force on Caregiving is asking for public input on draft policy proposals to help support and strengthen the direct care workforce, increase access to care, and improve the quality of caregiving in Wisconsin. The Task Force wants feedback from people in Wisconsin with a wide range of perspectives and experience, including family caregivers, paid direct support professionals, people receiving care, communities of color, and people living in urban and rural settings.

Materials on the Policy Proposals and a Public Input Meeting on June 29 have been posted to the website. A Public Input Survey will be available from June 29 through July 14.

Meet Duane. When he’s not biking, kayaking, or playing hockey, he strives to assist people with disabilities have choices through the help of technology. He’s a strong advocate of self-determination and believes it’s the best practice for people with disabilities to live the best life possible. We’re so fortunate to have Duane as a member of the Network! 

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

Duane began working with people with disabilities as a junior in high school. He started as a Direct Support Provider at St. Francis School for Exceptional Children in Freeport, Illinois and eventually became the residential director there. He went on to be a Qualified Mental Retardation Professional for an agency in northern Illinois and while attending graduate school at the UW-Madison, was hired by the Waisman Center to assist in the design, development and implementation of the Sound Response Program. He explains that Sound Response was the first documented Remote Supports service in the United States. The Sound Response program would evolve into Night Owl Support Systems, LLC and he is one of the owners of that organization. He spent the first part of his career helping students/children by teaching skills that would foster their independence and allow them to live in the community when they became adults. “Choice has always been a big part of my value system and it’s integrated into the way I think. The latter part of my career has been involved with providing technology to people with disabilities to empower them to make choices and the technology allows for more self-direction,” he shares. 

How are you involved with self-determination? Why did you join the SD Network?

Duane was a part of the self-determination movement in Dane County when most people receiving waiver services shifted from the legacy waiver to self-direction. That being said, he explains that as people shifted to self-direction, they were offered more choices and could utilize Remote Supports as one of their options. His involvement was from the perspective of a Remote Supports provider. This would allow people more independence by not having staff 24-hours a day.

He joined the Self-Determination Network to stay connected with the self-determination movement. He’s a strong advocate for self-determination and recognizes that not all places offer self-determination as an option for people. He wants to be able to continue to advocate that self-determination is best practice for people with disabilities to live their best life. Joining the SD Network allows him to keep updated on the latest activities and advocacy. 

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

Duane says that there are a lot of exciting things going on right now. He explains that the last couple of years have shown an explosion in the awareness and use of enabling technologies. There are new technologies offering more sophisticated Remote Supports, there are many new devices people use day-to-day and new apps for making life much easier. From residential supports to vocational supports and transportation, the technologies are more readily available than ever. Wisconsin, like some other states, is promoting the use of enabling technologies through technology conferences and technology fests.  “I believe the push for technology will only enhance self-determination” he tells us.  

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

"Technology,” Duane exclaims! Having been a part of the technology evolution regarding enabling technologies and Remote Supports, he has been able to see the benefits that technology has provided to people with disabilities allowing more self-determination. “Many people do not have a choice of where and with whom they can live. Technology offers that opportunity,” he says.    

What are some of your hobbies?

Duane enjoys bicycling, swimming, kayaking and playing his guitar. He also can often be found playing hockey in Sun Prairie, WI.

***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.

Many parents of children with disabilities worry about their child's future. What happens to him / her when I'm gone? Will he/she be able to get a job? It's becoming increasingly popular for parents to start businesses so that their son or daughter with a disability will be able to work. This father-son duo has three businesses going. This father wanted to teach his son skills he would need to live his best life and make him as independent as possible. 

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Recently, there has been some confusion about Social Security Disability Insurance (SSDI) and the Pandemic Unemployment Assistance. PUA is the additional $600 per week the federal government is paying in unemployment assistance, even to people who typically do not qualify for state unemployment benefits.  However, Wisconsin was one of two states that had a blanket ban prohibiting SSDI Recipients from receiving this regular unemployment compensation. The Department of Workforce Development reversed its position, but has not received guidance from the Department of Labor's national office. 

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ACL's National Paralysis Resource Center (managed by the Christopher & Dana Reeve Foundation) will open the new grant application cycle for the High Impact Innovative Assistive Technology (HIIAT) grants program on July 13. Eligible applicants are restricted to state programs funded through the State Assistive Technology Act, including implementing agencies and agencies subcontracted for Assistive Technology activities.

Launched in 2015 in partnership with ACL, the National Paralysis Resource Center’s HIIAT grant program is a competitive grant program that awards a small number of one-year grants of up to $75,000. These additional grant funds will help state programs expand their reach in the field of assistive technology through new innovations that will impact people living with paralysis in their homes and communities. Funding for this new cycle of grants was made possible through a cooperative agreement with the Administration for Community Living.

Awarded grant funds support innovative programs or services that:

• Target a specific, well-defined underserved population within the broader disability community in their state;
• Through assistive technology devices or services, increase access to services, increase the independence or inclusion of people within the underserved population within their communities; and
• When complete, will have a demonstrable, direct impact on people affected by the project.

Applications are due September 15.

Self-Determination Network News:

June 2020

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

2020 Self-Determination Conference

The Wisconsin Board for People with Development Disabilities (WBPDD) announced that the 2020 Self-Determination Conference will be virtual in October. There still will be opportunities to participate in the things we all enjoy such as attend sessions led by self-advocates, have chances to obtain get information from exhibitors, shop at a virtual micro-business store, have time to chat with friends, and much more. In this time of uncertainty, the WBPDD and its sponsors understand people maybe struggling. In hopes of easing the burden, registration for the conference will be free for everyone this year! Stay tuned for more information about registration in the coming weeks, but, until then, we invite you to listen to the popular self-determination song that's played at the conference every year. Peter Leddy changed the words a little bit. We hope you enjoy it! 

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. This month, we're introducing something a little different. One of the hosts on the Channel, Stacy, is going to do a vlog (which is a video blog) about her experiences living with a disability. We hope that you may be able to relate to some of the things she shares. We encourage you to share your own experiences and thoughts in the comments below the video. 

Check out the newest videos on the channel:

• Thank You #EssentialWorkers
• Don't Tell Marie What She Can't Do, She'll Prove You Wrong
• Stewing with Stacy: Let Me Introduce Myself

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.

In June, we're shining the spotlight on Julie. This awesome mother strives to help her daughter have control over her life and encourages other parents to do the same. Stop this month's Member Spotlight to get to know Julie.

Who should we shine the spotlight on next?

Stacy’s Journal

"I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better."

In this month's journal entry, Stacy opens up her continual care struggles. She discusses her experience with trying another program. Have you had a similar experience? 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:

• Coronavirus Heightens Caregiver Shortage:   For people with disabilities who are reliant on other people to assist them with all of their basic needs, the virus has brought some additional challenges. Read about some of the issues people are facing.
• House Approves Payment for People with Disabilities:  A new round of stimulus checks for people with disabilities and billions for home- and community-based services are part of a $3 trillion relief bill that faces an uncertain future.Learn more about this bill. 
• Guidelines for Voc Rehab Services:  New guidance from the feds suggest that Vocational Rehabilitation agencies can continue providing services during the pandemic, but adjustments will be needed. Find out what is being done to keep people safe. 
• Wheelchair Accessibility Feature:  Google Maps now has a feature that indicates whether or not a place is wheelchair accessible.Learn how it works. 
• Be Inspired:  Two self-advocates are on an unique mission to raise awareness for people with disabilities. Read about what they're doing. 
• Self-direction Model Becoming More Popular:  With the pandemic, living in a facility setting has become much more dangerous. Read about why people are choosing the Self-direction model more and more these days. 
• Website Accessibility Not a Priority:  According to a recent study, most organizations don't do accessibility testing on their website. Learn what else the study found. 
• Increase the Affordable Care Act: The Coronavirus has resulted in job loses or income changes, which has had an effect on health care. Learn why many people feel that Congress should pass a law--or laws--that would increase access to health insurance through the marketplace created by the Affordable Care Act.
• Online Disability History Exhibit:  The Smithsonian put together an online exhibit about the history of disability in the United States. Find out what it includes.
• Resource for Job Seekers:  Finding employment is hard for everyone right now. Learn about a helpful resource for job seekers with disabilities.
• Positives During a Pandemic:  The pandemic has caused havoc across the world, but it has also brought out some positives for people with disabilities. Learn about going virtual has been a huge positive for students with disabilities at one Milwaukee theater. 
• Hospital Visitor Policies:  When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff.  Read about what laws allow people with disabilities to have attendants in the hospital to assist them.  

Upcoming Events

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

• Webinar: Virtual Wellness: June 18th, 1p.m. to 2p.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 25th, 10:30a.m. to 11:30a.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 30th, 9a.m. to 10a.m., Online
• Webinar: Using The ADA And ABA Standards - Chapter 6: Plumbing Elements And Facilities: July 2nd, 1:30p.m. to 3p.m., Online
• 2020 Janesville Adaptive Water Ski Clinic:  July 10th, 9a.m. to 3p.m., Traxler Park on the Rock River, Janesville 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.

When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff. Under laws such as the Americans with Disabilities Act (ADA)  accommodations like these are required. In response to a recent federal complaint filed regarding discriminatory "no visitor" policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic..

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