News

Are you a person with a disability, ages 18 and up, working for an employer in the United States? If so, the Southwest ADA Center would like to hear from you. Many employers today offer programs and activities designed to improve the health and wellness of their employees. We would like to learn about the wellness programs that your employer offers and your experiences with them. Participant information will be kept anonymous. For more information or to participate in this survey please contact us at 832-708-869 or email: Megan.Gillespie@memorialhermann.org to schedule a brief interview via Zoom.

The Office of Disability Employment Policy in the Department of Labor has released a paper on the digital divide and disability. It discusses details in three main categories: employment outcomes, home internet subscriptions, and internet use. It entails data on each. Overall, people with disabilities use the Internet less than the average person. This could be due to many factors. 

Read report

The coronavirus pandemic has created a mass-disabling event that experts liken to HIV, polio or World War II, with millions suffering the long-term effects of infection with the virus. Many have found their lives dramatically changed and are grappling with what it means to be disabled.

Read more

The U.S. Department of Health and Human Services (HHS) – through the U.S Centers for Medicare & Medicaid Services (CMS) – announced that states would have an additional year to use funding from the American Rescue Plan to both enhance and expand home- and community-based services. This is huge news as the federal government is committing to to further and prolonged support for Home-and-community-based services in general. 

Read more

Since 2016, when Congress passed the CURES Act which included a provision that requires all Medicaid-funded Personal Care Services and Home Health Care Services to implement Electronic Visit Verification, states have been working on getting a system set up.  However, as more and more people are required to use it, several issues have arisen. Issues such as responsibilities shifting to workers, privacy concerns, tension between clients and workers have been some of the problems. A impact study in 2021 found that the system tends to reduce the quality and quantity of care by making caregivers spend care time logging their activity, and by preventing them from attending to time-sensitive needs.

Read more

Self-Determination Network News:
June 2022

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

Family Caregiver Survey 

Are you a family caregiver who provides care to a loved one? 

Have you been unable to find direct care workers to hire? Are you picking up the pieces and filling in the gaps yourself? 

Are you employed full or part time, or not working to make sure your loved one had the care they need?

Have you worried what would happen if you suddenly became unable to do your caregiving duties because of physical injury or illness?

You are not alone.

We need your stories to show the policy makers the reality of many people’s day to day lives.

Please take the Survival Coalition Family Caregiver Survey before June 17, 2022. 

Survey results will be used to educate policy makers, shared with media outlets and advocates.

Call for Exhibitors 

The 2022 Self-Determination Conference will be held October 17-19 at the Kalahari Resort in Wisconsin Dells. Applications for exhibitors and microbusinesses are now being accepted. Microbusinesses have the unique opportunity to sell not only at the conference, but all year long. Visit www.allAmarket.org to sign up to sell merchandise year around. Click here to fill out the application to exhibit at the conference. Applications are due by July 20.

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 shined the spotlight on Kai. This resilient lady has recently learned that, through self-determination, she can build a support circle who will support and encourage her to be successful. Check out this month's Member Spotlight to get to know Kai.   

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:

• Gardens and jobs and ticks! Oh my!

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:

• Augmentative Alternative Communication Newsletter: Mike shared the newsletter from the Augmentative Alternative Communication Amplify program with us. Check it out and see what it's about. 
• Artificial Intelligence Guidance: Recently, two government agencies issued guidance on artificial intelligence. Learn about what the guidance explains. 
• EVV Reconsideration: The electronic visit verification process is using intense reconsideration. Read about why it's becoming a topic of heated debate. 
• Impact of COVID on People with Disabilities: When COVID hit, nearly every project funded by the Administration for Community Living's Institute on Disability, Independent Living, and Rehabilitation Research experienced delays and pivoted. Learn what grantees found.
• Assistive Technology State Plan: The Wisconsin Assistive Technology Advisory Council is looking for feedback on the 2021-2023 State AT Plan. Written feedback can be submitted until June 30.
• Accessibility Gains From the Pandemic: As the pandemic whines don't (or at least as things return to a new normal), many people with disabilities hope accessibility gains made during the last few years won't be forgotten. Find out what accommodations people hope will continue. 
• Watch: Many adults with disabilities often feel left hanging when they turn 18.A new documentary follows a young man with multiple physical disabilities as he navigates adulthood. Learn more and watch the film. 
• Digital Access Video Series: The U.S. Department of Education’s Office for Civil Rights (OCR) released a 20-part video series covering a variety of topics on digital access in education, including how people with disabilities use technology, applicable federal regulations, and identifying and remediating barriers to access. Check them out! 
• New Medicaid Waiver Rule: Federal officials say they are moving forward with implementing a Medicaid rules that standardizes what counts as home-and-community-based services for people with disabilities.  Read about what the rule entails. 
• Public Health Emergency Unwinding Resource: The Centers for Medicare & Medicaid Services recently released a new resource to help states understand and meet legal requirements for Medicaid and other programs when the public health emergency ends. Check it out! 
• Vaccine Information Website Accessibility: After many complaints about vaccine information websites being inaccessible for many people with disabilities, the Department of Justice came out with a fact sheet highlighting the guidance on website accessibility requirements and describes some of the actions taken to address inaccessibility of COVID vaccine websites. Learn what the fact sheet entails. 
• Core Standards for Information and Assistance in Self-Direction: A new resource has been developed to provide information to states regarding competencies and skills for professionals providing Information and Assistance in support of self-direction. Find out what this resource suggests. 
• Partners in Business: The Wisconsin Board for People with Developmental Disabilities is looking for businesses to partner with who are interested in hiring people with developmental and intellectual disabilities. Grantees are awarded up to $25,000 and technical support from the Board. Applications due June 17.

Upcoming Events

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

• Webinar: ADA Coordinator: Getting The Job Done: June 21, 1p.m. to 2:30p.m., Online
• Webinar: Pathways To Person-Centered Decision-Making And Alternatives To Guardianship: June 21, 2p.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.

Meet Kai. This resilient person has recently learned that, through self-determination, they can create their own support system with the people and resources they feel comfortable with. They're confident that, with the right supports, one day they will be able to live independently without any support. We’re so fortune to have them as a member of the Network.    

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

Kai shares with us that they are a high functioning adult with numerous diagnoses. They tell us that they have had a lot of experience in advocating for themself and the communities that they are a part of.

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

Kai became involved in self-determination for multiple reasons. They explain that a good chunk of their life was spent being treated as either a helpless child or an incompetent, lazy individual by people who believed that they knew what was best for them. These experiences have taught that the only one capable of knowing what is best for a person with a disability is the person themself. “I didn’t even know that self-determination was a thing until this past year, which speaks volumes to the importance of advocating and spreading this crucial information to others in the disability community,” they say.

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

Kai is excited that they learning to advocate for themself. They explain that they are taking necessary steps to build a system that will enable them to one day live independently, without any outside support. “It’ll take time but, with the right resources and supports, I’m confident that it will one day be a reality. My reality,” they exclaim!

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

Kai shares that the Aging and Disability Resource Center of Dane County is a great place for those who live with a disability to get services, support and referrals to other resources in the community.

What are some of your hobbies?

Kai has many hobbies. They love to read and write stories, watch television or film, play games, consume food or drink she has never tried before, listen to or play music, spend time with animals, hang out with other people, cook food, make baked goods, mix cocktails, exercise, spend time outside, volunteer in the community, go to shows or events and much more! “I’m always open to new things, which means that I’ve developed a lot of hobbies and interests in my twenty-some years of life,” they tell us.

***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.

Applications to Exhibit at the 2022 Self-Determination Conference are now open
Turning Vision into Reality! October 17-19, 2022