News

Meet Stefanie. Growing up with a sibling with a disability shaped her outlook and passion in life. She runs an organization that supports families who have loved ones with disabilities. She enjoys making self-determination the center of peoples lives. She encourages people to set goals for the future. and tell your family and friends about them, so they can support you. We’re so fortune to have Stefanie as a member of the Self-Determination Network.

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

Stefanie grew up in Colorado and Wisconsin with a brother with autism. She shares that growing up with him really shaped her worldview about disability and belonging. She attended UW-Madison studied child development and then got a Masters Degree in Social Work. As a student intern, she heard about the Self-Determination Conference and got to attend for free. As her college career wrapped up, she learned about an incredible opportunity through the Waisman Center, where she could work with families like hers to help create a better future for their loved ones. “That work with families led to the creation of LOV-Dane, which became LOV Inc. (Living Our Visions Inclusively) in 2020. I've been the Executive Director of LOV Inc. for the last four years and feel very lucky to get to do work that I'm so passionate about. I love talking to families from different parts of the state and hearing about their hopes and dreams for their loved ones with disabilities. It is such a privilege to be able to be part of their journey while they make the best possible life for their loved one. At LOV Inc. our focus is on helping people figure out what they want in life and claim the power to make it happen,” she says.

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

While most of her work nowadays is with parents and siblings of people with disabilities, Stefanie explains that LOV Inc. has a major focus on self-determination for individuals with disabilities. Their staff team is part of the Living Well project and they spent the last few months reviewing the Rights Toolkit, which was a great starting point for many discussions. When they work with families or individuals with disabilities, they always make space for listening deeply to what is important to them in their life, and helping to navigate through any barriers they're experiencing. “I love being part of the SD Network to connect with other people doing similar work to us, and learning about new ideas people come up with,” she excitedly exclaims!

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

Stefanie explains that in recent years, LOV Inc has focused on diversity and equity, in addition to inclusion. This year, they've been able to expand their work with Spanish speaking families by hiring a Family Resource Specialist who is Latina. Alejandra Espejo has been connecting with families and helping them dream big for their child's future, including their child living a self-determined life. They've done a lot of education on supported decision making and rights, though these terms have different meanings to Spanish-speaking families. “Bringing the idea of self-determination to a new culture is challenging, but definitely worthwhile,” she says.

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

Stefanie thinks it is easier to be self-determined when you know what you want. She encourages people to set goals for your future, talk with close friends and family about what you want your life to look like, and then ask for the support you need to get there. She says, “If the future feels too far away, think about the life you want to have six months or a year from now, and find a way to take small steps toward that life. Many people are rediscovering who they are after COVID, so you're likely to find a lot of other explorers on your journey.”

What are some of your hobbies?

When she’s not busy working, Stefanie likes to do calm and soothing activities. She attends yoga classes at a studio near her house, work on jigsaw puzzles with family and connect with my friends. She’s looking forward to life after COVID when it will be easier to travel safely. There's a lot of places in the world that she still would like to see. London is probably at the top of her travel list right now, but she would be happy to even be able to visit friends in Washington state next year.

***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.

A $1.9 trillion bill that includes many different supports for home-and-community-based care and senior services was passed by the House of Representatives recently. The next stop is the Senate. Advocates are urging the Senate to follow suit. 

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A bill that would make a historic investment in Home-and-community-based services and other supports for people with disabilities is one step closer to becoming law. The House recently approved the "Build Back Better Act" which would invest millions in disability services.  The amount is much smaller than what Biden originally proposed, but, if passed, it'd be the largest amount ever to go to home-and-community-based services. The bill now goes to the Senate which is likely to be quite a hard bill to pass. 

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Why doesn't the disability community have more political power? There are over 61 million people living with a disability and yet  they still have little involvement in the political arena. There are several different factors that cause this. Things such as ableism and being forced to live in poverty to qualify for needed services attribute to this this. This article lays out several different factors and explains what needs to be done to fix this. 

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Advancements in video game technology have made it possible for people with disabilities and health conditions to be able to experience outdoor environments without having to leave their house.   At a time when visitation to national parks and other outdoor sites is booming, video games have become an unlikely assistive tool, a new pathway into nature tourism for people  with a disability or chronic illness.

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A research firm recently did a study on the affects Electronic Visit Verification ( EVV) has on care. It found that evv has a significant impact on care a person receives. Many interviews were conducted of participants and workers, and it revealed that the evv has major burdens on both parties. It also found that the system was built based on a poor understanding of how the services are given. 

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Self-Determination Network News:

November 2021

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

National Family Caregiver Month

November is National Family Caregiver Month. The Survival Coalition, the Wisconsin Aging Advocacy Network, and the Wisconsin Family Caregiver Alliance released this three minute video to listen to some of the challenges facing family caregivers across Wisconsin: See Us: Wisconsin's Invisible Family Caregivers. 

Without this essential support from dedicated family members, many older adults and people with disabilities would not be able to live in their own homes and would be forced into expensive Medicaid-funded institutional settings. We encourage you to share this video with your legislators and tell them your story. 

It was a great Self-Determination Conference again this year! We understand many people missed being able to attend in-person, but we were glad so many were able to join virtually. Let's keep the conversation going! Share your comments, questions, and ideas. Join the conversation!

We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:

• Vicky Gunderson
• Maria Nogueron
• Kate Rinehart
• Maureen Ryan
• Delores Sallis
• Jordan Anderson
• Sydney Badeau
• Kathryn Burish
• Mike Hipple

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 Olivia. This determined self-advocate doesn’t let anything stop her from achieving her goals. As director of an advocacy program for high school students, she helps others learn leadership and advocacy skills. Stop by this month's Member Spotlight to get to know Olivia.  

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:

• 2021 Self-Determination Conference:  Community Resources 
• 2021 Self-Determination Conference: All Abilities Market
• 2021 Self-Determination Conference: Block Party
• 2021 Self-Determination Conference: Keynote: Self-Determination Strong
• 2021 Self-Determination Conference: Diehard Awards 
• 2021 Self-Determination Conference: Keynote: Redefining Disability 
• 2021 Self-Determination Conference: Wrap Up
• A Time I Advocated for Myself 

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:

• Landmark Bill Introduced: New legislation was recently introduced that would create add-on plans for Medicare Home Health Benefit that would allow providers to mix in telehealth, transportation, personal care, and other services. Learn more about this new bill. 
• Benefits Increase: It was recently announced that Supplemental Security Income and Social Security will get a significant increase in 2022. Find out how much it will increase. 
• Workforce Study: A study was done about the workforce displacement and re-entry during the pandemic among direct care workers and workers other jobs. Find out what the study revealed.
• Technical Bulletins: The U.S. Access Board has released technical bulletins on accessibility to lavatories and sinks, washing machines and clothes dryers, and saunas and steam rooms. Read about what they specify
• Workforce Safety: Due to the nature of the job, home care workers are at increased risk for experiencing workplace violence. Learn how the Occupational Safety and Health Administration is doing to try to prevent this. 
• Federal Funding Increases Home Care Services: The Department of Health and Human Services unveiled a plan how to use funds to expand home-and-community-based services. Learn what they are planning to do. 
• Public Comment Needed on Voting Access Recommendations: The National Institute on Standards and Technology is seeking public comment on recommendations for addressing voting access for people with disabilities. Public comment closes November 22.
• Boost in Home-and-Community-Based Services: President Biden is moving forward with his push for the biggest increase to home-and-community-based services in 40 years. Learn what services this could improve.
• Transportation Grant Opportunity: The U.S. Department of Transportation’s Federal Transit Administration (FTA) announced the availability of $3.5 million in Fiscal Year 2021 competitive grant funding for projects that improve access to vital services for older adults and people with disabilities, and in low-income communities. Proposals due December 6.
• Family Caregiver Campaign: Due to the caregiver shortage across the country, family caregivers are overwhelmed and feeling the brunt of it. Find out what three policy changes advocates are  highlighting that would help family caregivers.
• Assistive Technology Survey: WisTech is looking ahead to 2022 and would like your input on what training topics you are interested in.  The survey closes December 10.
• Electronic Visit Verification Hard Launch Delayed: The Wisconsin Department of Health Services announced that they are delaying the hard launch of Electronic Visit Verification. Read more about the plan.  

Upcoming Events

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

• Webinar: Disaster Response And Disability: Approaches For Citizen Responders: November 17, 12pm.to 1p.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.