SD Network

Category: Network News


96

Self-Determination Network News:

February 2024

Connect Share |Learn http://sdnetworkwi.org

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Please Help InControl Wisconsin's Caring Across Cultures Project

Are you someone who hires direct care workers?  Are you a family member of someone who receives support from a direct care worker?  Are you a direct care worker?  If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them.  We will give you questions to answer, to make it easier for you.

Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)

Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.

What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.

You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.

Here is a document to help you record your own video or audio.  This document will also tell you how to send us your finished recording: CLICK HERE

Need some help?

  • You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.

  • Are you coming to Disability Advocacy Day, State Capital in Madison, March 15?  We will have recording equipment on site.

Ready to Do This?

Disability Advocacy Day 2024

Registration is open for Disability Advocacy Day 2024! Join us in Madison on Wednesday March 20th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights! It's free to attend, but you must register by March 1st! Register now!

2024 Self-Determination Conference Call for Presenters

Are you interested in presenting at the 2024 Self-Determination Conference?  Session proposals for are now being accepted for Tuesday, October 22nd and Wednesday, October 23rd, 2024. This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined life. Proposals due by on May 10th. Submit an application today!

128

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 Chad. This rock climbing fanatic volunteers his time doing all sorts of advocacy things. Check out this month's Member Spotlight to get to know Chad.   

Who should we shine the spotlight on next?

128 Stacy’s Journal







"While I don’t like being seen as overly dramatic sometimes, I’ve learned to trust my gut when it comes to my health. My uncanny instinct has saved my life more than once!"

In this month's journal entry, Stacy talks about her keen instincts when it comes to her health. She discusses why she's hyper vigilant about her health. Do you find yourself being overly concerned about your health?







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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 so by clicking the red Subscribe button on any of the video pages).





196

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

  • New Report: Kaiser Family Foundation has published a new report that provides insight into one important measure of unmet need for home and community-based services across states. Learn what the report reveals.
  • Competitive Rock Climber Proves People with Disabilities Can do Anything: For this competitive athlete, rock climbing is just a sport. Find out how this climber excels despite having limitations.
  • Long-Range Plan: The Administration for Community Living has released its 2024-2028 Long-Range Plan for the National Institute on Disability, Independent Living and Rehabilitation Research. Learn what it includes.
  • New Enrollment Process for Providers: Beginning in September 2024, the Wisconsin Department of Health Services will require all adult long-term care waiver service providers to enroll with Wisconsin Medicaid through the ForwardHealth Portal. Read more about this process.
  • Medicaid Issues to Watch: In 2024, many issues are at play that will affect Medicaid coverage, financing, and access. Read about what else to watch for.
  • Proposed Changes to the Census Dropped: After strong pushback from the disability community, the U.S. Census Bureau is no longer moving forward with a proposal that could have decreased the estimated disability rates in the country. Learn about what the proposal would have asked.
  • Businesses Continue to Fall Short: A recent survey shows that businesses continue to fall short when it comes to meeting the needs of customers with disabilities. Find out what many advocates think that the main problem is.
  • Inclusive Town: The town of Union Grove banded together behind a common goal - to give everyone an equal chance by hiring as many people with disabilities as possible. Read about what the town has done.
  • Self-Direction Inventory: Applied Self-Direction conducted an extensive national survey of self-direction programs in the United States. Check out the many interesting statistics in the report. 

128 Upcoming Events 

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

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. 

196

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.


96

Self-Determination Network News:

January 2024

Connect Share |Learn http://sdnetworkwi.org

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Disability Advocacy Day 2024

Save the date for the 2024 Disability Advocacy Day on Wednesday March 20th in Madison. It's on a Wednesday this year instead of the usual Tuesday. We'll be sending out information about details and registration in a few weeks. We hope to see you there!

Voting Lunch and Learns

2024 is a huge election year, and the Wisconsin Disability Vote Coalition has you covered! They will be holding virtual Lunch and Learns throughout the year about various voting topics. The first one (register here) is going to be Tuesday January 23rd from 12p.m. to 12:45p.m. It will be about registration and absentee voting. Another Lunch and Learn (register here) will be held on Tuesday February 6th from 12p.m. to 12:45p.m., and the topic will be voting rights and local elections matter. Make sure to keep up to date on voting issues by attending these events.

128

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 Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. Check out this month's Member Spotlight to get to know Brett.   

Who should we shine the spotlight on next?

128 Stacy’s Journal






"As I get older, I’m slowly realizing that there’s more to life than always trying to prove that you’re successful."

In this month's entry, Stacy shares about she's trying to be more intentional about what she agrees to do. She explains how she often takes on more than she should because she has a hard time turning down opportunities down.

Do you have a hard time saying no to opportunities?






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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 so by clicking the red Subscribe button on any of the video pages).





196

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

  • Tools to Help Strengthen HCBS: Recently, the Centers for Medicare & Medicaid Services released new tools that will help improve access for millions who receive home and community-based services through Medicaid. Learn about what these tools will help.
  • Concerns over the the Census Questioning: The U.S. Census Bureau is considering changing the way it asks people about disabilities and advocates are concerned. Find out why advocates are concerned.
  • Investment in Services: Recently, the Biden-Harris Administration announced actions and new data that will help expand home-and-community-based services.  Read about what actions are being taken.
  • Guide to Accessible Travel: Traveling is generally fun and exciting, but it also can be stressful. This is especially true for many people who have disabilities. Check out this guide to accessible travel.
  • Request for Comment: The Administration for Community Living is announcing an opportunity for the public to comment on the data collection requirements for the ACL Evidence-Based Falls Prevention Program Information Collection. Comments are due February 12th.
  • Be your Best Self-Advocate: You are your own best advocate. Take a look at some great tips for being an advocate.
  • Youth Leadership Forum: YLF is a week-long forum for high school with disabilities who want to learn more about leadership, self-advocacy skills, and career awareness. Share this opportunity with students who would benefit!
  • What's Behind the Shortage: The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. Watch this news clip about what are the causes of the caregiver shortage.
  • ABLE Limit Increase: Starting January 1st, people with disabilities are able to save more money in ABLE accounts which are accounts that allow them to save without jeopardizing their government benefits. Find out how much it increased.
  • Digital Accessibility Guidelines: The Office of Management and Budget recently released updated guidance requiring federal agencies to improve their digital accessibility for people with disabilities. Learn about what the guidelines are. 

128 Upcoming Events 

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

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. 

196

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.

 


96

Self-Determination Network News:

December 2023

Connect Share |Learn http://sdnetworkwi.org

Resources for Employing Caregivers 

It's no secret that there has been a caregiver shortage for many years. This crisis affects almost everyone in one way or another. Hiring and retaining workers is challenging--especially for people who hiring their own workers. Applied Self-Directed published a report entitled, Bridging the Gap: Strengthening Insights Into Strengthening the Self-Directed Workforce. Included in the report were a few great appendices about finding and keeping workers. 

Appendix l gives many great examples of where people can try to find workers. It lists different websites that people can post ads on, and it also includes examples of places where people can post ads and flyers in their community. It also gives examples of how people could use word of mouth to recruit caregivers.

In Appendix lll, it talks about many easy ways that people can show appreciation for their workers. It lists many examples of acts of gratitude that don't take a lot of work and don't cost very much. Giving gratitude and having small perks for employees often helps keep them longer.

128

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 Randi. This advocate extraordinaire believes that everyone has a right to make choices and encourages people to keep asking questions. Check out this month's Member Spotlight to get to know Randi.   

Who should we shine the spotlight on next?

128 Stacy’s Journal





"People who have disabilities are no different. We encounter many things that are out of our control—in fact, I’d argue that we face more things that are out of our control than the average person does."

In this month's entry, Stacy discusses how many people with disabilities simply have no control over several things that people without disabilities never think about. What unique things in your life are out of your control?





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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 so by clicking the red Subscribe button on any of the video pages).





Recordings from the 2023 Self-Determination Conference 

Video recordings of all the sessions from the 2023 Self-Determination Conference are now available on the Self-Determination Channel on YouTube. The pre-conference sessions as well as the Diehard award presentations are also available. Check out the presentations that you may have missed at the conference!

196

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

  • Impact of Climate Change: As the planet warms scientists say natural disasters are becoming more destructive and more frequent, and the data shows certain communities are hit harder than others Watch an interview about how it's affecting people with disabilities.
  • Voting Barriers: A recent survey found that people with disabilities continue to face challenges voting. Learn about what some of the barriers are.
  • Unique Duo: Neighbors in Greenfield don't let having Down Syndrome stop them from living successful lives. Read about these inspiring young women.
  • The CARE Act: Organizations advocating for older adults and people with disabilities are hoping to build new support for a bill that would require Wisconsin hospitals to communicate with a patient's family caregivers. Find out more about this bill.
  • Take Survey: The University of Kansas is seeking participants to take the 2023 National Survey on Health and Disability. Take the survey today!
  • Actress Calls for Sub-Minimum Wage to End: Actress Selma Blair recently said sub-minimum wage is "out of touch and wrong." Listen to the interview.
  • Updated Web Content Accessibility Guidelines: Updated Web Content Accessibility Guidelines were recently released. Find out what is new.
  • America's Long-Term Care Crisis: Long-term care systems are in crisis. Learn about steps that could be taken to improve the systems and ease the strain on the federal budget.
  • Proclamation: December 1st was International Day of Persons with Disabilities. Read the proclamation from the White House to learn about what this day is meant to celebrate.
  • Request for Public Comment:  The Department of Health Services (DHS) has revised the Wisconsin Medicaid Standards for Certified 1-2 Bed Adult Family Homes The public comment period is open until January 31st.
  • New Version of Disaster Course: FEMA released an updated version of its training course on Including People with Disabilities in Disaster Operations. Learn more about this course.

128 Upcoming Events 

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

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. 

196

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.

 


96

Self-Determination Network News:

November 2023

Connect Share |Learn http://sdnetworkwi.org

National Family Caregiver Month

November is National Family Caregiver Month. We know that many people are caregivers for family members and we thank you. Legislators need to hear your story. We encourage you to contact your legislators and share your experience. The Survival Coalition put together a fact sheet that you can use when you do so. 

Remembering Terry Lynch, a Wisconsin Self-Direction Pioneer

Terry Lynch, one of the earliest pre-IRIS self-direction practitioners and activists in Wisconsin, passed away on September 10. He was one of the founders of In Control Wisconsin and the author of But I Don’t Want Eldercare. Terry was a trainer, speaker and consultant on self-direction and workforce issues. To read Lynn Breedlove’s reflections on Terry’s contributions to the self-direction movement and the lessons we can learn from his book and his life, click here.

128

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 Jen. This volleyball fanatic has faced some challenges which have kept her off the court in recent years, but she has a goal of playing again one day. Check out this month's Member Spotlight to get to know Jen.   

Who should we shine the spotlight on next?

128 Stacy’s Journal




"People have various reactions to change. Some people have no problem adjusting to change; while others have a difficult time. Like everyone else, people with disabilities have various reactions to change. Generally speaking, many of us are so routine based, so often we have a hard time adjusting to change."



In this month's entry, Stacy discusses how simple adjustments can be life-changing for some people. She talks about how people react to adjustments differently. Do you react to change well or do you have a hard time adjusting.




196

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

  • Celebrating 25 Years of ADRCs: The Wisconsin Department of Health Services is celebrating the 25th anniversary of aging and disability resource centers (ADRCs) helping older adults and people with disabilities in our state to thrive. Learn about what ADRCs do.
  • Inclusive TV: Read about how one television network is making strides in including performers who have disabilities.
  • Disability Employment: As Disability Employment Awareness Month came to an end in October, it's obvious that most people with disabilities want to work, but there are many different barriers that make it challenging. Learn about some of the problems people are facing.
  • Wisconsin Wayfinder: The Wisconsin Department of Health Services launched a new service that will transform the support structure for families of children with delays, disabilities, special health care needs, or mental health conditions.  Find out how it works.
  • 60th Anniversary of the DD Act:  In late October, we celebrated the 60th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act. Find out what this act does.
  • Sheltered Workshops Violation: According to the Justice Department, segregating people with disabilities in employment and other day programs may violate their rights under the Americans with Disabilities Act.  Learn why.
  • Proclamation: Read the proclamation from the White House for National Family Caregiver Month.
  • New Accessibility Features in Google Maps: Google recently released many new accessibility features to make it easier for people with disabilities. Find out what these include.
  • Medicaid Transportation Guide: CMS recently released a Medicaid Transportation Coverage Guide, which highlights existing policies and includes new policies to address issues such as extended wait times and long-distance trips. Check out this great resource.

128 Upcoming Events 

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

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. 

196

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.


96

Self-Determination Network News:

October 2023

Connect Share |Learn http://sdnetworkwi.org

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It was another great Self-Determination Conference this year. We enjoyed seeing many of you in-person, and we're glad that people who couldn't make it could join virtually. What was your favorite part about it?  Let's keep the conversation going! Share your comments, questions, and ideas. Join the conversation!

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Congratulations to the 2023 Diehard Award Winners! 

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:

128

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 Melanie. This young lady is determined not to let her limitations stop her from living a successful life. She has many goals and she’s determined to meet them. Check out this month's Member Spotlight to get to know Melanie.   

Who should we shine the spotlight on next?

128 Stacy’s Journal


"Everyone has some amount of stress and anxiety. It’s life. It’s perfectly okay to reach out for a little help if life gets to be too much. Do it for yourself, so you can find joy in your journey!'

In this month's entry, Stacy opens up about getting some help with her mental health and how beneficial it has been.


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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • New Home Care Program: Some patients can now get the same care at home as they would at the hospital. The Home-Based Hospital Care program, which began in July, allows patients to stay in a more comfortable place. Learn more about this program.
  • Push for More Services and Supports in the Community:  Every year, Medicaid spends more than $200 billion on long-term services and supports (LTSS) for people with physical, intellectual, and developmental disabilities. Historically, over 80% of these funds were spent on institutional care in long-term care facilities. But, over the past thirty-plus years, in response to escalating LTSS expenditures and consumer preferences, both the federal and state governments have pushed to deliver more LTSS in the home and community. Read more about the efforts being done to make more services available.
  • Input Needed:  The National Institutes of Health (NIH) has issued a Request for Information (RFI) inviting feedback on a proposed update to its mission statement. Comments due November 24th.
  • Advocating for Marriage Equality: Disability advocates are staging a mass commitment ceremony on the National Mall in an effort to raise awareness about marriage penalties. Find out what advocates want.
  • Annual Direct Care Workforce Report:  Review a new annual snapshot of the direct care workforce, including its demographics, occupational roles, job quality challenges, and projected job openings.
  • Inclusive Farm: A farm in Fredonia hires people with disabilities. Find out what "farm fellows" do.
  • Inclusive Outdoors Recreation: People with disabilities often face obstacles or unwelcoming environments when they try to use outdoor spaces. Read about the growing movement that is actively working to challenge the barriers and promote inclusivity in outdoor recreation.
  • Disability as a Health Disparity: The National Institutes of Health recently designated people with disabilities as a population with health disparities. Find out what this means.
  • Self-driving Vehicles: Driverless vehicles are becoming more and more popular. Read about some of the pros and cons of these vehicles for people with disabilities.
  • 50th Anniversary of the Rehabilitation Act: The 50th anniversary of the Rehabilitation Act was in late September. Learn what this Act is responsible for.
  • Family Care Concerns Continue: Wisconsin disability advocates continue to worry as for-profit companies buy two of the four nonprofit organizations that run Family Care. Find out why advocates are concerned.
  • Airline Making Improvements: Following an investigation by the federal government after a complaint by a disability advocate, United Airlines has agreed to improve the experience for passengers who use wheelchairs. Read about what they're doing.
  • Resource Line: The Disability Information and Access Line (DIAL) is an easy way to get connected to the services you need. Learn about this resource,
  • Proclamation: October is National Disability Employment Awareness Month. Find out what this month recognizes.
  • Aging Caregiver Resources: CMS released a set of resources addressing the needs of adults with intellectual and developmental disabilities living with, and receiving care from, aging parents or guardians. Check them out.
  • Watch: Actor and disability rights advocate Selma Blair and President Biden recently celebrated the legacy of the Americans with Disabilities Act and the Rehabilitation Act. Watch their remarks.
  • Effort to Update Limits:  People who receive SSI are forced to live in poverty. However, read about how that may be changing.
  • EVV for Home Health Care Services:  Beginning January 1, 2024, the Wisconsin Department of Health Services will require electronic visit verification (EVV) for home health care services and nurse supervisory visits. Learn what this means.
  • Hotel Struggles:  Staying in hotels can be a harrowing experience for people with disabilities. Find out about some of the hurdles people encounter.
  • Enhancing Support for Immigrant Caregivers: A new report discusses the crucial role that immigrant direct care workers play in the U.S. healthcare system, particularly in long-term care for older adults and people with disabilities. Find out what it revealed.  

128 Upcoming Events 

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

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. 

196

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.

 


96

Self-Determination Network News:

September 2023

Connect Share |Learn http://sdnetworkwi.org

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Registration Closes Friday!

Have you registered for the 2023 Wisconsin Self-Determination Conference yet? It will be held October 16th-18th. Join us in-person at the Kalahari Resort in Wisconsin Dells or virtually for this year’s conference. The theme is Be Curious: Explore the Possibilities. Check out the brochure and website for more information.  Registration closes this Friday September 15th. Register today!

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National Voter Registration Day

Join the Wisconsin Disability Vote Coalition on the high seas of civic engagement for an unforgettable virtual event on National Voter Registration Day (which also happens to be National Talk Like a Pirate Day)! Mark your calendars for 6 p.m. Tuesday, September 19 and prepare to embark on an adventure that will empower you to seize your freedom to vote.  We can promise fun and information, but we can't promise that we'll slow down on the pirate puns!  Register here!
What to Expect:
Stories on the importance of voting
Answers to your voter registration questions
Create and share fun content about voter registration
Sessions to text friends with info
Opportunities to win merch and prizes
For more information, check out the event page on Facebook.

128

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 Brandon. This camera enthusiast is a freelance content creator and also works as a communications assistant at a local television station. He’s determined not to let people tell him what he can and cannot do. Check out this month's Member Spotlight to get to know Brandon.   

Who should we shine the spotlight on next?

128 Stacy’s Journal

"Sometimes, people ask me if I could have one ability that I don’t have, what would it be? Without hesitation, I always say the ability to verbally speak. This surprises people, but it’s a no-brainer for me. "
In this month's entry, Stacy talks about how frustrating it is not being able to verbally speak. Can you or someone you know relate?

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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • Web and Mobile App Accessibility: The Department of Justice has issued a notice of proposed rulemaking under Title II of the Americans with Disabilities Act that aims to improve web and mobile apps access for people with disabilities. Public comments on this rule are due October 4th.
  • Amtrak Improving Accessibility: Amtrak is seeking approval from the Federal Railroad Administration to make their new, intercity trains more accessible than current regulations mandate. Learn about what they're planning to do.
  • Training for Family Caregivers: A new proposal from the Centers for Medicare & Medicaid Services addresses this often-lamented failure to support family, friends and neighbors who care for frail, ill and disabled older adults. Read about what this would include.
  • Adaptive Product Line: Walmart is introducing a new adaptive product line. Find out what types of products it includes.
  • HCBS Webpage: The Wisconsin Department of Health Services has created a new webpage about home and community-based services. It has results and plans from the grantees. Check it out.
  • Food Truck Employs People of All Abilities: The Aging & Disability Resource Center of Brown County has launched a new accessible food truck with Grounded Cafe to offer an opportunity for people of every ability to get involved with food service. Read about some of the accommodations the truck has.
  • ADA Transition Plan: The Wisconsin Department of Transportation has published its 2023 Americans with Disabilities Act Transition Plan. There is a public comment period open through Wednesday, September 27th.
  • Industries Hiring: It's widely known that people with disabilities are significantly less likely to get a job than the general population. However, the new tight job market has created new opportunities for people with disabilities.  Find out what industries are hiring people with disabilities.
  • ABLE Accounts:  Wisconsin is currently the only state that doesn't have an ABLE program, which provides a tax-free savings account for people with disabilities. Read about a new bill that would a new bill that would allow Wisconsin to create an ABLE program.
  • Family Care Concerns: Advocates are worried after two for-profit insurance companies are on track to take over the Family Care. Learn why there's such concern.
  • Key Issues in 2024 Election:  There's a presidential election coming up in 2024, and, while it seems a little early to think about, there are some key issues voters with disabilities will be raising.   Learn what some of the hot issues will be.
  • Self Identification Debate: Job seekers who have disabilities often need to decide whether or not to disclose they have some challenges. Read about some of the pros and cons of self Identification during the employment process.

128 Upcoming Events 

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

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. 

196

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.

 


96

Self-Determination Network News:

August 2023

Connect Share |Learn http://sdnetworkwi.org

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Don't Forget to Register!

Have you registered for the 2023 Wisconsin Self-Determination Conference yet? It will be held October 16th-18th Join us in-person at the Kalahari Resort in Wisconsin Dells or virtually for this year’s conference. The theme is Be Curious: Explore the Possibilities. Check out the brochure and website for more information. Register today!

Share Your Caregiver Crisis Story with your Legislators 

Recently, Madison Magazine published an in-depth article "Wisconsin's Caregiver crisis: What happens when no one shows up?" In the article, people with disabilities and family members talk about the daily challenges they face because they do not have enough workers to hire, what has happened when they don't have enough workers, and their fears about the future. Do these people's stories match your lived experience? If so, you are not alone. People in every corner of Wisconsin are having the same struggles every day, day after day. If this story is your story, email your legislator a link to the article and say, "That's Me." Include a few sentences about how the care worker shortage is impacting you, your family, your future.

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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 Richard. When he’s not working at the Department of Revenue, he’s either advocating on the Arc board or participating in one of his many hobbies. Check out this month's Member Spotlight to get to know Richard.   

Who should we shine the spotlight on next?

128 Stacy’s Journal





"In my personal opinion, the word pride means proud. When you have pride in something, you feel proud of whatever it is. Am I proud of the fact that I have a significant disability? Unlike many people, I can’t bring myself to say I am. In fact, I can firmly say that I am not."

In this month's journal entry, Stacy discusses her complicated feelings about the concept of disability pride. Everyone has varying feelings and that's ok. What is your take on it?





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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • Accessible Housing: Despite 26% of the US population having a disability, less than 5% of housing is accessible and less than 1% is wheelchair accessible. Learn about several ideas which came from a hearing attended by both political parties that would help with the shortage.
  • Creating Accessible Transportation: Late in July, the Vice President and the Secretary of Transportation held a roundtable discussion about accessible transportation. Read about the meeting.
  • Improving Online Access to State and Local Services: Ahead of the 33rd anniversary of the Americans with Disabilities Acts, the Biden-Harris Administration announced a new proposal that would improve online access to state and local services for people who have various limitations Find out what the proposal includes.
  • Accessible Changing Tables: For many families in Wisconsin, it's nearly impossible to leave the house for an extended length of time because of the lack of accessible adult changing stations in public places.  Read about a new program that would require all public buildings to have adult changing stations.
  • Airline to Add Braille to Planes Interior: Finding your seat on airplane is challenging for anyone, but for people who have visual impairments, it's usually impossible to find their seat independently.  Read about how one airline is planning to install Braille to signs inside planes.
  • UpliftWI: The Wisconsin Department of Health Services announced a new phone line is now available allowing all Wisconsinites to share their successes and challenges with a peer who will listen and offer support. Find out more about this program.
  • Partners in Policymaking: 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 due October 2nd.
  • SPARKS Grants:  Do you have an idea to make your community a better place for people with disabilities?  Organize your grassroots group and apply for funding to help make it happen! Individuals with developmental disabilities and family members may apply. Applications due September 1st. Learn more and apply today!
  • Mandate to Make Planes More Accessible: The Department of Transportation is in the process of finalizing regulations to require many new commercial airplanes to more accessible for people with disabilities. Read about how new regulations would require some planes to have large enough restrooms that for a person with a disability and an attendant.
  • Right-of-Way Guidelines: Pedestrians with disabilities throughout the United States continue to face major challenges in travel because many sidewalks, crosswalks, and other pedestrian facilities are inaccessible. Recently, the U.S. Access Board addressed this inequity by issuing a final rule on accessibility guidelines for pedestrian facilities in the public right-of-way. Learn what these guidelines are.
  • WisCaregiver Connections: The Wisconsin Department of Health Services recently invested in an online training program for 10,000 people to become certified direct care professionals. Find out more about this program.
  • Call for Proposals
    Applied Self-Direction is seeking conference sessions that focus on best practices and innovations related to self-direction. We strongly encourage a range of perspectives including people and families who self-direct, state program staff, Financial Management Services providers, direct care workers, support brokers, and policymakers. Proposals due October 11th.

128 Upcoming Events 

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

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. 

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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.

 

Self-Determination Network News: July 2023


By SD Network, 2023-07-22


96

Self-Determination Network News:

July 2023

Connect Share |Learn http://sdnetworkwi.org


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Registration is Now Open 

Registration is now open for the 2023 Wisconsin Self-Determination Conference which will be held October 16th-18th. Join us in-person at the Kalahari Resort in Wisconsin Dells or virtually for this year’s conference. The theme is Be Curious: Explore the Possibilities. Check out the brochure and website for more information. Early bird registration ends August 15th. Register today!

128

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 Kevin. This music-loving father loves watching his son succeed. He not only advocates with his son, but, as the director of an IRIS Consultant Agency, he also works with others with disabilities to ensure they have the support to be able to live and work in the community. Check out this month's Member Spotlight to get to know Kevin.   

Who should we shine the spotlight on next?

128 Stacy’s Journal




"There needs to be a balance between having the skills or traits needed to fulfill the requirements of the particular opportunity and taking life circumstances into consideration."

In this month's journal entry, Stacy discusses how affirmative action affects people with disabilities and her view on it. Have you benefited from it?









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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • Resources for Older Caregivers: The Centers for Medicare & Medicaid Services recently released a collection of resources designed to support state Medicaid and partner agencies in developing the supports and services being delivered to adults with I/DD and their aging caregivers. Take a look at these and pass them on to others who may find them beneficial.
  • Employment Funding Opportunity: The Social Security Administration has announced a new funding opportunity for conducting interventional research to support its programs. They are seeking applicants in five key areas related to barriers to employment. Applications are due July 31st.
  • Concerns over Medicaid Disenrollment: According to data, more than a million Medicaid beneficiaries have been disenrolled. Learn about one of the main reasons this is.
  • CrossFit Class: A gym in Waterford has started a CrossFit class for people with different abilities. Find out more about the class.
  • Digital Health Technologies: A new survey shows that older adults plan to use more assistive health-related technologies as they age. Read about what else the survey revealed.
  • Accessible Hiking Trails: Hiking is becoming a very popular summer activity.  Take a look at this guide to accessible hiking trails in the U.S.
  • Technology Accessibility in the Workplace: In today's world, technology plays a major role in almost every facet of every company. As we know, technology also enables people who have different abilities to be able to be productive in the workplace. Learn why it's crucial that employers make sure that technology equipment is accessible to all employees.
  • Independent Living Program Pilot: The Wisconsin Department of Health Services is initiating an Independent Living Supports Pilot program, aimed at providing resources to eligible residents, enabling them to live independently at home. Find out more about this program.
  • Family Care and Partnership Renewal Survey: Wisconsin Department of Health Services is in the process of renewing the Family Care and Partnership waivers. They are seeking input about these programs. Please take this survey by August 1st.
  • New Program at Green Bay Airport: Austin Straubel Airport in Green Bay recently became the second airport in Wisconsin to participate in the Hidden Disabilities Sunshine Network which is a program that provides discreet assistance to people who have hidden disabilities. Read about how the program works.
  • Listen Now: Wisconsin Public Radio recently did an interview with two disability service providers about how the community serves people with disabilities Listen to what they suggest would help communities better serve people with disabilities.
  • Talk of Updating SSI Limits: The Supplemental Security Income (SSI) program for low-income elderly and disabled people has the strictest savings limits of any federal program. Eligibility is limited to people who have only $2,000 (or $3,000 for couples). Read about how most people feel this isn't enough for beneficiaries to weather an emergency or provide stability.
  • Journey of a Lifetime: A young woman from Mazomanie who wasn't supposed survive through infancy is on a journey of a lifetime. Learn about her quest to compete in Miss Wheelchair America.

128 Upcoming Events 

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

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. 

196

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.

 

Self-Determination Network News: June 2023


By SD Network, 2023-06-12


96

Self-Determination Network News:

June 2023

Connect Share |Learn http://sdnetworkwi.org


State Budget Advocacy: There is Still Time to Advocate!

This week, the legislative's Joint Finance Committee is making decisions on several budget items that can impact people with disabilities. Tomorrow, June 15th, the committee will be deciding on the Department of Health Services budget. This budget includes includes many disability programs and issues including Family Care, IRIS, caregiver wages, Guardianship Support Center, and Adult Protective Services. We encourage people to call or email your legislators and let them know what priorities you want in the state budget. 


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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 Jenny. After a tragic accident changed her life, this amazing lady made the decision to be a person who aspires to live life to the fullest. She has committed her life to raising awareness for people living with paralysis and neurological disorders. Check out this month's Member Spotlight to get to know Jenny.   

Who should we shine the spotlight on next?

128 Stacy’s Journal



"Everyone has small quirks that they do to be comfortable. Most of the time, people don’t even realize that they have them, but, when you rely on others for physical assistance, those quirks need to be communicated."



In this month's entry, Stacy talks about some of the unique quirks she has and explains how they help her to be as independent as possible. What unique preferences do you have?








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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • Wheelchair Elevation:  The Centers for Medicare and Medicaid Services recently announced that Medicare will now cover seat elevation devices for power wheelchairs. Learn more about this decision.
  • Health Data Report: Reliable health data is important to supporting people with intellectual and developmental disabilities. Being counted is a health equity and civil rights issue. Although data collection about people with disabilities generally has improved in recent decades, there is still not enough information on how many people with I/DD live in the U.S., how healthy they are, and what things affect their health. Take a look at the report that the Administration for Community Living put together from a summit they put together in 2022 focused on health equity, remaining gaps, and priorities for the future.
  • The Wait for Services: More than half a million Americans with intellectual and developmental disabilities are currently waiting for government funding for long-term care in their homes. Find out what some states are doing to clear waitlists.
  • Advocates Advocate for Significant Pay Increases for Caregivers: It's no secret that Wisconsin advocates for people with disabilities and the elderly have been tiredlessly advocating for better pay for caregivers.  Learn what advocates are asking for in the state budget.
  • Inclusive Stock Photos: Generally, stock photos often don't include people with disabilities. Read about how the Consumer Product Safety Commission is working to change that.
  • Public Comment Needed on Diagnostic Equipment: Medical diagnostic care is essential to everyone, including people with disabilities, and often requires people to transfer onto diagnostic equipment. The U.S. Access Board has issued a notice of proposed rulemaking on standards for accessible medical diagnostic equipment. Public comments are due July 24th.
  • Project SEARCH: Project SEARCH provides vocational training for people with disabilities. Learn about how the program helps high school students transition into the workforce.
  • Google Maps are More Accessible: With a minor change, Google is making it more obvious to users whether businesses and other public places are accessible to people with disabilities.  Find out what small change made this possible.
  • WisCaregiver Connection Workforce Platform: In partnership with UW-Green Bay, the Wisconsin Department of Heath Services have developed a training program to help 10,000 caregivers become certified direct care professionals. They also have developed a new workforce platform that will connect employers and job seekers. Find out more about these new programs.
  • Protype of Wheelchair Seat on Planes: Delta has introduced a prototype of a new seat that would allow airlines to let passengers to stay in their wheelchairs in the cabin. Learn more about the design.
     

128 Upcoming Events 

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

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. 

196

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.

 

Self-Determination Network News: May 2023


By SD Network, 2023-05-14


96

Self-Determination Network News:

May 2023

Connect Share |Learn http://sdnetworkwi.org


 The Ongoing Caregiver Crisis 

In late April, the Survival Coalition put on a press event about how the ongoing caregiver caregiver crisis is really affecting people's lives. The results of 2023 caregiver survey that the Survival Coalition recently did will be released very soon, and the preliminary results indicate the impact of the care worker shortage has significantly increased since the initial survey was conducted last year. We encourage people to keep sharing their caregiver stories with legislators and remind them that caregiving needs to be a priority in the budget.


128

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 David. This advocate extraordinaire continues to serve his community in any way he can. When he’s not busy serving on one of the many boards he’s on, he’s appraising antiques or officiating weddings. Check out this month's Member Spotlight to get to know David.   

Who should we shine the spotlight on next?

128 Stacy’s Journal

"Especially when things get hard and seem impossible, thinking and talking about my past helps me realize how far I’ve come and ignites my ambition to keep fighting.'"

In this month's entry, as her class reunion approaches, Stacy takes time to reflect on her primary education experience. She shares a how she was able to fit in amongst her peers and how some key moments shaped her life! What kind of experience did you have in school? Are you where you thought you'd be today?


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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 so by clicking the red Subscribe button on any of the video pages).

196

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

  • Five Resources to Advocate for Workforce: Momentum for policy change at the state level continues to grow dramatically for the direct care workforce. Check out these resources to help people advocate for the direct care workforce.
  • Fact Sheet: Recently, the Biden administration announced the most comprehensive set of actions an administration has taken to improve care and support caregivers (including family caregivers). Learn about some of the directives to expand affordable and high-quality care and provide support for caregivers.
  • Care Workforce Not Keeping Pace: Research continues to show that the size of the home care workforce isn't keeping pace with home-and-community-based services. Read about how improving access to HCBS will require not only expanded insurance coverage but also new workforce investment.
  • Supporting People with Invisible Disabilities: Invisible disabilities, as the name suggests, are disabilities that are not immediately apparent to others. Learn about ways leaders can support people who have invisible disabilities.
  • Ending of the Public Health Emergency: The public health emergency from COVID-19 has now ended. Learn about some of the implications this may have on Medicaid HCBS programs, including workforce challenges and reductions in access to care.
  • Wisconsintes with Disabilities Could Help Workforce Shortage: People with disabilities in Wisconsin could help solve the labor shortage, but recruitment efforts often disregard the population. Find out why there's such a mismatch between employers and people with disabilities.
  • Input Needed: The Centers for Medicare & Medicaid Services published a proposed rule, Ensuring Access to Medicaid Services (Access Rule) to improve access to — and quality of — Medicaid services and promote health equity across the Medicaid program. The proposed rule applies to all Medicaid services, including the home and community-based services (HCBS) that are vital to people with disabilities and older adults. Comments must be received by July 3.
  • The Influence of Disability in a Changing World:  Change is inevitable yet within the arc of the disability narrative we have seen profound transformations happening over years starting with civil rights to the evolution of business, representation, and a revolution through a broad cultural zeitgeist that is redefining our understanding of the disability experience. Read this interesting reflection.
  • Report on Equity and Access: A new report examines current research on equity, inclusion, and access for the 61+ million individuals in the United States with disabilities in key social determinants of health including employment, transportation, healthcare, and education. Learn what it revealed.
  • New Funding to Support Family Caregivers: The Administration for Community Living recently announced a new funding opportunity for an initiative to support family caregivers. Applications are June 26th.
  • Advisory on Loneliness and Isolation: A new advisory notes that older adults and people with disabilities are among the populations with the highest numbers of loneliness and isolation. Find out what recommendations are suggested.
  • Fall Internship Opportunity: The American Association of People with Disabilities is seeking applicants for their fall internship program. The internship program places students and recent graduates in a paid program that builds leadership skills, explores career opportunities, and enriches connections in the disability community. Applications are due June 8lth.
  • Bipartisan Bill Would Eliminate Derogatory Language: A new bipartisan bill is going around that would eliminate "outdated and derogatory" language on intellectual disability from federal law. Learn more about this bill.
  • Bill Focusing on Strengthening Direct Care Workforce: A group of lawmakers has introduced legislation that not only focuses on improving conditions for professional caregivers, but family caregivers as well.  Find out what this bill would do.
  • Improving Air Travel: For many years, flying has been challenging for many people with disabilities. Read about a bill that would track damaged mobile aids and start research on designing planes that would allow people to stay in their mobility devices while flying.
  • Addressing Disability Discrimination in Health Care: Two years after the feds suggested that they were going to update regulations to prevent health care providers from discriminating against people with disabilities, but advocates are still waiting for that to happen. Read about how advocates are pressuring lawmakers to urgently update regulations related to the Rehabilitation Act.
     

128 Upcoming Events 

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

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. 

196

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.

 

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