Self-Determination Network News:

October 2023

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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!

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:

• Martha Chambers
• Rosie Bartel
• Ed Kastern
• Elsa Diaz Bautista
• John Shaw
• Susan Borri

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?

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:

• "I want to inspire others."
• 2023 Self-Determination Conference Kick-Off Exhibits and Activities 
• 2023 Self-Determination Conference Wrap Up Video
• Check out my new eye gaze system

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:

• 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.  

Upcoming Events 

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

• Conference On Employment Of Transition-Age Youth With Disabilities: November 1st-2nd, Virtual
• Webinar: Accessible Bathing Rooms: November 2nd, 1:30p.m. to 3p.m., Virtual

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.

Bridging the Gap 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. The report includes detailed overviews of immigrants in this workforce and offers federal-level policy recommendations, including providing work authorizations and pathways to citizenship, to better support these workers and improve the long-term care sector.

Read report

Staying in hotels can be a harrowing experience for people with disabilities. When Julie Reiskin, tried to book an accessible room in Chicago, she got one with no roll-in shower. In D.C., the bed was too high. Throughout her travels, she has often had to go days without bathing and has had to sleep in her power wheelchair. This is a common experience for disabled people like her, many of whom say they regularly experience problems staying in hotels and using their amenities. “Every time we face discrimination, we have to calculate whether we’ll deal with it,” said Reiskin, a disability advocate in Denver. “You can’t deal with every problem, otherwise you’d be doing it all the time.” So some people with disabilities have taken on the job of being “testers.”

Read more

A bad day at work. A car accident. A bad breakup. A medical diagnosis. A court trial. There are millions of things that cause stress and anxiety. Stress is part of everyday life. There is also good stress like weddings and birth of children. Everyone handles stress differently. Some people thrive under stress; while others get physically ill. There are many different ways to deal with stress and anxiety. Everything from keeping it to one’s self to receiving in-patient psychiatric treatment. People with disabilities often deal with stress and anxiety just like everyone else—in fact, I would bet we have more stress and anxiety than the average person.

A few years ago, I wrote an entry about mental health. Back then, I was taking a small dose of a medication for anxiety and depression. Long story short, I ended up getting off that medication because it was causing issues with my muscle spasticity. At the time, my physical well being was more important than any mental health issues I had. I leaned on family and friends for emotional support and I was relatively fine for a few years.

“Find joy in the journey.” “Broken crayons still color.” Those are two of the signs that I have on the wall in my kitchen. I look at them every time I eat at my kitchen table. Anyone who knows me knows that I love cheesy signs, but those two saying have really resignated with me the past few months.

I won’t go into detail, but 2023 hasn’t been the best for my family. It seems like one thing after another has happened. Each of these things have put stress on the entire family. Unlike most adults my age, I don’t have a significant other to lean on during hard times. I of course have my family members, but they have their own thoughts and emotions to deal with. The last thing I wanted to do was to put my emotions on their plates.

At the end of April, I decided I needed to seek some help. I made an anonymous post on the Wisconsin Disability Connections Facebook page asking if anyone knew of a virtual counseling firm that billed Medicaid. I was referred to a website that had all sorts of resources. Through email and texting, I was able to get in touch with a virtual counseling firm that billed Medicaid. The owner was very accommodating and worked to set everything up through email. I was linked with a counselor and have been working with her since the beginning of May. Since it’s virtual, I type to her in the chat box using my eye gaze system. It’s a pretty unique situation, but I’m so thankful I found someone willing to work with me.

As it turns out, I probably should have reached out years ago as I’ve learned that I’ve had anxiety and depression for years. Having someone to talk with and sort things through with has really helped. I’ve learned lots of techniques and skills to help deal with the things that are happening in life. I’ve learned that my feelings are valid and it’s okay to have those feelings. I obviously won’t share everything we work on, but one of my weaknesses is self-compassion. Needing assistance with my basic needs combined with the caregiver crisis, I often feel like a burden to my family—especially when another situation is happening. My counselor is helping me understand that while, yes, I may feel like a burden, a lot of things are out of my control. My family wants to help me because they love me. We’re also working on “radical acceptance.” Basically, acceptance what is because I have no control over it. This has been especially helpful with the caregiver situation. Instead of blaming myself for needing care (and don’t have enough workers), I’m working on accepting it as just a fact and trying not to bring emotion into the situation.

Another thing that my counselor has been working with me on is initiation. I have a hard time asking people to do anything social because I hate obligating people. This is especially true as I’ve gotten older because I know my friends have families of their own. I feel like when I ask people to do anything I’m obligating them especially because they know that I don’t have many opportunities to socialize. I don’t want them to feel bad if they can’t. My counselor keeps reminding me that people will say no if they can’t. Albeit, not often, but I’m getting better at initiating social opportunities.

I’m also learning to reach out to friends when I need emotional support. Again, I hate bothering anyone, so my counselor has been challenging me to reach out to a couple friends to talk with. Of course, the couple friends I’ve reached out to have been understanding and very supportive. This has been really helpful. Very thankful to have such great friends!

Like most people, at first, I didn’t tell anyone I was in counseling because I was embarrassed. In fact, I didn’t even tell my mom I did it until I filled out forms and had to list her as my emergency contact. I thought people would see me as weak and needy when they found out that I am seeing a counselor; however, I’m slowly realizing and accepting it is actually kind of a strength. Admittedly, I don’t fully see it as something positive yet, but I’m seeing the benefits it has had. Most people don’t even notice (and that’s a good thing), but I’ve made great progress since May. Most importantly, I feel better!

I certainly hope that things will settle down a little bit for my family, but, as my mom always says “it’s our journey.” 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!

***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.

Learn more about soft launch and how to get ready.

Beginning January 1, 2024, the Wisconsin Department of Health Services (DHS) will require electronic visit verification (EVV) for home health care services (HHCS) and nurse supervisory visits using service code 99509. EVV is required by federal law. All states have to require EVV system use to maintain full federal Medicaid funding. Policy and training details will be shared in the coming months.

What is EVV?

EVV uses technology to make sure that members receive the services they need. Workers check in at the beginning and check out at the end of each visit using a mobile phone or tablet, landline phone or fixed voice over internet protocol (VoIP) phone, or small digital device.

What new service codes will require EVV?

How will HHCS EVV be implemented in Wisconsin?

For HHCS, DHS will follow the same two phases that were used with EVV for personal care services. These two phases, soft launch and hard launch, were designed to give providers and workers time to learn how to use their EVV system without financial consequences.

The first phase is called soft launch. During soft launch, EVV is required, but there are no financial consequences if EVV information is missing.

Soft launch is a time for DHS and providers to work together to overcome hurdles, to establish processes, and to troubleshoot problems. DHS recognizes that a new process takes time and is offering soft launch for providers, administrators, and workers to get real-world practice using their EVV system before it will affect claims. For the service codes listed above, soft launch will start on January 1, 2024.

The second phase is called hard launch. After hard launch, there will be financial consequences, like claim denial, when EVV information is missing or incomplete. Hard launch is required by the federal government for Wisconsin to continue receiving its full federal funding. DHS will give stakeholders at least three months’ notice before moving from soft launch to hard launch.

What can you do now to get ready for HHCS EVV soft launch on January 1, 2024?

Review the recording of the August HHCS EVV public forum presentation available on the EVV Public Forums webpage. The written presentation in English, Hmong, and Spanish is available. If you’d like another language, contact Wisconsin EVV Customer Care at     833-931-2035 Monday–Friday 7 a.m.–6 p.m. CT or vdxc.contactevv@wisconsin.gov.

An effort to federalize state-level adult support programs across the country, SSI is a means-tested program—there are financial requirements to be eligible. In the case of SSI, as of its last adjustment in 1989, enrollees cannot have savings of more than $2,000 as an individual or $3,000 as a family.  People who receive SSI are forced to live in poverty. However, that may be changing. Legislators are working on updating the limits.

Read more

Actor and disability rights advocate Selma Blair and President Biden recently celebrated the legacy of the Americans with Disabilities Act and the Rehabilitation Act. Blair, who was diagnosed with multiple sclerosis in 2018, walked together with Biden to a ceremony on the White House’s south lawn with her cane and her service dog.  The Rehabilitation Act of 1973 prohibits discrimination on the basis of disability in programs conducted by federal agencies, and the Americans with Disabilities Act of 1990 prevents discrimination against disabled people on everything from employment to parking to voting.

Watch remarks