News
Self-Determination Network News:
November 2022
Connect | Share |Learn | http://sdnetworkwi.org/
Let's Keep the Conversation Going: The 2022 Self-Determination Conference
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.
Congratulations to the 2022 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:
- Ramsey Lee
- Emily Savage
- Jenny Felty
- Lisa Schneider
- Lisa Sobczyk
Let's Talk About Solutions to the Caregiver Crisis
During the 2022 Self-Determination Conference, InControl Wisconsin led a session about the Wisconsin Direct Workforce Crisis. We talked about “what if, what then” situations we all face as caregivers and people with disabilities that are brought on by no available paid workers. Everyone’s situation is different. Everyone’s story is important.
We want to hear from more people about their “what if, what then” scenarios. More importantly, we want you to feel open to share your ideas with each other about how to make things better.
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 Kate. This avid Packers fan uses self-determination to live life to the fullest. She has been involved in all sorts of advocacy activities, and she loves connecting with others and hearing their stories. Check out this month's Member Spotlight to get to know Kate.
Who should we shine the spotlight on next?
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:
- 2022 Self-Determination Conference Wrap Up
- Human Rights: #3 Have privacy
- Human Rights: #4: Get a Job
- Human Rights #5: Vote
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:
- Input Needed on National Strategy to Support Family Caregivers: The National Strategy to Support Family Caregivers is intended to serve as a roadmap for better recognizing and supporting family and kinship caregivers, backgrounds, and caregiving situations. A public comment period is open until November 30.
- Digital Accessibility Challenges: Despite a surge in hiring of digital accessibility specialists, as of 2022, only 3% of the Internet is fully accessible to people with disabilities. Read about some of the challenges of making the Internet accessible.
- Assessing Worker Needs and Shortages in Rural Areas: Increasing wages and benefits, improving training and career development options, and adding flexibility to state Medicaid waiver programs to pay family caregivers for providing personal care services are just some of the things that would help with improving the personal care aide workforce in rural areas. Learn about more would help with the shortage.
- Accessibility in the Apostle Islands: Sightseeing the Apostle Islands is often challenging for people who have mobility impairments. Find out what a nonprofit group is doing to try to make it more accessible.
- Caregiver Shortage Impact on the Economy: The caregiver shortage crisis impacts every field of the economy. Read about how the crisis is affecting the economy.
- People with Disabilities Reap Benefits of Remote Work: Adults with disabilities rarely have been employed at such a high rate as now. This is in large part thanks to the pandemic. Learn why more people are having success finding remote employment.
- Service Animal Survey: The Southwest ADA Center is conducting a study on the experiences of employed people with disabilities using service animals and other assistance animals at work. Take the survey.
- Challenging Situation: As the direct care worker shortage continues, more and more people are being affected. Learn about one couple's struggle to get in-home caregivers.
- Climate Change Effects: As climate-related disasters become more common and severe, some feel that people with disabilities are being left out of the planning process. Read what a recent report found.
- Caregiver Report: ANCOR has measured the impact of the direct support workforce crisis on community providers and their ability to provide high-quality community-based services for people with intellectual and developmental disabilities (I/DD). Learn what the research found.
- The Pandemic Continues to Shape Medicaid Priorities: After substantial gains in 2020, Medicaid enrollment is expected to decline in 2020 due to the COVID public health emergency ending Take a look at the examination of the changes to Medicaid taking place across the country.
- Ageism and Ableism: Nine in 10 older adults experience everyday ageism, yet it is rarely talked about. Learn about how ageism is deeply embedded in the health care system.
- Independent Living Survey: The Independent Living Council of Wisconsin is looking for public input from consumers, stakeholders, and community partners is needed to describe the challenges and barriers persons with disabilities face. Take the survey!
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Veterans With Disabilities: An Overview Of Veteran Affairs (VA) Resources Supporting Independence And Inclusion: November 15, 1p.m. to 2:30p.m., Online
Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? Contact Stacy Ellingen.
The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.
WISCONSIN DEPARTMENT OF HEALTH SERVICE: Statewide Plan for Independent Living (SPIL) Priorities Survey
By SD Network, 2022-11-02
What's your story? Tell us a little bit about yourself.
Kate is a twenty-four-seven Green Bay Packer fan for life! She shares that in 1990, a virus caused her brain to swell, loss of memory, balance, sense of direction, etc… “It made my so-called normal life of almost forty years a real mess,” she tells us! Though it’s been a lot of hard work, her doctor fortunately sent her to Curative Connections Brain Injury and Wellness Day Program in Green Bay, WI when she was out of rehabilitation. She uses a wheelchair, so she says she rolls! She’s thankful to have a sound mind and able to make a difference. She lives outside of Denmark, which is about only fifteen minutes east side of Green Bay. She’s very fortunate to be able to live at home with one of her sisters and they help each other!
What does Self-Determination mean to you? Why is it important?
To Kate, self-determination means using information and friends to allow one to become more independent. She explains that online and on Facebook you can meet many individuals and hear their stories. It’s important to have a good support system. A few years ago, she was invited to join Partners in Policy Making! Transportation is an issue for many, but with covid it was online, so she didn’t need to travel. It was an awesome learning experience for her! She was interested in what was going on with politics and politicians that affect people with disabilities, but had no clue she could make a difference!
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Kate shares that attending the Self-Determination Conferences in WI Dells has also opened her ability to meet more people and have awesome adventures! Her very favorite is finding out about My Team Triumph! “Before covid hit, they were at the conference, and I was able to ride one of the three wheeled chairs – I was hooked immediately,” she explains! Since then, she has been the captain of several teams of angels running in the Bellin Run and Packer 5k in Green Bay, WI. “It is so amazing being right next to the runners who are trying to improve their personal times, being high-fived and encouraged to continue! When you depend on a wheelchair and mostly feel short, these runners make you feel your full height,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Kate explains that it’s easy to think “someone else will take care of everything.” She’s so happy she became involved in caring about what is going on in Wisconsin politics. It has really changed her life! Voting has always been important to her, but now she understands how important it is to do your research on the candidates and if they are aware of people with disabilities. https://www.VOTE411.org, gives you the information to make wise choices, and compare candidates that are going to make a difference or not make a difference in your district. She says, “there are other sources as well, get involved, you don’t have run for office, but you will find whatever interests you and want to make a difference – you can…”
What are some of your hobbies?
Kate explains that she that found after she was less able to do physical things all the time, she had an amazing gift for writing rhyming poetry! She continues to bring a great deal of happiness to many. She also enjoys making greeting cards on her computer. She likes going on Facebook to keep up with some of my nieces and nephews who live in different states. “I have only a hundred friends and these people all are important to me, I don’t just friend anyone,” she tells us.
She also enjoys going outside with her power wheelchair, planting flowers, and feeding the cats that live in our machine shed! Volunteering is near and dear to her heart! She volunteers at Curative Connections and, for about thirty years with friends and family members, she has enjoyed ringing Bells for the Salvation Army. “I enjoy every day and love to have fun 😉 I feel it is very important to give back and be thankful… Live well,” she exclaims!
***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.
Packing boxes. Cooking dinner. Studying for an exam. Stretching before a race. Researching an item before you purchase it. There are millions of ways that people prepare for different things. Many times, we don’t even realize we do it—it’s habit. Some people feel the need to prepare for things more than others. Some people can just wing things and have them come off seamlessly. Not always, but usually preparedness and organization go hand-in-hand. Most of the time, if someone is an organized person, they also feel the need to be prepared.
“I won’t agree to do this many things again,” I said to my mom in early September as I was preparing for the Self-Determination Conference. She laughed and shook her head because she knows that’s not true. She knows how much I absolutely love doing presentations and talking with others. Like in many years past, I was asked to participate in many different things at the conference this year. It started in June or July. People sporadically began reaching out to me asking if I would like to do different things. I always say yes, but there’s a caveat—I need to know what I need to present on as soon as possible. While people do their best to get me the information in a reasonable amount of time, it’s usually not an ideal length of time for me. While I understand that most people can kind of wing speeches and presentations without putting an enormous amount of time in it, that’s not the case for me.
As I’ve explained in previous entries, I use an app on my phone called Proloque2Go to communicate. I’ll be honest—I don’t use it right. I never have used communication devices the “correct” way. I’ve never been a fan of using symbols and sequences to communicate. I’ve always preferred to type everything out that I want to say. I believe it’s not only faster, but it’s also a much more accurate way of communicating—rather than using preprogrammed phrases, I type out exactly what I want to say. Having said that, typing everything out does take some time. For spontaneously communicating, it’s usually fine because the person who I’m talking with usually know to wait. However, for long presentations, obviously typing everything out spontaneously, wouldn’t work. It’d take way too long, and I wouldn’t be able to cover hardly any of the information that I needed to. To solve this conundrum, when I have presentations, meetings, or anything that requires immediate response (that has to be semi lengthy responses), I preprogram things on to buttons.
Now, when I say preprogram, most people have no idea what that entails. Before I explain how I do it, I have to tell you that the way I do it is probably very unconventional, but I’ve found it’s what works best for me. When I first learn that I have a presentation or something, I immediately ask what I’m presenting about or for an agenda (if it’s a meeting). I then begin typing what I want to say out on a Word document on my computer using my eye gaze system. Depending on how long of a presentation it is, this often takes days. A 30-minute presentation is about seven pages typed just to give you an idea. Once I have the first draft typed out, I copy all of it into an email and email it to myself. I then create a page in Proloque2Go for the specific event. I then start creating buttons on the page. I go back and forth between Proloque2Go and the email app on my phone—I use my double-jointed thumb to select and copy each paragraph from the email and paste it in Proloque2Go. Each paragraph is a separate button and, depending on what type of presentation it is, I label each button. I then have to go into options for every single button, and select “speak immediately” (the default option is to have the text displayed in the display box in the app and that would add more things to push while I’m presenting). In addition to programming buttons for each paragraph, I put a blank button between each button that has content. I do this because I’m apted to hit the wrong button if they’re right next to each other, so I put blank buttons in as spacers to help me be more accurate. While I don’t have to label or change the options for blank buttons, I still have to program a space for the button in order for a blank spot to appear.
After I get all of the paragraphs programmed, I then have to play each button to make sure it sounds right. Many times, I miss a word or something isn’t pronounced right on the app (for example, in order to have it say my last name, Ellingen, right, I have to spell it ell in jen). When that happens, I have to go into the specific button, copy the text, paste it into the Notes app, correct whatever it is, re copy the corrected text, and paste it back into the button in Proloque2Go. The process continues until each and every button sounds right. Depending If it’s a long presentation, I label the buttons using the alphabet. After I’m done programming the speech, using the Word document I originally created, I label each paragraph with the correlating letter of the button. I print out the labeled document and put it in the binder, so while I’m presenting, I follow it and know which letter I’m on.
You may see why I like to be prepared. I actually have no choice. I have to in order to be able to do many things. I had 138 buttons programmed with content for this year’s conference which meant, because of the spacer buttons, I programmed over 300 buttons total! It was a lot this year. Ideally, I would have had more time to prepare, but I understand that when you’re collaborating with people, things can’t happen as fast as you’d like. It was a pretty stressful few weeks, but I managed to get everything done.
While I would love to be able to just wing a presentation or a meeting, I can’t. Luckily, for me, I’m an overly organized person. As I’ve discussed in previous entries, I don’t procrastinate on anything. I have to be almost overly prepared for everything in life—it’s just who I am. Most tasks take me at least twice as long to complete, so time is a crucial component in my life. I have to consider the extra time I need in all aspects of life and try to be as prepared as I can for whatever life has in store!
***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.
Nine in 10 older adults experience everyday ageism, yet it is rarely talked about. Ageism is deeply embedded in health care, with nearly 20% of Americans aged 50 and older saying they have experienced age-related discrimination in health care settings, which can result in inappropriate or inadequate care.
KAISAR FAMILY FOUNDATION: How the Pandemic Continues to Shape Medicaid Priorities: Results from an Annual Medicaid Budget Survey for State Fiscal Years 2022 and 2023
By SD Network, 2022-10-29
After steep gains since 2020, state Medicaid agencies expect Medicaid enrollment to begin to decline in FY 2023, following the expiration of the COVID-19 public health emergency, which most states assumed would occur during FY 2023. This report provides an in-depth examination of the changes taking place in Medicaid programs across the country.
WISCONSIN DEPARTMENT OF HEALTH SERVICE: Request for Public Comment: HCBS Benchmarks for Nonresidential Provider Settings
By SD Network, 2022-10-26
The Wisconsin Department of Health Services (DHS) is opening a 30-day public comment period on its updated benchmarks for nonresidential provider settings. This public comment period is in accordance with federal requirements.
Find more information about the updated benchmarks on the DHS website.
Give your input
The materials available for public comment are the Benchmark Guides for Home and Community-Based Services Settings Rule: Nonresidential Provider Settings. They show the measures DHS uses to determine if nonresidential provider settings are in compliance with federal rules.
Public comment is an opportunity to support or rebut Wisconsin’s updated benchmarks for nonresidential provider settings.
Submit your comments by November 28, 2022, in one of the following ways:
- Email your comments to DHS at dhsltcpubliccomment@dhs.wisconsin.gov
-
Mail your written comments to:
Division of Medicaid Services
Bureau of Quality Oversight
Attn: Public Comments – Benchmarks for Nonresidential Provider Settings
PO Box 309
Madison, WI 53701-0309
ANCOR has measured the impact of the direct support workforce crisis on community providers and their ability to provide high-quality community-based services for people with intellectual and developmental disabilities (I/DD). Although our research indicates that this was a significant challenge long before the COVID-19 pandemic, data from the 2022 State of America’s Direct Support Workforce Crisis confirms that these problems have not only been amplified by the pandemic but are also at the root of service and program closures, service launch delays, struggles adhering to quality standards and more. The results of our 2022 survey reveal that this workforce emergency is now to the point of denying access to services and further threatening the quality of services for people with I/DD.
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:
- Ramsey Lee
- Emily Savage
- Jenny Felty
- Lisa Schneider
- Lisa Sobczyk
PBS.ORG: ‘We’re on our own.’ How people with disabilities are left out of climate planning
By SD Network, 2022-10-22
As climate-related disasters become more common and more severe, most countries in the world are “neglecting their obligations to respect, protect, and fulfill the rights of persons with disabilities in their responses to the climate crisis,” according to a report from the Disability Inclusive Climate Action Research Program.