News

• Current mission statement: “To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”
• Proposed revised mission statement: “To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”

• Feedback on whether the proposed new mission statement reflects the goals and objectives as outlined in the NIH-Wide Strategic Plan for Fiscal Years 2021-2025.
• Suggestions for specific language that could be added to the proposed mission statement and why.
• Feedback on any specific language that could be removed from the proposed mission statement and why.

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. Indeed, since 1981 federal waivers offered states the option of providing home and community based services (HCBS) as an alternative to institutional care. As shown in this report, efforts have been successful, with nearly 60% of all LTSS spending now being on HCBS.

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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. They get to eat their favorite foods, sleep in their own beds, spend time with loved ones and pets, and stay more active. Though the program only serves four patients at a time, it may expand to help more than 300 patients a year by 2024.

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Self-Determination Network News:

September 2023

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

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!

National Voter Registration Day

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?

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:

• Self-Advocates on Asking for Help

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:

• 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.

Upcoming Events 

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

• Webinar: Promoting Person-Centered Communication And Care Coordination: September 13th, 11a.m. to 12p.m., Virtual
• National Voter Registration Day: September 19th, 6p.m., Virtual
• 2023 K.I.T.E. Conference: September 23rd, 9a.m. to 2p.m., Fox Valley Technical College, Appleton WI
• 2023 Self-Determination Conference: October 16th-18th, Kalahari Resort, Wisconsin Dells WI or Virtual
• Conference On Employment Of Transition-Age Youth With Disabilities: November 1st-2nd, 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.

There continues to be growing concerns over Family Care as two large for profit insurance companies buy it out. State officials say that nothing will change but advocates think otherwise. They worry about care hours being cut and services being denied to save money.

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Roughly 13% of Americans have a disability. It's widely known that this puts them at a disadvantage in terms of employment. People have to decide whether or not to self identify as having a disability. This article discusses the pros and cons of self identification of the employment process.

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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. Topics such as long-term care, benefits, education, Covid policies, voting access, ADA enforcement, and institutions and mandated treatment will be some of the issues disability advocates will be watching closely.

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Asking a question. Responding to a question. Talking with coworkers in a meeting. Conversing with friends and family over dinner. Adding your two cents during a argument. Telling someone a story. Asking for help with something. The list goes on and on. People verbally converse with others often hundreds of times per day. Verbal communication comes naturally for people. When was the last time you thought about the words that you were about to say? Unless you’re giving a presentation or speaking at an important meeting, you usually don’t think about every single word you say before speaking it. Most people often don’t even think about the words coming out of their mouth. Verbal communication is the norm and, we, as humans, are accustomed to listening to people verbally speak. What happens when a person is unable to communicate verbally? People who have certain disabilities often find this really challenging and frustrating. Whether a person has a hearing impairment and communicates through sign language or if a person has a speech impairment and uses an augmentative device to speak, the general population doesn’t know how to talk with people who use alternative methods of communication.

If you have read my past entries, you likely know that my disability affects my ability to verbally speak. I’m able to make some sounds and form some words, but the average person would not understand my speech. My family and friends who are around me more can understand often understand what I’m saying because they’ve been around me for so long. I don’t remember exactly when, but therapists started having me use very simple picture boards to communicate when I was very little. When I started Early Childhood when I was three years old, they started working with me on an augmentative communication device. Growing up, I had many different types of devices. I’ll be honest. I’m not the model augmentative communication device user. There are a couple different parts to this. First and foremost, until just a few years ago, mounts for communication devices used to be huge and very cumbersome. Through college, my devices were on huge trays and mounts that inhibited my independence. I couldn’t pull up to tables or desks when it was on. Second, most people who use comm devices use icons and sequences to form sentences. Despite multiple therapists attempting to get me to do so, I’ve personally never liked using sequences. I’ve always felt like I it was better to type everything out rather than using sequences and preprogrammed phrases. That’s just me. It wasn’t until about six or seven years ago that we realized that I could use the communication app on my cell phone. This changed my life. My dad is pretty handy and before I moved to Oshkosh, he created a mount for my cell phone using a footplate from an old manual wheelchair. When I learned that my communication app could be downloaded onto my phone, I was so psyched. I actually now use two different communication apps. One I use when I have to preprogram things for presentations I do, and the other is basically a fancy word prediction program that I use for spontaneous communication. It’s amazing having these apps on my phone where I can easily access them.

Having said all that, I still feel communication is by far my biggest barrier. 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. Not only are there obvious stereotypes associated with being not able to communicate in the “normal way,” it’s also incredibly frustrating.

My communication apps are great; however, the honest fact is that it does take me substantially longer than the average conversation time to get out what I want to say. It’s been that way my entire life and I don’t see that changing anytime soon. When I’m having a one-on-one conversation with someone who knows me, it’s usually ok. The person knows to wait. It’s a personal preference for each communication device user, but I don’t mind if the person watches me type and tries to guess what I’m going to say—it saves me time and energy. However, some users prefer that people not guess. It’s truly an individual choice. Even if the person knows me, he/she will often walk away mid-conversation while I’m typing and start a conversation with someone else. That’s incredibly frustrating. Depending on the situation, when I start a conversation with someone who doesn’t know me well, I often explain that it does take me longer to communicate and kindly ask for their patience. Sometimes, it works, but, often, it doesn’t.  For meetings, if I can preprogram anything (like I often program a short introduction), I do. Spontaneous communication is tricky in meetings. Often, by the time I finish typing my thought about something, the meeting has moved on to a different topic. Depending on the situation, I either speak my thought and apologize for the delay or, oftentimes, I just don’t share it because it’d interrupt the flow of the meeting.

Virtual meetings are unique. Like I do for in-person meetings, I look at the agenda and preprogram what I can ahead of time. For spontaneous communication, I find it easier if I type my thoughts in the chat box and have someone relay it verbally to the group. Not only am I a little faster typing in the chat using my eye gaze system than I am typing in the app on my phone, it also doesn’t interrupt the meeting as much.  Do I still miss out on a lot of opportunities to share my thoughts because I can’t verbally speak? Absolutely, but this is the best way I can think of to effectively communicate. Some people who use communication devices will have each word speak as they type and hold up the meeting until they finish their thought. Again, it’s personal preference. Personally, as ironic as it sounds, I can’t stand having people—especially a large group—wait for me. Having that pressure makes my muscles extremely tense making it harder to type.  I also don’t believe that it’s right to hold up people’s valuable time in professional meetings just so I can speak my mind. It’s my self-consciousness, I guess.

Over the years, I’ve gotten better about asserting myself in certain situations. If I’m comfortable with the group, I’m more apt to express my thoughts even if the discussion about the topic has ended, but, admittedly, I usually have a lot more I want to say. Not having the ability to verbally speak is the most frustrating aspect of my disability. All I can do is continue to put myself out there and make sure my voice is heard!

***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.

Family Careis designed to keep low-income disabled adults and the elderly out of nursing homes and enable them to live in their own homes. It provides the kind of care that many people will come to need at some point. Advocates are worried after two for-profit insurance companies are on track to take over the program. They worry that needed equipment and services will be denied.

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Meet 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. He encourages people to think about how they can work around the challenges that they face and show others that there are many different ways of doing things. We’re so fortune to have him as a member of the Network.

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

Brandon is a freelance content creator and a communications assistant from Watertown. He tells us that throughout his life, people keep assuming what he can and can't do. He always has/had to prove he can do it, but in his own way. “Having one leg and a speech impairment can be hard at times but I work around the challenges,” he says.

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

Brandon wants to encourage others that they can do stuff, but in their own ways. “I want to show that, even though we are “different” and have “different abilities,” it doesn’t mean we can do stuff as “normal” people do; we just do things in our own “different” way,” he explains.

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

Some exciting news for Brandon is that he applied for first apartment. He has always lived with his parents.  He shares that he needs to challenge himself even more by doing things on his own and living on his own. “Of course, I’m excited to move out, so I have more freedom to do my own stuff I’m my own way,” he enthusiastically replies when asked if he was looking forward to moving out.

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

Brandon encourages people to look at their challenges in life, and think it through how can they work around them--show people you can do it in your own way!

What are some of your hobbies?

For Brandon, his “hobbies” are also part of his jobs. He enjoys doing camera work and graphic design. He also occasionally enjoys playing wrestling video games.

***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.