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Self-Determination Network
February 2022

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Register Now for Disability Advocacy Day of Change 

Registration is now open for Disability Advocacy Day of Change which will be held virtually on March 16, 2022. It's a event focused on connecting Disability Advocates with their legislators to talk about issues important to them. Attendees are expected to participate in the morning briefing and call their legislators in the afternoon. Registration deadline is March 8. Register today! 

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 Krystal. This writer has overcome a challenging childhood and has learned writing helps her express her feelings. Check out this month's Member Spotlight to get to know Krystal.   

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:

• Voting in Local Elections

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:

• Vaccine Mandates: Despite the Supreme Court blocking wider mandates, some support workers working with people with disabilities will still be required to be vaccinated. Read about what the Court decided. 
• High Hopes for Legislation: Disability advocates have high hopes that the Build Back Better Act will bring some much needed increases for Home-and-community-based services. Learn about what advocates are hoping. 
• Input Needed: The Office of Science and Technology is looking for input on how technologies are used, or could be used, to better community health, individual wellness, and health equity. Comments are due by February 28. 
• Workforce Strategies: As we all know, for years there has been a national shortage of direct care workers. In a recent report done by the Center for Health Care Strategies, four key recommended. Learn what they are. 
• 2020 Caregiving Study: The National Alliance for Caregiving released its report with the results of the Caregiving in the US 2020 study. Find out what the study found.
• Lack of Candidates: Despite over a million people with disabilities wanting to work, new research shows that a key barrier to hiring people with disabilities is the lack of candidates.  Read about other factors that contribute the lack of disability representation in the work place. 
• Wisconsin Youth Leadership Forum: The Wisconsin Youth Leadership Forum (YLF) is a week-long, overnight leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities. Applications due April 1.
•  Helpful Resource: The National Center for Advancing Person-Centered Practices and Systems compiled a list of helpful resources for person-centered practices and related activities to enhance work supporting people with disabilities and older adults with long-term services needs. Check it out! 
• Medical Diagnostic Equipment: A final rule has been issued related to standards for medical diagnostic equipment. Learn about what the rule requires.
• Input Needed: The Federal Communications Commission is seeking comments on an action to improve the clarity and accessible of visual Emergency Alert System messages to the public, particularly to people who are Deaf or hard of hearing. Comments due on March 28.  
  

Upcoming Events

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

• The Intersection Of Race And Disability: February 15, 1p.m. to 2:30p.m., Online 
• Webinar: Accessible Swimming Pools And Spas: March 3, 1:30p.m. to 3p.m., Online 
• Disability Advocacy Day Of Change: March 16, 10a.m. to 12p.m., Online 
• 2022 National Self-Direction Conference: April 11-12, Hyatt Regency Inner Harbor, Baltimore Maryland 
• Circles Of Life Conference: May 12-13, Virtual or the Holiday Inn in Stevens Point Wisconsin 
• Employment First Conference: May 24th, Kalahari Resort, Wisconsin Dells Wisconsin 

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.

• Electronic Filers: Comments may be filed electronically using the internet by accessing the ECFS: https://apps.fcc.gov/​ecfs/​.

• Paper Filers: Parties who choose to file by paper must file an original and one copy of each filing.

Meet Krystal. This writer has overcome a challenging childhood and has learned writing helps her express her feelings. She’s learning that by helping people solve problems she’s making a difference in her own way. She also shares some great organizational tips with us. We’re so fortune to have her as a member of the Network!

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

Krystal shares with us that she had a difficult upbringing, but she has cut toxic people out of her life in order to change who she once was and become the best version she could be.

She explains that writing has helped me through all my experiences. She has some brain damage around the areas of my brain for expression, in addition to trauma. When she is unable to express my words verbally, she is able to pick up a pen and write what she means. “When I'm unable to communicate, my anxiety increases, and I develop a panic attack. I've learned early on that if I brought a notebook and pen with me wherever I went, my anxiety decreased. I learned early on how important every word was and became sensitive to the pain others felt,” she says.

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

Krystal tells us that she’s new to the SD network, so she hasn’t been much involved yet. She hopes to become an active member once she learns more about advocacy and how things are run.

She shares with us that her psychologist actually encouraged her to look at ways to share her knowledge and experiences. “I've been helping people on Facebook, Instagram, Quora, and other places with some problems they were forced to endure. How I saw it was making the difference in my own way. My psychologist helped me see this could reach more people and help people connect with resources they need, that my experiences were just as valuable as anyone else's," ’she explains to us. 

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

Krystal is excited about a couple of things. She’s glad there has been more awareness for childhood intellectual and developmental disabilities. She didn't even know she had a developmental disability until she began intense therapy when she was 24. “This helped me understand why I felt a disconnection when I spoke versus when I wrote. While I can't have gotten my diagnosis sooner, I hope we all can continue to advocate to improve the future for the younger generations,” she explains.

She also is excited about being able to connect with senators and give input on upcoming bills. She intends on talking to her senator about the upcoming bills about mailing votes and medical assistance programs.

She also wanted to mention that she’s happy that NAMI (an organization that supports mental health)is now in Manitowoc. This will help the community heal.

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

Krystal shares lots of tips on how to keep organized:

• Make a chores list for every room in the household (weekly). Laminate it and you can reuse it to keep track of what needs to be cleaned each week.
• Get into a routine. Set alarms and stick to them, even though you don't want to. This helps create structure and an understanding of how your body functions.
• Make a checklist of what you need to get done each day. Don't overdo it. Be mindful of how much stress you can handle and make room for in case of emergencies, sick days, etc. She shares that she was taught goals need to be realistic, something you can manage to do, starting right now. Build yourself up slowly from there. If you become too stressed, go back down and build yourself up until you're ready to handle it.
• Color-code information or things associated with each other. This helps reinforce your memory. She finds it easier to remember the color of a folder where I put my bills versus what file number they're in.
• Label everything and make sure it's easy to read. This way you know where something goes and takes stress off your mind.
• Exercise 3-4 times weekly. She highly recommends yoga—it teaches you about learning patience, calming the mind, and how to be present at the moment. 
• Eat whole wheat, fresh fruits, and lots of green veggies. Drink plenty of water. Having a healthy body keeps you energized so you can endure more and heal faster.
• Make time for yourself every day. Set up a certain amount of time doing something to learn about yourself. 

What are some of your hobbies?

Krystal enjoys learning about any topic and will research topics she’s unfamiliar with. She enjoys reading a good story and doesn’t have a preference in the genre.  Her biggest passion is writing. 

She also enjoys doing activities such as listening to music (lately getting into operas, orchestras, and piano), learning how to paint and draw from a variety of artists online (they offer free classes at Michaels, which got her started), and volunteering at Painting Pathways a few times a month. She tells us that one of their upcoming projects will be painting inspiring quotes on stones to place around Manitowoc County.

***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.

The U.S. Access Board released a direct final rule related to its standards for accessible medical diagnostic equipment (MDE) covered by Section 510 of the Rehabilitation Act. The MDE Standards, originally published in 2017, established minimum technical criteria to ensure that medical diagnostic equipment, such as examination tables, weight scales, and imaging equipment, used by health care providers is accessible to and usable by individuals with disabilities.

Learn more

NCAPPS compiled a list of helpful resources for person-centered practices and related activities to enhance work supporting people with disabilities and older adults with long-term services needs.

Learn more about the resources and follow the links for more information.

Person-Centered Practices in the National Core Indicators Data. (November 2021). This resource provides examples of existing measures of outcomes of person-centered supports. It demonstrates how a state could use NCI data to understand person-centered outcomes of supports within their state with direct reference to the CMS home- and community-based settings.

Person-Centered Practice as Anchor and Beacon: Pandemic Wisdom from the NCAPPS Community. (March 2021) In the early days of the COVID-19 pandemic, NCAPPS reached out to its network to invite members to film brief videos responding to how we hold on to - and even expand - person-centered practices during a global pandemic. These videos are now featured as part of the NCAPPS Shorts collection. NCAPPS invited all participants to co-create a journal article exploring the themes that emerged from the videos. Twelve people - a mix of disabled and non-disabled NCAPPS staff and colleagues, came together to create the paper. The paper - and the process - was a very collaborative effort and is a reminder of the power of community and connection in advancing person-centered thinking, planning, and practice.

Removing Barriers to Healthcare: A New Era for House Calls? (November 2021) This resources provides ideas for health care professionals, leaders, states and community stakeholders to think about as we dream of a new, and more accessible normal in the era of COVID-19. 

Asset Mapping Toolkit. (June 2020) This toolkit is valuable for those working to connect in a meaningful way with the stakeholder network in their area. 

Five Competency Domains for Staff Who Facilitate Person-Centered Planning. (November 2020) Given the importance of choice and self-determination in any person-centered system, it is important that those who provide support understand and embrace the skills and values necessary to maximize the participants ability to make decisions and exercise agency in their lives.

Better Together: Brain Injury Survivors Building Community & Making a Difference. (October 2021) While it feels safe to assume that we all agree that leadership from and involvement by individuals with lived experience is a key ingredient to making a project successful it is all to easy to make the invite and then be confused as to why the project was not as successful as you had hoped. This webinar provided tangible advice and tools from people with lived experience about how to make participation on teams accessible for people with brain injuries. It provided great advice that is relevant for making any team or group process accessible to everyone involved.

Person-Centered Supports in Popular Culture. (August 2021) It can be important that all people get to see themselves reflected in media depictions, and unfortunately these haven’t always featured people with disabilities. 

Doing With, Not Doing For: What It Takes to Facilitate Person-Centered Planning. (January 2021) This webinar is a companion to the Five Competency Domains for Staff Who Facilitate Person-Centered Planning NCAPPS resource. The five competency domains are incredibly useful when seeking to hire or train facilitators in person-centered planning, developing quality standards, or helping people who access services and their caregivers learn about what they should expect from the planning process.

“Sticks and stones may break my bones, but words will never hurt me.” Many people have heard that saying as kids; however, we know that’s not true. Words hurt. In today’s world, we feel the need to put labels on people more than ever before. Racial labels, economic labels, sexuality labels, political labels… the list goes on and on. There are occasions when labeling people is necessary and helpful, but, more times than not, putting a label on someone causes hurtful feelings and an unpleasant stigma. While belonging to a minority is becoming more common in today’s society, being singled out is never fun.

A quick Google search revealed that one billion people live with a disability in the world. Yet, we are still considered a minority. For years, there has been a debate among the disability community as to how we identify ourselves as persons with disabilities and how we want others to address us when talking about our situation. Years ago, terms such as “handicapped,” “crippled,” “retard,” and “disabled” were used to describe persons with a disability.

In the 90s and early 2000s, the people first language began. It was meant to identify the person before the disability. For example, instead of saying a “disabled person,” you’d say a “person with a disability.”  Of course, thankfully, the world, “retard,” has slowly faded away when identifying someone who has an intellectual disability. For a few years, “cognitive disability” was used, but now “intellectual disability” has replaced it.

A few years ago, a new movement started going back to labeling people with disabilities as “disabled.” People with disabilities want to be considered a group in society and want to communicate that disability is a normal part of life. In other words, there’s nothing wrong with being “disabled.” People want the general population to know being “disabled” is okay. Many people with disabilities consider themselves part of a unique minority and are proud of it.

You may have noticed up to this point in the article that I’ve not said “disabled people.”  This was on purpose. Personally, I don’t like the term “disabled” used to describe anyone. When I think of the word “disabled,” I think of something that does not work. A disabled car, for an example. What does it portray when we use the same word to describe a broken-down vehicle that we do a person? Yes, I understand that we use adjectives to describe different things all the time, but, to me, “disabled” never should be used to describe a person. Nobody is completely “disabled.”  In my opinion, the word “disabled” has a negative connotation in today’s world. Regardless of the circumstances, I believe that every single person that’s born on this earth has the ability to do something.

I’m also not fond of the idea of moving away from people first language. While I understand the idea of being seen as collective group of people in society, I like to think people see the person I am rather than a “disabled person.” Do I identity as a person with a disability? Sure, and obviously it’s a huge part of my life. However, my disability doesn’t define the person I am. When this topic comes up, I think of a quote from a children’s book I read years ago.

“I’m a person who just happens to have a disability, but that doesn’t mean that I’m a disabled person.“
~Golden Daffodils by Marilyn Gould

I understand that some people may think this contradicts being a disability self-advocate, and I can’t argue that they’re wrong; however, being an advocate and preferring a certain label are two different things. I still strongly advocate for people with disabilities; I just prefer to be categorized as someone living with a disability rather than a disabled person.

Many, in fact most, people with disabilities have a different opinion about this issue. I totally respect that. I do understand why people want that commodity of being viewed as a group or culture. There have been lots of discussions about this in my disability Facebook groups, and there are so many different opinions about this. It’s one of those controversial topics that will be debated forever because there are no right answers. Stepping back, it’s unfortunate that we are forced to put labels on everyone for everything. In a perfect world, we’d have no labels and one’s name would be enough, but that’s not the case. We have to respect each other’s preferences and be open to learning about differences. As I always say, we only get one chance to live. We have to remember to make it count not only for ourselves, but for others which means doing our part in respecting each other’s preferences.

***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.

The Wisconsin Youth Leadership Forum (YLF) is a week-long, overnight leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities.

When/Where:

July 10 – 15, 2022 at Edgewood College in Madison, WI  

The Youth Leadership Forum is for:

• Students who show leadership potential by being active in their school and community
• Students who have a disability (physical, learning, cognitive, emotional, sensory, etc.)
• Wisconsin residents
• Students who are currently sophomores, juniors or seniors in high school 

Why Attend the Youth Leadership Forum:

• Learn more about college and career options
• Make connections with other young leaders in our state. 
• Meet your state legislator
• Connect with energetic staff and speakers from across the state
• Have fun at a dance and talent show and many other memories you’ll never forget!   

To Apply:

Complete the application by April 1, 2022. 

Contact Jenny Neugart at jennifer.neugart@ wisconsin.gov if you have any questions. 

YLF Applications 

More information

New research shows that almost half of businesses believe that the key barrier to hiring people with disabilities is the lack of candidates. However, misconceptions, lack of representation, and taboos continue to be a significant factor in recruitment policies. 

Read more