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Self-Determination Network News:

November/December 2020

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

Your Input is Needed! 

Wisconsin policymakers are right now making critical decisions about funding and changes to disability programs. The state budget is the most important piece of legislation that impacts people’s lives. Survival Coalition is gathering people’s stories and thoughts about the most pressing needs in our state to help policymakers understand disability issues. We encourage you to complete this survey to help bring the most important issues to the forefront.  

This year's Self-Determination Conference was a little different, but we were glad so many people could join virtually.   Let's keep the conversation going! Share your comments, questions, and ideas.

Join the conversation!

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:

• Pam Runge Malin
• Erica Andres
• Pam Jenson
• Monica and Francisco Javier Lopez Sr.
• Ashley Mathy
• Philip Temme
• Cindy Bentley

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:

• 2020 Self-Determination Conference: Welcome and Keynote: Celebrating our Diverse Community
• 2020 Self-Determination Conference: Diehard Awards
• 2020 Self-Determination Conference: Keynote: Envisioning the Future
• 2020 Self-Determination Conference Overview
• My Vision for the Future
• My favorite Thanksgiving food and what I'm thankful for

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

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.

In November, we shined the spotlight on Anastasia. This talented artist doesn’t let her limitations get in the way of pursuing her dreams. Stop by last month's Member Spotlight to get to know Anastasia.

This month, we're shining the spotlight on Emily. When this self-advocate isn't busy planning conferences and volunteering, she enjoys hiking and biking. Stop by this month's Member Spotlight to get to know more about Emily. 

Who should we shine the spotlight on next?

Stacy’s Journal

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

• Home-and-Community-Based Services Resources: The quality of life of persons living with all types of disabilities is closely tied to the services they receive in home- and community-based settings.  Check out the new briefs on quality measures for HCBS. 
• Accessible Housing Struggles: For many people with disabilities, finding accessible housing is very challenging. Read about how one woman in Wisconsin is taking matters into her own hands. 
• COVID Dashboard: The Wisconsin Department of Health Services (DHS) has developed several dashboards to provide information regarding how the COVID-19 pandemic is affecting members and participants in the adult long-term care programs. Learn what the statistics show. 
• Assistive Technology Channel: Wisconsin’s Assistive Technology Advisory Council (AT Council) has launched a YouTube channel in order to share videos of WisTech assistive technology trainings. Check it out and see if any of of the videos may be useful to you. 
• Social Security Increase: Beginning in 2021, Supplemental Social Security and other benefits will increase. Find out how much the increase will be. 
• Great Resource: Parents of children with disabilities are facing difficult decisions about how to keep their children safe and learning.  Check out this "Back to SCOL" decision guide developed by Stanford University to help parents decide what is best for their child. 
• Emergency Preparedness Trainings: The Health and Human Services Office of Assistant Secretary for Preparedness and Response created a new online training on older adults and disasters. Learn about what this training includes. 
• Seeking Inventive Solutions: The Administration for Community Living is looking for creative solutions to help with better the direct care workforce and improve the quality of home-and-community-based services. Learn more about this competitive challenge. 
• Prioritizing Services: Medicaid officials are pushing states to move forward with efforts to rebalance the long-term care services for people with disabilities to favor home-and-community-based services rather than institutions. Read about a toolkit to to help providers and people who receive services make sure they're doing everything possible. 
• Biannual Report: The Wisconsin Board for People with Developmental Disabilities released its biannual report highlighting what they've done to support people with disabilities. Learn about some of the things they've done. 
• Guardianship Reform Briefing: The national Working Interdisciplinary Networks of Guardianship Stakeholders released briefing about guardianship reform and encouraging less restrictive options. Find out what some of the suggestions are. 
• Technology Competition: Most people don't think twice about completing simple tasks such as slicing bread or doing laundry, but for people with disabilities, technology equipment often help them do these basic tasks. Read about a competition for people with physical disabilities highlighting new technology that helps them complete daily tasks. 
• Caregiver Struggles: A recent survey found that nearly half of Wisconsin's direct care workers work a second job to support themselves. Find out what advocacy groups are urging the state Legislature to do to help with this. 
• Free Online Caregiver Courses: The Wisconsin Department of Health Services (DHS) and the Greater Wisconsin Agency on Aging Resources (GWAAR) recently announced a partnership with Trualta, a new free online educational tool for family caregivers across the state.  Learn more about these courses. 
• Accessibility in the 2020 Election: The 2020 election will be talked about for years to come. Despite all of the different challenges, it appears that voters with disabilities may have turned out more than people anticipated. Read about the initial findings. 
• People with Disabilities are Assets to the Economy: People with disabilities are aren't often thought of as assets to the economy, but, in several ways, they actually help it grow and thrive. Read about how one educator feels. 
• Pandemic Helpline: As the pandemic continues, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time. Learn more about this free service. 
• Vaccine Distribution: With a COVID vaccine on the horizon, many disability advocates feel people with disabilities aren't being prioritized enough in distribution plans. Find out why advocates are concerned. 

Upcoming Events

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

• Webinar: Interior And Exterior Accessible Routes:  January 7th, 1:30p.m. to 3p.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.

Waiting. Whether it’s waiting for a red light, waiting for a loved one to come home, waiting for a package to come in the mail, or waiting for something else, whether we like it or not, waiting is a part of life. Some people do it better than others, but, generally, people don’t enjoy waiting. The saying, “patience is a virtue” comes to mind when we discuss the challenges of waiting. In a past entry, I talked about how people with disabilities are generally pretty good at waiting because basically we many times we have no other choice than to since we depend on assistance from others. However, we aren’t the only ones who need to have patience. The people who we work with and interact with often need to have some patience as well.

Having severe physical limitations, things take much longer to complete most of the time. Things as simple as grasping a straw to take a sip of water or hitting a button to open the door can take me a lot longer than the average person. With the type of cerebral palsy I have, when I’m under any sort of pressure to do something, my body freezes. When my brain tells my muscles to do something under pressure, it’s like they lock up. It’s not only frustrating for me, but it’s also frustrating for people who help and interact with me.

My mom, dad, sister and close friends understand this pretty well and know not to rush me most of the time. However, like everyone else, they occasionally get impatient and get frustrated with me. They know it’s part of my disability and that I’m trying my best, but, sometimes, understandably it’s frustrating to wait for me to do the simplest of things. They get irritated with me, and, often, want to just quick do whatever the task is for me. Sometimes, that isn’t possible though. For example, when I’m talking to them using my communication app on my phone, they often try to guess what I’m trying to say before I’m finished typing it. Now, others who use communication devices absolutely hate when people do this; however, I personally don’t mind. If they guess wrong, I just continue typing. If they guess right, we can just move on with the conversation faster.

It’s frustrating when others close to me don’t understand this. I remember one family Christmas a few years ago, I was trying to talk to a family member about something, and the person got up and walked away while I was trying to talk to them. I realize the person did this because they didn’t realize I was trying to talk with them, but that is so frustrating. People who don’t realize that often things take me longer, don’t know to wait for me. 

Sometimes, even though it’d be much quicker to have someone help me, there are things I like doing independently. This is the case for many people with disabilities. While we appreciate the help, sometimes, it’s gratifying to be able to do things by ourselves. This example is funny, but it demonstrates this point well. For me, I’m able to physically use a tissue to blow my nose myself. As weird as that sounds, you have to understand the skill it takes to grab a tissue and hold it up to your nose yourself when you have limited fine motor skills. Would it be easier and quicker to have someone hold the tissue for me? Absolutely, but it’s something I can do independently. Other people with similar circumstances use opening a door as an example. Would it be faster if someone else opened it for you? Sure, but independence is such an important thing.

Over the last few years, I’ve seen many doctors for various reasons. One thing I’ve noticed is that for whatever reason doctors seems to be patient with me. Most of them wait for me to communicate, and usually don’t look to my mom for what I’m trying to say. I’m impressed by this. Maybe it’s because they know me well enough to know to wait. It’s nice—I really appreciate it. I wish others would follow.

I fully admit, I lose my patience with myself and others from time to time. It’s human nature. Living with a disability has taught me lots of things, but patience is one of the biggest things. In my situation, I literally have to be patient with my body. If I try to rush things, it’ll likely end up taking me significantly longer. People who get to know me learn this pretty quick most of the time. People who don’t know me well get frustrated waiting for me to do things. While I understand, unfortunately, I can’t change that. It’s something I deal with on a daily basis, and I’ve learned to try my best, and accept that some people will never understand why things take me longer. Patience is truly a virtue, and, while some have more than others, waiting is something everyone has to do to some extent. All the time—but especially during the holiday season this year—remember people are doing the best they can. Be patient with others. Take the time to talk to people. Try not to rush people. Life is too short!

***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.

With a COVID vaccine on the horizon, many disability advocates feel people with disabilities aren't being prioritized enough in distribution plans. Initial recommendations that the first phase of the vacancies would go to health care workers and people in long-care facilities. Research shows that people with developmental disabilities are much more likely to die from COVID - 19. The concern is that while some people with disabilities who are living in nursing facilities would likely be in phase one, many others with disabilities living in group homes, supported living, or in their own home receiving services won't get the vaccine right away. 

Read more

As the pandemic continues, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time. Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation. The helpline is staffed by graduate students of the Stony Brook University School of Welfare with supervision by licensed social workers. Callers can receive support, guidance, and referrals

Read more

This is an interesting opinion article about the value people with disabilities bring to the economy. It's written by a teacher who witnessed first-hand some of the values of people with disabilities. Several different topics related to disability equality are discussed and she brings up many interesting points. 

Read more

The 2020 Election was like no other. Between happening in the middle of a pandemic, the controversy counting votes, the increased notion of voter fraud, and the delayed Presidential transition process, it's likely that this election will be talked about for years to come. Despite all of the challenges, voters with disabilities may have turned out more than people anticipated. It will be awhile before all of the statistics are available, but so far, it appears likely that more people with disabilities participated than ever before. It also appears that fewer barriers were reported than in a "normal"  election. 

Read more

The Wisconsin Department of Health Services (DHS) and the Greater Wisconsin Agency on Aging Resources (GWAAR) recently announced a partnership with Trualta, a new free online educational tool for family caregivers across the state. It helps caregivers learn about health issues, care techniques, and managing care for clients during the flu season. The modules provide caregivers information about how to safely provide clients hands-on care, how to connect families with support agencies, and other resources in an easy to use format. 

Read more

Meet Emily. As a self-advocate, she is involved in and works for the Autism Society of South Central Wisconsin. She helps plan a networking conference for people with Autism. Between working and volunteering, she doesn’t have much spare time, but when she does, she enjoys hiking and biking. She wants to encourage people to be confident and stick to who they are. We’re so fortune to have Emily as a member of the Network! 

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

Emily is originally from Darlington, WI. Her family moved to Stevens Point, WI her junior year of high school. She graduated from Mid-State Technical College with an Associate’s Degree in 2010. She shares that around that time, she was diagnosed with Asperger’s Syndrome (a form of autism).She worked in assisted living facilities and then moved to Madison in 2017. She has been recently working in an office doing clerical work.

How are you involved with Self-Determination? Why did you join the SD Network?

Since moving to Madison, Emily has been involved with the Autism Society of South Central WI. She is the Administrative Assistant for the Autism Adult Support Group. She is also on the planning committee for INTEGRAL Autism Conference. “INTEGRAL means Interactive Networking, Talks & Education for Growing Autism Legitimacy. This conference is geared toward young adults on the autism spectrum. However, everyone is welcome to participate,” she explains.

Emily worked at and now volunteers for Prosperity Pathways and Onward and Upward. She shares that Prosperity Pathways is the ultimate work-at-home source with guaranteed employment positions for remote and onsite jobs. They share the tips, tricks, and techniques to be successful in getting hired. We are growing and getting more job-ready training programs underwritten by sponsors leading to immediate employment in different industries. Onward and Upward helps people who do not have a home and do not have access to a computer.

Tell us some good news: What’s the most exciting thing happening for  you (or in Wisconsin) in terms of Self-Determination?

Emily is excited that they were able to hold the INTEGRAL conference virtually on October 24th, 2020. She’s also excited that she recently moved into her own apartment.

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

Emily encourages people to be confident and to stick up for themselves. She says, “use available resources and know who you really are." 

What are some of your hobbies?

Emily enjoys doing such things as reading, biking and hiking. She also loves to read, color, do puzzles, and play cards and board 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.

A recent survey found that nearly half of Wisconsin's direct care workers work a second job to support themselves. Advocacy groups behind the survey are urging the state Legislature to implement the recommendations from the Governor's Task Force on Caregiving which includes rate increases and possible providing benefits such as paid time off and health insurance. 

Read more