News

Self-Determination Network News:
March 2022

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Time to Start Planning for the Spring Election 

The Spring Election is coming up April 5th. There are several things you should have an understanding about before going to the polls or filling out your absentee ballot. The Wisconsin Disability Vote Coalition has put together a toolkit for the Spring Election. It has fact sheets, timelines, and other resources you can look at to help you with the voting process. Remember, voting is an important part of advocating for what you want changed. 

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 Katie. When she’s not busy crafting or gardening, she’s advocating for marriage equality not only for herself, but for others as well. Check out this month's Member Spotlight to get to know Katie.   

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:

• Stewing with Stacy: I've been thinking a lot about caregivers

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:

• The Rage Fund Survey: Anna posted a survey seeking information to understand the needs of people who use in-home care providers. The hope is to use the information to develop more responsive solutions. Please consider taking the survey if you use in-home caregivers. 
• Disparities in Caregiving: A research brief was recently released detailing the caregiver workforce by gender and race / ethnicity. Learn about the need for policy and practice interventions to address these disparities in the workforce. 
• Input Needed: The National Institute Of Health is seeking input on its framework for the Strategic Plan for Diversity, Equity, Inclusion, and Accessibility. Comments due April 3.
• Insurance Coverage of At-Home COVID Tests:  The Administration for Community Living has released a fact sheet about insurance coverage for at-home COVID tests. Find out ways that you may be able get at-home tests for no cost. 
• Guidance for Health Care Providers: Recently, new guidance was issued for health care providers working with people with disabilities. The guidance is meant to ensure people with disabilities aren't discriminated against in accessing health care during the COVID public health emergency. Learn more about what the guidance says.
• Alternatives to Guardianship Website: The Center for Youth Voice, Youth Choice recently launched a website with resources about alternatives to guardianship. Check it out!  
• Caregiving Report: The National Alliance for Caregiving has published a 2021 national report, "Caregiving in a Diverse America: Beginning to Understand the Systemic Challenges Facing Family Caregivers," which was based on results of the Caregiving in the U.S. 2020 study. Learn what the study revealed.
• COVID Response and Recovery Fact Sheet: The Biden Administration released a fact sheet that lays out steps to address the needs of people with disabilities in response and recovery of COVID.  
  

Upcoming Events

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

• Webinar: The Role And Value Of Volunteers In Home- And Community-Based And Long-Term Care Programs For Older Adults: March 15, 12p.m. to 1:30p.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 24, 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.

What happens to students with disabilities after high school? This blog discusses transition in plain language and explains what self-direction looks like for new high school graduates. It also includes excellent resources. 

Read blog

A new program, entitled Project Safe Response, will help the Appleton Police Department interact better with people with disabilities. Those wishing to participate fill out a packet of information about the person. The includes things such as emergency contacts, communication methods, behavior s, and other general information about the person. Then, if/when they get a call, they know the best way to engage with the person to assist him/her. 

Read more

Can you do this? Can you do that? How do you do this? How do you do that? Those aren’t questions people normally are asked on a regular basis, or, if they are, they’re meant to help determine something specific such as a medical condition. However, usually, that type of questioning isn’t a regular occurrence in everyday life. It’s not considered normal to have someone ask questions about your abilities and body functions regularly. When you do get asked those questions, you stop and think, “wait, I can’t do that?” or “do I really need help with that?” Fortunately, it only happens to most people when they have their annual physical. However, for people who have disabilities and medical conditions, unintentional interrogation is part of everyday life.

“I guess I never get used to those questions, and we’ll probably do it again Monday,” I said to my parents as we left an almost two-hour physical therapy evaluation for a new wheelchair. Even though, I’ve done many of these types of evaluations in the past, I didn’t know what to expect. I thought we would talk about what functions I need/want for a new wheelchair. We certainly did that, but, because the therapist had never met me before, she had to ask all sorts of questions about my abilities and get personal details about my life. She had to do this, not only so she could make recommendations for my new chair, but she also needed the information to justify things for the insurance company. I’ll be honest--some of the questions she asked made wonder why she needed to know that, but then she’d explain that it was essential to the chair or the insurance would need to know for justification of a certain part or function. She did this questioning in the nicest way, but it made me think about my situation.

Equipment evals are just one example of when people with disabilities are faced with answering uncomfortable, and sometimes, demeaning questions. Often, when you receive long-term care supports, you have to do a functional screen every year that determines if you qualify and how much support you get. With these, the screener asks you about every aspect of your life. Everything from toileting assistance, to how you do your finances, and everything in between. The screener tries to ask the questions in a very positive manner making it less uncomfortable, but, at least for me, I’m mentally and emotionally drained the rest of the day. If you receive personal care assistance, that’s sometimes another annually screen to determine how many hours you qualify for. Not to sound greedy, but, with those screens, people often try to sound as “needy” as possible to qualify for as much support as they can get. Yes, I’m guilty of this, but I’m also very honest. To be clear, I never lie about my abilities, but I’ve learned to paint a picture of my life in terms of what I need assistance with. It’s just one of those things you learn to do after years of experience.

Doctor appointments are another place where those tough questions are asked. I have about six or seven doctors I see. Each time I have an appointment, the same questions are usually asked. Until I a few years ago, I wondered why they asked the same questions every time. I, now, realize why they do. Unfortunately, things change as you age, and although it’s still considered non-progressive, cerebral palsy affects your body more as you age. This is true for care screenings as well—I’ve realized my abilities and needs do change.

The only way people can help you solve problems is by asking questions to get information. It often seems degrading to the person when the questions are very personal, but it has to be done. When I have to answers all these questions, I try to remember that the person is only trying to help me and she/he is really trying to make the situation as least awkward as possible. It sometimes takes a toll on me having to telling people everything wrong with me and share all what I need assistance with, but that’s part of advocacy—sharing one’s experience. I don’t think I’ll ever get used to answering the hard questions. It’s a part of living with a disability I don’t like because I try not to focus on the abilities I don’t have. When people ask me specifically about my abilities, I get uncomfortable and it does often make me sad. I don’t like being reminded of all the things I’m unable to do. As I’ve said in many past entries, my disability is a part of my life, but it doesn’t define the person I am. People, including myself, have to remember that people ask questions to help understand the situation. Most times, people are just trying to get more information to better understand the situation. We all need to remember the common saying, “there’s no such thing as a dumb question.”

***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.

After getting some criticism, the Biden Administration unveiled a plan to better serve please with disabilities during the ongoing pandemic. The plan includes guidance for schools and parents to ensure vulnerable students can safely access to supports and expanding the nation hotline. 

Read more

Meet Katie. When she’s not busy crafting or gardening, she’s advocating for marriage equality not only for herself, but for others as well. Even though it’s hard to do, she encourages people to not be afraid to ask for help. We’re so fortunate to have her as a member of the Network!

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

Katie is 28 and lives in a small town in North Western Wisconsin. “I’m not even sure it’s on a map,” she jokes. She has two cats. She shares with us that she considers herself disabled for six years. She has a generic disorder which her mom and two sisters also have to different degrees.

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

After completing the Partners in Policymaking class through the Wisconsin Board for People with Developmental Disabilities, she attended the Self-Determination Conference where she learned about the Self-Determination YouTube channel. She just officially became a member of the North Country Independent Living board.

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

Katie is working on becoming a peer specialist. She is also talking with her legislators and about marriage equality. She shares that she has been engaged for three years, but, due to how it will affect her benefits, they’ve been putting it off. She explains that she fought to get on disability for two years, and doesn’t want to give up medical care. Her finance is very understanding and has been by her side while she continues to fight this battle. They’re going to advocate not only for themselves, but also for others who are in similar situations.

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

Katie encourages people to get really familiar with the library and the Aging and Disability Resource Center (ADRC). She tells us that both places have tons of fun information to help direct you to what you’re looking for. “Don’t be afraid to ask for help when you need. It’s the hardest thing to ask for, but so important,” she says. 

What are some of your hobbies?

In her spare time, Katie enjoys doing things such as bullet journaling, crafting, quilting, LARPing (sewing costumes), gardening, and teaching classes in the community.

***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.

• Equip schools with guidance and support to keep vulnerable students safe and learning in-person. The Department of Education (ED) will work with school administrators and educators on strategies they can use to continue providing safe, in-person instruction for all students in their classes. ED will engage the Centers for Disease Control and Prevention (CDC) to ensure that its guidance is fully aligned with the latest public health guidance and that schools have clear recommendations and strategies to help protect the safety of and access to rigorous learning that all children deserve. ED will also provide resources for parents who would like additional support in understanding how to navigate their child’s in-person learning experience through local regional parent training and information centers. Parents may find their local center here and reach out for direct assistance and referrals to other organizations, as well as to gain skills to effectively participate in the education and development of their children. States and school districts should use the unprecedented resources provided through the ARP to implement these recommendations and ensure access to a high-quality education for all students, including students with disabilities. Children learn best in-person, and are better able to engage with rigorous instruction and access services and supports tailored to their needs when they are learning alongside their peers. The President has been clear since Day One that we need students back to school for full-time, in-person learning, and thanks to the unprecedented resources provided through the ARP, schools have what they need to safely remain open, keep students and staff safe, and address the impact of the pandemic on student learning and mental health. Some students may need additional protections to ensure they can remain safe in the classroom – including students who are immunocompromised, with complex medical conditions, or with other disabilities that may put them at higher risk of severe outcomes from COVID-19. For nearly two years, educators across the country have provided services and supports to children with disabilities in ways never anticipated prior to the COVID-19 pandemic, and the Administration is committed to ensuring that children with disabilities continue to receive the services and supports they need so they can reach their highest potential.
• Expand the Department of Health and Human Services (HHS) Administration for Community Living’s Disability Information and Access Line to support people with disabilities who face difficulty using or cannot use a self-test. The Disability Information and Access Line (DIAL), available at 1-888-677-1199, is launching a new initiative to support disabled individuals who need assistance using at-home tests distributed by the Administration or support in finding alternatives to at-home testing. For individuals who can use an at-home test, DIAL operators are available to assist with ordering free tests; understanding instructions for test administration and test results; or providing alternative instructions for those unable to access, read, or understand the manufacturer’s version. For those who cannot use an at-home test, DIAL operators can assist individuals with ordering tests to collect a specimen that can be mailed back for results. For individuals who cannot use either an at-home test or an alternative “swab and send” test, DIAL operators can assist callers with locating their state or local health department and/or aging and disability resources for additional assistance with other testing options that may be available in their community, including identifying potential in-home testing options or assistance with transportation or companion support to visit a community-based testing site.
• Launch new COVID-19 testing guidance in American Sign Language and review all existing COVID-19 guidance to confirm accessibility for all disabled individuals. CDC recently released “How to Interpret Positive Self-Test Results” guidance in American Sign Language (ASL), a first step towards ensuring that deaf or hard of hearing individuals can access key information about how to protect themselves and their communities. CDC is also collaborating with the CDC Foundation, Georgia Tech’s Center for Inclusive Design and Innovation, and their partners across HHS to pursue key improvements for all COVID-19 guidance available on CDC’s website that cannot be accessed elsewhere: information in Braille, ASL translation, simplified text, and other alternative formats.
• Execute a new effort to develop at-home COVID-19 tests that are accessible to all. The National Institutes of Health (NIH)’s RADx program has launched a new effort to seek both short- and long-term solutions to improve at-home test accessibility. RADx will consult and work with national organizations who represent communities in need of accessible tests, and test manufacturers to inform the modification or development of more accessible at-home tests, including device design, packaging, and modes of instruction, and challenges. Though at-home COVID-19 tests were only invented last year, the Administration’s investment in this technology has rapidly scaled up manufacturing to the millions per day. This effort strives to ensure that all individuals have an option for at-home testing that can be used and interpreted without assistance, and will set the course towards accessible testing in the weeks and months to come.
• Incentivize all at-home test manufacturers to prioritize accessibility of at-home tests. The Administration has published a formal Request for Information (RFI) to ensure the preservation and expansion of current domestic manufacturing capacities for at-home rapid tests and point-of-care tests. The RFI specifically asks manufacturers to prioritize the accessibility of at-home tests for people who are blind or visually-impaired; individuals with physical, cognitive, or other disabilities; and individuals who need non-English language or literacy support. The Administration will use the information gathered in March 2022 to inform near-term investments – towards ensuring that accessible at-home tests are available for federal purchase.
• Request accessible instructions from manufacturers who have received a Food and Drug Administration (FDA) Emergency Use Authorization (EUA). The FDA has reached out to all test developers that have received an EUA to request that they provide instructions that are accessible and compliant with the Americans with Disabilities Act, including alternative text for all images as well as html versions. FDA will use all authority available to receive these accessible instructions as quickly as possible, while working with RADx to identify other wraparound services that can be provided immediately to make existing at-home tests more accessible.
• Distribute masks to disabled individuals through community-based organizations and jurisdictions. HHS will support health centers and aging and disability networks as they collaborate on efforts to distribute N95 masks to individuals with disabilities who cannot leave their homes. As the President announced in January 2022, the Administration is making 400 million N95 masks from the Strategic National Stockpile available to all individuals in the United States for free. HHS is sending tens of millions of free, high-quality masks to community health centers and rural health clinics – organizations that play a critical role in serving communities across the country, including individuals with disabilities. 
• Call on states to directly distribute high-quality masks through community-based organizations serving individuals with disabilities. Over the past year, the Administration has also sent millions of high-quality masks to states and territories across the country. We encourage all jurisdictions to work in partnership with community-based organizations to expand access for the hardest-hit and highest-risk individuals – including people with disabilities who may be unable to leave their homes.  

The National Alliance for Caregiving has published a 2021 national report, "Caregiving in a Diverse America: Beginning to Understand the Systemic Challenges Facing Family Caregivers," which was based on results of the Caregiving in the U.S. 2020 study. The report analyzes the experience of over 800 caregiver respondents of different socioeconomic background, sexual orientation, and gender. The report also includes additional literature on diverse caregiving and research recommendations.

View report

The Rage Fund (https://jointherage.org/) seeks to understand the needs of those who use in-home care providers in order to develop more responsive solutions. It will only take 5 minutes to complete this survey: https://forms.gle/FLhKaCUcq48Y6Uko9  All information submitted is anonymous, and the information you share will inform services and products provided by The Rage Fund. Thank you for taking the time to share your experience with us. 

• a US map with information about alternatives to guardianship in different states;
• photos and bios of our Youth Ambassadors and a Youth Ambassador Training Curriculum;
• resources for many different audiences including ones written in plain language; 
• stories about youth; and
• information on State Teams that are part of a national Community of Practice.