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. 

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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. 

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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

• 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.

• How civil rights laws prohibit discrimination against people with disabilities in accessing scarce healthcare during emergencies, including Crisis Standards of Care (CSCs).
• Our networks filed complaints with OCR about CSCs, including several that were resolved by OCR.
• Reasonable modifications to visitation policies, including in hospitals and long-term care settings.
• Our networks also filed complaints with OCR about visitation policies, including at least one that was resolved by OCR.
• Accessibility of vaccination, testing and contact-tracing programs.

Along with vaccinations and sensible individual measures such as wearing masks, maintaining physical distance, and hand-washing, at-home COVID-19 tests are an important tool for stopping the spread of the virus. There now are several no-cost ways to get tested and to obtain at-home test kits to have on hand in case they’re needed. For people who need to purchase additional tests, health insurance may cover the cost (and assistance may be available for those who do not have insurance).The Administration for Community Living  pulled together the basic details in this fact sheet.