News

The U.S. Department of Justice (DOJ) has published guidance on web accessibility and the Americans with Disabilities Act (ADA) to inform state and local governments and businesses open to the public on how to ensure their websites are accessible to people with disabilities. This guidance uses plain language and clear examples to review Title II and Title III of the ADA, the importance of web accessibility, barriers that inaccessible websites create for some people with disabilities, requirements of the ADA to web content, and tips on making web content accessible. 

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A review of self-direction literature, statutes, policies, and advocacy papers in the U.S. and other countries reveals a number of recurrent aspirations of the creators of these programs. Considering these themes as a whole makes it possible to generate a composite vision of a “Great Self-Direction Program” with a number of discrete elements. This paper is an attempt by long-time, InControl Wisconsin board member, Lynn Breedlove at describing such an aspirational program, which doesn’t exist anywhere (yet). It is intended to be a starting place for a conversation, not the last word on the subject.

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You can email Lynn with any questions or comments you may have. 

Going into the third year of the pandemic, things such as telemedicine, working at-home rapid tests, virtual schooling, and drive-thru vaccine clinics have become the norm for most people. However, as people raced to come up with solutions for living in a pandemic, some people with disabilities were left behind. Medical things such as interpreters for virtual appointments, an small print instructions for at-home tests, long lines at drive-thru testing or vaccine sites for non-drivers who rely on other paid transportation, and various other things have made it more challenging for people with disabilities. 

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Governor Evers recently announced that 154 National Guard members have completed certified nursing assistant (CNA) training to assist with staffing in hospitals and nursing homes. This is intended to be short-term. 

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Two years into the pandemic, and many people with disabilities are facing hidden costs that most people don't even think about. Many people are struggling to obtain regular much-needed medication due to pharmacies not being able to get them. In addition, many of the replacement parts for medical equipment aren't readily available. Materials needed to make home modifications aren't easily available either. Costs of materials have nearly doubled , so building something like a ramp to get in and out of the house is costly. 

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Self-Determination Network News:
March 2022

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

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. 

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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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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. 

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