News

The American Association of People with Disabilities (AAPD) is pleased to announce the application for the 2022 Paul G. Hearne Emerging Leader Awards is now open! We are seeking to recognize emerging leaders or groups with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. While the Paul G. Hearne Emerging Leader Awards have previously recognized only two individuals, we are expanding the eligibility status that groups of people working on an initiative can apply for the award. Everyone in the group applying for the award must identify as an emerging leader with a disability. Two (2) individuals or groups will each receive $7,500 to further a new or existing initiative that increases opportunities for people with disabilities and $2,500 in recognition of their outstanding contributions to the disability community.

We encourage applicants who self-identify as an emerging leader with a disability to apply, regardless of U.S. citizenship, incarceration status, or age. We especially encourage people who have experienced intersecting forms of discrimination and from historically excluded backgrounds, rural areas, and U.S. territories to apply. An applicant’s status as an emerging leader is not necessarily tied to age, education status, employment, or specific experience or involvement in the disability community.

Apply for the 2022 Paul G. Hearne Emerging Leader Award by Wednesday, October 27, 2021 at 5:00pm ET.

AAPD will host a Zoom webinar on Wednesday, October 13, 2021 from 4:00pm to 5:00pm ET for any interested applicants to review the information and answer any questions you have. ASL and CART will be provided. Register here for the webinar. If you have any additional access needs, please email programs@aapd.com.

Most people with disabilities become advocates at some point. Often, it's not by choice, but whether by necessity trying to get what they need to live a successful life. Some people find that advocacy is their calling and turn it into a career. Others find it best to advocate for issues that pertain just to their situation. This article discusses the notion of disability activism in depth. It talks about the different things that go into activism. 

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The US Government Accountability Office recently released a report about how the CMS response to COVID could help in future emergencies. Things such as providing more home-delivered meals and giving providers hazard pay were some of the simple suggestions. 

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Self-Determination Network News:

September 2021

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

Don't Forget to Register!

Don't forget to register for this year's Self-Determination Conference. It will be held virtually October 18-20.You'll be able to learn from self-advocates who are living their best and most creative lives and get the latest information about how to self-direct your supports: inspiring employment, health solutions, housing options, financial opportunities, and so much more! See the Conference Brochure for details. If you register by September 30, you'll receive a great conference kit. Registration is FREE! 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're shining the spotlight on Jordan. This recent high school graduate has found his love for advocacy, and he encourages people to get involved in any type of advocacy. He explains it's a good way to connect with people.  Stop by this month's Member Spotlight to get to know Jordan. 

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:

• Sydney Unplugged: Welcome to my Vlog
• Stewing with Stacy: Tag Along on an Adventure

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:

• Hopes for SSI Overhaul: For the first time in year, there could be big changes to Supplemental Security Income. Find out what this could mean for the program. 
• Input Needed: The National Quality Forum (NQF) is seeking input on 14 quality measures for home- and community-based services (HCBS).  Comments can be submitted through September 17.
• CMS Vaccination Guidelines: The Center for Medicare and Medicaid Services released guidelines for vaccination education,  access and reporting for the residents and staff of nursing facilities and intermediate care facilities for people with intellectual and development disabilities. Read about what the guidelines are. 
• Take Survey: Each year, the Wisconsin Board for People with Developmental Disabilities (BPDD) does an annual survey for self-advocates and family members who have participated in a BPDD project. Help them out by taking the survey! 
• New Resource: The Center for Disease Control and Prevention recently released a toolkit to help people with disabilities understand more about COVID. Check it out.
• Watch: The Applied Self-Direction website recently released a great short video explaining what self-direction is.
• Climate Resilience Efforts Pose Risks: People with disabilities often face more challenges with the effects of climate change. Read about how some advocates feel that people are new risks from mitigation efforts.  
• Summer Internship Program: The Association of People with Disabilities is accepting applications for their Summer Internship Program. Applications are due October 20. Learn more and apply today! 
• Workforce Shortage Still Widespread:  The home health care workforce has more than doubled in the past 10 years, but it'll need to do that and more to keep up with demand in the next decade. Learn what will be needed to keep up. 
• Annual Direct Care Workforce Data: Check out the annual data on the Direct Care Workforce. 

Upcoming Events

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

• Webinar: ADA And COVID: September 22, 2p.m. to 3:30p.m., Online
• Webinar: Social Isolation And Loneliness Among Caregivers During The COVID-19 Pandemic: October 6, 11a.m. to 12p.m., Online
• Webinar: Plumbed Elements: Lavatories And Sinks, Washers And Dryers, And Saunas And Steam Rooms: October 7, 1:30p.m. to 3p.m., Online 
• Self-Determination Conference: October 18-20, Online
  
• Baylor Conference 2021: October 28-29, 8a.m. to 4p.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.

Every year, PHI releases new data on the direct care workforce, which in 2020 included 4.6 million workers, including 2.4 million home care workers, 675,000 residential care aides, 527,000 nursing assistants in nursing homes, and about 1 million direct care workers employed in other settings.

View data

The home health care workforce has more than doubled in the past 10 years, but it'll need to do that and more to keep up with demand in the next decade. According to a new report, serious funding will be needed to keep up. This article does a great job of explaining the day different types of care workers. Wages continue to be a constant challenge, but there's hope because more attention is being given to home-and-community-based services. 

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People with disabilities often face more challenges with the effects of climate change. Some advocates feel that people are new risks from mitigation efforts. As more and more extreme weather events happen due to climate change, the risk becomes greater. However, effects to combat climate change are often inaccessible or counterproductive for people with disabilities. 

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The Applied Self-Direction website recently released a great short video explaining what self-direction is. It uses plain language and great visuals. 

Watch video

“You’re so lucky to have a place to sit all of the time.” I’ve been told something to that effect more than once. I was told that I’m lucky because I never have to buy new shoes because I never wear out shoes since I don’t walk (which is completely false, I probably go through shoes faster than most people, but that’s beside the point). When people make statements like that, I usually just try to fake laugh it off or ignore it, but really on the inside it bugs me. While some people with disabilities find humor in this, I’m not one of those people--they’re much stronger than me and I give them kudos for being able to laugh it off. Let me be clear, I know people aren’t trying to be mean when they say things, but it irritates me that the thought even crosses their mind. Am I really lucky I have to sit all the time?  Don’t they know how lucky they are to be able to stand and walk… even if the conditions aren’t ideal?

My parents and I recently took a trip to Las Vegas. I absolutely love the city, and my parents really trying to get me out there every so often. When we booked our flight, things were looking much better with COVID. Unfortunately, things kind of went backwards lately, but we tried to be really careful. We brought my manual wheelchair because we weren’t going to take anything any chances with the airlines ruining my power chair. We’ve been to Vegas multiple times, and the one thing that struck us this time was the number of people who rented power scooters. There were noticeably more people using scooters out there. While I totally understand that there are hidden disabilities and health conditions that may require a mobility device, it was quite apparent that many people were using them as “toys.”  Multiple times, we witnessed people messing around and having races on them. We even saw couples trying to ride on each other’s lap. Yes, we did see some people who clearly needed mobility assistance, but there were a lot of people who appeared to be using them as toys. My parents got irritated because these people were taking up the elevators and clogging up the sidewalks. It irritated me because of the principle of it. I selfishly thought, “why the heck are you using one? Don’t you know how lucky you are to be able to walk?“

Another thing we noticed in Vegas was the number of people who brought their “service dog” everywhere. I’ve written about this before. I understand it’s a fine line because some people do benefit from emotional-support animals, but many people take advantage of being able to use that “excuse.”  While having some sort of a vest or identification that the animal wears would expose a person’s personal health issues, it would cut back on the number of animals being “used” as fake support animals. What irritates me is that people take advantage of many of the accommodations that are supposed to help those who really need them.

It goes the other way too—the example that comes to mind is that the lines in the Disney parks. I think the policy has changed now, but when my family went when my sister and I were kids, we were forced to go to the front of lines. While it’s a nice gesture for people with conditions that literally can’t wait in line or people who are terminally ill, we felt very awkward doing it. Why should I get special privileges? We were actually quite embarrassed.

Another example is a few years ago, my mom surprised the family by getting us four accessible tickets for a Green Bay Packer playoff game. She had only gotten them because it was a lottery for accessible tickets for that particular game. My sister and dad are the Packer fans, so I felt like she used my disability to get the tickets. Looking back, I realize it was pretty selfish of me to want to take that experience away from my dad and sister, but I was so mad at her. In the end, it ended up being a moot point because the Packers lost the game before.

There are some “perks” (as some people refer to them as) that I literally couldn’t live without. Long-term care supports are one of those. While I’d love to be able to be off all of the government benefits, that’s just physically not possible. Some people with disabilities can earn enough money to be completely independent and off the so-called system, and that’s awesome. As I unfortunately found out a few months ago, I can only physically do so much without my body flipping out. As frustrating as it is, I have to remind myself that at least I’m doing something to contribute to my needs.

I’m not fully independent in any aspect of life—I never will be. Do I wish I could be and not use any of the specialized equipment I rely on? Of course I do. However, I try my hardest to do what I can. When I see people “take advantage” of specialized equipment or say something irrational, it does affect me. I have to remind myself that they probably don’t realize what they’re doing or saying may be offensive. While I don’t see these situations changing anytime soon, educating people is important. Please take advantage of the abilities you do have. There is a magnitude of specialized technology and equipment to assist people who can’t do various things, but please understand that many people don’t have a choice whether or not to use those things!

***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.