News
October 2021
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Registration Closes Wednesday October 13th!
There's still time 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. Registration is FREE, but you have to register by this Wednesday. Register today!
After the conference, we'll have a discussion on the Network about it. Continue conversation and chat with others about what you learned during the conference. Watch for an email with instructions on how to join the discussion!
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 Tyler. This Special Olympian and Paralympian has real determination, and he has a great support circle who help him. Stop by this month's Member Spotlight to get to know Tyler.
Who should we shine the spotlight on next?
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:
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:
- Emergency Response Report: The US Government Accountability Office recently released a report about how the CMS response to COVID could help in future emergencies. Learn about what the suggestions are.
- Disability Activism: Often, people with disabilities don't have choice, but to advocate for what they need. Read about the whole notion of disability activism.
- Emerging Leader Award Nominations: The American Association of People with disabilities announced applications are available for the 2022 Paul G. Hearne Emerging Leader Award. Applications are due October 27. Find out more about this award and apply today!
- Feasibility of Wheelchairs on Aircrafts: The US Access Board recently studied the feasibility of wheelchair securement systems for passenger use in airplanes. Learn about what the study found.
- Call for Presenters: Proposals to present at the 2022 Circles of Life Conference are now being accepted. Proposals due October 20.
- Recommendations for Family Caregiver Support: The RAISE Family Caregiving Advisory Council recently gave their initial report to Congress. Read about what the recommendations are.
- Vaccine Mandates Cause Concern: President Biden mandated that nursing home workers get vaccinated or they risk losing funding. However, this doesn't apply to most home care workers. Find out why advocates aren't pushing for this.
- Staff Shortages Continue: The direct care worker has gone from a problem to a crisis. Read about what a recent study found.
- Booster Guidelines: Recently, the CDC approved booster vaccines for some people. Learn about who may qualify.
- New Vendor for Non-Emergency Medical Transportation: The Wisconsin Department of Health Services announced that beginning November 1, Medicaid members will be working with a new vendor for non-emergency medical transportation services. Read more about this change.
- The Future of Disability Advocacy and Politics: Recently, the Biden Administration has leveraged disability rights. This is a very interesting article about what this could mean for the future of advocacy and politics.
- The State of America's Direct Support Workforce: A new reveals just how much the pandemic has impacted the already depleted direct care workforce. Learn about what people think needs to happen.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Ask An ADA Professional- Hybrid Work, Face Coverings, And Vaccinations: October 13, 1p.m. to 2p.m., Online
- Webinar: Taking Care Of Yourself During COVID: October 13, 2p.m. to 3p.m., Online
- Self-Determination Conference: October 18-20, Online
- Webinar: Workers With Long COVID-19 And The ADA: October 19, 1p.m. to 2:30p.m., Online
- Baylor Conference 2021: October 28-29, 8a.m. to 4p.m., Online
- Webinar: Accessible Means Of Egress: November 4, 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.
New research find that the just how much the pandemic has impacted the direct care workforce. Before the pandemic, for decades this workforce has been in despair due to low reimbursement rates. A survey of providers was recently done and the results were very revealing. People are struggling in all aspects of providing care to people. This report suggests that it's time for the federal government to make some major changes.
What's your story? Tell us a little bit about yourself.
Tyler Wigington is 26 years old and has been living in a condo for three years now. He shares it with his brother who provides about five hours per week of support with shopping, cleaning and cooking. He has been working 30 hours per week for a number of years. He currently works at Woodman’s where he prepares online order for groceries. He participates in many activities such as Special Olympics, a bowling league, Best Buddies and events at UW Madison. He also has a chihuahua dog named Pacho.
How are you involved with self-determination?
Tyler has been involved with lobbying members of the WI Congress and Senate to help people with disabilities. He flew to Washington and met Tammy Baldwin and several other politicians. He even got to take a picture on the balcony of the Speaker’s Chamber. He has been trained as a Global Messenger and a Health Athlete leader. He also sits on the Unified Leadership Council for Special Olympics where they try to help others with disabilities learn to speak up for themselves and be their own advocate. He worked with the UW Waismen Center on a study to help include people with disabilities to be included in research studies as well.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Tyler shares that he continues to work on independent living skills and hopes move out on his own someday—or maybe live with a friend and he can help him be more independent. After five years of working with Woodman’s, he will be leaving. ”It is exciting and a bit scary to leave, but I am ready for a new challenge and hope to work in something related to sports,” he says.
What tip or resource would you like to share with people who want to be more self-determined?
Tyler encourages people should always have someone that cares for you helping you out. “My parents were training me to move out and now I am. I have a very good case manager that cares for me and allows me to choose how to live,” he explains.
What are some of your hobbies?
Tyler enjoys running. He has completed in seven half marathons and his fastest time is one hour and 37 minutes. He’s on USA Paralympics and has traveled to Ecuador, Portugal and Australia for races. He also likes to participate in Special Olympics for bowling, flag football and basketball.
***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.
AGDAILY: AgrAbility Virtual State Fair provides resources for farmers with disabilities
By SD Network, 2021-10-02
During the month of October, AgrAbility projects from 20 states (including Wisconsin) nationwide will join together to participate in an AgrAbility Virtual State Fair online. This is a great opportunity to provide resources and information to farmers, ranchers, and agricultural workers who are working in production agriculture with a disability while also raising awareness about the project and the good they do throughout the year. The National AgrAbility Project is involved with farmers who have a disability, functional limitation, or health condition.
Recently, the Biden Administration has leveraged disability rights. In this essay, the author discusses what this could mean for the future of disability advocacy and politics. This piece brings up some very interesting points.
WISCONSIN DEPARTMENT OF HEALTH SERVICES: DHS Improves Non-Emergency Medical Transportation Services for Medicaid Members
By SD Network, 2021-09-30
Beginning November 1, 2021, Wisconsin Medicaid members who participate in eligible programs will be working with a new vendor, Veyo, to get transportation to their covered health care appointments. This benefit, referred to as non-emergency medical transportation or NEMT, is available when members lack access to transportation, require assistance because of disabilities, or have their appointments in locations or at times when public transportation is not available. The outgoing vendor, MTM, will continue to provide services through October 31.
When was the last time you really watched a person get into a swimming pool? Do we stare at girls dancing at a wedding? Do we watch when people do ordinary things like this? Typically not—unless it’s different. We are accustomed to seeing people do things a certain way. When a person does a task or activity different, we are interested. It’s not wrong--it’s human nature to want to watch someone do something in a different way. For people who have visible disabilities or health conditions, it sometimes feels like you’re in the spotlight anytime you go out in public.
In a journal entry a few years ago, I wrote about fitting in at various social events. Using a power wheelchair and having uncomfortable movements understandably draws attention to myself pretty much wherever I go. It’s just something I’ve learned to deal with. Usually, I do whatever I can not do make even more of a scene when I’m out. It doesn’t work too well most of the time, when I’m at a gathering with friends or family, I try my hardest to keep my movements under control and not make too much of a scene. As I explained in previous entries, though, when I try not to do something intentionally, my body doesn’t cooperate. In fact, it does the complete opposite - - the harder I mentally try, the more my body does the opposite. It’s part of Cerebral Palsy. Usually, I just “try not to try” and just ignore my body. I’m learning that it’s pretty much all I can do in those situations.
There is a different kind of attention when I try do something ordinary, but it causes a scene because I do it different. Let me try to explain. A few years ago, I was at a friend’s wedding. She had worked for me for a few years and we became friends. My mom went with me to the wedding. I didn’t know anyone but the bride, and I was the only one with a visible disability. Obviously, some of her family knew about me, but I didn’t know anyone else which was fine. I was just there to support my friend. My mom ended up running into some people she knew, so we sat at the reception with them. It was a nice time. However, the whole night, my mom kept urging me to get on the dance floor. I kept saying no. When we left, she said, “I really wish you would have danced. It warms people’s heart to watch you dance.” I tried to explain to her that’s exactly the reason I didn’t want to. I didn’t want to be a spectacle that night in front of people I didn’t know. At other weddings, yes, I’ll get out on the dance floor, but, it’s different around people who I know.
Another example is when I get in and out of swimming pools. I love to swim and it’s so good for my muscles. However, when I get in and out of pools, it’s a scene. My parents have a system down. It takes both of them to get me in and out. Getting in is easier than getting out. They get me out of my wheelchair, sit me on the edge of the pool, one of them holds me up while the other gets in the pool, and then they ease me into the pool. Getting out is even more of a scene. We sometimes use the lift if the pool has one to get out. Regardless, it’s something that draws attention to us. Normally, in hotels, I don’t care. Usually, we go to places that aren’t crowded, so there’s just a few people around the pool. I figure it’s worth making a scene if that means I can swim. My aunt and uncle have a pool at their house, and this summer we had a big family gathering for my grandma’s 90th birthday. All of our family came in from across the US, and we had a big party. On the second day, it was a pool party. We did family pictures as soon as everyone got there, and people were swimming all day. I wore my swimsuit, but I wasn’t sure I’d go in. After pictures, I was just about to go in because my sister and nephew were in, but then other people (besides family) started arriving. They were friends of my aunt, uncle, and cousins. I quickly changed my mind and didn’t go in. Even though nobody would have probably cared (and likely people would have offered to help), I didn’t want to draw more attention to myself. Does that sound conceited? Probably, but I knew it’d cause a scene.
Unfortunately, I’ll probably always have this issue. It’s just something I’ve learned to deal with. Most of the time, I have a choice whether or not I want to do the activity. It’s a fine line between wanting to experience or do something and feeling like you’re a spectacle. Everyone is different—some people care less about being watched while doing an activity in an unusual way, while others hate being the spectacle all the time. Most of the time, I don’t really mind people looking at me when I’m doing something different because I believe that’s part of advocacy—showing others what I can do despite my challenges. However, admittedly, sometimes I miss out on opportunities just because I don’t want it to be made into a scene. I feel like some things are just not worth being put on stage for.
***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.
On Friday, CDC announced recommendations for boosters of the Pfizer COVID-19 vaccine for people who: are 65 and older, live in long-term care settings, are at high risk for severe illness, or work in a high-risk job. Today’s Policy Roundup includes those details, along with the following:
- CMS guidance: ARP Act funding for Medicaid and CHIP (Coverage of habilitation services, COVID-19 testing and vaccination, and more).
- Input needed: Medicare drug pricing rule
- Input Needed: NQF Rural Telehealth and Healthcare System Readiness Measurement Framework
- Medicare.gov Tool to Compare Nursing Home Vaccination Rates
CDC recommendations for COVID-19 vaccine boosters
On Friday, the CDC recommended booster shots of the Pfizer COVID-19 vaccine for people at highest risk of serious illness and those in high risk occupational and institutional settings. Specifically, CDC guidance now states that people who received their second shot at least six months ago:
Should receive a booster shot if they are:
- 65 years old or older
- 18 years old or older and live in a long-term care setting
- aged 50–64 years and have underlying medical conditions
May receive a booster shot, based on their individual benefits and risks, if they are:
- 18–49 years old and have underlying medical conditions
- 18–64 years year old, and at increased risk for COVID-19 exposure and transmission because of occupational or institutional setting. The CDC website includes a complete list, but it includes front line healthcare workers and congregate care staff.
CDC will evaluate available data in the coming weeks to swiftly make additional recommendations for other populations, as well as for people who received the Moderna or Johnson & Johnson vaccines.
DISABILITY SCOOP: People With IDD, DSPs May Qualify For COVID-19 Vaccine Boosters
By SD Network, 2021-09-27
The Center for Disease Control and Prevention recently approved a booster vaccine for some people. Currently, Pfizer is the only one approved. People who live in congregational settings and those with underlying health conditions are among the people who can get the booster as of now. The CDC didn't specify workers who may qualify, but it is expected that direct care professionals will also qualify.
FORBES: Staff Shortages Are Hammering Long-term Care Facilities, Home Care Agencies, and Families
By SD Network, 2021-09-24
The direct care worker shortage has gone from a problem to a crisis. According to a recent survey, 82% of assisted living facilities and 89% of nursing homes report a moderate to severe shortage of staff. It isn't just facilities either - home care agencies are reporting the same problems. The pandemic just added to this issue. People feel the bottom line is that these workers need better pay.