News

A recently published study by Dr. Lisa Iezzoni discusses the treatment of persons with disabilities by those practicing medicine. Iezzoni, who herself is disabled, has studied the trends surrounding health care for disabled people for more than 20 years. Her new study focuses on the attitude of treating doctors towards patients with disabilities, and the results are discouraging.

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Recently, President Biden signed an executive order that will increase voting access. The order directs agencies to increase access to voter registration for groups such as military and overseas voters, Native American voters, and voters with disabilities. The order directs agencies to use their website and social media platforms to provide information about voter registration and the distribution of mail-vote-by-mail applications. 

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In February, there was a slight increase in employment for people with disabilities. The increase is contributed to the decline in COVID cases,  and the vaccine rollout. It's expected to continue to increase as things continue to improve. 

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Self-Determination Network News:

March 2021

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

Don't Forget to Register for Disability Advocacy Day of Action

Don't forget to register for Disability Day of Action that's on March 23rd. It's a virtual event focused on connecting Disability Advocates with their legislators to talk about issues that matter to them. Attendees are expected to participate in the morning briefing and call their legislators in the afternoon. Registration closes soon.  Learn more and register today! 

2021 Self-Determination Conference Call for Proposals 

Are you interested in presenting at the 2021 Self-Determination Conference?  The Wisconsin Board for People with Developmental Disabilities is seeking session proposals for Tuesday, October 19th & Wednesday, October 20th, 2021. This year’s theme: Growing Stronger Together will help people with disabilities lead more Self-Determined lives by recognizing the valued role communities play in our lives! Presentations should include at least one self-advocate and must be able to be done both in-person and on video. Proposals are due April 2nd.  Learn more and apply today!  

Opportunity to get Involved!

Are you a Self-Advocate?

Would you like an opportunity to speak up for yourself?

Do you want to be a part of the Self-Determination YouTube Channel?

Join the hosts of the Self-Determination Channel for a Zoom Drop In video recording session. We have questions- you have answers!

We will record your answers about how you live a Self-Determined life and what is important to you. This is your chance to make your voice heard.

Mark your calendar for Thursday, March 25th at 4p.m. You can drop in any time from 4:00 – 5:30 p.m.

We look forward to seeing you and hearing what you have to say! 

Contact Fil Clissa at fil.clissa@wisconsin.gov for the  link to participate.

Check out the newest videos on the channel:

• In the Spotlight: Black History Month - A Conversation with Cindy Bentley
• Stewing with Stacy: Meet Charlie

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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 new InControl Wisconsin board member, Julie! As one of the founders of the Save IRIS movement, she’s a huge advocate for self-direction. She encourages everyone to remember the word “self” in self-direction and to get involved in some sort of advocacy. Stop by this month's Member Spotlight to get to know Julie. 

Who should we shine the spotlight on next?

Stacy’s Journal

Take five minutes to check out what's happening on the Self-Determination Network:

• Where Healthcare is Headed: As health systems continue to test approaches to better health care quality, the delivery of person-centered care is key for health care system transformation. Learn what researchers found in a recent study. 
• Report Shows Improvement in Voter Accessibility: According to a new report, people with disabilities had far fewer problems with voting accessibility in 2020 than in 2012. Find out how things improved. 
• Research Funding Opportunity for Blindness and Low Vision: The Administration for Community Living has opened up a funding opportunity to conduct research and development activities that will promote independence and community living for those with low vision and blindness. Applications due April 19th. 
• Public Comment on Heightened Scrutiny: The Wisconsin Department of Health Services is opening a 30-day public comment period on its findings about home and community-based service long-term care settings that were identified for heightened scrutiny review. Review is needed to determine if these settings are truly home and community based and not institutional.  Public comment open until March 24th. 
• Self-driving Vehicles Online Forum: Self-driving or “autonomous” vehicles stand to revolutionize transportation in the U.S. and around the world. Here's an opportunity to join an online forum discussing inclusive design for autonomous vehicles. 
• Vaccine Frustration: While Wisconsin has made progress in the vaccine rollout, disability advocates say some of the most vulnerable  people still face multiple challenges accessing it. Read about some of the obstacles people with disabilities are facing. 
• Self-advocate Class: The ARC of Wisconsin is leading a class for self-advocates. Registration closes April 1st. Learn more and register today! 
• Your Input is Needed: The Center on Aging and Trauma of The Jewish Federations of North America’s Holocaust Survivor Initiative, invites organizations to participate in a national survey on Person-Centered, Trauma-Informed Care. Survey closes March 22nd. 
• Vaccine Prioritization: With vaccines beginning to be more available, disability advocates want the Center for Disease Control and Prevention to update its prioritization plan to include the high-risk disability community. Read about why advocates want this.
• Funding Opportunities for Technology Research and Activities: The Administration for Community Living has two new funding opportunities for research and activities for technology interventions to encourage community living outcomes for people with disabilities. Applications due April 26th. 

Upcoming Events

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

• Virtual State Budget Training: March 10th, 11a.m. to 12:15p.m., Online
• Webinar: Adapting Health Transition Services For Youth With Special Health Care Needs During The COVID-19 Pandemic: March 11th, 12p.m. to 1p.m, Online
• Webinar: Livable Communities For A Lifetime: March 16th, 1p.m. to 2:30p.m., Online
• Webinar: The Future Is Accessible: A Legal Perspective: March 17th, 1p.m. to 2:30p.m., Online
• Virtual State Budget Training: March 18th, 6p.m. to 7:30p.m., Online
• Disability Advocacy Day Of Action: March 23rd, 10a.m. to 4p.m., Online 
• Webinar: Access To COVID-19 Vaccines: Issues And Barriers For Persons With Disabilities: March 24th, 1p.m. to 2:30p.m., Online
• Virtual State Budget Training: March 25th, 12p.m. to 1:30p.m., Online 
• Virtual Advocacy For Change: March 30th and 31st, 9a.m. to 12p.m., Online
• Webinar: Review Of The Revised 508 Standards (Part II): Requirements For Hardware And Software: March 30th, 12p.m. to 1:30p.m., Online
• Virtual Employment First Conference: May 13th, 8:30a.m. to 3:30p.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.

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has opened a new funding opportunity for a Rehabilitation Engineering Research Centers (RERC) Program on Wireless Technologies and a Rehabilitation Research and Training Centers (RRTCs) on Interventions to Promote Community Living Among People with Disabilities.

The purpose of the RERC program is to improve the effectiveness of services authorized under the Rehabilitation Act by conducting advanced engineering research on and development of innovative technologies that are designed to solve particular rehabilitation problems or to remove environmental barriers. RERCs also demonstrate and evaluate such technologies, facilitate service delivery system changes, stimulate the production and distribution of new technologies and equipment in the private sector, and provide training opportunities.

RERC on Wireless Technologies: This particular opportunity is for an RERC to conduct research and development activities to improve the ability of individuals with sensory, mobility, cognitive, or other disabilities to obtain, independently access and use wireless technologies in their schools, communities, workplaces, or for emergency response.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on April 26, 2021.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders. 

RRTC on Interventions to Promote Community Living Among People with Disabilities: This particular opportunity is for an RRTC to conduct research and related activities toward interventions to promote community living outcomes among people with disabilities.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on April 26, 2021.

With vaccines beginning to be more available, disability advocates want the Center for Disease Control and Prevention to update its prioritization plan to include the high-risk disability community. The CDC has so far prioritized people in long-term care facilities in the 1a group to get vaccinated, it has not yet mentioned those with similar conditions who live outside of congregate settings. 

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Do you want to Present at the Self-Determination Conference in 2021?

Are you interested in presenting at the 2021 Self-Determination Conference?  We are seeking session proposals for Tuesday, October 19 & Wednesday, October 20, 2021.    

This year’s theme: Growing Stronger Together will help people with disabilities lead more Self-Determined lives by recognizing the valued role communities play in our lives!

Things to know when submitting a proposal:

• Proposals must include a self-advocate(s) as a lead or co-presenter.
• Panels should be limited to no more than 3 people. 
• Conference sessions must support Self-Determination and Self-Directed principles.

• Presentations will be in person and on video this year. Activity and tools must be available on both platforms. Presentations should focus on practical, take-home strategies that people can implement in their work and lives.
• Sessions should not promote specific agencies or products. 
• Repeat or similar sessions from previous conferences will not be considered.
• Sessions will be 1.5 hours in length.
• A typical session has an audience of 50-75 attendees. 

Download the Application:

All proposals are due by 12 p.m. on April 2, 2021.

Please submit your completed proposal form to:

Fil Clissa at Fil.Clissa@wisconsin.gov  or mail to BPDD, 101 E. Wilson St., Room 219, Madison, WI 53703

The Center on Aging and Trauma of The Jewish Federations of North America’s Holocaust Survivor Initiative, invites organizations to participate in a national survey on Person-Centered, Trauma-Informed (PCTI) Care. This ACL grantee is working to build the capacity of aging service providers to provide PCTI care to older adults with a history of trauma as well as their family caregivers. They are conducting this survey to collect information on the current capacity of organizations to provide this type of care.

Responses are anonymous. Only one survey should be submitted by an organization. Respondents are strongly encouraged to coordinate with colleagues to reduce multiple responses from a single organization. Only U.S. organizations should participate.

Respond by March 22, 2021

Take the Survey (estimated 15 minutes to complete)

Lisa Pugh, the Director of The ARC Wisconsin, is leading a class for self-advocates this spring with Sydney Badeau, a great self-advocate leader. There is a cost to the course, but all Family Care organizations and IRIS agencies are funding it! Registration for the HealthMatters™ spring course closes April 1. It is five one-hour classes delivered monthly (there are 2 monthly times to participate to fit into someone’s schedule). Here is an overview of our 6 lessons:

• Lesson 1: What Does It Mean to Be Healthy?
• Lesson 2: Step Into Exercise
• Lesson 3: The Fab Five
• Lesson 4: How Much Food Is Too Much?
• Lesson 5: Benefits Healthy Eating Has on Our Bodies
• Lesson 6: Healthy Lifestyle Review

People who have used this course for in-person classes have lost weight, reduced BMI and blood pressure. And it is fun! Here is some basic helpful information to learn more or to share with your care manager or IRIS consultant: https://arcwi.org/the-arc-wisconsin-academy/

• Flyer: https://arcwi.org/content/uploads/sites/17/2021/01/21-009.06-WI-Health-Matters-Course-Flyer.pdf

• Detailed course booklet: https://arcwi.org/content/uploads/sites/17/2020/08/WI-The-Arc-Academy-Course-Description-booklet-3.pdf

• On-line registration: https://arcwi.org/the-arc-wisconsin-academy/#register

If you could meet one famous person, who would you want to meet? Questions like this are normally not asked to adults. It’s not a usual topic that’s brought up in everyday conversations. Meeting famous people isn’t something most adults care about. Of course, almost everyone has a person or two we would love to meet, but it’s not something we normally do. Often, meeting a famous person isn’t a high priority. Most people aren’t comfortable with being called out for doing something good. Often, people appreciate acknowledgement and praise, but we are uncomfortable with it. For people with disabilities or health conditions, many times, offering to meet a celebrity or being praised for something can be a unique experience.

In an entry I did a few years ago, I discussed my opinion about the whole inspiration controversy. In short, while many people with disabilities hate when the word “inspirational” is used to describe them, I personally don’t normally mind. Don’t get me wrong, I don’t like being praised or called out for something I do, but I hope that I can be an inspiration to others. I believe part of my role as a person with a significant disability is to educate and show others what is possible.

I’ve seen many news stories about people with disabilities or health conditions getting to meet celebrities or getting to do something special as a nice gesture of an organization or person. While this is totally awesome for some people, I personally don’t like the idea of this for someone like myself.  Why would I deserve something like that? Just because I have some limitations and have a different life than most? To me, that is not a good reason. I understand and fully support things like Make-a-Wish for kids with terminal illnesses. Kids with terminal medical conditions unfortunately don’t have much to look forward to. If their one dream of meeting someone famous or going on that special trip somewhere can be fulfilled, by all means, it should. However, I don’t believe that those of us who have physical disabilities (that aren’t considered progressive or terminal) should get that type of special treatment.

I was talking with my mom a few weeks ago about this, and I was telling her how a recent article I read about a man with the same condition I have has special relationships with a few popular country singers. I told her how I thought that wasn’t right. She then brought up something I never thought about. She said maybe that’s another form of advocacy for some people. Maybe some people like sharing their story with famous people and need that recognition to feel worthy. For me, personally, I feel like that is completely asking for pity. For full disclosure, I’ve done meet and greets after a couple of country concerts I attended with my friends, but that’s purely because we were a couple of giddy girls wanting to get autographs and snap a picture with a singer we loved. It lasted about 30 seconds and nothing was even mentioned about me personally. That’s the only way I will ever “meet” a celebrity. I have also met and shared my story with legislators, but when I do that, I’m advocating for better funding for the services I need to receive in order to help me live independently.

I’ve been told that some people probably think some of the advocacy work I do is asking for pity or drawing the wrong type of attention that I want. When I write these articles and do the YouTube videos, I hope I educate people about what life is like for people with disabilities and what we can do. I never ever do this to invoke pity. By doing what I do, am I bragging or showing off? Honestly, I can understand why some people may think that way, and I don’t think they’re completely wrong. I’m proud of where I am and what I’ve accomplished given the curves life has thrown me. I think people have to realize that people with disabilities may never be able to accomplish those big “life milestones” that most of our peers will be able to, so, for me at least, when I share personal experiences about living with disability, many times when I post whatever it is on my social media, I think of it as another milestone or life accomplishment. Is it the same as one of my friends posting about a new house or something cute or funny that their child just did? Of course not, but that’s ok. I still appreciate getting praise and acknowledgement from it.

I’ve been fortunate to have received some awards and recognition various things mostly related to the advocacy I have done. A couple of examples come to mind. The first was back in my senior year of high school. At the end of the year, I was invited to the senior sports awards banquet. Now, I obviously wasn’t an athlete, so I had no reason to be invited. I was told that the athletes had voted me to get the sportsmanship award (I attended almost every football and basketball game during high school). I also received a special sportsmanship scholarship at the academic awards night. Were both of those due to having a disability? In a roundabout way, probably, but again, it was because of something I was able to do despite my circumstances. I’m sure some people in my class felt like I was given undeserved recognition, but, for me, it was a huge honor.

Another thing that comes to mind is when my coworker and I received the “You Make a Difference” award for the articles we wrote in the local newspaper. This was when I was in college, and another lady and I had a weekly column we switched off writing articles for. It was all about experiencing life living a disability. The lady’s son had a disability, so she wrote from her perspective, and I wrote about my experiences. It was all voluntary, but the exposure was incredible for us. We ended up getting an award in Madison. I don’t remember where it was even through, but it was a very special honor. Again, it was because of my willingness and ability to share personal experiences about my disability that this happened.

The last example is when I received the Self-Advocate Diehard Award at the 2019 Self-Determination Conference. I’m not one to boast about myself, so I haven’t mentioned it in any journal entries until now. I was incredibly surprised and honored to receive this. I had done quite a bit of work with the Self-Determination YouTube channel and other things that year, so it was very humbling to be recognized. That too, was directly related to having a disability.

While it’s often hard or uncomfortable to accept, everyone appreciates some type of recognition or praise to some extent. There are so many different views related to this topic. There isn’t a right or wrong--it’s really about individual preference. People with disabilities just have some extra things to consider when receiving acknowledgement.

***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.