News
Self-Determination Network News:
July 2024
Connect | Share |Learn | http://sdnetworkwi.org
Registration Now Open
Registration is now open for the 2024 Self-Determination Conference which will be held October 21st-23rd at the Kalahari Resort in Wisconsin Dells. This year's theme is A Seat at the Table: Nothing About Us, Without Us. Join us for one of the largest events for people with disabilities and people who support them. Learn how to live more independently, participate in your community, and direct your public funds efficiently. Learn more and register today!
InControl Wisconsin's Caring Across Cultures Project
Join an Upcoming Lunch & Learn Webinar about Voting
Join the Wisconsin Disability Vote on Tuesday July 23rd from 12-12:45p.m. for another Lunch & Learn webinar. Learn about voting rights for people living in residential settings like a nursing home, adult family home, or community based residential facility (CBRF). Plan to attend if you are a voter in a residential setting, staff from residential facilities, or anyone interested in this topic. Join Janet Zander, Advocacy and Public Policy Coordinator at the Greater Wisconsin Agency on Aging Resources, and the Wisconsin Disability Vote Coalition to learn about your voting rights for people living in a residential setting. Register here.
Opportunity to Give Feedback about the IRIS Program
The Wisconsin Department of Health is in the process of renewing the IRIS waiver. This happens every five years. The department is requesting feedback from participants, family members, and caregivers about what's working well in the program and what needs to be improved in order to make things easier for people to live the lives they want. The department is holding public listening sessions on Tuesday July 30th from 6-8p.m. (register) and Wednesday July 31st from 1-3p.m. (register). There is also a survey you can fill out if you can't attend the listening sessions. It closes on August 2nd. This is really a great opportunity to let your voice be heard about what needs to be changed in IRIS.
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 InControl Wisconsin board member, Cindy. She has been involved in self-determination in various ways for many years, and she loves seeing self-advocates speak up about what's really happening. Check out this month's Member Spotlight to get to know Cindy.
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:
- The Caravan for Disability Freedom and Justice: Marilee has posted information and the schedule for the Caravan for Disability Freedom and Justice. Find out when it's going to be in your area.
- Accessible Absentee Ballot: A Dane County judge has ruled that voters who self-identify that they are unable to read or mark a ballot without assistance can be issued absentee ballots electronically. Learn about this temporary injunction is part of a bigger lawsuit.
- Voters Rights: The Partisan Primary Election is August 13th and the General Election is November 5th. Read about the many important that voters with disabilities should know in an article that the Wisconsin Wisconsin Council of the Blind and Visually Impaired published.
- Caregiver Survey: The Wisconsin Family and Caregiver Support Alliance wants to hear from family caregivers and professionals. Take this survey.
- Accessibility Improvements to Google: Google recently a lot of new accessibility features for people who have vision impairments, cognitive delays, and physical limitations. Find out what's being added.
- Most Prevalent Disabilities in Wisconsin: A technology company working on solutions for web accessibility challenges collected disability statistics in Wisconsin. Learn what the data is being used to do.
- Ballot Dropboxes: The Wisconsin Supreme Court recently overturned a previous ruling that banned dropboxes for returning absentee ballots. Learn why dropboxes are especially important for voters with disabilities.
- Right-of-Way Accessibility Guidelines: The General Services Administration issued a final rule adopting the Access Board's Public Right-of-Way Accessibility Guidelines. Find out what these standards include.
- Wisconsin Author: A lady from Rice Lake has found a way to turn the tragedies in her life into a life-long career of writing novels. Read about why she incorporates a character with a disability into each book.
- Input Needed: The Office of Management and Budget is seeking input on a possible revision of the Standard Occupation Classification Manual. Comments are sought on a variety of topics, including whether OMB should consider adding “care workers” as a detailed occupation. Comments are due August 12th.
- Disability Equality Index: The Disability Equality Index documents the growing importance of data in global business culture. Learn what companies use this information for.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Lunch And Learn: Voters Living In Residential Settings-- Make Your Plan To Vote And Know Your Rights!: July 23rd, 12p.m. to 12:45p.m., Virtual
- Webinar: Climate Change, Health, And Disability: July 25th, 11a.m. to 12p.m., Virtual
- Disability Pride Festival: July 27th, 12p.m. to 5p.m., Warner Park, Madison WI
- Webinar: Beyond Section 508 Digital Accessibility Requirements: July 30th, 12p.m.to 1:30p.m., Virtual
- IRIS Waiver Renewal Listening Session: July 30th, 6p.m. to 8p.m., Virtual
- IRIS Waiver Renewal Listening Session: July 31st, 1p.m. to 3p.m., Virtual
- WisTech 2024 Training #4 Towards Trustworthy Artificial Intelligence: August 20th, 10a.m. to 11a.m., Virtual
- State Plan For Assistive Technology Public Hearing: August 21st, 1p.m. to 2p.m., Virtual
- State Plan For Assistive Technology Public Hearing: August 21st, 4:30p.m. to 5:30p.m., Virtual
- State Plan For Assistive Technology Public Hearing: August 22nd, 10a.m. to 11a.m., Virtual
- WisTech 2024 Training #5 Technology And Tranquility: AT For Mental Health And And Self Care: September 17th, 10a.m. to 11a.m., Virtual
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.
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This report from Disability:IN documents the growing importance of disability data in global business culture. Companies use this information to benchmark their disability inclusive initiatives; to communicate these initiatives to employees, consumers, regulators, and investors; and to drive long-term value creation that accompanies disability-inclusive workforces. The Disability Equality Index is instrumental to over 750 business leaders who have committed to collecting, benchmarking, and progressing toward disability in the workforce. |
ADMINISTRATION FOR COMMUNITY LIVING: Input Needed: Addition of “Care Workers” in Standard Occupational Classification
By SD Network, 2024-07-14
Input Needed: Addition of “Care Workers” in Standard Occupational ClassificationComments due Monday, August 12, 2024
The Office of Management and Budget (OMB) is seeking input to inform a possible revision of the Standard Occupational Classification (SOC) Manual. Comments are sought on a variety of topics, including whether OMB should consider adding “care workers” as a detailed occupation (and how the occupation should be named and described).
By standardizing descriptions of various occupations, the SOC helps to ensure consistency and comparability of occupation-based data. Federal agencies use the SOC to publish occupational data, which allows stakeholders to analyze information about occupations — such as wage estimates, numbers of people working in the occupation, and geographic distribution — across federal agencies and programs. The direct care workforce provides a variety of services that make it possible for millions of people with disabilities and older adults to live and fully participate in their communities. It includes people with various job titles and roles, including personal care attendants, home health aides, direct support professionals, job coaches, and more. Their services can range from helping with personal care and daily living tasks to duties that are medical in nature, such as monitoring a ventilator or ensuring prompt response to seizures. Because the support each person needs to live in the community is unique to them, and many people need multiple services, many direct care workers provide multiple services. The current SOC includes occupations capture some types of direct care workers, such as certified nursing assistants (31-1014), home health aides (31-1121), and personal care aides (31-1122). However, there is no occupation that specifically captures people who provide the support many older adults and people with disabilities need to participate in their communities. These workers are often known as “direct support professionals.” As a result, policymakers frequently do not have the data they need to make important decisions about the range of direct care workers that provide home and community-based services. More information on the potential revisions and how to submit comments is available in the Federal Register notice. |
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CBSNEWS: Wisconsin writer pens novels featuring characters with disabilities
By SD Network, 2024-07-11
A lady from Rice Lake has found a way to turn the tragedies in her life into a life-long career of writing novels. As an avid fiction reader, Katie Kettner realized that she couldn't really relate to any of the characters in popular books, she she started writing her own. She has written 61 novels with 10 more on the way, and each book has a character with a disability. Her books can be found on Amazon.
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WISCONSIN DEPARTMENT OF HEALTH SERVICE: We Want Your Input: IRIS Waiver Renewal
By SD Network, 2024-07-10
Share your thoughts for the next five years of the IRIS program
The Wisconsin Department of Health Services (DHS) is renewing the IRIS waiver. A waiver is a special set of rules that allows us to have Medicaid programs like the IRIS program. For IRIS, it includes the 1915(c) waiver. With it, we can fund services and supports to help IRIS participants stay in their homes and communities.
We must renew the waiver every five years. This is a chance for us to make the IRIS program better between 2026 and 2031. We can improve policy, services, and other things that can make the programs better for participants.
How can I get involved?
Take our survey!
The survey closes August 2.
Take the survey
We want IRIS participants, families and friends, caregivers and providers, IRIS contract staff, advocates, and other partners to share their thoughts.
We want to know how the IRIS program can better serve participants. This is a chance to share your ideas about services, supports, and other areas of care. It’s available in English, Hmong, and Spanish.
U.S. ACCESS BOARD: GSA Adopts Access Board’s Public Right-of-Way Accessibility Guidelines into Enforceable Standards
By SD Network, 2024-07-10
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On July 3, the General Services Administration (GSA) issued a final rule adopting the Access Board’s Public Right-of-Way Accessibility Guidelines (PROWAG) as part of the Architectural Barriers Act Accessibility Standards (ABAAS). The Architectural Barriers Act (ABA) is a civil rights law that requires federally constructed or leased facilities, and certain facilities constructed or leased with federal funds, to be accessible to people with disabilities. GSA’s standard applies to all facilities subject to the ABA except for facilities belonging to the Department of Housing and Urban Development (HUD), Department of Defense (DOD), and United States Postal Service (USPS), as they have their own standards. Upon adoption of PROWAG, all new and altered public rights-of-way subject to ABAAS, such as roads in a national park or streets on a Department of Veterans Affairs (VA) campus, will be required to comply with technical accessibility requirements. These requirements include accessibility features such as minimum sidewalk width, accessible pedestrian signals, accessible pedestrian loading zones, and accessible on-street parking. |
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Can we go out for dinner? Let’s meet for lunch. Can we meet at the park for a play date? Let’s take the kids to the museum. Want to meet at the beach? What do all these things have in common? They are things peers my age say to one another. Socialization changes as we age. In our high school and college years, kids pretty much live life around their social calendars. Meeting up with friends is top priority when people are in their teens and early twenties. After college, people often start their careers and find their significant others. During that stage of life, people still socialize with friends, but it’s often as couples. After a couple years, it turns into families meeting up to do something with the kids. Occasionally, parents have “date nights” with other couples, but, for the most part, socialization for people my age usually revolves around couples events or families getting together. What happens when you don’t have a significant other and kids, but, yet, want and need to socialize with friends? People with disabilities often struggle with this. Not only do many of us have physical barriers such as transportation and needing caregivers to assist us, to deal with, we often face psychological issues. When you don’t have a significant other or a family of your own combined with having physical barriers, it’s challenging to find opportunities to socialize. You often have to be the one to initiate and plan the gathering.
When I started college at UW-Whitewater, I wasn’t even thinking about how I’d make friends or socialize because I had so many other logistical things (cares, classes, accommodations, etc…) to worry about. As I’ve discussed in previous entries, I made friends in college just by hanging out with people. Back then, I had five care shifts a day, so I potentially hung out with five different college students a day. While we probably were supposed to, I developed friendships with most of them, and they introduced me to their friends. Before I knew it, by the second or third week of my first year of college, I had a bunch of new friends and was rarely in my room on weekends because I was hanging out with people. I didn’t realize it back then, but, looking back, it was really neat because I wasn’t the one initiating it most of the time. People asked me to do things. To be honest, a lot of the time, my care shifts wouldn’t be at the scheduled times because we’d just be hanging out and my friends would just help me whenever I needed it. Obviously, I tried to be cognizant of their time and I tried not to “use” them, but it wasn’t a big deal to them if I needed something outside of my normal shift time. Because of this, I truly felt like a “normal” college kid because I was with my friends all the time. I socialized just like everyone else did—I was extremely lucky to have amazing friends!
It wasn’t until after I graduated from college that I realized just how difficult socializing as an adult was going to be. There are several different factors that contribute to this. The biggest factor probably being that people are busy. After college, most people start their “real” lives. Most of my friends started their careers, found their significant others, and started families. This is the normal progression of life. Do I still see them and talk with them? Of course I do, but it’s not on a regular basis. Understandably and rightly so, their priorities have changed.
Another big factor is that I lead a totally different life than most of my closest friends. While they’re worrying about their kid’s next t-ball game or gymnastics practice, I’m worrying about if my care shifts are covered for the next day. I don’t use this example to provoke pity or anything: rather, it just shows how different our lives have become. Getting together is just different now than it was when we were younger. Instead of meeting for dinner and drinks at a sports bar, we meet at a park or zoo, so the kids can play.
Transportation and my care schedule also play a big role in my ability to socialize. None of my close friends live in Oshkosh, so either they have to come up here or I have to find a way to get to Fondy or Milwaukee where they live. This often presents quite a challenge because understandably my friends aren’t able to make the trip very often, and it’s difficult for me to find a ride out of town. I have to coordinate caregivers as well. While most of my friends have helped me out with many of my personal cares in the past, I don’t feel like it’s appropriate to have them help me when we’re just hanging out—especially now that they have kids. When we get together, I have to make sure that I have a decent caregiver with me who not only will be able to physically, but also will be able to assist me with keeping the conversation going. Don’t get me wrong, my friends know how to communicate with me, but sometimes it’s nice to have a person with me who knows me so well that she can help fill in the gaps rather than waiting for me to type it out. Needing a caregiver with me really limits my availability for hang out with friends currently.
Having said all that, in late June, my counselor challenged me to get together with friends a couple of times in July. Due to some different circumstances going on, she knows that I can’t travel to see friends like I often do in summer. This meant I’d have to ask people to come to Oshkosh. As I’ve said in previous entries, I’m very uncomfortable doing this because I hate obligating people. I feel bad that I can’t just meet my friends wherever whenever. In order for me to participate in a get together with friends, I have to plan it weeks in advance so that I have all of my ducks in a row, so to speak. It’s challenging, but know what? I did it. Thanks to my amazing friends, I have four separate get-togethers planned this month! I’m so excited! Did I overdo it? Perhaps, but I’m so looking forward to seeing so many friends.
Socialization is a crucial part of life for everyone. There are many different barriers that can make it hard; however, as long as you have great friends like I do, no amount of roadblocks will ever prevent you from seeing your closet friends!
***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.
DISABILITY RIGHTS WISCONSIN: DRW Responds to Wisconsin Supreme Court Ruling on Absentee Ballot Dropboxes
By SD Network, 2024-07-06
The Wisconsin Supreme Court recently overturned the previous ruling that banned the use of drop boxes for returning absentee ballots. The decision is especially important for people with disabilities because they are more likely to rely on absentee voting than the general public.
AccessiBe, a technology company working to solve challenges of web accessibility using artificial intelligence (AI), charted disability statistics in Wisconsin using the Census Bureau data. This is used to give a better idea of what types of accommodations are needed in the communities.