News
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
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.
Google recently a lot of new accessibility features for people who have vision impairments, cognitive delays, and physical limitations. Product updates will include a new option for Lookout, an Android function that allows people who are blind or who have low vision to use their phone’s camera to find out about what’s in front of them.. The company is also launching a six-month fellowship program for influencers with disabilities and investing $5 million in a fund backing nonprofits making coding and computer science education more accessible to students with disabilities.
Meet InControl Wisconsin board member, Cindy. She has been involved in self-determination in various ways for many years. She’s passionate about work that focuses on partnering and collaborating with people who receive services and community stakeholders. She loves seeing self-advocates speak up about what’s really going on. We’re so fortunate to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Cindy currently works for AssuranceSD focusing on growth and development in the companies that are part of the AssuranceSD family. In Wisconsin, this includes LKiChoice and Premier. Her approach to this work is centered on relationship building and partnering.
Before working at AssuranceSD, she worked at GT Independence where she was the Chief Talent Officer responsible for employee engagement, learning and development, language access, and culture and belonging; and at TMG, where she held a variety of roles from Director of the IRIS Consultant Agency to Senior Director of Organizational Performance and Development.
“I am passionate about work that focuses on partnering and collaborating with individuals receiving services and community stakeholders,” she tells us.
How are you involved with self-determination? Why did you join the SD Network?
Cindy explains that she has been involved in self-determination through the work that she does, though more importantly, through the relationships she has developed over the years with self-advocates and families. “I am deeply grateful for these relationships and feel passionate about continuing to have self-directed options for people,” she says.
Tell us some good news – what’s the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
The most exciting thing for Cindy is to see the power of the self-advocates. She’s inspired to see them speak truth to power in many settings.
What tip or resource would you like to share with people who want to be more self-determined?
Cindy shares that there is a resource that will be launched this fall by InControl and available on the InControl website. The project is called Caring Across Cultures and was part of the ARPA funding that the State of WI provided. She explains that the focus of the resource is on the relationship between employers and their direct care staff, especially when there are cultural differences. “I think this is a great resource for anyone who might be self-directing,” she says.
What are some of your hobbies?
Cindy enjoys time with her family, sitting around a fire in the backyard, hanging out with her granddaughter, reading a good novel, and brewing kombucha.
***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.
WISCONSIN FAMILY AND CAREGIVER SUPPORT ALLIANCE: Survey: WI Priorities for the National Strategy to Support Family Caregivers
By SD Network, 2024-06-27
The Wisconsin Family and Caregiver Support Alliance wants to hear from YOU! Wisconsin Priorities for the National Strategy to Support Family Caregivers:
- Survey for Family Caregivers
- Survey for Professionals
Survey for Family Caregivers: This survey, sponsored by the Wisconsin Family & Caregiver Support Alliance, solicits input from FAMILY CAREGIVERS telling us what they need. In late 2022, the federal government released our nation’s first National Strategy to Support Family Caregivers, which Wisconsin is now implementing. Your responses about the five core goals of the National Strategy will be used to design future family caregiver supports and to advocate on behalf of the needs for caregivers. It is not necessary to read the entire National Strategy to take this survey. However, this list of Actions for States, Communities, and Others may be of interest. Anyone who is, has been, or may one day be caring for a family member or friend in any capacity is encouraged to complete this survey. |
Survey for Professionals: This survey, sponsored by the Wisconsin Family & Caregiver Support Alliance, solicits input about the needs of family caregivers in our state. In late 2022, the federal government released our nation’s first National Strategy to Support Family Caregivers, which Wisconsin is now implementing. Your responses about the five core goals of the National Strategy will be used to design future family caregiver supports and to advocate on behalf of the needs for caregivers. It is not necessary to read the entire National Strategy to take this survey. However, this list of Actions for States, Communities, and Others may be of interest. |
Want to learn more about the Wisconsin Family and Caregiver Support Alliance (WFACSA)? Visit our website wisconsincaregiver.org Have questions? You can contact us via email at wfacsa@gmail.com |