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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.

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. 

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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. 

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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.

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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.

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

There are two major elections coming up. The Partisan Primary Election is August 13th and the General Election is November 5th. There are several important things that voters with disabilities need to know. The Wisconsin Council of the Blind & Visually Impaired has published an article about all the rights and information that voters with disabilities need to know. 

View article

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. This is a temporary injection of a bigger lawsuit filed by Disability Rights Wisconsin, the League of Women Voters, and for people with disabilities. 

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Self-Determination Network News:

June 2024

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

Registration for the 2024 Self-Determination Conference Opens in July

The 2024 Self-Determination Conference will be held October 21st-23rd at the Kalahari Resort in Wisconsin Dells. It's one of Wisconsin’s biggest (and most amazing) event for people with disabilities and the people who support them. Last year, over 800 people attended the conference! This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined live. Registration will open in July. We'll be sending out a message when registration is available. Stay tuned for details! 

InControl Wisconsin's Caring Across Cultures Project

Join an Upcoming Lunch & Learn Webinar about Voting 

Constitutional amendments will be on the ballot again in August. Changing our constitution is  big deal. Join the Wisconsin Disability Vote Coalition's Lunch & Learn on Tuesday June 25th from 12p.m. to 12:45p.m. to learn what they’re about. We  will also talk about how the new maps may impact you, what else is on the ballot, and how you can be prepared. Register for the webinar here.

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 the vice president of InControl Wisconsin, Julie. This fierce advocate for people with disabilities full-heartedly believes in the true meaning of self-direction and continues to push for change.  Check out 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:

• Caregiving Front and Center in the Election: With the election a few short months away, caregivers of all types are seeking better health care options. According to one report,  home health care and child day care are both in the top 10 industries with the largest number of working Medicaid enrollees. Learn why Medicaid expansion would greatly help.
• Accessible Workplaces: Every year, Global Accessibility Awareness Day brings awareness to the need for digital access and inclusion in the workplace. Read about else should be considered when creating an accessible workplace.
• Adaptive Clothing Startup: When people pick out what clothes they're going to wear, most take things like the weather, plans for the day, and their mood in to consideration. However, not many people think about how many buttons something has or how hard the zipper is on a certain piece of clothing. For people who have dexterity limitations or physical limitations, things like that really matter. Find out about an adaptive clothing startup in Madison that seeks to resolve those types of problems for people with disabilities.
• Changes to SSI: The Social Security Administration is making several changes to the Supplemental Security Income program, which will take effect in September. Read about the changes coming.
• WisCaregiver Connections: WisCaregiver Careers offers a free training for certified direct care professionals and certified nursing assistants. One component of the program is the WisCaregiver Connections online workforce platform that gives hiring providers access to certified workers.  Learn more about  the program.
• New Accessibility Features: Apple announced a range of new capabilities aimed at making life easier for people with disabilities including an option to control a phone or tablet using only a person’s eyes. Find out what other features are going to be available.
• Solutions to the Direct Care Workforce Crisis: Experts discussed solutions to improve jobs for the nation’s direct care workers at the National Skills Coalition’s 2024 Skills Summit. Read about some of the ideas that were thought of.
• Push for Better Healthcare for Co-occurring Conditions: National developmental disability advocacy groups are linking multimillion-dollar partnerships with some big players in health care in a push to better address co-occurring conditions.  Learn about what groups are hoping to do.
• EVV Hard Launch Date: A date for the hard launch of electronic visit verification  (EVV) for home health care services and personal care nurse supervisory visits has been set. Find out when it is.
• Rebuilding Trust in Healthcare: According to a recent poll, the majority of people with disabilities have negative health care experience. Read about why many advocates feel that it's time for government to step in.
• The Pink Umbrella Theater Company: The Pink Umbrella Theater Company was founded in 2018 as Milwaukee’s first theater for artists with a wide range of disabilities. Find out more about this unique company.
• Partners in Policymaking: Partners in Policymaking is an advocacy and systems change training program that develops leaders who are able to work with legislators and communities on policies and initiatives that will support the full inclusion and participation of people with disabilities in all aspects of life. Applications are due on October 4th.
• SPARKs Grants: Do you have an idea to make your community a better place for people with disabilities? Organize your grassroots group and apply for funding to help make it happen! Find out more about SPARKs grants and apply today!
• Funding for Transportation: The U.S. Department of Transportation’s Federal Transit Administration announced $7.8 million for 17 projects that will improve public transportation for people with disabilities, older adults, and low-income individuals. Learn about what these grants will support.
•  Input Needed on the Family Care Waiver: Last year, the Wisconsin Department of Health Services asked members, family, friends, caregivers, providers, managed care organizations, tribal leaders, advocates, and other partners how they can improve Family Care and Family Care Partnership. They used that input to draft changes to the program waivers. Now, they want your input on the draft waiver renewal application. Comments due on July 5th.
• National Strategy to Support Family Caregivers: The Administration for Community Living announced availability of $2 million to support the National Strategy to Support Family Caregivers. The applications are due August 6th.
• Researchers Creating a Robotic Arm: Researchers at UW-Milwaukee are creating a robotic arm accessory to increase mobility for people with disabilities. Read about how this arm was created..
• New Guidance: The nation’s pediatricians are getting new guidance on how to help teenagers with intellectual and developmental disabilities and their families navigate the transition to adulthood. Learn what's included in the guidance.

Upcoming Events 

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

• Lunch And Learn: Constitutional Amendments And Fair Maps Webinar: June 25th, 12p.m. to 12:45p.m., Virtual
• Webinar: Picture This! Identifying Non-Compliant Elements & Spaces: July 11th, 1:30p.m. to 3p.m., Virtual
• WisTech 2024 Training # 3 Host With The Most: Inclusive Party Planning: July 16th, 10a.m. to 11a.m., Virtual
• WisTech 2024 Training #4 Towards Trustworthy Artificial Intelligence: August 20th, 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.