News
Self-Determination Network News:
March 2023
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2023 Self-Determination Conference Call for Presenters
Are you interested in presenting at the 2023 Self-Determination Conference? The Wisconsin Board for People with Developmental Disabilities is seeking session proposals for Tuesday, October 17 & Wednesday, October 18, 2023. Proposals are due by noon on May 12th. Submit a proposal today!
State Budget Advocacy
Late in February, Governor Evers released his 2023-2025 budget proposal. The Survival Coalition put together an analysis of the proposal from a disability perspective. The Caregiver Crisis Coalition also has created a proposal that addresses many aspects of the caregiver crisis. We encourage you to use these documents while talking to your legislators about what you'd like to see in the budget.
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 Stephenie. Thanks to her family’s encouragement and belief in her, this self-advocate has done so many incredible things. She believes self-determination is having a voice and a choice what happens in your life. Check out this month's Member Spotlight to get to know Stephenie.
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:
- Human Rights: #16 Rest and Do the Things You Like to Do
- Human Rights: #17 Protection within the Law and Your Services
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:
- Proposed Change to Benefits: A new proposal from the Social Security Administration would make life easier for millions of disabled Americans whose friends or family help them out with food. Learn more about the proposal.
- Making Caregiving a Career: By 2030, more than 1 in 5 people in the United States are expected to be ages 65 and older, and nearly 70% of all adults who reach age 65 will eventually require some type of long-term services and supports. Read about how there are several caregiver occupations in the home health care industry that are growing.
- Disability Inclusion: Disability inclusion means intentionally cultivating environments where all can flourish. It means taking action to make change happen. It means including disabled consumers. While corporations are slow to latch onto the idea, read about how small steps are leading to great progress.
- Crisis Leaves People Abandoned: A member of the Madison City Council and the Dane County Board is talking about the caregiver crisis that has been affecting people with disabilities and the elderly. Learn why it's both political and personal for her.
- EVV Resources: Electronic visit verification (EVV) is required by federal law for personal care and applicable supportive home care services. Check out these resources to learn about EVV.
- Being Reliant on Caregivers: Listen to this commentary about the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work.
- Assistive Technology Day: On March 1, the U.S. Senate passed a resolution to raise awareness and celebrate National Assistive Technology (AT) Awareness Day. Learn what the day honors.
- Breaking Point: After warning for years of an impending collapse in the disability services system, advocates say that the crisis is here. Read about things have escalated to a dangerous level forcing providers to deny people with disabilities Care and services.
- Passing of Disability Activist: The disability community is mourning the passing of disability rights activist Judy Heumann. Learn about the integral role she had in the disability rights movement.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Person-Centered Methods For Expanding Self-Determination In Provider-Directed Services: March 15th, 2p.m. to 3:30p.m., Online
- Advocacy For Change: March 16th, 9a.m. to 4:30p.m., Concourse Hotel and the Capitol, Madison WI
- Webinar: Inclusive Imagery – Writing Alt-Text Depicting People With Disabilities And Other Marginalized Identities: March 16th, 1p.m. to 2:30p.m., Online
- Webinar: The Intersection Of Women And Disability: March 21st, 1p.m. to 2:30p.m., Online
- Webinar: COVID-19 Data On Individuals With I/DD: March 22nd, 11a.m. to 12p.m., Online
- Disability Advocacy Day: March 23rd, 10a.m. to 3p.m., Monona Terrace and the Capitol, Madison WI
- Home Health Care Services Electronic Visit Verification Forum: March 23rd, 1p.m. to 3p.m., Online
- Webinar: Person-Centered Approaches To Supporting Dignity Of Risk For People With Disabilities: March 23rd, 2p.m. to 3:30p.m., Online
- Circles Of Life Conference: May 11th & 12th, The Wilderness Resort, Wisconsin Dells, WI
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.
What's your story? Tell us a little bit about yourself.
Stephenie is a self-advocate with Cerebral Palsy (CP). She lives in the Fox Valley Area with her husband, Ben and three cats.
For as long as she can remember, she has been advocating for things that she needed or wanted to do. She shares that it’s something her family encouraged her to do from a young age. Being one of four siblings, and the only child with a disability, she was “along for the ride.” “My parents and siblings included me in most of the daily goings-on. They have always believed that the list of things I can do is longer than the list of things I can’t,” she says. To this day, if there is something she unable to do, it usually comes down to either a moderate risk to her health/safety or lack of the suitable adaptations that make it possible for her to do it.
That said, Stephenie explains that her family’s belief in what she’s capable of and the dignity of risk gave her the freedom and confidence to seek out and embrace new experiences. From getting a college degree to moving out on her own, to international travel, dating, and getting married. She explains that she generally doesn’t let setbacks stop her. Instead, if there’s something she wants to do, she works at it until she finds a path or opportunity to do it. It hasn’t been easy. She shares that there are a lot of barriers and limitations to work around. “I get frustrated and discouraged sometimes, so I take breaks to work through that and recharge. Then, I try again. It takes time and perseverance, but 9 times out of 10 it’s worth it,” she says. As she has gotten older, she really wants to help other people with disabilities discover what they are capable of and pursue their goals and dreams. That desire led her to Disability Rights Advocacy and seeking change not just for herself but change within her community too.
What does Self-Determination mean to you? Why is it important?
For Stephenie, self-determination is having a voice and a choice in what happens in your life. She believes that for it to be successful, accommodations and adaptations may be needed, because the playing field isn’t level. But in the end, what you say goes and your choice is supported. It is important because it allows all of us to experience a life more fully lived. “We all have goals, dreams, and wish lists. Everyone’s wants something different out of life. Self-determination allows you to embrace life and make it your own,” she explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Stephenie is that she and her husband will celebrate their 5th wedding anniversary this year. She shares that while the road to marriage wasn’t easy, and isn’t for most people with disabilities, she’s excited to celebrate this milestone. It has fueled her work to eliminate the marriage penalties and increase asset and wage limits. She explains that there’s a way to go yet before the penalties are eliminated, but there is legislation in the pipeline to increase the asset limits and make other reforms to SSI that are sorely needed. “I’m hopeful that we’ll see the bill passed and those changes start to happen. We all deserve to experience love without limits if we choose to,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Stephenie’s self-determination tip is to set goals. “With self-determination, ideally the floor is yours. The world is your oyster. The question is, now what? What is it that you want to do?,” she tells us. She explains that answering that question may feel overwhelming. Stepping back and setting goals can help break things down into manageable steps. It can also help you set a target to aim for. It usually doesn’t happen right away, but when you hit that first target, it not only gives you a sense of pride and accomplishment, but it also motivates you to set the next goal. As your goals build on each other, your confidence will grow. You may find yourself more solution-minded, open to new experiences, and excited to see what’s around the next corner. Goal setting has been really positive for her, she hopes it is for others too. Just remember, to set reasonable timelines for whatever you want to accomplish. And keep an eye on your energy and stress level. Take breaks for your mental, emotional, and physical health when you need to. The goal will still be there to work toward after you recharge.
What are some of your hobbies?
In her free time Stephenie enjoys writing, painting, and making jewelry. When she’s not doing that, you’ll probably find her cuddled up by the fire with a good book or taking a bath to relax. She also loves spending time with animals and traveling with her husband to see new/favorite places and have adventures together. She likes to cook and decorate; take opportunities to spend time with friends and family. In warmer weather, she’s either in the pool or in the garden.
***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.
NPR: Activist Judy Heumann led a reimagining of what it means to be disabled
By SD Network, 2023-03-06
The disability community is mourning the passing of disability rights activist Judy Heumann. Judy played an integral role in the disability rights movement and passing of the Americans with Disabilities Act.
DISABILITY SCOOP: Nation’s disability services at breaking point, report finds
By SD Network, 2023-03-06
After warning for years of an impending collapse in the disability services system, advocates say that the crisis is here. Threats to community-based services due to workforce and funding shortages have existed for decades, but the threat has escalated to dangerous levels, forcing providers to deny access to crucial care and other support services for people with intellectual and developmental disabilities.
The Wisconsin Caregiver Crisis Coalition is made up of aging and disability advocates, provider associations, workforce coalitions, workforce development agencies, IRIS consultant agencies, Aging and Disability Resource Centers and fiscal agencies. The coalition has come up with a budget proposal that would address many aspects of the caregiver crisis. We encourage you to use this when you talk with your legislators
Caregiver Crisis Coalition Budget Proposal Budget Proposal HQ32023p (1).pdf, 12MB ∞
“Stranger danger” is something parents teach their kids starting at a young age. Don’t talk to people who you don’t know. Never go with somebody you don’t know. Always tell an adult you know if a stranger tries to do something to you. The list goes on. Parents do this to try to protect their child. As kids grow up, they learn who are the people they can trust, and they develop a sense of people who may not be good to trust. As adults, we know right from wrong and, in most cases, have a pretty keen sense of who we can and cannot trust. Until we get to know a person, we often put a guard up when we’re around her/him. We’re careful about what we say and do. Depending on the circumstances, gaining trust can be challenging. For people with disabilities, trusting people is often a unique challenge.
As I’ve explained in many previous entries, I rely on assistance from caregivers to complete all of my basic needs every single day. Simply put, I depend on assistance from people to live. Having to so heavily rely on people, I often find myself constantly “on guard.” When you need assistance doing tasks you need to literally survive, you have no choice but to put a tremendous amount of trust in others. I didn’t realize it at the time because I was so wrapped up in the idea of going to college, but starting at Whitewater was when I first began really putting a lot of trust in people besides my family and friends. Not only did I have to trust that the care agency was going to find people to fill all of my shifts, I had to put complete trust in the workers who were assisting me (and when I first started, I didn’t even meet the person until their first shift). Granted, there were a few mishaps along the way, but, thinking back, I don’t remember having too many trust issues with people while I was in Whitewater. A big reason was because most of my workers were college students as well, so it was like I was just hanging out with friends.
After graduating college, I moved back in with my parents. As I’ve explained in previous entries, during that time, we tried having different care agencies come in. While it was uncomfortable for my parents to have people come into their home and do my cares, they understood it was what needed to happen. This was when we first realized what a struggle finding care was going to be. Not only did we have lots of no shows, but we also had some sketchy people coming in. I remember one time, a worker was making me dinner, and I saw her literally grab some lettuce from the bowl and eat it! Obviously, it was just lettuce and we had plenty of it, but it was more the point that she not only felt It was ok to sneak food, but she also thought she could eat while feeding me. If she felt it was ok to take food, what else would she have taken? There were some other issues with this person, so I had to tell the agency they couldn’t send her anymore. That’s just one example.
When I moved to Oshkosh, I started with a new agency. When you have new caregivers, your trust level always starts at zero. I’m always on guard until I get to know a person. I fortunately had pretty good luck with the first agency I had in Oshkosh. I’m not sure whether or not they did background checks, but the workers were pretty decent. If I had a problem with a with a worker, the agency would try to work with the person and I to resolve the issue, but, ultimately, if it wasn’t working out, the agency would take the worker off my schedule.
After five years with that agency, I had to switch to a different agency. This was truly when my trust radar heightened. I don’t know how to say this without sounding judgmental, but, after working with caregivers for so many years, I have an uncanny way of reading people. Within five minutes of meeting a caregiver, I can usually tell if the person is trustworthy or not. With the agency I switched to, none of the workers were what I consider trustworthy. However, because those workers were the only people the agency had to help me, I had no choice but to have them help me. Low and behold, my instincts were right. In the eight months I was with the agency, I had theft happen more than one. Being the curious person I am, I began looking the workers up on CCAP, and I was shocked what I found. The agency couldn’t have done background checks. Yet, these people were in my apartment with me alone. After eight months, I had had enough and switched to Self-Directed Personal Care through IRIS. The week before I left the agency, one of the workers who had the majority of my shift came in and told me that she had been just released from jail! That confirmed that I made the right decision to leave the agency.
Doing Self-Directed Personal Care, I’m able to hire the people I want. Before even interviewing people, I look each applicant up on CCAP to make sure they would pass the background check. When we interview people, I usually have a weird sense of whether or not the person is going to work out. However, unless there are multiple red flags during the interview, I usually have them fill out the paperwork and hire them. Given the caregiver shortage, I can’t be too picky. Unfortunately, many times after a training shift, people end up not working out. The training is hands-on so the person can experience what working with me physically entails. Another worker is here during the training to explain everything to the person.
While the veteran worker is explaining everything to the new person, I’m evaluating the person. I have to think about whether or not I’m going to feel safe and comfortable with the person alone. I should preface this by saying that the first couple of shifts are rough—they always are. However, during the training, I have to determine I’m going to be safe with the person. As hard as it is, I try to be very open-minded when people train. I have to remember that it’s just as uncomfortable for them as it is for me. I have to really try to read the person and decide if it’s going to work.
Most of the time, I usually try to give people the benefit of the doubt. However, sometimes, you have to trust your gut. I found myself in this situation a few weeks a few weeks ago. The person was one of the few applicants who applied and passed the background check. We interviewed her and had her fill out the paperwork. Again, looking back, I should have trusted my instincts, but it’s hard because I desperately need workers. After she was approved, she came to train and her true colors came out. She didn’t listen to anything the worker or I were saying. She kept wanting to leave on a break when I was in vulnerable situations (for example, she wanted to leave when I was on the toilet which would have been a disaster if she were alone and decided to leave—I have no way of opening the door or using the phone when I’m in the bathroom). She also randomly left for 45 minutes and had no idea where she was. Those coupled with some other pretty major red flags made me really question what to do. I desperately need workers, but is it worth jeopardizing my safety and causing me stress of wondering what would happen on her first shift alone? In this case, it wasn’t. I decided it was best to let her go.
Trusting caregivers to assist you with your personal needs is an interesting life many people with disabilities live. As vulnerable as I am not only needing assistance to complete my basic needs, but also being nonverbal, I have to put an enormous amount of trust in people who I don’t know very well. Over the years, I’ve learned what to let go and also when I need to take action to protect myself. Sometimes, it’s exhausting being “on guard” all of the time, but it’s what I have to do to remain as independent as possible!
***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 Survival Coalition put together an analysis of the Governor's budget proposal from a disability perspective.. We encourage people to use this when they talk what their legislators.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Call for Presenters
By SD Network, 2023-03-01
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Are you interested in presenting at the 2023 Self-Determination Conference? We are seeking session proposals for Tuesday, October 17 & Wednesday, October 18, 2023. There are three ways to complete the proposal form and submit it by noon on May 12, 2023 to:
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WISCONSIN DEPARTMENT OF HEALTH SERVICES: National Assistive Technology Awareness Day
By SD Network, 2023-03-01
On March 1, the U.S. Senate will pass a resolution to raise awareness and celebrate National Assistive Technology (AT) Awareness Day. The day honors people with disabilities who use AT to access their education, workplace, community, and recreational activities. The day also recognizes the leadership of the Assistive Technology Act programs whose teams strive to help millions of individuals acquire low-cost and often no-cost AT in all 50 states and territories.
Join us to celebrate #ATAwarenessDay!
Alice Wong, founder of the Disability Visibility Project is acutely aware of the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work. In this commentary, she writes, “Conversations by policy experts and advocates about the caregiving crisis can be too abstract, and any meaningful structural and cultural change must acknowledge the tensions, human toll, material consequences, complexities and nuances about care from the people who provide and rely on it.”