News

Self-Determination Network News:

July 2023

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

Registration is Now Open 

Registration is now open for the 2023 Wisconsin Self-Determination Conference which will be held October 16th-18th. Join us in-person at the Kalahari Resort in Wisconsin Dells or virtually for this year’s conference. The theme is Be Curious: Explore the Possibilities. Check out the brochure and website for more information. Early bird registration ends August 15th. Register today!

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 Kevin. This music-loving father loves watching his son succeed. He not only advocates with his son, but, as the director of an IRIS Consultant Agency, he also works with others with disabilities to ensure they have the support to be able to live and work in the community. Check out this month's Member Spotlight to get to know Kevin.   

Who should we shine the spotlight on next?

Stacy’s Journal

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:

• Partners in Policymaking: Are you ready to take the next step in your advocacy journey?

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:

• Resources for Older Caregivers: The Centers for Medicare & Medicaid Services recently released a collection of resources designed to support state Medicaid and partner agencies in developing the supports and services being delivered to adults with I/DD and their aging caregivers. Take a look at these and pass them on to others who may find them beneficial.
• Employment Funding Opportunity: The Social Security Administration has announced a new funding opportunity for conducting interventional research to support its programs. They are seeking applicants in five key areas related to barriers to employment. Applications are due July 31st.
• Concerns over Medicaid Disenrollment: According to data, more than a million Medicaid beneficiaries have been disenrolled. Learn about one of the main reasons this is.
• CrossFit Class: A gym in Waterford has started a CrossFit class for people with different abilities. Find out more about the class.
• Digital Health Technologies: A new survey shows that older adults plan to use more assistive health-related technologies as they age. Read about what else the survey revealed.
• Accessible Hiking Trails: Hiking is becoming a very popular summer activity.  Take a look at this guide to accessible hiking trails in the U.S.
• Technology Accessibility in the Workplace: In today's world, technology plays a major role in almost every facet of every company. As we know, technology also enables people who have different abilities to be able to be productive in the workplace. Learn why it's crucial that employers make sure that technology equipment is accessible to all employees.
• Independent Living Program Pilot: The Wisconsin Department of Health Services is initiating an Independent Living Supports Pilot program, aimed at providing resources to eligible residents, enabling them to live independently at home. Find out more about this program.
• Family Care and Partnership Renewal Survey: Wisconsin Department of Health Services is in the process of renewing the Family Care and Partnership waivers. They are seeking input about these programs. Please take this survey by August 1st.
• New Program at Green Bay Airport: Austin Straubel Airport in Green Bay recently became the second airport in Wisconsin to participate in the Hidden Disabilities Sunshine Network which is a program that provides discreet assistance to people who have hidden disabilities. Read about how the program works.
• Listen Now: Wisconsin Public Radio recently did an interview with two disability service providers about how the community serves people with disabilities Listen to what they suggest would help communities better serve people with disabilities.
• Talk of Updating SSI Limits: The Supplemental Security Income (SSI) program for low-income elderly and disabled people has the strictest savings limits of any federal program. Eligibility is limited to people who have only $2,000 (or $3,000 for couples). Read about how most people feel this isn't enough for beneficiaries to weather an emergency or provide stability.
• Journey of a Lifetime: A young woman from Mazomanie who wasn't supposed survive through infancy is on a journey of a lifetime. Learn about her quest to compete in Miss Wheelchair America.

Upcoming Events 

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

• Family Care And Family Care Partnership Waiver Renewal Online Public Input Session: July 25th, 3p.m. to 5p.m., Online
• Family Care And Family Care Partnership Waiver Renewal Online Public Input Session: July  26th, 6p.m. to 8p.m., Online
• Webinar: Basic Formatting: July 31st, 3p.m. to 4p.m., p.m., Online
• Webinar: Designing For Children: August 3rd, 1:30p.m. to 3p.m., Online
• Webinar: Building An Inclusive Museum From The Ground Up: August 10th, 1p.m. to 2:30p.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.

Annie Heathcote, a lifelong Mazomanie resident, is on a journey of a lifetime. Born with spinal muscular atrophy, she wasn't expected to make it through infancy. Now, this 24-year-old graphic designer is getting ready to compete for Miss Wheelchair America.

Read more

The Supplemental Security Income (SSI) program for low-income elderly and disabled people has the strictest savings limits of any federal program. Eligibility is limited to people who have only $2,000 (or $3,000 for couples). This is not enough for beneficiaries to weather an emergency, let alone provide stability or save for the future. A higher limit would encourage — rather than penalize — saving and allow people to retain savings to use when they really need those resources. This brief analyzes several ways to increase SSI’s resource limits.

Read brief

Wisconsin Public Radio recently did an interview with two disability service providers about how the community serves people with disabilities. They talked about what things are better than they used to be, what areas still need improvement, and how to avoid being "ableist" toward people with disabilities.

Listen to the interview

Austin Straubel Airport in Green Bay is part of the Hidden Disabilities Sunshine Network. The Network provides a way for people with hidden disabilities to discreetly let others know that they need some extra help. Austin Straubel is the second airport in Wisconsin to participate in the program.

Read more

Tall. Short. Heavy set. Thin. Gay. Straight. Wealthy. Poor. African American. Caucasian. Indian. Hispanic. Elderly. Young. Disabled. Non-disabled. There are many different types of ways we categorize people. In today’s day in age, we are taught not to discriminate against any type of minority. While, in theory, being non-discriminatory is certainly correct way, we all discriminate. Most of the time, we don’t even realize that we’re doing it. It’s human nature to favor people who have similar characteristics as you. People have to make conscious efforts not to have bias towards people who have different characteristics than they do. The question is often brought up debating whether or not giving minorities priority over certain things. According to Google, affirmative action is “a policy aimed at increasing workplace and educational opportunities for people who are underrepresented in various areas of our society.” People with disabilities is one of the minorities affirmative action often affects.

Late last month, the Supreme Court ruled against a legal precedent that allows college and universities to use race as a factor when deciding admission. Basically, it means they can’t accept or deny a person based on race. The specific case refers to Harvard University and North Carolina University, but the ruling will affect all universities. Previously, colleges could take race of applicants into consideration when deciding admission. 

I hadn’t been following the case closely, and when my mom texted me about it, my first reaction was, “well, I agree with that… Why would people be able to make decisions about admission based on a person’s race?” Initially, when I learned about the concept of using a factor physical characteristic in determining admission to universities I immediately thought “well, my disability wasn’t a factor in my acceptance to UW-Whitewater, was it?” It was over 20 years ago that I applied, but I don’t remember checking a box saying that I had a disability. Now, yes, I did mention that I had a disability in the essay, but I can’t say whether or not it was a deciding factor in my acceptance.  While I certainly hope that the decision wasn’t solely based on the fact that I had a disability, if the people who read the essay were positively influenced by my essay, that’s fine.

I’ve been thinking about this a lot since the court decision was made. Is it fair to give bias about certain things to minorities? I can see both sides of the argument. On one hand, I don’t think it’s right to give opportunities to people based on physical/ethnical/sexual characteristics. On the other hand, though, people in minorities deserve a chance, and that chance may only happen because of affirmative action. I believe it’s a really fine line. I don’t think it’s right that people who are in minorities be awarded opportunities just so schools or businesses can meet a certain quota; however, I think it’s really important that places take the whole individual into consideration when making decisions. To me, the whole individual means every aspect of the person. In other words, don’t just base the decision on a sole factor, but rather, consider things like their background, skills, traits, etc… collectively to decide.

Have I benefited from affirmative action? Absolutely—without a doubt. Working in the disability advocacy field, it’s kind of unique. While I know that I’m employed by the three organizations I am because I do have a disability, I’m hoping that’s not the sole reason why they hired me. I hope they see other characteristics and traits in me that make a good employee. In this situation, my hope is that they see my disability as a bonus as I can use my personal experiences to help others. I can’t say for sure, but I think the organizations I work with do see it that way.

The recent ruling is probably viewed as a disappointment among most in the disability community. While, yes, I understand why it was important to have affirmative action in universities, I also think it’s a great opportunity for schools and businesses to reevaluate the criteria they use to make important decisions. There needs to be a balance between having the skills or traits needed to fulfill the requirements of the particular opportunity and taking life circumstances into consideration. It’s truly unfair to make a detrimental decision unless both concepts are considered together. Unfortunately, I think it will be quite some time before that becomes the norm in society, but I have hope as we move toward a more inclusive country!

***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.

Meet Kevin. This music-loving father loves watching his son succeed. He not only advocates with his son, but, as the director of an IRIS Consultant Agency, he also works with others with disabilities to ensure they have the support to be able to live and work in the community. He tells people that it’s OK to fail sometimes because failures often lead to some of life’s most important lessons. We’re so fortunate to have Kevin as a member of the Network!

What's your story?  Tell us a little bit about yourself.

Kevin is the Director at Connections, an IRiS Consultant Agency.  He’s the father of Tyler, a 26-year-old with intellectual disabilities. He shares that since Tyler was born, they have had expectations for him and expected those that interacted with Tyler to also have expectations. Tyler has his own shredding business. “We advocate with Tyler, not for Tyler,” he says. 

How are you involved with self-determination? Why did you join the SD Network? 

Kevin explains that when Tyler was born, they knew they needed to educate themselves to ensure he would have the best quality of life possible.  He applied for and was accepted to the Wisconsin Board for People with Developmental Disabilities (BPDD) where he spent eight years on the Board including two years as Chair. “I learned a great deal that not only enhanced Tyler's life, but also those we got to know and share things via social media,” he says. He joined the SD Network to remain informed about what is going on and to be able to share some of the experiences that we found beneficial. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Kevin explains that Tyler has completed his first couple of shredding jobs and generated income. “When I see how excited he is while shredding, I know that it is giving purpose to his life,” he tells us. Working in the IRIS program, he explains that he sees great successes of people living independently and having community integrated employment with the necessary support.   

What tip or resource would you like to share with people who want to be more self-determined?

Kevin reminds people that it is OK to try and fail. He explains that the best lessons he has learned in life are from his failures. Never be afraid to ask for help. “There are times I need to ask for help and it helps me make a more informed decision,” he says.   

What are some of your hobbies?

With the pandemic slowly moving behind us, Kevin is looking forward to listening to live music again—it does not matter if it is a church festival, Summerfest stages or a major concert.  If things work out, we plan to go to either Memphis or Nashville in August.

***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 Department of Health Services (DHS) is renewing the Family Care and Family Care Partnership waivers. A waiver is a special set of rules that allows us to have Medicaid programs like Family Care. For Family Care, it includes the 1915(b) and 1915(c) waivers. With them, we can fund more services and supports to help Family Care and Family Care Partnership members stay in their homes and communities.

We must renew the waivers every five years. This is a chance for us to make Family Care and Family Care Partnership better between 2025 and 2030. We can improve policy, services, and other things that can make the programs better for members.

How can I get involved?

Take our survey! We want Family Care and Family Care Partnership members, families, caregivers, providers, managed care organizations, advocates, and other partners to share their thoughts.

We want to know how Family Care and Family Care Partnership can better serve our members. This is a chance to share your ideas about services, supports, and other areas of care. It should only take 10 minutes. It’s available in English, Hmong, and Spanish. Please submit your responses by August 1.

Take the survey

 The Wisconsin Department of Health Services is initiating an Independent Living Supports Pilot program, aimed at providing resources to eligible residents, enabling them to live independently at home. The program is designed to offer short-term services and support to older adults and individuals with disabilities.

Read more

In today's world, technology plays a major role in almost every facet of every company. As we know, technology also enables people who have different abilities to be able to be productive in the workplace. This is a good article explaining why employers need to make sure that employees with disabilities have the accessible technology they need to be able to succeed in the workplace.

Read more