News

The Kaiser Family Foundation recently released a report on a study done on how unwinding public health emergency policies are affecting people with disabilities. A survey was done in all 50 states and the main issues brought up were enrollee confusion and staffing shortage. This report includes lots of interesting statistics. 

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More than half of U.S. states did not support direct care workers with hazard pay or paid sick leave policies during the first 18 months of the COVID-19 pandemic, a new study from the New York-based direct care worker advocacy organization PHI revealed.  Researchers with PHI also advocated for the need to develop a national compensation strategy for direct care workers that creates a “livable, competitive wage” for this workforce.

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The pandemic only made the caregiver shortage worse. Family caregivers are forced to sacrifice their ambitions to take care of loved ones. This has taken a major toll on people. Older adults are having to take care of their parents. Facilities that provide some relief are closing because they can't find enough workers. Experts say unfortunately there's no end in sight. 

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• Adults 18 and over with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to complete the survey.
• The survey should take about 20 minutes to complete.
• Responses are anonymous.

Self-Determination Network News:

July 2022

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

Registration Now Open 

The 2022 Self-Determination Conference will be held October 17-19 at the Kalahari Resort in Wisconsin Dells. Join us for one of the largest events for people with disabilities and people who support them. There is an option to attend virtually as well. Register now!

2022 Diehard Award Nominations 

Do you know someone who goes above and beyond to improve community supports for individuals with disabilities?  Do they support self-determination?  Nominate them for a Diehard Award in one of the following two categories: Professional Advocate and Self-Advocate/Grassroots Advocate. 

A Diehard is an individual who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a steadfast commitment to the principles of community integration and self-determination. Diehards go above and beyond to make sure everyone is counted. Awards will be presented Tuesday October 18th at the Self-Determination Conference. Nominations due by noon on August 15th. Nominate someone 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 Cheryl. Not only is she a phenomenal photographer, she’s also a best-selling author. She believes self-determination is the key to creating the life just as we want it to be. Check out this month's Member Spotlight to get to know Cheryl.   

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:

• Continued Conversation about COVID-19

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:

• Electronic Visit Verification Impedes Quality and Quantity of Care: In 2016, the CURES Act required all Medicaid-funded Personal Care Services and Home Health Services to implement Electronic Visit Verification. States have been working on getting a system set up; however, several issues have come up. Read about how a impact study found EVV tends to reduce quality and quantity of care. 
• Funding Deadline Extended: The Department of Health Services announced that states would have an additional year to use the funding from the American Rescue Plan to enhance and expand home-and-community-based  services. Find out why this is great news. 
• COVID Changed the Way the World Sees Disability: The pandemic has opened many people's eyes about disability. Learn about how many found their lives drastically changed and learning what it's like to have a disability. 
• Disability and the Digital Divide: The Office of Disability Employment Policy in the Department of Labor has released a paper on the digital divide and disability. It discusses details in three main categories: employment outcomes, home internet subscriptions, and internet use. Find out why people with disabilities tend to use the Internet less. 
• Medicaid and CHIP Report: The Medicaid and CHIP Payment and Access Commission released its 2022 report to Congress with various recommendations on how to improve Medicaid and CHIP.  Learn what those recommendations include. 
• Take a Survey:  Are you a person with a disability who is working for an employer? Take this survey to about the wellness programs you participate in. 
• Advocacy Priorities Guide: The National Council on Independent Living released its 2022 Advocacy Priorities Guide. Check out this great resource. 
• Watch: The Wisconsin workforce shortage is worsening partly because family caregivers are being overlooked. In this interview on Wisconsin Eye, experts discuss survey results, tell us what employers are saying, and share recommendations for improvement.
• Inaccessible Sidewalks and Streets: The Americans with Disabilities Act was signed into law almost 32 years ago, but, yet, there are several public places that still aren't accessible--especially streets and sidewalks.  Read about what advocates hope the infrastructure bill will help with. 
• Accessible At-Home COVID Tests: The Biden-Harris Administration has launched a new initiative to expand the availability of at-home tests that are more accessible for people who are blind or have low vision. Learn about how they work. 
• Report Illustrates Increased Risk of COVID for People with Disabilities: The CDC recently released findings from a comparison data on COVID cases and hospitalizations for two groups of Medicare beneficiaries. Learn what the report found. 
• Program Helps Farmers Find Success: There are about 38000 farmers who have a disability or limitation in Wisconsin. Learn about a program that helps them succeed. 
• Social Security Benefits Expected to Increase: People who receive Social Security and Supplemental Security Income will likely see a significant increase in their benefits next year. Find out why. 
• Accessible Housing Training: The U.S. Department of Housing and Urban Development's Office of Fair Housing/Equal Opportunity (FHEO) will provide comprehensive virtual training on accessibility requirements of the Fair Housing Act for residential elements and spaces, including kitchens, bathrooms, routes, public and common-use areas, and structures Find out when more about this training. 
• Court Ruling Concerns Advocates: A recent ruling by the Wisconsin Supreme Court bars drop boxes and restricts how voters return their ballots. Read about why this is concerning. 
  

Upcoming Events

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

• Webinar: ADA Anniversary Update: July 18th, 1p.m. to 2:30p.m., Online 
• Meeting Of The President's Committee For People With Intellectual Disabilities: July 28th, 11a.m. to 4p.m. Online
• Webinar: Accessible Recreational Boating Facilities And Fishing Piers And Platforms: August 4th, 1:30p.m. to 3p.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.

Meet Cheryl. Not only is she a phenomenal photographer, she’s also a best-selling author. When she started working with people with disabilities, she didn’t realize that those experiences would help her through her own journey. She learned that self-determination is the key to creating life just as one wants it to be. We’re so fortunate to have her as a member of the Network.

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

Cheryl lived on a farm until she was in fourth grade when they moved to Cambridge WI.  She graduated from high school there and went on to begin her journey of volunteering, supporting, caring for, admiring, and becoming friends with people with disabilities.  “I’m grateful for these experiences for when I was introduced to disability myself, those experiences helped me make it through it all,” she shares.  In 2008, she graduated from the UW-Madison with a Bachelor’s of Science degree in Rehabilitation.  She has enjoyed working with DVR, BPDD, Independent Living Council, AchieveAbilities, and the Employability Project.  She also served on the Board of Directors for Access to Independence and Movin’ Out for many years.  “I retired last year and I’m enjoying every moment of every day,” she says.

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

“Through what I call seeing into the inside of disability, I saw how self-determination is the key to creating a life just as one wants it to be,“ Cheryl says.  She explains that having met the amazing individuals she has, and to have been a part of their amazing journeys, is the most exciting thing she has had the honor to witness.

Having been introduced to disability herself in 1997, she had to speak up to gain what she needed to become what she now and to what she has yet to accomplish.  When she saw how the SD Network encourages, guides, supports, and celebrates self-determination, she had to join.

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

Recent very exciting news for Cheryl is that she wrote and recently published an Amazon best-seller “Silencing the Noise of Disability”.  The book covers her experiences after being introduced to disability and how she healed.

“It took a lot of work and a lot of support to accomplish this, but practicing self-determination made my dream come true,” she says.

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

“When it comes to how we want to live our lives, we are the ones who know exactly what we need to do it.  We know what works, and what doesn’t, we are the experts of our lives.  So, don’t give up looking for and getting what you need to be all you can be.  It’s your life and you have every right to find the perfect fit,” Cheryl tells us. 

She thinks that one of our greatest resources are those we know.  She explains that those who have been with us and for us can support, guide, and fight alongside of you.

What are some of your hobbies?

Cheryl is an avid photographer and rarely does her camera leave her side.  Anything outdoors in any season, is my greatest joy.

She loves road trips with friends, or just by myself, as they always lead to amazing experiences.

When it comes to hobbies, I like to say, life is one of mine.  I get to form it, build it, play with it, share it, and experience it with pride, joy, and a whole lot of happiness,” she says!

***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.

A recent ruling by the Wisconsin Supreme Court bars drop boxes and restricts how voters return their ballots. The 4-3 ruling means that only voters can return ballots themselves in mailboxes or in-person at their clerk's office. This concerns disability advocates because many people with disabilities need assistance returning their ballots. 

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The U.S. Department of Housing and Urban Development's Office of Fair Housing/Equal Opportunity (FHEO) will provide comprehensive virtual training on accessibility requirements of the Fair Housing Act for residential elements and spaces, including kitchens, bathrooms, routes, public and common-use areas, and structures. FHEO will also provide an overview session on the accessibility requirements of the Fair Housing Act, including a detailed look at the seven technical requirements, and key information and resources needed to successfully understand and comply with the requirements of the Fair Housing Act. Architects, designers, civil engineers, builders and developers, housing program specialists, property managers and owners, and disability advocates are encouraged to attend.

Read more

Ever imagine what a perfect world would look like? A world where everyone would see eye-to-eye, where there’d be no right or wrong, where everyone was treated equal? What would that even look like? In today’s day and age, it’s hard to even fathom.  What would a perfect world even look like? Would there be sickness? Would there be disagreements? How would every person be treated? Would there be disability? If so, what would ideal services look like? All of these are deep questions to ponder and there isn’t a right answer.

As I mentioned before, I’m not an overly religious person, but I do believe that there is a reason I survived complications from a traumatic birth. I believe I won’t truly know why until I reach the other side, but there is a reason why I survived. Admittedly, when things get hard due to having cerebral palsy or not having sufficient services to help me live the life I desire, I think about this. Thoughts such as, “why can’t I get the support I need?” or “why do I have to deal with this?”  often creep into my head when things aren’t going right. Of course, it does no good to dwell on it, but the fact is that it’s unavoidable.  

The Americans with Disabilities Act was signed 32 years ago this month. Laws such as this have made a huge impact on the lives of people living with disabilities, but, yet, many people struggle to get long-term care support services. I’ve written about my care situation many times.   While it’s been a few months since I’ve written an entry about it, things haven’t improved. For over six years now, I’ve been hiring my own caregivers through IRIS Self-directed Personal Care. In that time, I’ve experienced the whole spectrum of craziness. Some of the stories you wouldn’t believe. The bottom line is still I can’t get reliable workers. Practically every day, I’m dealing with trying to fill a shift because someone called in. My parents continue to be my saving grace, but this has put a strain on our relationship too. They’re retired and want to travel all over the place as they should be able to do, but, because of my situation, they can’t leave me behind. This has resulted in arguments because they want me to go with them on multiple longer trips (because they can’t risk leaving me hanging if someone calls in or doesn’t show), but I don’t want to be gone that long for multiple reasons. First and foremost, if I’m gone a longer length of time, I risk losing the workers I do have—even with the low wages they make, these college students count on the income. Second, I have a job and commitments I need to fulfill. Yes, most of it is remote, but I have an elaborate computer setup I use at my apartment. When traveling, I have an iPad that I bring along that I can attend meetings on, but I can’t complete what I need to do on it. “I hate being a burden,” I told my mom during one of our recent discussions about this topic. Of course, she told me that I’m not, but I explained that I know I am. This seems to be a frequent conversation these days.

Long-term care services go beyond daily care needs. There are many disparities among things such as housing, transportation, therapy services and medical equipment. After direct care, housing and transportation are the two most talked about disparities in the disability community. There aren’t enough accessible housing options for those with disabilities. If people want to live in a non-segregated setting, finding something accessible is nearly impossible. I’m fortunate to have found my apartment over 10 years ago. While it started out as being a complex for those with disabilities, it has since changed to a complex for people who receive housing assistance—not only people with disabilities. Personally, it’s still not the ideal situation for me because I don’t think of myself that way (in my opinion, I’m only considered to be low income because of the restrictions I have due to my disability), it’s better than nothing. Transportation continues to be another issue for people with disabilities. Simply put, there aren’t enough accessible options available. I’ve had to limit my trips out and about because the only accessible cab in my city is so unreliable.  Disparities in treatment options and equipment also continue to be a challenge for many people with disabilities. Limiting the number of therapy sessions one can receive because it’s not considered “rehabilitative” is ridiculous. In my opinion, if therapy helps a person feel better and possibly prevents losing more function, they should be able to continue with therapy. These services are necessary to keep a person as healthy and, in some cases, as independent as possible.

In a perfect world, assuming disability a part of it (we could debate that issue forever and never come to an agreement), care would be something that is readily available to those who need it. Caregivers would get paid adequate wages and receive benefits and training. People who needed care wouldn’t have to fight tooth and nail to get dependable hard-working people to assist them with their basic needs. All long-term care services would be available to those who need them without having to jump through a million hoops to justify you need them.

Unfortunately, we know that a perfect world doesn’t exist and probably will never will. This means that we have to continue to advocate for what we deserve. Often, when we constantly advocate for what we feel what’s right, it feels like we hit dead-ends; like we’ve done all we can, but things aren’t changing. It’s in those challenging times that we have to continue to push ourselves to fight for what’s right. There may never be a perfect world, but knowing our efforts will impact generations that come after us should give us motivation to continue the fight!

***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.