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A hang nail. A sprained ankle. An ear infection. Nasal congestion. Influenza A or B. There are literally thousands of different types of health issues that human beings could have. Some people are born with them; while others are acquired. Many health issues short term, while others are lifelong. Some conditions degenerative meaning symptoms get worse over course of one’s life. Others are not degenerative—the condition doesn’t get worse. Some issues have a simple fix; while others are very complex requiring a huge amount of medical interventions. Many conditions are curable; while others are unfortunately terminal. It’s likely that every single person has experienced some sort of health problem in their lifetime. It’s just part of life-people get sick and injuries are going to happen. Often, people who have disabilities experience multiple health related issues. Whether the disability is congenital or acquired, many people experience numerous medical problems during life.

“You sure know your body,” my mom said after leaving Urgent Care recently one Sunday. Admittedly, I feel like a little kid sharing this, but I somehow ended up with an ear infection of all things. In many previous journal entries, I’ve written about the ongoing medical issues I deal with. Theoretically, cerebral palsy is non-degenerative; however, due to the strain it causes on the body, we do age faster than the average person. For reasons we’ll never know, my body has taken a beating the last decade and a half or so. So much so that my parents often get frustrated when I tell them that I have another issue going on. I know that they see me as more of a hypochondriac in recent years, but I don’t blame them–it has been a lot.

When I feel the slightest ailment or change in my body, I always let people know about it right away. There are a couple reasons I do this. First and foremost, the slightest ailment or change in my body usually throws my muscle tone completely off making things take even longer for me to do. Second, if something were to happen where I was no longer able to communicate, I want to make sure people had a heads up about whatever was going on. That sounds very dramatic, but, in my circumstances, it’s about safety. An example being if I feel sick to my stomach before I go to bed, I always tell my mom so that if I text or call her in the middle of the night, she’ll know that I got sick and need help. Admittedly, I have to be careful with this one because it has backfired on me, but another reason why I tell my workers if I’m not feeling well is so that they can choose to glove up and wear a mask. It’s common courtesy to do that.

Another reason why I may seem hyper vigilant is because I have so many people who helping me with personal cares. Often, especially when I have nursing students or CNAs, workers notice a change or ailment on my body that I didn’t even realize. Of course, they make me aware of the issues which I’m grateful for, but then I’m obligated to do something about it. Most people ignore an ailment until it becomes bothersome; however, many times I can’t do that because I have people suggesting I do something about it.

After nine surgeries, multiple ER/Urgent Care visits, and numerous nights in the hospital in the last decade or so, I have a pretty keen sense of when I need to be seen by medical professionals. After five emergency gastrointestinal surgeries, I know the specific pain and when I have that, there is no messing around – I need to get to the emergency room right away. I also have a pretty good sense with other ailments too. I won’t go into specifics, but I’ve had dealt with quite a few other health issues in the last few years as well. For reasons beyond me, I have also been able to gauge the severity of those pretty accurately. I’m able to tell whether or not I need to be seen by a doctor or if I will be able to treat it with assistance from caregivers. If I need to be seen by a doctor, I’m able to differentiate between the need to go to the emergency room as opposed to going to Urgent Care or making an appointment at a regular doctor’s office. It differs from family to family, but I was brought up understanding that the emergency rooms are only meant for life-or-death circumstances. I’ve found myself in those circumstances too many times. Mainly because of gastrointestinal issues, but there have been a couple issues related to cerebral palsy that landed me in the in the emergency room. In most of these cases, doctors sent me there so I could get immediate tests for whatever symptom I was having.  Obviously, the symptoms were greatly impacting my life and couldn’t wait for appointments to open up or insurance pre-approvals.

I really try not to be overly dramatic about my health, but it’s hard not to be. Given I have to balance so many different factors, I’d rather be safe than sorry. My instincts have been right 99% of the time. While I don’t like being seen as overly dramatic sometimes, I’ve learned to trust my gut when it comes to my health. My uncanny instinct has saved my life more than once!

***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.

As the start of 2024, many issues are at play that will affect Medicaid coverage, financing, and access. Medicaid is the primary program providing comprehensive health and long-term care coverage to one in five low-income Americans. This article explains what else to watch for in Medicaid coverage in 2024.

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Meet Chad. This rock climbing fanatic volunteers his time doing all sorts of advocacy things. He believes getting involved in the community is the key to being self-determined. We’re so fortunate to have him as a member on the Network!

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

Chad is a disability advocate in the Madison area.  He currently lives independently in his own apartment and receives supportive homecare.

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

Chad wants to help empower people to have self-determination by helping advocate in our community. “I think it’s important for people to have self-determination to advocate for themselves and to be the most independent they can be,” he says.

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 Chad is that last year he became the president of the People First Wisconsin Madison chapter.  He also volunteers for the Youth Leadership Forum. He’s taking Partners in Policymaking this year as well.

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

Chad encourages people to get involved in the community. He explains that it is the best way to be self-determined. “I’ve met a lot of friends through my advocacy journey, and it helps me be a better advocate for myself,” he tells us. 

What are some of your hobbies?

In his spare time, Chad enjoys spending time with his friends, playing video games and going outside when the weather is nice.  He also loves rock climbing.

***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.

Beginning in September 2024, the Wisconsin Department of Health Services (DHS) will require all adult long-term care waiver service providers to enroll with Wisconsin Medicaid through the ForwardHealth Portal.

The new enrollment process is how you will become certified as a Wisconsin Medicaid provider and be assigned a Medicaid Provider ID. The new process is for those who provide services to adults who are older, have a physical disability, or have an intellectual or developmental disability and participate in any of the following programs:

• Family Care
• Family Care Partnership
• Program of All-Inclusive Care for the Elderly (PACE)
• IRIS (Include, Respect, I Self Direct)

The new enrollment process is also for individuals, agencies, organizations, vendors, and sole proprietors who provide services listed in the DHS MCO contract or the IRIS Service Definition Manual. Existing Medicaid providers who also want to provide waiver services must access the Portal to add long-term care waiver programs and services to their current Medicaid provider file.

Individual self-directed support (SDS) workers and participant-hired workers will continue to be Medicaid certified and contracted through managed care organizations and IRIS fiscal employer agents.

Sign up for email updates from the Adult Long-term Care Waiver Service Provider Enrollment Project

You will access the E-mail Subscription Sign-up page on the Portal to sign up to receive emails. You can sign up for as many lists as you are interested in.

Subscribe to the Adult Long-term Care Waiver Service Provider Email list.

• Expanded commitment to broader inclusion of people with disabilities across the research enterprise;
• New opportunities for international research and development activities;
• An increased focus on the enabling or disabling characteristics of the communities in which we live; and 
• Call to the field to pursue work that has an intersectional focus.

For 18-year-old Anna Konkel of Brookfield, rock climbing is just a sport. She's proving anything is possible as long as you believe in yourself. This teen who has a visual impairment is competing with assistance from a volunteer who gives her verbal directions as to how to navigate the wall. "(People with disabilities) can do whatever we put our minds to," she says.

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Kaiser Family Foundation has published a new report, A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023. The report provides insight into one important measure of unmet need for home and community-based services (HCBS) across states.

A few highlights from the report include: 

• The number of states with waiting lists hasn’t changed significantly over time. Currently, 38 states have them.
• As of 2023, there are over 692,000 people on waiting or interest lists for HCBS services.
• Most people on waiting or interest lists for HCBS live in states that do not screen for eligibility before adding people to lists.
• Most people on waiting or interest lists are eligible for other HCBS services, but those services may not fully meet their needs.

Self-Determination Network News:

January 2024

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Disability Advocacy Day 2024

Save the date for the 2024 Disability Advocacy Day on Wednesday March 20th in Madison. It's on a Wednesday this year instead of the usual Tuesday. We'll be sending out information about details and registration in a few weeks. We hope to see you there!

Voting Lunch and Learns

2024 is a huge election year, and the Wisconsin Disability Vote Coalition has you covered! They will be holding virtual Lunch and Learns throughout the year about various voting topics. The first one (register here) is going to be Tuesday January 23rd from 12p.m. to 12:45p.m. It will be about registration and absentee voting. Another Lunch and Learn (register here) will be held on Tuesday February 6th from 12p.m. to 12:45p.m., and the topic will be voting rights and local elections matter. Make sure to keep up to date on voting issues by attending these events.

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 Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. Check out this month's Member Spotlight to get to know Brett.   

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:

• Tools to Help Strengthen HCBS: Recently, the Centers for Medicare & Medicaid Services released new tools that will help improve access for millions who receive home and community-based services through Medicaid. Learn about what these tools will help.
• Concerns over the the Census Questioning: The U.S. Census Bureau is considering changing the way it asks people about disabilities and advocates are concerned. Find out why advocates are concerned.
• Investment in Services: Recently, the Biden-Harris Administration announced actions and new data that will help expand home-and-community-based services.  Read about what actions are being taken.
• Guide to Accessible Travel: Traveling is generally fun and exciting, but it also can be stressful. This is especially true for many people who have disabilities. Check out this guide to accessible travel.
• Request for Comment: The Administration for Community Living is announcing an opportunity for the public to comment on the data collection requirements for the ACL Evidence-Based Falls Prevention Program Information Collection. Comments are due February 12th.
• Be your Best Self-Advocate: You are your own best advocate. Take a look at some great tips for being an advocate.
• Youth Leadership Forum: YLF is a week-long forum for high school with disabilities who want to learn more about leadership, self-advocacy skills, and career awareness. Share this opportunity with students who would benefit!
• What's Behind the Shortage: The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. Watch this news clip about what are the causes of the caregiver shortage.
• ABLE Limit Increase: Starting January 1st, people with disabilities are able to save more money in ABLE accounts which are accounts that allow them to save without jeopardizing their government benefits. Find out how much it increased.
• Digital Accessibility Guidelines: The Office of Management and Budget recently released updated guidance requiring federal agencies to improve their digital accessibility for people with disabilities. Learn about what the guidelines are. 

Upcoming Events 

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

• Webinar: Registration And Absentee Voting: January 23rd, 12p.m. to 12:45p.m., Virtual
• Transition To Adulthood: Healthcare And Advocacy: January 25th, 6:30p.m. to 8p.m., Independence First, Milwaukee WI 
• HSRC Webinar - Expanding Access To Service Coordination: Two Models Of Braiding Funding: January 31st, 1p.m. to 2p.m., Virtual
• Webinar: Designing Accessible Crosswalks: February 1st, 1:30p.m. to 3p.m., Virtual
• Webinar: Voting Rights And Local Elections Matter: February 6th, 12p.m. to 12:45p.m., Virtual
• Webinar: How To Begin And Grow An Adaptive Sports Program And The Resources Needed: February 8th, 1p.m. to 2:30p.m., Virtual 
• 2024 National Self-Direction Conference: March 14th-15th, Marriot Waterfront, Baltimore MD
• Disability Advocacy Day: March 20th, 10a.m. to 3p.m., Monona Terrance and the State Capitol, Madison WI
• Circles Of Life Conference 2024: May 16th-17th, Holiday Inn, Stevens Point WI
• Employment First Conference: May 21st, Kalahari 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.

Can you present to this group? Could you write an article about it? Would you be able to attend this meeting? Could you speak to that group? Are you available to do this? Could you do that? Questions such as these consume our daily lives. Being asked to do certain things and asking others to do things is part of life. Like it or not, humans depend on one another to live. People have a choice whether or not to oblige to the task that they are being asked to do. Depending on the situation, individuals often perform the duty that they’re being asked out of respect for the person who is asking. It may be an employer asking an employee to a task, a family member asking you to do something, or a friend asking you for a favor. Whatever the case may be, you have a choice whether or not to do it. Sometimes, people have a hard time saying no when others ask them to do something. Most of the time, people enjoy helping others and being valued, so turning down an opportunity can be difficult. People who have different abilities are no different—we have a hard time turning down opportunities just like everyone else. The truth is that people who have some limitations probably have a more difficult time saying no to things than the average person because often we can’t do a lot of things due to our circumstances; so, when we’re asked to do something that we’re able to do, we feel immense pressure to say yes.

“I’m going to try to be very intentional about what I say yes to this year,” I said to my mom one night recently. She rolled her eyes and laughed because she knows how hard it is for me to turn down an opportunity. In past journal entries, I’ve written about the importance of feeling valued. Especially when you have some unique challenges, being and feeling valued is a detrimental part of life. However, it’s also equally important to realize when you’re spreading yourself too thin. I also wrote entries about this in years past—often, I say yes to too many things which puts a lot of stress on my body. It’s a fact that everything takes me a lot longer to do things than the average person. Years ago, I read that people who have cerebral palsy exert three times the amount of energy than the average person does.

During a session a few weeks ago, I was telling my counselor about how frustrating it was to be gone from work for so long over the holidays. I explained the situation to her. She then asked me a very good question: why do you hate missing out on work and advocacy so much? I told her it had nothing to do with the financial aspect of it. As we talked more, she figured out that work and advocacy are the things that make me feel valued most. In other words, I often feel useless when I’m not doing some sort of work or partaking in an advocacy activity. Obviously, learning this opened up a whole other thing to work on in counseling, but, in the weeks since, I’ve been really trying not to keep myself busy with work or advocacy projects all the time. I didn’t realize how much I relied on those things to keep me busy.

As I get older, I’m slowly realizing that there’s more to life than always trying to prove that you’re successful. As a person with a significant disability, that’s kind of a tough thing to grasp. I’m always trying to prove that I’m a contributing member of society and my main way of doing that is to engage in as many advocacy activities as possible. However, with some help, I’m realizing that I have other things that people value me for. I’m also learning that it’s okay to take some time to do nothing.

I’ve already turned down two advocacy opportunities this year. They were events that would have taken me hours to prepare for and I honestly didn’t have much interest in either of them. Will I agree to do various advocacy things? Absolutely. I love advocating and helping people. I just have to be selective about what and how much I agree to do. I’m going to try my best to be cognizant of how much I put on my plate. It’s not worth the stress and repercussions it causes.

For some people, turning down opportunities or saying no to things is really hard to do, but life is too short to overwork and stress yourself out. It’s just not worth it!

***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.

• Testing electronic content for accessibility before publishing and including disabled people during the digital design and testing user group process.
• Establishing digital accessibility programs and policies by designating a program manager to define and oversee digital accessibility processes, reporting, tracking, and resolving problems.
• Purchasing accessible products and services.
• Regularly scanning web content to assess whether accessibility requirements are met and prioritizing remediation.
• Cultivating a positive culture of digital accessibility, such as by offering training and education to employees on a regular basis.