Self-Determination Network News:

February 2024

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Please Help InControl Wisconsin's Caring Across Cultures Project

Are you someone who hires direct care workers?  Are you a family member of someone who receives support from a direct care worker?  Are you a direct care worker?  If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them.  We will give you questions to answer, to make it easier for you.

Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)

Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.

What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.

You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.

Here is a document to help you record your own video or audio.  This document will also tell you how to send us your finished recording: CLICK HERE

Need some help?

• You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.

• Are you coming to Disability Advocacy Day, State Capital in Madison, March 15?  We will have recording equipment on site.

Ready to Do This?

• Sign up here! 

• Questions for you to answer when you record yourself

Disability Advocacy Day 2024

Registration is open for Disability Advocacy Day 2024! Join us in Madison on Wednesday March 20th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights! It's free to attend, but you must register by March 1st! Register now!

2024 Self-Determination Conference Call for Presenters

Are you interested in presenting at the 2024 Self-Determination Conference?  Session proposals for are now being accepted for Tuesday, October 22nd and Wednesday, October 23rd, 2024. 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 life. Proposals due by on May 10th. Submit an application 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 Chad. This rock climbing fanatic volunteers his time doing all sorts of advocacy things. Check out this month's Member Spotlight to get to know Chad.   

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:

• New Report: Kaiser Family Foundation has published a new report that provides insight into one important measure of unmet need for home and community-based services across states. Learn what the report reveals.
• Competitive Rock Climber Proves People with Disabilities Can do Anything: For this competitive athlete, rock climbing is just a sport. Find out how this climber excels despite having limitations.
• Long-Range Plan: The Administration for Community Living has released its 2024-2028 Long-Range Plan for the National Institute on Disability, Independent Living and Rehabilitation Research. Learn what it includes.
• New Enrollment Process for Providers: Beginning in September 2024, the Wisconsin Department of Health Services will require all adult long-term care waiver service providers to enroll with Wisconsin Medicaid through the ForwardHealth Portal. Read more about this process.
• Medicaid Issues to Watch: In 2024, many issues are at play that will affect Medicaid coverage, financing, and access. Read about what else to watch for.
• Proposed Changes to the Census Dropped: After strong pushback from the disability community, the U.S. Census Bureau is no longer moving forward with a proposal that could have decreased the estimated disability rates in the country. Learn about what the proposal would have asked.
• Businesses Continue to Fall Short: A recent survey shows that businesses continue to fall short when it comes to meeting the needs of customers with disabilities. Find out what many advocates think that the main problem is.
• Inclusive Town: The town of Union Grove banded together behind a common goal - to give everyone an equal chance by hiring as many people with disabilities as possible. Read about what the town has done.
• Self-Direction Inventory: Applied Self-Direction conducted an extensive national survey of self-direction programs in the United States. Check out the many interesting statistics in the report. 

Upcoming Events 

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

• Webinar: Building Blocks To Effectively Respond To Court Disability Related Challenges And Difficult Situations: February 20th, 1p.m. to 2:30p.m., Virtual
• Webinar: Employee Work Areas And Break Rooms: March 7rh, 1:30p.m. to 3p.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
• 2024 Annual Disability Statistics Conference: Surveys, Statistics, And Identity: March 28th, Virtual or Washington D.C.
• 7th Annual Older Adult Mental Health Awareness Day Symposium: May 2nd, 9a.m. to 4p.m., Virtual 
• 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.

The town of Union Grove banded together behind a common goal - to give everyone an equal chance by hiring as many people with disabilities as possible. There is a school in Union Grove called Shepherds College that specifically teaches students with disabilities. Students live in dorms, learn to be independent, and pick a major to hopefully get a job after graduating just like any other college student in America.

Read more

According to a recent survey, businesses continue to fall short when it comes to meeting the needs of customers who have disabilities. Many people think that the main problem is knowing the steps required. This article explains in detail about all what businesses should doing 

Read more

After strong pushback from the disability community, the U.S. Census Bureau is no longer moving forward with a proposal that could have decreased the estimated disability rates in the country. This proposal would have had a new set of questions that would have asked people to rate their level of difficulty with certain activities. 

Read more

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.

Read more 

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.