News

Getting married. Having a child. Switching careers. Moving to a different state. What do all of these things have in common? They are big changes to a person’s life. Any monumental change in life usually causes some sort of stress in people’s lives. The anticipation of whatever it is can bring on all sorts of emotions such as excitement, fear, and nervousness. For people living with disabilities, the monumental changes may sometimes look a little different, but we definitely still experience them. Change is hard for everyone—no matter what your circumstances are.

What happens when two major life changes happen at the same time? To put it bluntly, it’s pure chaos! For those who know me personally, they know how hectic the last couple months, actually years, have been for me. I’m not going to go into everything that has happened, but I’ll discuss the two big things that have been going on the last two months. To the average person, these two things probably won’t seem like a big deal, but, in my world, they’re life-changing. By the end of November, my entire life will be totally different than how it was at the beginning of October. Let me explain.

A little back story. Over a year ago, for various reasons, doctors recommended 24-hour care for me. There was no way I would be able to staff that by myself, so we had to find an agency. Really long story, there’s only one agency in my area that could possibly take me on. I had been on their waiting list since last October. We’d check in with them every few months to see where I was on the list. Well, between July and September, my care team (who I hired) basically fell apart. I unexpectedly lost five or six workers starting in June, and it became very apparent that something needed to change. I had a couple of great workers who stuck with me and tried to fill as much as they could, but we just couldn’t continue doing it. I was at my parents most of the time. We contacted the agency, and we finally connected with the right people and found out that that they were ready to take me on. The agency would staff 16 hours to start with, so I had to get a budget amendment approved which was a process in and of itself. I had to let the workers I still had know what was going on. That was a hard thing to do because some of them became good friends, but, thankfully, they understood. The original date the agency had given us ended up not working out for them, so I was at my parents another week while they supposedly straightened everything out.

I’ve transitioned to different care agencies or models a couple times before, so I knew what to expect and how rocky things would probably be. To say that it’s been an adjustment would be a huge understatement. Starting with all new people is hard –period. I don’t like using this limitation often, but, when you aren’t able to communicate verbally, it adds another whole layer. I have step-by-step instructions for everything I need done, but there are many in-the-moment things that can’t be explained in writing. In my case, hands-on training is an absolute must. My mom did a whole day training with two of the workers, and the intention was for those two workers to train others. So far, that hasn’t been working too well, but we’re really trying to give them a chance. At the time of writing this article, I’ve been with them for about three weeks, and my parents have had to come up about 95% of the days for one reason or another. It’s been pretty crazy to say the least, but things have gotten a little better over time.

Having someone with me all day has been an interesting adjustment as well. For years, I was by myself from 9a.m. to 4p.m. I tried to feed myself finger foods for lunch and didn’t use the restroom for about nine hours. Obviously, this was a huge reason why doctors recommended more care. It’s been an adjustment, though. Having someone at my apartment while I work is new to me. I’ll probably write about in detail in another entry, but, as challenging as it is, it’s also so much healthier and safer for me. In time, once things get settled, I hope to be able to go into the community a lot more since someone will be with me all the time. Right now, having an agency is a lot more stress than doing it on my own, but, eventually, it should be a lot less stressful for my family and I. That’s the goal.

I’m also moving in less than two weeks. In a previous entry awhile ago, I explained how I was on a waiting list for a different apartment for over two years. Well, low and behold, we learned that my name was at the top of list again. This time, we were able to do the intake meeting, and, about a week later, I received a call saying that three apartments were open. My parents and I set up a time to look at them. We looked at all three to determine which one would work best. We thought one would work pretty well, so I took the leap and signed the contract. Now, moving is stressful for anyone, but, when you need accommodations, it adds another level! This apartment building has an inner doorway and tenants have to buzz people in using an intercom system. There is an intercom in each unit, but the problem is that I won’t be able to reach it from my bed in the morning to let my caregiver in. We are trying to figure out the best solution to that. An electronic door has to be installed on my actual apartment as well. Among other less major things, it’s a lot to figure out in a short amount of time.  My current apartment still has a lot of issues, and the new place will be much safer and less stressful for me. I’m beyond excited to move, but it’s a lot of stress trying to figure everything out.

Do I wish both major changes wouldn’t coincide with one another? Absolutely. The amount of stress that this has put on my parents is palpable, but that seems to be how life works—everything happens at once. I’m so grateful that my parents are able and willing to help me figure everything out. I’ll write about both of these changes in more detail in upcoming entries.

“Next year will be your year,” friends kept telling me when I confided to all that has been going on the past couple of years. Moving and getting cares figured out have been on top of my personal to-do list for awhile. Due to other things that have happened in my personal life, I won’t be able to say that 2024 has been the greatest year; however, I’m hopeful that this is the start of a great stretch of good things to come for me and my family!

***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.

There’s a growing number of us who are Millennials or Generation X and struggle to balance the obligations of parenting school-age children, caring for elderly loved ones, and working for a living. Unsurprisingly, one-third of people who must serve as caregivers for family members ultimately have to quit their jobs, according to a Harvard Business School study.

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Federal data shows that the number of people with disabilities finding employment is increasing. Disability advocates credit the rise in remote work. Learn more about the different ways remote work supports workers with disabilities.

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A new report from Rutgers University estimates that about 40.2 million eligible voters in the quickly approaching U.S. presidential election are people with disabilities. The number of people with disabilities  is growing as the U.S. population ages, but voters and advocates say the hurdles that make people feel excluded from the voting process aren’t being addressed. 

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Deadline to apply: November 1, 2024

The Wisconsin Department of Health Services (DHS) is seeking qualified applicants to fill vacancies on two state long-term care advisory councils. The deadline to apply is Friday, November 1, 2024. 

Wisconsin Long-Term Care Advisory Council (WLTCAC)

The WLTCAC serves as an advisory body to DHS on existing and emerging aging, disability, and long-term care systems issues. Members provide advice and make recommendations to the DHS secretary regarding long-term care policy, programs, and services. Learn more about WLTCAC.

IRIS Advisory Committee (IAC)

The IAC is a workgroup established to provide recommendations to the DHS program staff on issues related to administration of the IRIS program. IRIS (Include, Respect, I Self-Direct) is a self-directed program for adults with disabilities and elderly people. IAC members are individuals who have relevant knowledge, experience, expertise, and community relationships that allow them to present ideas, opinions, or facts for the betterment of the IRIS program. Learn more about the IAC.

We are accepting applications to fill one open seat to represent IRIS participants.

How to apply

Applications of interest to serve on these two councils can be found on the DHS website:

• Application for the WLTCAC (Word)
• Application for the IAC (Word)

If you would like to request a paper application or need an accommodation or assistance with completing your application, please contact DHS Long-Term Care at 608-267-7286 or DHSDMSLTC@dhs.wisconsin.gov. Please include the name of the council to which you are applying.

WisTech, Wisconsin's Assistive Technology Act Program, is starting to plan for the 2025 assistive technology (AT) trainings and your input is needed. These trainings are intended to provide high-quality content that supports and develops the skills of AT professionals and other service providers. The WisTech 2025 Training Survey is now open!

Please complete this survey by Wednesday, November 20, 2024, at 5 p.m. If you have any questions, need this information in an accessible format, or need assistance completing this survey, please contact Laura Plummer by email at laura.plummer1@dhs.wisconsin.gov or phone at 608-514-2513. All trainings provide participants with Continuing Education Units (CEUs) and Certified Rehabilitation Counselor credits (CRCs) at no cost. Thank you in advance!

Fear of losing Medicaid benefits is a factor in debates over law allowing certain workers with disabilities to be paid lower than minimum wage — advocates urge Wisconsin lawmakers to pursue expansion. There are 49 employers in Wisconsin with a special certification known as a 14(c) which allows employers to pay workers with disabilities based on productivity, even if it is less than minimum wage. This has been a controversy for years. Many disability advocates feel that people with disabilities should be paid at market rates no matter what.

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The President’s Committee for People with Intellectual Disabilities (PCPID) has prioritized high-quality home and community-based services (HCBS) for their report to the president with a focus on four key areas: direct support professionals, employment, community living, and federal support. To adequately meet the growing demand for HCBS, the report suggests that HHS should offer guidance and technical assistance to support individuals in self-directing their care in Medicaid HCBS programs as part of the workforce solutions.

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Self-Determination Network News:

October 2024

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Stacy’s Journal

Take five minutes to check out what's happening on the Self-Determination Network:

• Updated Guidance on Housing Voucher: Recently, the Department of Housing and Urban Development has updated its guidance for the Mainstream Voucher program which creates new alternative requirements and waivers to allow public housing agencies to better utilize the vouchers by helping people with disabilities avoid institutional settings and live in the community. Learn more about the guidance.
• Guardrails to People on Medicaid: People who receive Medicaid are regularly evaluated to determine eligibility. Read about the new guidance outlining steps states should take to make sure that people with disabilities are not accidentally dropped from Medicaid home and community-based services.
• Voters with Disabilities Continue Battle for Electronic Ballots: Two months ago, many voters with disabilities in Wisconsin were looking forward to being able to receive and mark a ballot electronically. However, an appeals court disrupted the plan.  Learn about how advocates continue to fight for access to electronic ballots.
• Right-of-Way Guidelines: The General Services Administration (GSA) recently published a final rule adopting the public right-of-way accessibility guidelines issued by the Access Board. Find out what the guidelines include.
• Input Needed on AI: The Access Board is seeking feedback on the benefits and risks of artificial intelligence (AI) for people with disabilities. Comments due October 31st.
• The Autism CARES Act of 2024: The U.S. House of Representatives has taken a crucial step forward in supporting the autism community by passing the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024. Learn what this Act includes.
• Wisconsin Medicaid Managed Care Quality Strategy: The Wisconsin Department of Health Services is seeking public comment on the 2025-2027 Wisconsin Medicaid Managed Care Quality Strategy. Comments due October 25th.
• Free At-Home COVID Tests: The Department of Health and Human Services Administration for Strategic Preparedness and and the United States Postal Service is offering free at-home COVID tests. Find out how to get yours.
• Best Cities: The annual ranking for best cities for people with disabilities was recently released. Check out to see which cities ranked highest.
• Wisconsin Disability Policy Internship Program: The Wisconsin Disability Policy Internship Program is a 4-6 month, part-time paid internship designed to provide an early public policy career level experience in disability policy. Applications are due on October 28th. Learn more and apply today!
• Call for Presenters: The 2025 Circles of Life Conference is May 8th & 9th in Wisconsin Dells. Proposals to present are now being accepted. Applications are due October 25th.

Upcoming Events 

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

• Webinar: Ask an ADA Professional: Other Power-Driven Mobility Devices (OPDMD): October 9th, 1p.m. to 2p.m., Virtual
• Webinar: Bringing People to Golf - Creating Accessible and Inclusive Environments: October 10th, 1p.m. to 2:30p.m., Virtual
• Lunch & Learn Webinar: Make Your Plan to Vote: October 15th, 12p.m. to 12:45p.m., Virtual
• FOCUS 2024 Conference: November 20th-21st, KI Center, Green Bay 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.