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Meet Priscilla: a powerhouse self-advocate, award-winning leader, and microbusiness owner who refuses to let life’s unexpected twists slow her down! Whether she is commanding the stage as a conference presenter, mentoring peers, or checking out sleek rides at local car and bike shows, she brings unstoppable energy to everything she does. But of all her impressive titles, there is one she wears with the absolute most pride: being an amazing grandmother. Spunky, resilient, and fiercely independent, Priscilla is the true author of her own story, proving every day that challenges are just part of the adventure.

How are you involved with self-determination? What advocacy work are you involved in?
Priscilla Battle is a self-advocate, peer mentor, conference presenter, moderator, microbusiness owner, and the winner of the 2025 Diehard Award. In 2019, her life changed drastically when her previously hidden, invisible disabilities began becoming visible, bringing unpredictable daily challenges like temporary speech loss, severe pain that restricts limb movement, and seizure-like episodes triggered by sensory inputs. Her journey with self-determination became deeply personal when it was suggested that she move into a group home after living independently for over 30 years. Refusing to be put into a box that did not fit her life, she fought back alongside her cousin and employer at C. Renee Consulting, ultimately securing the necessary supports to remain safely in her own home. Today, she uses her experiences to encourage others with disabilities to find and use their voices, firmly believing that they belong in every conversation where decisions are being made about their lives. Reflecting on her resilience, Battle notes, "Sometimes I feel like my brain is forever fighting against my desire to be great—but I keep pushing forward," she added.

Tell us some good news! What's the most exciting thing happening for you—or in Wisconsin—in terms of self-determination?
Priscilla is deeply enthusiastic about the growth of a stronger community of self-advocates and peer mentors in Wisconsin. She highlights their collective efforts to help individuals with disabilities learn how to use their voices, understand their choices, and step into leadership roles within their own lives and communities. To counter the common issue of outside decisions being made without including the people they affect, she emphasizes a straightforward approach to understanding people with disabilities, asserting, "Listen to us!" Through sharing experiences, asking questions, and standing up for their rights, self-advocates are actively driving change. She is particularly focused on engaging high school students and young adults early on so they can grasp the principles of self-advocacy and self-determination before others attempt to define their futures. Ultimately, she sees a shifting landscape where individuals with disabilities are not merely asking to be heard, but are actively becoming mentors, presenters, business owners, and community leaders who are empowering the next generation to recognize that their voices truly matter.

What are some of your hobbies?
When Priscilla is not busy advocating, mentoring, presenting, or managing her business, she fills her time with crafting, cooking, traveling, and attending car and bike shows. However, her absolute favorite role in life is being an amazing grandmother, a title she wears with immense pride. Spending time with her family brings her immense joy and serves as a powerful reminder that despite life's daily challenges, there is still so much to celebrate and enjoy. For her, these moments are all about family, laughter, love, and making lasting memories with the people who mean the absolute most to her. Reflecting on the happiness her family brings, she shares, "Being a grandmother brings me so much joy."

Any final thoughts you'd like to share?
Priscilla acknowledges that her journey has not always been easy, and she continues to write her own story every single day. Through her experiences, she has learned that self-determination is far more than a program, policy, or phrase—it is deeply personal. For her, it means having the freedom to decide where she lives, choosing who supports her, speaking up when something feels wrong, and having people truly listen to her instead of speaking for her. While her disabilities are a part of her story, they do not define the whole story. She is a self-advocate, peer mentor, presenter, business owner, grandmother, and leader who ultimately remains the sole person who gets to decide what comes next in her life.

***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 teenager taking the exam to get their driver’s license. A soldier completing a test to upgrade their rank. Someone taking the bar exam in hopes of getting into law school. An athlete gets a medical exam in order to participate in sports. There are many different types of exams that people do. In most cases, the exams are tools that prove whether people are capable or incapable of doing something. Generally speaking, people want to “pass” the exam, so that they are able to move forward with whatever it is that they are trying to accomplish. A lot of the time, “passing” the exam is an exciting accomplishment; however, there are times when doing well on a test or screen isn’t necessarily a positive thing.

A few years ago, I wrote a journal entry about how many times, people—especially those who have disabilities--are unintentionally interrogated.  I talked about how people with disabilities often have to repeatedly answer questions about what they’re capable and incapable of doing. The questions are asked in order to determine how much support and funding for services the individual receives. Despite the screeners being nice and understanding, anyone who has had to go through a functional screen, knows that they are usually pretty emotionally draining. Why, you ask? Simply because you’re asked about all of your abilities and inabilities. As I pointed out in that entry, after doing a couple of them, you learn to make yourself sound as “needy” as possible, so you can get the support you need. While I don’t lie, I’ve learned to make myself sounds as vulnerable as possible when I do those screens. I was lucky enough to have both my functional screen and my screen for Self-Directed Personal Care hours within weeks of each other this year (insert sarcasm).

Through the grapevine, I had heard that many people’s budgets and personal care hours had decreased this year even though nothing had changed. Sure enough, my personal care hours decreased by a few hours. While, it’s not particularly surprising given what’s happening federally, it’s incredibly frustrating! So, what happens when budgets decrease or personal care hours decrease? Depending on the situation, sometimes, if the decrease is not significant, a person might be able to make do with it by rearranging some things in their budget; however, often, people can’t make do. What happens when people are not able to make it work without the given support? In the IRIS program, participants can request a Budget Amendment for a particular service or support.

I may have written about going through a Budget Amendment process in past entries. Depending on what the amendment is for, in addition to the consultant having to do lots of paperwork, participants have to provide different documentation for it. Since my personal care hours decreased, I need more Supportive Home Care hours to make up for them. As I’ve explained before, I have 16 hours of care per day which equates to two eight-hour shifts per day. In order to maintain that, I will need a couple more hours of Supportive Home Care. My current consultant is amazing and she’s on top of everything. As soon as she got the results of the screens, she emailed me right away realizing that we’d probably need to do a Budget Amendment. As she started the paperwork, she emailed me saying that she needed an updated caregiver task schedule. What this is is a document laying out what the caregiver does for every 15-minute segment for the entire 16 hours that they are here. I initially had to do this about two years ago when my hours significantly increased. Think about that. That’s 64 time increments to have to fill with a specific task. While we did it because we had to, it’s just not realistic for someone to person to plan out their life in 15-minute segments--that’s just not how life works. This is especially frustrating to have to do when I have notes from two different doctors stating I need 24-hour care. One would think that a doctor’s note would hold enough necessity, but that’s not the case. Personally, it doesn’t make any sense to me. As it turns out, we ended up not needing to submit a request for a Budget Amendment this time because my regular IRIS budget increased enough that we were able to make everything work, but it could all change next year when I’m screened again.

Supports and services aren’t the only things that people who have disabilities have to go through hoops in order to prove they need. As I’ve talked about in previous entries, Durable Medical Equipment (DME) is another thing that people often have to prove they need in order to get it funded. It often takes many justification notes and therapist evaluation reports in order to get a piece of equipment covered. More often than not, this process takes months. Depending on what the equipment is, a person could be left not able to live their life while waiting for funding to get approved. In my opinion, this is one of the most major flaws in the so-called system.

Social Security and Supplemental Security Income are also things that require proof on a regular basis. Additionally, Medicaid requires a rigorous review annually (in Wisconsin). Obviously, a lot of these benefits are interconnected, but individuals still have to provide proof that they need it. The renewal process for these benefits can be especially daunting because if you miss checking a box or don’t upload documentation correctly, you’re at-risk of losing your benefits that provide the supports that you need to survive.

While some people have conditions that change over time, many people don’t. Having to constantly prove that you need supports is not only time-consuming, but it can be mentally and emotionally exhausting. As I’ve said before, many of us don’t think about having a disability until circumstances present themselves. When you’re constantly having to prove you need services and supports, it’s often a reality check of your circumstances. Unfortunately, I don’t see anything changing in the near future—in fact, given today’s political environment, it may get worse before it gets better. That’s why it’s so important that we keep relentlessly advocating for what we need!

***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.

Get Free Training On Caregiving for Adults with IDD-MH Needs

Limited availability! See if you qualify.

Direct caregiving is one of the most rewarding ways to give back. But it’s also one of the most difficult. Plus, there is even more to know and understand when providing direct care to people with intellectual and developmental disabilities and mental health (IDD-MH) needs.

That’s why the Direct Care Worker Training Subcommittee has partnered with the Certified Direct Care Professional (CDCP) training program to create modules related to IDD-MH. The training course for adults with IDD-MH needs is self-paced, online, and free. Availability is limited.

About the training course

What it covers

• An overview of various IDD and mental health disorders
• Strategies for effective communication and crisis prevention
• How mental health disorders present in adults with developmental disabilities
• Medical diagnoses and health conditions connected to IDD and how they affect mood and behavior

Who should take it

• Family members
• Paid caregivers

Where to access it

• Online through UW-Green Bay
• Available 24/7 (no designated class times)

How long it takes

• Self-paced
• Up to eight hours

Claim your spot!

Fill out the screening form to see if you qualify to take the course.

See if I can take the course

To qualify, you must:

• Be a caregiver or employ caregivers of adults with IDD-MH needs enrolled in a Wisconsin Medicaid program.
• Have or are willing to create an online Canvas account with UW-Green Bay.
• Be willing to devote eight hours to the online training course by December 31, 2026.

Background

This online training course is the result of work completed by the Direct Care Worker Training Subcommittee, as part of Wisconsin IDD-MH System Improvement. The course is one module within the CDCP training program, which is a free, professional workforce advancement program that aims to increase the number of caregivers working in home and community-based settings.

The subcommittee is also working on a module for caregivers of children with IDD-MH needs. We will share more information about the child-related course soon.