News
What's your story? Tell us a little bit about yourself.
Jenna is a 41-year-old educator and mother of four boys who recently celebrated her 10th wedding anniversary. Over her 18-year career in education, she worked as a classroom teacher and spent seven years as an Instructional Coach at her local elementary school. She holds degrees and certifications from UW-Milwaukee, Concordia University Wisconsin, and UW-Madison.
Throughout her life, Jenna has been dedicated to inclusion and supporting individuals with disabilities. This passion began in her youth as a student buddy, continued through various childcare and teaching roles, and led to her recent enrollment in the Self-Determination Network. As a teacher, she maintained an open-door policy for Special Education students, ensuring her classroom was always a welcoming space for everyone.
This commitment to advocacy became personal in 2020 with the birth of her fourth son, Benny, during the COVID-19 lockdown. She shares that following a difficult delivery, Benny faced severe feeding and sleeping challenges, alongside regressing developmental milestones. After 15 months of intensive medical testing, specialists, and early intervention therapies, genetic testing revealed a deletion on Benny's 15th chromosome, confirming a diagnosis of Angelman Syndrome.
Angelman Syndrome is a rare neurodevelopmental disorder affecting one in 15,000 people. While the diagnosis did not change their joyful son, it gave Jenna and her husband the answers, resources, and community needed to support him. Today, Jenna is incredibly grateful to the Angelman Syndrome Foundation and fellow parents for their unwavering guidance and advocacy.
How are you involved with self-determination? What advocacy things are you involved in?
Although Benny's disability affects his speech and development, Jenna believes it does not diminish his inherent right to a fulfilling life. Reflecting on this, she shares, "One of the greatest lessons I've learned is that self-determination looks different for everyone. Sometimes it means advocating for yourself, and sometimes it means ensuring someone has the support they need so their own voice can be heard." Every decision Jenna and her husband make today is with the hope that Benny will grow into an adult who is fully empowered to express his preferences, make choices, and build meaningful relationships. Ultimately, self-determination is not just a concept she advocates for—it is a principle she hopes will shape his future.”
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Over the past year, Jenna experienced exciting professional changes after making the incredibly difficult decision to step away from elementary school teaching to be more available for her son’s needs. Leaving behind a beloved career in teaching and coaching was tough, but after nine months of reflection, she realized she could merge her passion for children with disabilities, her extensive education background, her lived experiences, and her need for a flexible schedule. Driven by these core values, she launched her own business, Guided by Grace, to walk side-by-side with other disability parents as a coach and mentor. As she built her business plan and conducted market research, the deep community impact of her new venture immediately became clear, with Jenna noting that "it became very apparent that this was what families need—they need someone to be a pathfinder, partner, and trusted guide through their journey."
What tip or resource would you like to share with people who want to be more self-determined?
In her reflections on self-determination, Jenna emphasizes that it is a journey of gradual growth, stating, "Self-determination isn't something that happens overnight. It grows one decision, one question, and one act of courage at a time." For families navigating this path, she offers the following advice:
- Remember that you are the expert on your child.
- Stay organized by keeping evaluations, reports, questions, and resources together to feel prepared for appointments and meetings.
- Ask questions without fear, and keep asking until you fully understand.
- Find your community among other families who have walked a similar path to find encouragement, practical advice, and hope.
- Celebrate progress, even when it looks different than originally expected.
Looking back, she notes that while she never imagined how becoming Benny's mother would completely redirect her life, she is profoundly grateful for the lessons learned and the opportunity to support others. Sheremains a steadfast advocate for inclusion, concluding that her ultimate hope "is that every individual with a disability—and every family walking alongside them—knows that their voice matters, their choices matter, and they deserve every opportunity to live a meaningful and self-determined life.”
What are some of your hobbies?
Outside of work, Jenna enjoys fitness, walking, live music, books, and spending time with her loved ones.
***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.
AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: American Association of People with Disabilities Applauds Supreme Court Protecting Mail Ballot Grace Periods
By SD Network, 2026-06-29
On June 29, 2026, the Supreme Court ruled in RNC v. Watson to uphold the right of states to count mail-in ballots received in the days following Election Day, provided they are postmarked on or before Election Day. The American Association of People with Disabilities (AAPD) applauded the decision, having joined an amicus brief alongside other advocacy groups to preserve these grace periods, which currently range from 3 to 14 days in fourteen states and multiple U.S. territories. AAPD emphasized that the ruling protects vital voting accessibility for the estimated 40.2 million eligible voters with disabilities, who rely heavily on mail-in voting due to systemic barriers at physical polling places, ensuring their ballots are not unfairly disqualified by external factors like postal delays.
ADMINISTRATION FOR COMMUNITY LIVING: Grant Opportunity: Peer Supports for Augmentative and Alternative Communication
By SD Network, 2026-06-29
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Applications due Wednesday, July 22, 2026
A new funding opportunity is now available from ACL’s Administration on Disabilities, “Peer Supports for Augmentative and Alternative Communication.” One awardee will receive up to $2.3 million over a three-year period of performance.
This initiative will strengthen and expand a national peer support network for augmentative and alternative communication (AAC), addressing the unmet needs of an estimated 5 million individuals in the U.S. with speech-related disabilities who cannot rely solely on speech for communication. This funding opportunity will build on past work to create a peer-led network that empowers AAC users, promotes leadership, and provides resources to improve outcomes, such as self-determination, economic security, and community engagement. By the end of the project, individuals with speech-related disabilities should have a first-of-its-kind, modern resource that makes it easier to use or access AAC. Click the button below to learn more and view application information on Grants.gov. Questions about this funding opportunity should be directed to Katherine.Cargill-Willis@acl.hhs.gov. |
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WISCONSIN EXAMINER: Community care enriches lives for the disabled, but advocates say feds are pulling back support
By SD Network, 2026-06-29
Recent federal legal and regulatory shifts have sparked significant concern regarding the future of long-term independent care for individuals with disabilities. A newly issued legal opinion from the U.S. Department of Justice suggests that states may bypass long-standing federal mandates—originally established by a landmark 1999 Supreme Court decision—that guarantee the right to receive care within home and community settings rather than in institutions. This directive, combined with parallel federal warnings regarding potential home-care fraud, has raised fears that states will proactively restrict funding for critical Medicaid programs. For individuals who rely entirely on home healthcare workers for their daily essential needs, a pullback in federal enforcement directly threatens their autonomy, risks forcing vulnerable people into institutional isolation, and threatens to shift an immense, unpaid caregiving burden back onto families.
PBS NEWS HOUR: New Justice Department memo questions decades of protections for people with disabilities
By SD Network, 2026-06-29
According to the PBS News Hour segment, a recently released Justice Department memo has drawn sharp criticism from disability advocates for questioning decades of legal protections, specifically arguing that the integration mandate established by the Americans with Disabilities Act and the landmark Supreme Court Olmstead decision is unenforceable. Maria Town, president and CEO of the American Association of People with Disabilities, warns that this interpretation could allow states to pull back on funding for home and community-based services, potentially forcing disabled individuals and older adults back into institutional settings like nursing homes or psychiatric facilities. Furthermore, advocates are sounding alarms over the Trump administration's plans to shift special education oversight from the Department of Education to the Department of Health and Human Services (HHS), a move they argue risks "re-medicalizing" and re-segregating students with disabilities by undermining their access to mainstream public classrooms.
HEALTH AFFAIRS: America’s Infrastructure To Support Older Adults Is In Limbo
By SD Network, 2026-06-29
This article highlights that America's elder care infrastructure is in a state of critical instability just as the nation faces a massive demographic shift toward an aging population. While the vast majority of older adults prefer to age in place, Medicare does not cover daily in-home assistance, leaving families to rely on a strained safety net comprised of Medicaid and programs funded by the Older Americans Act (OAA). However, the OAA remains in limbo due to prolonged Congressional gridlock over its reauthorization and years of flat funding, which has led to extensive waiting lists for vital services like Meals on Wheels. This crisis is heavily compounded by recent administrative turmoil at the Administration for Community Living (ACL)—the federal agency overseeing these programs—which saw a 40% staff reduction and ongoing re-organization proposals under the Trump administration's Department of Government Efficiency (DOGE) initiatives. Ultimately, despite a level-funded fiscal year 2026 budget, the combination of stagnant funding, legislative inaction, and diminished agency capacity leaves the country’s aging network struggling to support the rapidly growing numbers of older adults and their family caregivers.
CBS 58 NEWS: Meet the Wisconsin savant eco-artist with autism who proves all trash can become treasure
By SD Network, 2026-06-29
This article profiles a 30-year-old eco-artist from Fond du Lac, Wisconsin, who has autism and is considered a savant in the art world. Dubbed the "Eco-Friendly Artist," they create intricate mixed-media artwork out of discarded everyday items like puzzle pieces, old coins, vintage jewelry, and contact lens packaging to reduce landfill waste. The artist credits their autism for giving them the hyper-focus necessary to complete these massive, detailed projects, while noting that the creative process acts as a form of meditation to soothe their anxieties. Recognized nationwide for their talent, they have won numerous accolades—including having their work displayed in the U.S. Capitol—and have raised over $500,000 for charitable causes supporting individuals with disabilities.
ADMINISTRATION FOR COMMUNITY LIVING: Funding Available to States to Implement the National Strategy to Support Family Caregivers
By SD Network, 2026-06-26
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Applications due Wednesday, July 22, 2026, 11:59 p.m. ET
A new funding opportunity is now available from ACL’s Administration on Aging: Advancing State Implementation of the National Strategy to Support Family Caregivers. The awardee(s) will receive a total of up to $490,000 for a 24-month project.
This funding opportunity is designed to break down siloes that exist through close collaboration among multiple agencies in the state. Each grantee will be expected to focus on implementing at least three of the five goals of the National Strategy to Support Family Caregivers, as determined by the state’s needs and priorities. Each grantee is required to work with their state’s developmental disabilities services agency and at least one other state and tribe or tribal entity over the course of the project. Click the button below to learn more and view application information on Grants.gov. Questions about this funding opportunity should be directed to aoa.oaa@acl.hhs.gov. |
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ADMINISTRATION FOR COMMUNITY LIVING: Funding to Strengthen Respite Care Support for Family Caregivers Nationwide
By SD Network, 2026-06-26
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A new Lifespan Respite Care Program funding opportunity is now available from ACL’s Administration on Aging. The awardee(s) will receive a total of up to $4,430,133 for a three-year project.
This funding opportunity is designed to develop and strengthen statewide respite care systems and expand support services for caregivers. Eligible state agencies must be building or enhancing the capacity of their long-term care systems to meet the comprehensive needs of residents, including respite care. Awardees must use funds to develop or expand lifespan respite care, provide respite services for family caregivers, recruit and train respite workers and volunteers, and improve caregiver access to respite information and support services. Funds may also support caregiver training, additional respite-related services as specified, and education and training for new caregivers. Click the button below to learn more and view application information on Grants.gov. Questions about this funding opportunity should be directed to AOA.OAA@acl.hhs.gov. |
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THE CAP TIMES: Wisconsin’s Medicaid work requirements: Here’s what to know
By SD Network, 2026-06-23
Based on the provided article from The Cap Times, Wisconsin is preparing to implement new federal Medicaid work requirements on January 1, 2026, which state health officials estimate could cause roughly 63,000 BadgerCare Plus beneficiaries to lose their health insurance. Stemming from a 2025 federal budget reconciliation law, the mandate applies strictly to Medicaid expansion programs and will target adults ages 19–64 who do not have dependent children, are not pregnant, and do not qualify based on a disability. To maintain coverage, non-exempt recipients must complete at least 80 hours per month of work, volunteering, job training, or qualifying educational programs. While state health officials disagree with tying healthcare to employment and worry that complex reporting rules will inadvertently cause eligible people to lose access, Wisconsin plans to utilize an integrated data system and offer short-term hardship exemptions to help mitigate the administrative burden.