Advocate Awakens During Fight for Accountability

My Story

Abandoned Advocate
By: Michelle Castile

Welcome to my Nightmare
Despite providing documented evidence of the extensive damage caused by the Wisconsin Weatherization Assistance Program – including pervasive moisture issues, back-drafting appliances, and cellulose insulation embedded in my carpeting – I was met with indifference and denial from both the Department of Health Services and the Department of Administration. Their refusal to acknowledge the program's errors and the resulting impact on my family's health and home has left me feeling powerless and betrayed. This ongoing battle, now spanning three long years, has consumed my life, leaving me with a gnawing fear for the future and an overwhelming sense of injustice. The lack of accountability and the continuous disregard for my family's well-being have shattered my trust in the very institutions meant to protect us. I will never understand why.

Part I
Beginning the Battle against Broken Systems
Putting the Pieces Together
On a Mission to Solve a Building Science Mystery
In late 2020, I embarked on a journey to improve our family home through the Wisconsin Weatherization Assistance Program (WAP). My initial optimism quickly faded as the program's work led to unforeseen consequences. Shortly after completion, our home developed severe indoor air quality issues. Air test results revealed high levels of CO2, VOCs, formaldehyde, and sulfur, among other contaminants.

Further investigation, with the guidance of experts, uncovered a critical issue: the cellulose insulation added to the attic had overfilled the soffits, blocking airflow and creating excessive moisture. Additionally, the program's replacement of our electric water heater with a gas-powered model, along with the installation of a new furnace, exacerbated the problem. Both appliances were found to be backdrafting, drawing harmful combustion fumes back into the home.

Before we understood the full extent of the backdrafting issue, a local HVAC technician discovered a cracked heat exchanger in our furnace. The Home Energy Plus Furnace Program, another initiative tied to the weatherization program, promptly replaced the furnace at no cost to us. However, my research led me to suspect backdrafting, which was confirmed when a tissue test showed both the new furnace and the gas water heater were drawing air back into the house. This further compromised our indoor air quality and highlighted the detrimental impact of replacing the electric water heater with a high-powered gas model in an already poorly ventilated home. Alarmingly, the lack of mandatory final inspections for both the weatherization work and the furnace installation allowed these dangerous issues to go unnoticed.

The combination of the poorly installed bath fan, the gas water heater, and the lack of proper attic ventilation created a toxic nightmare in our home. A pervasive, harmful vapor, laden with toxins and insulation particles, seeped into every corner, invading our lungs and wreaking havoc on our health and home. The once-cozy attic, now overfilled with unsealed insulation, transformed into a breeding ground for mold, further poisoning the air we breathed.

The gas water heater, installed by the very program meant to help us, was leaking gas, posing a grave danger to my children. The constant smell of gas filled me with a sickening dread, knowing that my family was living with an imminent threat. We meticulously documented this issue, along with the backdrafting problems, and presented the evidence to the WAP, DOA, and DECHR. Yet, our cries for help were met with a deafening silence, a cold indifference that chilled me to the bone.

Our family's health struggles worsened due to the poor air quality. Our child's allergist recommended a whole-home ventilation system, but our insurance company denied coverage due to coding errors made by the physician's office. The insurance ombudsman refused to help, blaming us for the errors. This experience highlighted the harsh reality that even medical necessity could be denied due to bureaucratic red tape.

Now all carpeting, bedding, furniture, and then some have become filled with VOC'S, combustion byproduct, cellulose and fiberglass insulation, all being carried in a smog of moisture that has overtaken our entire home. I often compare vacuming to be much like vacuming a beach in every single room. This is in the air we breathe every day and continues to settle and be soaked into every area possible, every fabric surface, all throughout our entire home. It was advised early on from one of the many experts I found and spoke with, to change the electronic air cleaner to instead be modified to fit a high MERV rated filter in order to at least try to make the air somewhat manageable. Unfortunately this modification did nothing and the air quality just kept getting worse. Even more so in the summer months as this negative air pressure causes the outside air to constantly be sucked in from every area it can. Energy bills quickly skyrocketed as cold air is forced inside during the winter, and hot, humid air in the summer, making our home very difficult to both heat and cool. Welcome to my nightmare. Buckle your seatbelts, you are in for a story even Hollywood can't make up and that left a mother on a mission to solve a maze of mysteries and fight against a superficial system.

Part II
Desperate for a Voice
Falling Through the Cracks
Deceived, Dismissed, and Denied
The Central Wisconsin Community Action Council (CWCAC), the administrators of the weatherization program, swiftly denied any responsibility for the damage to our home. After countless phone calls and a home visit, they dismissed my concerns, mocking me with comments like "crazy female" and others dripping with discrimination. They refused to provide a grievance policy or even allow me to file a formal complaint, denying my right to due process. This pattern of dismissal and blatant disregard for my rights repeated itself with WisCAP (Wisconsin Community Action Program Association), the oversight organization, leaving me utterly alone in this fight. Little did I know this was just the start of being deceived, dismissed, and left with denial after denial.

In October 2021, I met with the DOA's quality assurance manager for the WAP, a meeting facilitated after I contacted my local Senator. The manager assessed the damage and offered a list of repairs. His refusal to acknowledge the full extent of the damage forced me to reject his limited scope of work. This rejection is now used against me, making me appear unwilling to cooperate, while the true culprit—the weatherization program—remains unaccountable. The quality assurance manager dismissed the contamination of our belongings and attributed the moisture issues to a humidifier, which was clearly turned off in the photo he provided against our claims. He also claimed the moldy roof sheathing, caused by the faulty bath fan installation, was dry. However, this was only true during his summer visit, as condensation and leaks worsen in colder months. In this scope of work, an offer for a handful of furnace filters was included. However, this offer led to a disturbing discrepancy. We ourselves installed a higher rated filter afterwards as this was a definite need in order to try to limit the exposure to the air we breathe. Upon my consistently trying to obtain assistance for the gas leaking water heater, CWCAC sent a denial letter claiming the furnace had been "modified," making us ineligible for further assistance with the furnace and the water heater. This was a blatant fabrication, as the filter change was part of the DOA's proposed repairs. It became clear that CWCAC was attempting to shift the blame for the backdrafting issue onto us. The misleading report sent to Senator Marklein omitted these crucial details and painted a false picture of the situation. Which now everyone uses against us. Despite my providing extensive evidence and expert reports, the quality assurance manager's biased account prevailed.

My records request from the Department of Administration (DOA) revealed a shocking omission: the program was required to install a whole-home ventilation system due to the blower door test results. However, this was never disclosed to me. The quality assurance manager falsely claimed I had refused it, citing a refusal form I signed for a simple bath fan timer switch.

Further examination of the records revealed a forged signature on the final inspection paperwork, a blatant act of deception. This, along with the discovery of internal communications between DOA and DECHR employees instructing each other to ignore my inquiries, confirmed a concerted effort to cover up their negligence and silence my voice.

My pleas for help extended to numerous legislators, but my encounters left me feeling unheard and dismissed. Meetings with Senator Marklein's staff yielded no action as I was told "The state of Wisconsin will not help you" highlighting the frustrating disconnect between those in power and the constituents they are meant to serve.

Part III
From Fix It To Forget It
Blocking the Block Grant
A Fight for my Remediation Rights
For three years, I've tirelessly sought answers and accountability. I've uncovered the root causes of the damage to our home and identified those responsible. Yet, my efforts have been met with a wall of silence and denial. Our once beautifully inherited home is now a moisture-ridden health hazard, causing my children to have ongoing health issues. The desperation and fear for my family's future weigh heavily on me, a burden no mother should bear.

Despite reaching out to hundreds of agencies and individuals, including the Department of Natural Resources (DNR), my pleas for assistance have been met with inadequate responses. The DNR acknowledged the regulatory gaps that prevent them from directly helping homeowners like me, and their other programs, such as the Remediation and Redevelopment Program and the Air Management Advisory Program, offered no solutions. Even Disability Rights, an organization meant to protect the vulnerable, dismissed my case as a "construction issue," and after I filed a grievance, they delayed their response to this for over six months, breaking their own polices. After a disheartening interaction with their director, who angrily reiterated their inability to help, I was left to face this battle alone once again.

A glimmer of hope emerged when I secured a Community Development Block Grant (CDBG) after a year-long wait. However, it proved to be another frustrating experience. After months of paperwork and unsuccessful attempts to find a contractor, the grant program manager abruptly denied funding for attic repairs, citing "duplicate funding" due to the original weatherization program. This denial was delivered in a one sentence email, lacking a formal appeal process grievance process. Despite the awareness of this I tried to bring attention towards, I was met with silence and further denials, leaving me devastated and without recourse.

Adding to the mounting injustices, the Southern Housing Region Housing Committee denied the remaining grant funds, accusing me of violating "abuse clauses" based on an email expressing my concerns about the impact of the denial on my family's well-being. This devastating setback came after months of hard work and anticipation of finally resolving the issues caused by the weatherization program.

HUD intervened and requested an independent legal review of the denial. However, this review, conducted by a single attorney residing in the same county as the committee that denied the funds, ultimately deemed the denial "legally defensible." My attempts to obtain clarification and raise concerns about potential conflicts of interest were met with silence from both HUD and the legal counsel. This left me without answers and further validated the feeling that my concerns were being dismissed and ignored at every turn. A records request was obtained that discovered this denial was voted by a total of four individuals, yet the reason was left out. Despite my efforts to try to obtain this information, I was unsuccessful as there was no other information I was given.

My experience with the Wisconsin Homeowners Assistance Program (HAP) was another series of frustrating denials and bureaucratic hurdles. My first application was denied due to an inaccurate claim about home inheritance and mortgage status. Despite providing evidence to the contrary, the Department of Administration, which oversees the program, remained unresponsive. A second application was denied due to a missing document, despite the application lacking a designated upload section for said document. My third attempt was finally approved, resulting in a partial payment towards a large energy bill, but only after extensive follow-up and persistence on my part.

In a last-ditch effort, I applied to the HAP again in late 2023 for emergency septic repair assistance. The next day, I received a denial claiming home repairs were ineligible, despite the program's guidelines explicitly including septic systems. I provided evidence from their own handbook, yet they doubled down on their denial and refused further communication, showcasing the program's capricious and unaccountable nature. I had also inquired about the ability to submit retail accounts as this too was labeled to be eligible for the grant funds to pay off for homeowners. My inquiry for this never did receive a response.

The saga continued with the gas water heater, a ticking time bomb installed by the weatherization program. Despite the immediate danger of the gas leak, especially with children in the home, our application for a replacement under the newly implemented energy services water program was denied. The Department of Administration (DOA) cited vague reasons initially, then later blamed it on "furnace modifications"—the same filter changes their quality assurance manager had suggested. This contradictory and arbitrary denial, even with a gas leak, exposed the systemic indifference and lack of accountability we faced. We were left in a perilous situation with no recourse, trapped between the unresponsive state and the energy services program. I requested a denial letter to try to appeal, however this came too late and my efforts of appealing were again unable to be heard.

These experiences highlight the systemic failures and barriers I continue to face in Wisconsin. The injustices I've endured are not isolated incidents but reflect a broader pattern of neglect and disregard for homeowners caught in the crossfire of bureaucratic red tape and contradictory policies.

Despite countless attempts to reach out to authorities at all levels—from local agencies to the White House—my pleas have been met with silence and inaction. My documented evidence, including expert reports, has been ignored, leaving my family and me feeling invisible and unheard. This lack of response not only perpetuates the harm inflicted upon us but also raises concerns about potential violations of fair housing practices and discrimination.

The system seems determined to silence me. Even legal aid and private firms have turned me away, leaving me feeling powerless and alone in this fight. The very institutions meant to protect and serve have instead become obstacles, further compounding the injustice and trauma we have suffered. The State Bar of Wisconsin referral service stated there were no available lawyers to take on my case, Legal Action stated a lack of resources, Marquette Law Office was also unavailable to assist after meeting with several different individuals on more than one occasion. UW Law clinic had looked into the ability to obtain the whole-home ventilation system recommended by my daughter's physician, however due to the lack of distributors for this item who worked with Medicaid, this was impossible to obtain I was told, even with a letter stating it to be a medical necessity.

Three years' worth of evidence, including a 30-page report from the state health department detailing extensive testing, unequivocally proves the damage inflicted upon my family. Yet, those responsible remain unaccountable, choosing to ignore the overwhelming evidence and leaving us to suffer the consequences.

My pleas for help have reached the highest offices—the Governor, the White House, the Department of Energy, the Inspector General—yet all have fallen on deaf ears. The deafening silence from those in power has taken a devastating toll on my mental health, pushing me to become my own advocate in this relentless pursuit of justice. My research discovered a lack of oversight over the Department of Administration, further clarifying there really was no where else for me to go with my boxes of evidence for this complex situation. Left exhausted but a refusal to give up, I am determined to expose the truth and hold those responsible accountable.

My ordeal is a stark reminder of the systemic failures that plague government assistance programs, leaving vulnerable individuals without recourse or justice. It is a testament to the resilience of the human spirit and the unwavering pursuit of accountability in the face of overwhelming adversity.

Part IV
An Advocate Awakens
Finding my Purpose in Policy
Discovering my Voice, Partnerships, and Liberty
In the beginning, my fight felt solitary and overwhelming. The indifference and mockery I faced only amplified my despair. With the world seemingly crumbling around me, I turned to online resources, hoping to find a glimmer of hope amidst the darkness. Countless Zoom webinars became my lifeline, offering a sense of connection and community in a time of profound loneliness and with no where left for me to go. I also did it for the resources I was hopeful I might come across. It was through these virtual gatherings that I stumbled upon the Wisconsin Statewide Parent Educator Initiative, (WSPEI) a beacon of hope amidst the storm about to brew. Their down-to-earth approach and wealth of knowledge empowered me to navigate the complex world of educational advocacy. I learned about IEPs, 504 plans, and the process of obtaining assessments for my struggling children in a school who refused to provide support. The weight of my children's unmet needs, coupled with the school's growing disregard, slowly chipped away at my resolve. My daughter, Abigail, struggled with cognitive delays, impacting her ability to keep up with her peers. My son, Adam, faced behavioral challenges that often put him in dangerous situations. The school's response was a disheartening mix of inaction and empty promises, leaving me feeling trapped in a system that failed to prioritize my children's well-being. Armed with this newfound knowledge, I confronted the school's refusal to even consider evaluating my children's needs. Fueled by a growing sense of empowerment and the support of WSPEI, I began to submit complaints, documenting every instance of neglect and discrimination. It was a daunting task, filled with uncertainty and fear of retaliation. However, having previously navigated the labyrinthine world of home weatherization complaints, I knew the importance of speaking out, even when met with resistance. Submitting those complaints to the Wisconsin Department of Public Instruction felt like a weight lifted off my shoulders. Unlike my previous battle, where I faced a maze of bureaucracy with no clear path to resolution, this time I had the knowledge and resources with a clear path to demand accountability. My advocacy efforts gained momentum, leading to investigations and ultimately the removal of the Superintendent and eventually, the Special Education Director from their positions. Both of which had dismissed both of my children's disabilities and refused to give assessments for the support they needed. This was a turning point, not only for my children but also for my own sense of empowerment. It solidified my belief in the power of speaking out and demanding change, even in the face of seemingly insurmountable obstacles.

Fueled by this newfound confidence, I expanded my advocacy efforts beyond educational rights. After the tragic loss of an acquaintance due to the lack of readily available Narcan, this ignited my dedication to substance abuse prevention. I sought out harm reduction supplies, distributing them throughout my community and beyond in honor of my friend's memory. When I reached out to the county health department for additional resources, I was unexpectedly invited to join their newly formed grassroots recovery coalition. Stunned but determined, I accepted the offer. One year later, I now serve as the secretary of this coalition, a testament to the unexpected paths that advocacy can lead us down. This opportunity opened doors I hadn't ever considered, leading me to become deeply involved in committees and advocacy groups dedicated to making a tangible difference.

Empowered by the knowledge I had gained and the connections I was beginning to make, my quest for support led me to Family Voices and the Board for People with Developmental Disabilities (BPDD), specifically their Partners for Policymaking Program. My first encounters with these organizations had been uncertain, as I had reached out to nearly every organization in the state, only to be told they couldn’t assist me. I contacted them multiple times, feeling as though I was caught in an endless loop of searching for resources that seemed just out of reach. Yet, as I navigated their websites, I couldn’t shake the feeling that their mission resonated deeply with my own struggles.

It wasn’t until I grasped the essence of their work—providing leadership and advocacy training—that I realized I had found something profound. This was the moment I truly fell in love with the concept of advocacy. To my immense relief, they welcomed me with open arms, offering not just support, but the chance to engage in their transformative trainings. Family Voices led me to finding my voice again when I had lost it in the constant battle against bureaucracy and hate. This organization became my "home away from home" and lasting friendships were created. This helped to lead me out of my isolation and slowly back into the world I had become so deathly afraid of facing.

In the midst of my training with Family Voices, an individual I had reached out to previously for help, sent me an application for The Board for People with Developmental Disabilities Partners for Policymaking Program. It opened my eyes even more, leaving me to wonder what she saw in me that led her to extend such an opportunity, telling me she wanted me to have it. This moment deepened my resolve, inspiring me to explore the potential she had recognized in me and further commit to the path of advocacy. These trainings became a pivotal point in my life. Surrounded by others who were just as passionate as I was, though driven by different causes yet united by a common desire to create change, I discovered a sense of belonging and empowerment that had long eluded me. I found friendships in these rooms, forged by our shared commitment to making a difference. The skills I gained were invaluable, but even more importantly, I was pushed beyond my comfort zone, learning to share my story and connect with others in ways I had never imagined. This was not just a learning experience; it was a rebirth, a profound awakening to the power of advocacy. Where I once stood alone, I now stood united with others and empowered to create change.

As my advocacy journey progressed, a surprising opportunity arose. On a whim, I decided to fill out the FAFSA, even before knowing if I'd be accepted into Liberty University's online social work program. To my extreme surprise I was accepted, and now, as a sophomore, I'm working tirelessly to become a voice for the voiceless. Becoming a college student was something I never once thought would happen to me, it just wasn't in the cards. Then all of a sudden, it was. It has been an enlightening experience thus far, and I can't wait to see where it takes me.

Mental health also became a deep passion of mine. Especially after I had suffered deep wounds from sudden losses, and how I felt as if I were screaming in a room full of people who could help but wouldn't or couldn't. It wasn't a choice but a necessity to seek out a therapist of some kind to help me get through it all. I reached out to NAMI, drawn by their mission and the impact they were making in the community. They were quick to recognize my passion and invited me to join their advocacy committee, where I could lend my voice and experiences to shape their initiatives. Around the same time, I stumbled upon the Superior Health Quality Alliance and was immediately impressed by their dedication to addressing health disparities. I applied to be a member, hoping to contribute my perspective and energy to their cause. Within hours of submitting my application, I received a call offering me the position of an advisor. It was a surreal moment, a validation of my newfound purpose and the impact I could have. Most recently, I was thrilled to receive an offer to join the policy champions committee through a social connectedness organization in Wisconsin. This unexpected opportunity allows me to directly address the issue of social isolation, a cause close to my heart due to my own experiences.
Today, my unwavering commitment to fighting for myself and others, from mental health and Medicaid reform to substance abuse and social connectedness, exemplifies the true spirit of advocacy. My story serves as an inspiration, reminding us that even in the face of immense challenges, one voice can ignite a movement and create a better world for all.

Part V
A Journey Wth No End
Grateful, Grounded, and Growing
A Future of Endless Possibilities and a Dedicated Determination
Throughout my relentless advocacy, I have transformed from a victim into a voice for change. I will continue to fight for reforms that ensure transparency, accountability, and support for those seeking assistance. I will not rest until every homeowner is treated with dignity and respect, and no one else suffers the devastating consequences of a system designed to help, yet ultimately fails them.

I was a stay at home every day mother of two and that was my small and simple life. Then everything changed and my life changed with it. Even though it has been an extremely difficult, tiring, and exhausting journey of fighting for what's right, looking back now I wouldn't change one thing. Everything that occurred was for a reason and that reason is where I stand today. Still a stay at home mom of two, yet with an abundance of advocacy and leadership trainings under my belt, experiences I never once thought to be a possibility in my life, and an advocacy that does not stop, and will not stop until I see these policy changes are put in their rightful place.

This is my story, but it is not just mine. It is a story shared by countless others who have fallen through the cracks of a broken system. By sharing my experience, I hope to inspire change, empower others, and revise policies. My journey from a frustrated homeowner to a passionate advocate stands as a testament to the transformative power of personal experience. It's a testament to how adversity can ignite a passion for change, leading to remarkable achievements even in the face of immense challenges. Although my story isn't over yet as I continue to fight for my family's health and home, I have found my purpose and place in this frightening world. Like the quote from one of my legislators Chief of Staff said to me, "The state of Wisconsin is not going to help you." Where exactly does one go when the government fails? I have yet to figure this out. Until then, my fight for justice continues.