HEART-WORK IS THE BEST WORK

PHOTOS BY JULIE OLDFIELD

HEATHER BURROUGHS WHO I AM:

• Empowerment Advocate personally connected to the special needs community

• Grants & Media Coordinator at Homesteads for Hope Community Farm

• Podcast Host: Growing Purpose, Cultivating Inclusion

• Health & Wellness Coach

• Motivational Speaker, Educator/Trainer/Mentor

• Writing a book: Pardon Me, but Get the #@$% Out of My Way and developing an online workshop titled: How to Become the Polite, but Effective Badass Next Door.

Please tell us a little bit about yourself and your background:

I was born and raised in Rochester. Long before most people knew what Autism was, my sister Erin taught me. The challenges she faced pushed me into advocacy very early on. Like many people who are “wired differently,” Erin used to have some trouble fitting in and many still underestimate her potential. It became my mission to not only raise awareness and understanding for people with developmental differences, but to also support families who felt like their loved ones were misunderstood. I have found many special needs families are overwhelmed and need some encouragement to speak up and advocate for what they need.

What has prepped you for your life today?

I started my career as a school psychologist, just like my Dad. Sadly, he was diagnosed with Parkinson’s and Dementia in his early 50s and never fully knew I followed in his footsteps. Losing him was so hard, but to this day, that loss pushes me to build a life that’d make my Dad proud.

When I was working in education, I was recruited to help create and lead a behavioral health team in one of the largest nursing homes in the country. This experience was invaluable, but working in a nursing home during the pandemic broke my heart. All of life’s “rough spots” could have made me bitter… but I think, they made me a better person. Every tough life lesson taught me something I needed to be the woman I am today.

Have you ever had a moment that shook you and could have broken you, but you’re grateful it happened now?

I know firsthand that life gets messy; it doesn’t always go as planned. Regardless of where I have worked over the years, the people who feel lost or overwhelmed always find me. I joke that I am an “underdog magnet,” but I live out loud and people have watched me overcome more than my fair share of challenges. So, when things get tough, they want to partner up with someone who gets it.

Yes! When my daughter Devyn faced discrimination from our old school district, it shook me, but it pushed me to a whole new level of advocacy. I used to be quiet… Okay, actually I was painfully shy. Seeing Devyn’s disability being used against her pushed me to find my voice. Sometimes the people who are supposed to help us lose their moral compass and sometimes the usual procedures don’t work. As the school district invested their energy into finding loopholes and paying crazy legal fees to defend their position, I built an army of supporters. People from all over the world cheered us on and that helped us endure an exhausting 8-year federal court battle.

Talking to the media and standing up at board of education meetings sparked a new passion – public speaking. I would have never imagined that I would be comfortable speaking in front of 10 people, let alone 100s, or even 1000s, but inspiring and empowering others has become one of my favorite ways to make an impact.

Despite how cruel our old school district was to us; I stood my ground because school districts need to honor ADA law. Gates Chili wanted to make an example out of me, so no other families would want to speak up, but I knew this ordeal was bigger than me or my family. By refusing to comply with NYS Dept of Education or the US Dept of Justice, the Gates Chili school district became the legal example of what not to do. So, I guess we needed them to be stubborn, because the school district’s arrogance is what ultimately lead to us setting a legal precedent for the country. Now, no other school district can take the stand they did and every student who needs service dog accommodations will not have to fight for them the way we did.

What is Homesteads for Hope and how did it get started?

Much like my family, the founders of Homesteads for Hope know firsthand how traditional systems often fail our loved ones with special needs. Jenny’s brother Chucky has Autism and his self-injurious behaviors intensified during his teen years. At one point, the only option was an out-of-state placement. It was heartbreaking and Jenny and her mom Luann worked hard to get Chucky home knowing full well that the residential and day program options probably wouldn’t accept him. The sad thing is that years later, families have less choice than we did 10 years ago. The special needs community has been losing ground.

Jenny and Luann researched intentional community campuses where people of all ages and abilities have a safe place to call home, make friends, and learn important life skills. They founded Homesteads for Chucky and all the other families who needed a safe haven; a place where they are embraced and supported, not judged or shunned.

What is the mission behind HFH, and what role do you play in the organization?

Our inclusive community may be the first of its kind in Western New York, but we’re modeled after successful intentional communities and care farms across the country. We currently serve 600+ families and have 1000s of community visitors each year. While all ages and abilities are welcome at our farm, our focus is adults with disabilities who deserve choice over where they learn, work, socialize, and live.

I have been a Homesteads for Hope supporter long before the 55-acre property was purchased in 2016. Last March, I officially joined the team. Jenny knew that I would not only help secure funding to forward our mission, but she also recruited me to raise awareness and spark advocacy for the important issues our population is facing. Many of the people who work or volunteer at Homesteads have a very personal connection to special needs.

Our team is dedicated to finishing up our current phase, so we can break ground on our future housing village.

People would love for us to start housing now, but we know that we have to have a strong foundation and be set up to be self-sustaining before we take this next step. We have to do it right, too many people are counting on us. As group homes and day programs continue to close at an alarming rate, our community is growing and welcoming in people losing hope, stuck on waitlists.

What drives you to be so passionate and determined about your work? Like any parent, I need to know my kids will be okay when my husband and I are no longer here. Most of us did not enjoy how isolated we felt during the pandemic and are happy to be getting back to our normal routines. Approximately 70% of adults with disabilities that qualify for services (like day programs or a group home placement) are still “stuck at home,” with no choice but to live with aging family members. What happens when parents can longer be caregivers or worse yet, who will advocate for this population when these parents pass away? In my position here at Homesteads, I embrace tough conversations with an open heart and almost always find allies who have no idea that traditional services are falling apart. Homesteads gives people like me some real hope… Yes, securing grants and encouraging donations and investments is exhausting work, but I am incredibly proud of our efforts and the impact we are making.

PLUS, not many jobs give you the chance to host a press conference, record a podcast, help an apprentice learn a new life skill, and hold a chicken all in one shift! I am never bored and never blocked from doing what better serves our population. As a grass roots organization, we aren’t bogged down by red tape and bureaucracy. We get things done!

What is one of your favorite highlights from your first year at the farm? There have been a bunch, but meeting Temple Grandin ranks up there! Every time she calls or texts me, I feel my heart race and my cheeks start to hurt from smiling so hard. I have always looked up to Temple because she helped redefine how the world sees Autism. I love that Temple appreciates the hidden blessings of her Autism. Like her ability to visualize complex ideas that solve problems in ways that are very different than the norm. Knowing that one of my heroes endorses what we are doing here at Homesteads, helps me know I am where I am meant to be, doing what I am meant to do.

Tell us a little about your new podcast. During the pandemic podcasts really gained some traction because they helped people stay connected. We knew we wanted to do one and were thinking we’d just kind of “wing it” and come up with a make-shift studio at the farm. Luckily, we learned about RocVox Studios! The owner (Scott) has been phenomenal and as a parent of child on the spectrum, he understands why our message is important. This year, we plan to release a minimum of 28 episodes of our GROWING PURPOSE, CULTIVATING INCLUSION podcast.

They are on YouTube and all the major podcast platforms. So far 7 have dropped and the response has been great! We would love for everyone to follow us (or subscribe) and if anyone loves what we are doing and wants to sponsor additional episodes, please reach out. There are so many important topics to cover and we love where this is going.

Try to describe this organization in 3 words only:

Growing, Acceptance & Community

How do you manage your work-life balance and prevent burnout? That is tricky. I would love to tell you I am better at this, but I am a work in progress. In addition to the farm, I also work as a coach/mentor, and I am a regional lead for an advocacy group… Oh yah, and I am also a wife and mother to four children who have varying levels of special need. I am learning to say no when something detracts from the “rocks” in my schedule. My “rocks” aren’t supposed to be moved or deleted because they help me “refill my cup,” so I can be truly present for what matters, like my family.

What’s your definition of this project being a success?

Our focus right now is creating our Forever Homestead. This project is super important to our mission because it finally gives us the chance to be on campus all year round. Our apprentices and members love the farm and we are working hard to create accessible, winterized spaces that respectfully meet the needs of the people we serve. This project has brought together so many do-gooders. People who despite the economy, are pitching in with donations of labor and materials. We have some real champions rallying behind us and it will be a success when we “move in” this fall. The walls are going up. The renovations are underway. We know that as the snow melts and people start visiting, the excitement is going to skyrocket.

What does Homesteads offer our community?

We have 3 different memberships, including our popular CSA Food Share. Homesteads also offers a variety of programs for people with and without disabilities. Our programs are wellrespected because we use nature’s classroom to help people uncover potential and grow purpose. Our venue is GORGEOUS. We are right on the wide waters of the Erie Canal, just 10-15 minutes from downtown. Homesteads has been a hidden gem, but more people are finding their way to us. If you want to learn more, check out our podcast or better yet, stop by on a Thursday evening for our live music.

What is your vision for Homesteads For Hope for the next three years? What about in five?

In three years, we will be celebrating our 10-year anniversary. Our goal is to have our inclusive housing village started by then. In five years, our goal is to be offering a more extensive menu of innovative options for people who are often misunderstood and almost always underserved. Adults with intellectual and developmental disabilities (I/DD) are the largest unrecognized minority group in the US and our efforts are to give them back choice about their lives and find ways to help them cultivate lives with purpose.

Tell us something we don’t know about this incredible place. All of our team members are personally invested in moving our mission forward and we all know this is bigger than us. Homesteads may have been found by one family who felt alone and unsupported, but each season we widen our reach; we create solutions that serve a variety of people with unique needs. You may think that the farm “won’t work” for someone you love, but we encourage you to come with an open mind and heart and we promise to do the same. Everyone is welcome here.

BACKGROUND:

While I did not know my sister had Autism until I was an adult, the challenges she faced pushed me into advocacy very early on. Like many people who are “wired differently,” Erin had some trouble fitting in. Not everyone embraced her quirks and often underestimated her potential. To be fair, not many people knew much about Autism 40-something years ago. It became my mission to not only raise awareness about people with developmental differences, but to also support families who felt like their loved ones were misunderstood. I have found many special needs families are overwhelmed and benefit from encouragement to speak up and advocate for what they need. To accomplish these things, I became a school psychologist, just like my Dad. Sadly, he was diagnosed with Parkinson’s and Dementia in his early 50s and never fully knew I followed in his footsteps.

Having a sister with Autism and a parent with a significant health condition challenges made me bitter, for the most part, I think they’ve made me better… It was definitely great prep for my role as a mother to four children with varying levels of special needs:

•Devyn Rose just turned 16 and has a rare genetic disorder (AGO2) which causes life threatening seizures, limited ability to vocalize (talk), motor delays, and learning difficulties. Her story is followed by 1000s on social media and she is “pretty famous” in the service dog world.

•James is my “bonus son.” He just turned 16 and has Autism. He loves music, math, and statistics about just about anything - Whether it is politics, weather, sports, etc.

•Lillian is my “bonus daughter.” She is 12 and also has Autism. She loves music, is artistic, and is into poetry. Lillian has a big heart and feels things deeply.

•Elliana turns 18 in April. She was my preemie (9 weeks early), has a connective tissue disorder, and ADHD. She is set to graduate this year and after watching how medical professionals frequently helped our family, is training to be an EMT.

I met my husband in a playgroup for children with Autism that Devyn and James attended. Coming from an unhealthy marriage where I was often solo when it came to the kids, I was moved by how involved Jim was with his kids. We were friends for years and although we didn’t plan to fall for one another… we did! When I was fighting with Devyn’s school district over accommodations, Jim showed me he cared and stood up for me. We got married in August 2019 (it was the first farm at Homesteads for Hope). Jim is very hardworking and always goes above and beyond for us. He is a Marine Veteran and owns a well-respected masonry business.

DEFINING MOMENT: I was working as a school psychologist who specialized in Autism and was respected in my field. When my daughter Devyn’s seizures started “stealing away milestones,” I traveled to different specialists across the country and tried many outsideof-the box ideas, including raising the funds to get her a highly trained service dog to assist with her seizure detection and her mobility issues.

Devyn made tremendous progress her last year and a half of preschool with her service dog by her side. Everyone was impressed and then the most unexpected thing happened - Right before kindergarten started, our old school district decided to take Devyn’s dog off her education plan (IEP) and prohibited their staff from helping Devyn use her service dog at school. When asked why, I was stunned… Gates Chili school district cited Devyn’s disability as the reason she “wasn’t worthy of accommodation.” The Special Education Director told me, “If your daughter could speak, we wouldn’t have a problem, but she can’t and therefore, we don’t see how she can really learn to handle her own dog and we don’t think we need to try and help her do so.” Even after explaining that Devyn was already using non-verbal hand gestures with success, they didn’t budge.

So, I tried the usual steps to come to agreement (meetings, impartial hearings, etc.) and they still wouldn’t change their policy. They denied her service dog access unless I sent in an additional person (at my expense) to help Devyn use her dog at school. Her 1:1 aide and 1:1 nurse wanted to assist Devyn but were not allowed to and the people who did speak up for us were penalized, and some lost their jobs.

Out of desperation, I began speaking at board meetings and going on the news. Her FB page had lots of traffic (100K+ some days) and our audience grew. I even got a billboard and hung it up near the school. Nothing worked, so I turned to the NYS education Department and the US Department of Justice. Both found in my favor and told Gates-Chili Central School District that their policies were antiquated and needed to be updated. The school district still refused! So, then the United States of America sued Gates Chili School District for discrimination. It was a long and grueling 8-year process, but worth it because we set a legal precedent for the entire country. Schools can no longer take a hands-off approach to helping children learn how to utilize supports that effectively meet their needs (like learning to drive motorized wheelchairs, type braille, use a communication device, or use their service dog). Our court case can be found on ada.gov: https://archive.ada.gov/gateschili/ gates-chili_sa.html and her story can be followed on FB: www.facebook. com/DogForDevyn

TODAY: made me even more of an advocate – it helped me find my voice. Until this point, I considered myself shy, but that wasn’t getting me anywhere and I realized that while manners are important, being heard is more important, especially when our loved ones have unmet needs.

Disgusted with what this district had done, I knew it was time for a new career. I walked away from 16 years in the field of education and started a new career in healthcare. I spent 7 years at one of the largest nursing homes in the country and helped set up their Behavioral Health Department. Working in this setting was very rewarding, but the pandemic had heartbreaking consequences that impacted the way I could serve the people there. To make matters worse, the staffing shortage everyone was dealing with hit me at home. When I could no longer find responsible caregivers to help with my daughter, my husband and I were covering huge gaps in the 24/7 care she requires and I was forced to leave this job for more flexible work options.

Being home more helped my health and wellness business explode and my role as a speaker and educator also grew. Knowing what I stood for and effects of the pandemic, the staffing shortages for people with disabilities have devastated systems that were already struggling. Many day programs remain closed or are running at half capacity and group homes are closing at an alarming rate. As a result, out of the 6+ million adults with intellectual and developmental disabilities (I/DD) who qualify for services, it is estimated that only one-third are in a fulltime program and that 70% have no choice but to live with aging family members. No one is answering valid questions like: What are these people doing all day if they cannot attend programming AND who will take care of them when their families are no longer able to? how passionate I was about advocacy, last March, the founder of Homesteads for Hope recruited me to join them at the farm.

WHY HOMESTEADS FOR HOPE IS SO IMPORTANT:

People with special needs already face so much and the systems created to help them should not get in their way, but unfortunately some do and many fall short. While all businesses were hit hard with the ripple

There is a misconception that this population is highly supported and has everything they need. That is simply not true and as many of us have resumed many of normal activities, adults with I/ DD (and those that love and care for them) remain “stuck” at home, feeling isolated and forgotten. Homesteads for Hope bought is dedicated to this population.

We bought our 55-acre property in 2016 and over the last 6 seasons have made tremendous progress serving over 600 families in the Rochester area. Our current phase has 15 acres dedicated to our farming and 10 acres for related enterprises and social opportunities. We differ from other settings because we put down our technology (phones, tablets, etc.) to embrace nature’s classroom. This re-teaches people the joy of getting their hands dirty and taking pride in hard work. We grow what our people love to do and build on their strengths. By gently pushing people to explore new opportunities, we help them forge lasting relationships. Many who may not be suited for a traditional college experience consider our farm their higher learning experience and we take that responsibility seriously. In addition to our strong sense of community, we empower our apprentices to become self-advocates and they shatter misconceptions that people with I/DD cannot be productive members of society. Their hard work adds to the success of our farm. They are not “humored” with busy work. They are stretched and people who have been characterized as “unemployable” have transitioned into “real jobs with real paychecks.”

Some have said that we “break the mold” when it comes to a nonprofit that serves the special needs community because we aim to be self-sustaining and make giving back to our community part of our model. The people we serve are sometimes viewed as “takers” or a drain on resources and flipping that for them and allowing them to pay it forward is invaluable. Every day, we aim to change hearts and minds for the better and by doing this, we also feed 100s of families in our community. Our Community Supported Agriculture (CSA) program is very popular and when there is an abundance, we like to give back and supply food pantries with fresh produce to offer those in need.

CURRENT FOCUS: Our current focus is our FOREVER HOMESTEAD Project. We are renovating our 200-yearold historic estate home into a 6000sqft enrichment center. Until now, we lacked accessible, winterized spaces to be open year-round. With our new space under construction, that will be different this season! Being on campus all year will provide the continuity our families need and we will have the room to grow... We will be able to welcome in more community members desperate to get off waitlists and get involved in something meaningful. We have raised nearly 70% of the needed funds to get this house done by September 2023. We are about $300,000 away from our goal. If people would like to donate to this specific project or help support our mission in other ways, they are encouraged to visit our website, follow us on social media, and listen to our podcast.

FUTURE: People ask me how I ended up at a farm and I say, “This one grows hope… and we all need more of that, especially people in the special needs community. I am here at Homesteads because my heart knows that the traditional options that families have relied on are crumbling and I want to be part of something that has more than delivered on proof of concept and with support, will continue to fill critical needs for our community. Like every parent, I need to know my kids will be okay when I am no longer here and the farm is a safe place where they can come to socialize and learn, maybe work, and someday live. While our current phase is very exciting, I am thrilled that once we are done with it, we can move onto our inclusive housing village. It will be a place to call home for people with and without disabilities. A place where neighbors help neighbors and we are all better for it. It is an exciting time at Homesteads and I know what the future has in store is even more exciting!”