At age 21, our friends with developmental disabilities lose access to many of the supports they receive as children. The #Imagine21 mini-documentary series highlights the incredible stories of adults living with autism and the unique circumstances they face as they age into adulthood. Through them, viewers will be intimately acquainted with just a few of the people behind this diagnosis and come to a fuller understanding of the value they have to add to our lives when we as a community respond to the challenges they face. Watch the trailer below.
Madison House will be releasing these films online every few days throughout April, National Autism Awareness Month 2017 – be sure to check this page next week for updates. As we release each film, please share them on social media with the hashtag #Imagine21. If you’d like to contribute to this project, please donate to Madison House Autism Foundation. We appreciate your support! Also, be sure to mark your calendars for Autism After 21 Day on April 21st.
Jeffrey’s post-secondary education program empowered him with the skills he needed to thrive in a neurodiverse intentional community in North Carolina.
Kacey loves chickens. Her dream is to live on a therapeutic farm in Maryland, but the lack of housing options for adults with autism has limited her ability to choose a future that’s right for her.
Brian was bullied growing up and once turned to substances to cope. He eventually became sober and found spiritual fulfillment through practicing and teaching yoga.
David “The Cartoonist” loves to animate. He recently moved to an intentional community in North Carolina with his family, and while David has made great friends at his new home, he is still struggling to adapt to this major life change.
Andrew is somewhat verbal and can do most basic self-care tasks, such as bathing and clothing himself. He craves the same independence that his brother and older sister enjoy; however, lack of programming makes transitioning to independent living out of reach.
AJ’s love for horses developed after he saw the movie “Seabiscuit” in 2004. After pursuing his passion for many years, he became employed at Madison Fields where he is able to work with horses while earning a paycheck.
Zach is considered nonverbal, yet lights up the room with his fun-loving personality and big smile. Communication issues once left him frustrated, leading to aggressive behaviors and meltdowns. Today, Zach is living in a supported living situation where he is happy and thriving. (Coming soon!)
Brian loves Disney music, french fries, and hugs. Because of his inability to communicate, he struggles with behaviors that prevent others from seeing the wonderful person he is on the inside. (Coming soon!)
Alex utilized his expertise in horticulture in his Americore Vista volunteer position at Madison Fields. He feels that while autism is an undeniable part of his reality, it does not define him as a person. (Coming soon!)
Jason lives a very busy and active life. He works as a gym custodian at the YMCA, is a Special Olympics athlete, and even finds time to do karaoke several times a week. His community involvement has been crucial to his development in both the career and social spaces. (Coming soon!)
Madison House Autism Foundation is excited to unveil a project that has been in the works for over a year now: the new Autism Housing Network (AHN).
“The AHN is the first interactive online community for adults with special needs and their families,” says Desiree Kameka, national housing expert at MHAF. “It serves as a hub of housing ideas and resources to help project starters create new options for thousands of adults with autism and related disabilities across the nation.” JaLynn Prince, President of MHAF, explains “The AHN is an answer carefully planned and implemented with a delicate sensitivity for adults, young and old, on the autism spectrum.”
The AHN offers various features that can make navigating and understanding the housing landscape much easier. The AHN Housing Directory gives users the ability to explore emerging and existing housing models through an interactive map and a user-friendly catalog. There are a few things that make the AHN especially unique. If you create an account on the site, you can save your favorite housing ideas to your Favorites page to refer back to when you’re ready. You can also submit your own projects to be added to the directory and map for other users to see and share. See a screenshot of the interactive map below.
The AHN Resource Directory is a collection information, videos, presentations, and other media to educate parents, self-advocates, and project starters on the best practices in creating housing for adults with autism and related disabilities. Users can submit their favorite resources to share with others.
Do you have a specific question or comment about your housing project? The AHN Discussions Board is a great place to say whatever is on your mind. The AHN community would love to connect while helping you find the answers you need to make your project a success.
We welcome and invite you to join this exciting new community that is making housing a reality for adults with autism and other disabilities around the country. Visit www.autismhousingnetwork.org to sign up or click the button below:
As part of a nationwide movement to create local housing and employment solutions, the mother of a young man on the autism spectrum started Erik’s Ranch & Retreats. This past April, the Minnesota retreat opened its doors, and a second location, a Montana ranch, is in the process of fundraising to build a living and working ranch with the guest accommodations run by the adults with autism who live there. They have a $2.7 million capital campaign goal that will build 4 guest houses, two member residences that would provide independent living for up to 14 adults with autism, a visitor center, and a riding arena. Located just outside of Minneapolis and the Mall of America, Erik’s Retreat offers their bed & breakfast guests and local “voluntourists” transportation, breakfast delivered to their rooms, and specialty tours led by adults with autism. Erik’s Retreat employs these individuals while giving them an opportunity to showcase their strengths and abilities for a wage of $14/hr.
The inspiration for starting the retreat was Erik’s love of horses. Erik is a non-vocal, autistic adult who needs one-to-one assistance, but he is part of a growing team of five tour guides who lead visitors through various fun destinations such as the Commemorative Air Museum, the Walker Art Museum, University of Minnesota Stadium, and the Canterbury Racetrack.
‘Members’ at Erik’s Retreat are not molded to pre-existing jobs – instead, jobs are structured to suit individual interests and skill sets. This is not just another bed & breakfast – Erik’s Retreat in Edina, MN offers person-centered employment options, individualized life planning, planned recreational and social activities, and supportive housing arrangements for adults on the autism spectrum.
Deanette Smith, Director of Programs and mother of a 9-year-old on the spectrum, left her corporate job to join the Erik’s Retreat family after enjoying a tour. She participated in her first tour as part of a corporate team-building activity with TJ and Erik as guides. Deanette states, “It was team-building, fun, and clearly built [the guides’] confidence.” Though Deanette was particularly inspired given her experience as a mom, her colleague later told her that it was the best team-building event they ever had with off-site managers.
I had the pleasure of staying at the newly renovated Erik’s Retreat while visiting Minneapolis. The guest rooms are clean and comfortable, accommodating for even extended stays as each contains a kitchenette. Typically I can be a bit grumpy in the mornings, but when my personal concierge, Sam, brought breakfast to my room, it was almost as good of a welcome to my day as coffee – well, almost …
There is an overwhelming need for more local solutions like Erik’s Retreat. They currently have a waitlist of over 180 individuals seeking housing and are still trying to raise money to complete renovations in Minnesota, while also building guest accommodations in Montana.
Next time you are thinking of planning a trip to the Twin Cities, support their efforts and make a reservation to stay at Erik’s Retreat. Oh, and don’t forget to take a tour or two!
Desi’s Desk is a blog post written periodically by Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism FoundationDesiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.
By now, many of you have probably seen Brian Bethun’s article The End of Neighbors or coverage by The Today Show, TIME Magazine, or AOL that reported 50% of all Americans do not even know their neighbors’ names. Bethun illuminates the notion that we, as a society, need to foster more human connections.
It is no surprise to those of us in the disability advocacy community that neighborhoods today are not cultivating community relationships let alone integrating those who have intellectual or developmental disabilities (I/DD). For years, organizations, like those in the Coalition for Community Choice (CCC), have been working to convince policymakers that being part of a meaningful community must extend further than simply being located in a neurotypical residential neighborhood.
People with I/DD who are living in their family homes or group homes often have little social capital because they lack employment options, transportation, and opportunities to develop real unpaid friendships with their neighbors. I may have a conversation with the gentleman who bags my groceries every week, but I don’t feel it’s appropriate to invite him to my apartment for dinner as he takes my groceries to the car. We first need to build a relationship … but how?
Grass roots efforts across the nation are trying to create public-private partnerships and develop “intentional communities” that would offer urgently needed housing options to people with and without disabilities. By fostering integration and relational community, these spaces may include planned recreational opportunities, social enterprise employment options, and community amenities that would benefit the local area. Counties, faith communities, and local non-profits have stepped in to support these efforts financially. Designed and informed by local individuals with I/DD, these community projects relieve states of a financial burden. While discrimination and NIMBY (Not In My Back Yard) are struggles facing these supportive housing opportunities, government policy creates barriers, as well.
Susan Pinker, author of the Village Effect, says that “face-to-face contact matters: tight bonds of friendship and love heal us, help children learn, extend our lives and make us happy.” The CoHousing movement, Fellowship for Intentional Communities, Agrihoods, and other “Live-Work-Play” planned communities are emerging for neurotypicals who are fighting against the effects of isolation. Intentionally neurodiverse communities aim to foster supportive environments that value and nurture relationships. You will undoubtedly learn your neighbors’ names in these friendly neighborhoods.
The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.
If you would like to connect with others and be an advocate for increased supportive housing choices in your state, Take action now and make sure your state ensures people with I/DD will have a broad range of housing options for the future!