Hello everyone and welcome back to the blog this week!
Today, we have something a little different to share with you – to celebrate the official launch of Integrated Living Opportunities’ website, we have decided to post a blog that was recently written by ILO participating family member Barbara Goldschmidt.
Barbara recently took part in the first phase of Center for Independent Futures™ New Futures Initiative™ training, and was gracious enough to take the time to write about her experience, and allow us to share it with you.
With that being said, please read on for a first hand account of what it means to become a part of ILO, and take the first steps towards helping individuals with disabilities build intentional, integrated and inclusive communities for themselves.
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What It Takes to Weave Bridges
Letting go of children so they can create their own lives is fraught with emotion for any parent. But when that child has special needs, the struggle that takes place in a parent’s heart is nothing short of heroic. We say we want safety, comfort and affordability, but what we really want is a happy ending, a victory, a miracle. However, miracles, like love, come only when the timing is just right. You can’t put “miracle” in your day planner.
I recently joined a group of parents seeking new ways to meet the challenges our children with developmental disabilities face as they become adults. We are part of a social experiment being led by Maedi Tanham Carney, founder and president of Integrated Living Opportunities (ILO) in Washington, DC. Our model for supported housing and social connections comes from Center for Independent Futures (CIF) in Evanston, Illinois. Their program, started 20 years ago by two mothers, is a thriving community with many participants.
A group of about twelve parents from the DC area traveled to Evanston to learn the secrets of CIF’s success. These are some of the qualities we saw in action, the basic elements for creating connections that endure.
1. Courage
Winter in Evanston, located on Lake Michigan just across from Chicago, is scary even for those who live there. “It’s going negative tomorrow,” our Uber driver told us about the weather predictions. I threw my husband Jim a glance. At least it would not be snowing.
Our training started bright and early the next morning. CIF Executive Director Ann Sickon asked us to use one word to describe how we were feeling. People said apprehensive, hopeful, exited, overwhelmed. As parents of kids with a disability, we’ve had lots of promises made. Who could blame us for being skeptical? Yet, we were there because the alternative was being home alone feeling stuck and burned out. Ann assured us many questions would be answered during the two-day training.
2. Holistic Thinking
My husband and I have long contemplated a move from New Jersey to DC because we want our daughter with special needs to be near her sister. In the back of my mind I knew a house or apartment was not the answer. Through some desperate, undirected surfing of the Internet I found Maedi’s website. It contained a diagram for a Full Life model created by CIF. In this multicolored image an individual is placed in the center of “circles of support”. The circles represent elements of a whole life: learning, earning, connections, fun, wellness, getting around, and community engagement. “Housing” in this model is less like stacking discrete bricks to make a wall and more like weaving strands of energy to build bridges to the world. Our daughter needed it. I need it. I had contacted Maedi immediately.
3. Allies
“You are post-institution people,” said the next presenter, Paul Arntson, an expert in community building. Parents nodded in agreement. During our lifetime we’ve witnessed the crumbling of systems we thought were indestructible : schools, banks, politics. Most of us feel we can’t count on the government to ensure our children’s future. If we are pioneers, it is out of necessity.
Since the core idea at CIF is a full-life model, Paul had us begin by looking at our own connections. He gave us a piece of paper and asked us to put our name in the center. Next we put the name of a non-paid affiliation in each corner of the page. We were supposed to draw a line from our name to the affiliation. These affiliations, Paul said, would be our allies in community building, offering potential activities, companionship, and funding.
I shot Jim another glance. We were woefully inadequate when it came to affiliations. I’d been feeling lonely for the past few years. This exercise made it clear that there was a real lack of something important. I felt my first stirring of conviction combined with the will power to do something about it.
4. Planning
You can’t build anything without a plan. The successful plans CIF had developed were shared with us in two books; a spiral bound Alternative Housing Options for Individuals with Disabilities, and a binder Opening Doors. Both contain step-by-step guidance based on the best practices CIF has found useful to date. We saw those plans put into action when we visited three supported housing locations, each a little different. The folks we met during our visits to the supported housing – both residents and staff – were inspirational.
5. Humor
In another group exercise we were asked to make posters of our adult children, using a photo and words that describe their character, achievements and challenges. Once they were finished and hung on the walls, we each spoke about them briefly. I was impressed by the unique and creative personalities parents described. Our daughter, Rachel, is also creative. She dances and cooks. Every day she makes up funny riddles. I threw one out to the group: What cheese are people afraid of? Answer: Camembear!
Everyone laughed. We needed to laugh. It’s easy to lose your sense of humor when someone you love faces serious challenges to their well-being. “Have fun while doing serious things,” Paul recommended. It’s part of the lubricant that will keep a group in motion.
6. Reflection
Anyone who’s ever had to make a group decision knows how easy it is to get derailed. Our trainers made it clear that there should be a firewall between idea-generating and idea-evaluating. A non-negotiable rule: Let all the ideas come out before anyone starts to give opinions.
Once all the ideas are out, ask if they suggest another idea that might be new. From there, create outcomes that everyone can act on. If people don’t have “skin in the game”, they easily become critics. Begin every new meeting by reviewing what happened at the last meeting and asking, “What have we learned since last time?”
7. Joy
It was an intense two days, as stirring for the trainers as it was for the parents. At the front door, Ann was saying goodbye to parents. I gave her a heartfelt hug and she sent us off with these parting words. “Remember how important it is to celebrate. Celebrate every accomplishment. Don’t complete a task or achieve a skill and then rush to the next item on your list. Celebrate. It’s a way to connect, relax together and appreciate what you’ve done so far.”
As we headed home, I thought about miracles and how they may come as a gentle wave instead of a thunderbolt. I felt the reverberations from all the people we had met, buoyed by shared intelligence and genuine care. As the plane soared high above the clouds, I began to plan a Valentine party for the next day. A perfect way to celebrate the start of a community with heart.
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Again, thank you all so much for taking the time to visit our blog today. We hope that you enjoyed reading Barbara’s piece as much as we did. If you have any questions about ILO or becoming a participating family member, please contact us! we would love to talk to you and your family member with disabilities about the hopes and dreams you all have for your futures.
See you all next week!
