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by Katherine Carol
Connections. In the 21st century, we live in an extraordinarily interconnected world. So why do so many people with disabilities find themselves disconnected?
Today, connections mean opportunity, the ability to influence, and the ability to form community, all of which lead to a more meaningful life. Connections help to build a powerful economic future for all of us. It is through our connections that we get past online job postings, Human Resources departments, and other gatekeepers or barriers to employment. Connections and the richness of our relationships can provide us with social capital, and it is social capital that so often determines future opportunities, including employment options.
Families build social networks from the time a child is diagnosed with a disability. What mother or father hasn’t brought together a team of doctors, negotiated with insurance companies, navigated benefits systems, and worked with school systems to tailor educational resources to meet their child’s needs? Well, with waiting lists for employment services of nearly 100 years in some communities, funding cuts, and less focus on employment and more on health care management, we are seeing more and more families taking charge and helping their members with disabilities plan their future as adults. In today’s climate, building social capital, and using it to support our loved ones in shaping their lives after high school, has to start with families. Think of families as providers leading the way and working with other agencies as collaborators.
However, are families leading the charge towards prosperity or towards poverty? Traditionally, most planning for people with disabilities has been focused on poverty planning.
When my daughter, Mikelle, was a transitioning student, I would sit up late at night in my favorite chair, sipping a hot cup of green tea, worrying about her future. I didn’t see myself working so hard to navigate the local school system and attend therapy appointments just to have her end up poor and alone. All this effort had to take her towards the best life possible. And it has.
Mikelle, who experiences cerebral palsy, is now 28 years old. She has successfully transitioned into home ownership, has a small business, and is accumulating a great deal of social capital in her community. How did she get here? Through prosperity planning.
Prosperity planning involves building social capital. We have found that if families start with the five steps described in the remainder of this article, they are well on their way to a more connected and more prosperous future for their loved one.
Relationships matter, especially in uncertain times. As you save and plan for the future financially, consider helping your family member increase their portfolio of friends, too. The goal is for them to develop enough social capital to result in strong community connections. These connections will prove valuable in moving forward with person-centered planning or, in our case, Take Action N’ Go teams. Case in point: Last year, 16 people gathered in my home for Mikelle’s person-centered planning meeting, and there wasn’t a provider in sight. Facilitating the meeting were her brother, Kasey, and her friend and adopted big brother, Ian. Mikelle met Ian at our local Starbucks where he was working as a barista. Their connection was coffee and community. Together, they ignited the interest of others and soon Mikelle’s community expanded. Many of the people at the meeting had been in her life for years.
Her vision and goals as she described them in the meeting were specific:
With all her social capital focused on a specific vision and goals, she accomplished those four goals in four months, hot man included!
Her iPad was purchased by Chelsea, a close friend and former barista who worked with Ian. Chelsea had recently experienced a personal tragedy when her mother was killed by a drunk driver just a few months prior to our meeting. Chelsea knew technology was vital for anyone’s future and her purchase was meant to both inspire others and pay tribute to her mother. These days you will find Mikelle on Facebook connecting with friends, learning about resources, and promoting her book and business. Consider it an online electronic portfolio.
Mikelle’s goals to sell more of the bracelets, and do more presentations, were reached simultaneously. While at a Colorado Developmental Disabilities Council meeting (where I am a council member), she was asked to present at a conference in North Carolina. During a meeting break, Mikelle mentioned her bracelet business to one of the council members who was on the planning committee for a national conference on transition; two phone calls later, Mikelle became the keynote speaker. She gave a wonderful presentation, How Not to be Roadkill on the Road to Transition, and sold out her bracelets in three hours at the poster session. The same thing happened at the national conference of APSE in Seattle where we both presented on 21st century rehabilitation strategies with a representative from Apple computers and the Washington Initiative on Supported Employment.
The hot boyfriend was serendipitous. Mikelle receives acupuncture for conditions related to her cerebral palsy. Acupuncture is not covered by Medicaid. Through one of my contacts I learned of The Chanda Plan, which provides grants to people with disabilities seeking alternative health care strategies. Mikelle was asked to be part of their fundraising video. It was at the annual fundraiser attended by 400 people that a certain handsome man saw my beautiful daughter’s face on the big screen and said, “Wow!” They met circling the silent auction tables and had date set before the night was over.Other contacts Mikelle has made through The Chanda Plan have led to her appointment by Denver’s mayor to the Denver Mayor’s Commission for People with Disabilities, where she is building even more powerful social capital and, yes, selling more bracelets.
Expect returns on your investment in social capital, and believe you can defy the odds and help your loved one create a prosperous life. Take time to sit down with your loved one at your favorite coffee shop and watch how people connect, interact. Notice their customs and language. Discuss how your loved one can connect and build social capital in the same way to help build a prosperous future for themselves. When Mikelle and I connected with Ian and Chelsea, it was through the language of the “bean.” Mikelle’s brother, Kasey, had been a barista too, so we took our conversations with him about work and parlayed it into a connecting point with both Ian and Chelsea. It wasn’t long before Mikelle was invited to store parties where folks were buying up her bracelets left and right. Soon, Mikelle became a community connector herself, helping others develop new friendships.
Too often, individuals with disabilities and their families focus on the disabilities rather than the abilities. Mikelle and I have met families from all over the country at the presentations we make for our business, Tango Consulting. Frequently, I ask parents or individuals with disabilities to tell us a little about themselves. Unfortunately, many start out with a string of labels describing what is wrong with them rather than what is right with them. I know labels get funding, but once you fill out the paperwork, let those labels go. Labels can act like a chain holding you and your family back from a brighter future.
To illustrate this point, our first interaction with Chelsea and Ian focused on a simple photo album Mikelle could bring with her. She would flip that thing open and show-off all the cool things she was doing – pictures of her summer jobs, hanging out with friends, and yes, dancing with some really hot boys (she has an ability to attract good-looking guys into her life). Do you think her social capital went up when people saw her doing cool things? You bet it did. People began to see past the wheelchair. They began to listen to her communication device as she shared stories of her high school adventures. We never discussed labels – we discussed accomplishments and competencies, and that is what they saw in her.
So, have that latté, look around at the people you see in the coffee shop, and get out a pen and paper and start brainstorming with your loved one about all the places they can connect with people. Think of all the people you talk to in a week: bankers, hairdressers, realtors, mechanics, coaches, drivers, clergy, as well as neighbors, classmates, and friends. Learn more about them. Most likely they know someone who can get your loved one closer to a job, internship, or other opportunity if they learn more about their competencies, vision and goals. That is how Mikelle has built social capital.
Connecting is not a one-time event. Relationships are built over time. After Mikelle graduated “outstanding senior” from her high school, her transition plan fell apart. Vocational Rehabilitation was going through major changes. We went through four counselors in a matter of months. Her future looked like a long waiting list with lots of time on her hands. Frustrated, we wondered “Where do young adults, business people and everyday folks hang out?” Coffee shops! As mentioned earlier, that was where we found the key to building her social capital. We also found customers for her bracelet business. Nothing helps build confidence like a stable social circle and the successes they can help our family members achieve.
People don’t read our minds. You and your loved one can ask people you know about help with an internship, a work trial, career exploration, or a job. In the early days of the career discovery process with Mikelle, we met with several young women who owned their own fashion design businesses. We had dreams that perhaps Mikelle could even partner with some of these women or have a business within a business. Each time we met with these young designers Mikelle learned about commitment and hard work, and began to understand the sales process. This ignited her understanding that while she liked designing and making bracelets, she LOVED to sell. She also learned what worked and what didn’t work for these other businesses. And we began to understand what Mikelle’s capacity for work was and how we needed to help her design a business that really would meet her needs for accomplishment and that would accommodate her lifestyle and disability.
Waiting lists probably won’t go away any time soon. Funding cuts may be on the horizon. What is certain is our service systems are unstable. Stability instead often comes from families for a person with a disability. Parents and siblings can play a valuable role in assisting their family member with a disability in building a strong portfolio of social capital that will pay off dearly in the future in building a prosperous life that includes satisfying work.
Katherine Carol is a 21st Century Rehabilitation and Publishing Expert. Her books include the newly released title, Shining Beautiful, The Brilliance of Community in Action (2012), co-authored with her daughter, Mikelle Learned (see http://www.TheShiningBeautifulSeries.com). They have developed the companion Web site with tools and tips, video, and stories that share Mikelle’s journey in an ever-changing world. Katherine can be reached at email@example.com, http://www.thetangocommunity.com, or https://www.facebook.com/KatherineCarolTango.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/251). Citation: Griffin, C., Owens, L., Roberts, K., Nord, D., & Gaylord, V. (Eds.). (Winter/Spring 2012). Impact: Feature Issue on Supporting New Career Paths for People with Intellectual and Developmental Disabilities, 25(1). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/251/251.pdf.
The University of Minnesota is an equal opportunity educator and employer.