Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

All of us want to have a bright and wonderful future, the kind of future that you talk about happening when people get together. But I have to confess, as a parent of an individual with a disAbility*, that there came a time when I might have settled for anything. I was discouraged and hopeless. How were great expectations ever going to be on the game board of life, much less realized? The truth is that all of us are literally standing on the threshold of tomorrow. There is a key and I want to share it with you: Hope is the most powerful tool we have! Hope is the key to the future. You can have it and success can be achieved!

What we need is the ability to tap into unlimited potential. That is exactly what I want to share with you: that in the community around us, there are resources that are unlimited, awesome and available!

Tapping the Power

At the Full Life Ahead Foundation we use a process called Full Life Ahead Planning Process (FLAPP). There are other methods by other names, but this is the process that we have found produces consistently positive results. In the FLAPP process, we help individuals bring together family, friends, service providers, and a vast array of community members to brainstorm, power-think, and link to possibilities. It is a process of Hope, Dreams, Action Planning, Action Steps, and Renewal. It takes courage on the part of an individual and their family to reach out to the community – to friends and family members, acquaintances, business people, faith-based support people, political leaders, school leaders, and others. These folks participate in a learning process about the FLAPP and the individual with the help of a facilitator (note: it is not a parent). The invitees choose to participate. The focus can be literally anything, from roadblocks in school, to social situations, to finding a job or career, to a way to live in the community with supports. But in my experience, the focus is on discovering and helping implement what a specific individual wants to do in life, where he or she fits, and what we (as a group) can do to help make it happen. Let me tell you briefly about two recent FLAPP experiences.

Jurdy’s Experience

Jurdy is a delightful young lady with cerebral palsy who also has visual impairments. She truly wanted to work, but she had become “lost” in the “system” and had been sitting at home since leaving school at age 21. Her family made every connection they could, but Jurdy needed some supports they couldn’t provide on the job. Time had passed and success had become impossible and seemed beyond hope.

Jurdy and her family heard about the successes that others were having with FLAPP and opened themselves to the encouragement and support of people who believed that Jurdy could have the life she dreamed about. Courageously, Jurdy and her family reached out to the community and her FLAPP began in October 2004 (at age 26). The members of Jurdy’s Board of Director’s (as her family chose to call it) are family members (mom, dad, brother), friends of the family (several are godmothers, one works at BellSouth and another owns a wine company; non-profit directors; a graduate student; a couple of chefs; a technology specialist; a photographer; a physical therapist), selected service providers (a Vocational Rehabilitation supervisor, the Full Life Ahead Foundation staff, a chosen facilitator, her VR counselor), and others including friends of the initial board. The FLAP enthusiastically examined her gifts and strengths and ultimately her strong interest in animals became the driving force. A young FLAPP member took Jurdy to visit the Birmingham Humane Society where she asked if they needed any volunteers. They were thrilled and she started right away. Ten days later, she was hired to be the full-time receptionist and greeter. She had her first check in hand in February just four months after that first FLAPP meeting! ClasTran (our para-transit, which was initially furnished through the VR counselor) picks Jurdy up and takes her home each day, freeing her mother for the first time in 27 years from being the sole source of transportation. Next on Jurdy’s list of goals is her own log cabin on some family acreage. Jurdy is currently participating in Partners in Policy Making in Alabama, is very excited about her life, and is definitely “on the move.”

David’s Experience

David, a dynamic young man, is a recent graduate of Georgia Tech University with a degree in Mechanical Engineering. He uses a power wheelchair for mobility (he has spinal muscular atrophy). During school he actively participated in the Mini-Baja Off-Roading Team designing, building, and racing cars across the U.S and Canada. Just before David’s senior year, the team trailer with all tools and the car was stolen. David, the team captain, took the lead in raising over $100,000 to replace the lost equipment and put the team back in competition. They wound up with not one, but two cars that season! David has designed modifications to his own Suburban and has the only vehicle like it in the world (gull-wing rear door).

David was offered a position designing prototypes for GM in Michigan upon graduation, but could not accept the job because he could not find accessible housing in the area or a cost effective solution to attendant care. David moved home to Stockton, Alabama to live with his parents while he looked for work.

A good friend at the Alabama Department of Rehabilitation Services introduced David to the Full Life Ahead Foundation. We invited several national experts into an e-mail round robin and the group began working with David on some essential planning pieces. David’s first FLAPP meeting was held at a regional two-day workshop by Full Life Ahead for parents and individuals with disAbilities. The group consisted of David’s parents and the participants. In David’s words:

• I must admit that going into it, I was skeptical about how a [FLAPP] could help me since I am quite independent and “established” in the way I deal with my abilities and disabilities, education, future plans, etc. I was not skeptical that it would work for most people, but I thought that the issues that I am working through may be too complex for what I imaged a [FLAPP] could handle. I could see how a [FLAPP] could help create a support group and help with disability-related problems, but not how to get a job or start a company. Basically, it is easy to see how it will work for small-scale, somewhat contained personal obstacles, but not business plans that involved many people, legal issues, detailed plans, and a lot of money. But then [K]atherine Carol gave an example of how a [FLAPP] is working for a friend who is self employed and wants to grow her business (who I think is not disabled) which made me realize that a [FLAPP] is not really a system that is JUST for [people with disabilities] to deal with disability- related problems, but a system that happens to work well for [people with disabilities] and works great with “normal” problems too. 
• Then, we held a [FLAPP] for me, which made it obvious that a [FLAPP] could work for more than just finding an attendant, working out problems at school, finding housing, or figuring out how to drive. It can also work for issues that affected multiple people in many BIG ways, such as starting a company. And no, I am not talking about a small company with $500 of startup capital, but the potential of hundreds of thousands of dollars of startup capital. That is big, and, it seemed to work great at my [FLAPP] Friday night. We are now working to schedule a [FLAPP] in January, which will include many local businessmen, friends, family, equipment suppliers, etc. My unfinished invitation list has over 30 people, and that doesn’t include my parent’s list, or the people who may come with Full Life Ahead.

David’s dream is to have his own business modifying all types of vehicles for all individuals (think hot rod) with a side business designing and modifying adaptive equipment for individuals with disAbilities. A few key investors and he will be on his way with this unique concept! At the January FLAPP meeting we discussed the resources David needs in the community and specific individuals we will invite for future meetings. The FLAPP is free to add people (bankers, business owners, entrepreneurs, investors) and adapt to goals as it goes along. There is strong community interest in this work-in-process. Meanwhile, David has accepted a job working for a ship-building company. Through members of his FLAPP, he made contacts for and has received approval of his State of Alabama Independent Living waiver to assist with personal care. Next will be the challenge of finding attendants, then housing and independence. David is definitely a rising star and one of the true success stories!

Conclusion

In our experience, the community wants to help – they simply do not know how. What they need is a way to become aware of specific needs for specific individuals in a friendly setting with fun, food, fellowship, and networking opportunities. That is the FLAPP. It works, it’s worthwhile, and it is definitely worth taking a chance!