How to Create a Lifelong Plan for Your Adult Child with Special Needs
Complicated planning can be simplified with the right support services.
How can you plan ahead for the needs of your adult children with disabilities? While this might be a burning question for aging or ill parents and caregivers of these adults, it should really be a priority for all parents raising and caring for children with disabilities. Regardless of the health or age of the parent or child, Special Needs Planning expert Phillip Clark says it’s never too late or too early to plan for your child’s future.
Clark, co-founder and President of ENABLE Special Needs Planning, deals with this question all the time: When is the best time to start planning for the future of a child with disabilities?
“Start a searly as possible,” says Clark, who runs ENABLE with his wife Chelsea Clark, PhD, co-founder and Vice President/Chief Operating Officer. “Nobody is given tomorrow, even for younger parents. Don’t wait until there’s a crisis or until you’re older,” he warns.
Clark’s personal family experience with his younger sister, Sarah, motivated him to launch ENABLE four years ago. He watched his parents navigate Sarah’s life, with doctors and other professionals repeatedly warned of the limited expectations for her life, now and in the future. “She may never learn to read… ride a bike… be in a mainstream classroom… live independently,” they’d tell the family. The negative predictions shattered the dream his parents held for Sarah’s future—but only for a little while. Instead, they believed Sarah could live an impactful, purposeful life, and took every step they could to make it happen. [With sweet irony, Sarah now works in preschool and second grade classrooms tutoring students in reading, among other duties.]
Clark feels the traditional special needs industry often fails families. He’s watched them being guided through a cookie-cutter process to planning for the future. This process focuses more on what would happen to the child when parents are no longer here to support their child but didn’t do anything to help them feel secure in their ability to plan for and create a great life for their child today.
Enter ENABLE, which focuses on a comprehensive planning approach that helps parents design a focused plan with their child’s interests, passions and dreams at the heart of it all.
“While we still have to address that ‘what if,’ as that’s a reality every family faces, comprehensive planning looks at so much more,” explains Clark, adding, “We look at the vision for what a great life is for each child and how to accomplish that.” He talks about the people, organizations and services families need to surround themselves with to create a team approach to their child’s future. In doing so, this comprehensive approach ensures their son or daughter can thrive—both today and down the road.
5 Keys Elements to Comprehensive Special Needs Planning
Clark talks about the five key elements of comprehensive special needs planning. And it all starts with a deep dive into the short-term and long-term vision for the child, which lays the foundation for everything else.
1. Vision: This helps families understand their why for planning. What does a great life for their child look like in two to three years,10 years and beyond? “Parents need a mindset of abundance,” says Clark. “They need to look at the hopes, dreams and natural abilities of the child, and then figure out how to plan around that.” This vision will serve as the backbone of every decision. Include children in this process if and when it’s appropriate, as they should have a say in the plan for their future. He notes that this vision will change over time so, every year, they should adjust the vision plan.
2. Life: Caring for a child with disabilities often means dealing with a lot of issues that affect daily routines. This part of the planning process helps families document every piece of information about their child that likely only the parents/caregivers know. For example, what supplements does the child take? Why? Who is the child’s doctor? When and where does the child go for therapy? Does the child have any allergies? What are his likes/dislikes? “This gives parents the peace of mind knowing that if they were away temporarily or had to make a permanent transition, a caregiver would be able to step in and use this guidebook to care for them,” explains Clark. Parents who work with ENABLE use its online planning tool, which walks customers through a guided questionnaire to document the details of their child’s life. Rather than getting overwhelmed with the process, the parents often work on it in spurts, perhaps taking three to four hours over several days. By the time they’re finished, they’ve created a 60-80-page customized guidebook specific to their child’s needs.
3. Resource: The team approach kicks in at this point, where the planning process identifies who and what the child and family will need. What services, individuals and organizations do they need to surround their child with to help this vision of a great life become reality? Clark advises thinking outside the box in this area—beyond just typical services such as speech, occupational and physical therapy—as their child’s abilities continue to develop and grow. “Think creatively, such as pairing them with the right job coaches,” says Clark. Part of this process involves making sure government benefits are in place so the child continues to get the support and services they need. “A lot of this is so confusing, with various forms and wait lists and requirements,” Clark points out. “Our team helps take the confusion off their plate. We work with families across the country, and so we dive into their state’s programs.”
4. Financial: Parents still need to have that uncomfortable conversation of planning for “what if we’re gone tomorrow.” But when parents start the vision planning process with a focus on what a great life the child can have today, the financial planning becomes so much bigger. Now it becomes, “what are we doing today and how are we being efficient with the opportunities” that will continue to allow that child to live a life of purpose and impact. “We have a team of Certified Financial Planners that come alongside families to look at their entire financial picture to ensure this is efficient,” says Clark. He finds, for example, that many parents say they can’t ever retire because they’re putting all their focus on their child and his/her future stability. But for a family to be successful, everything needs to work efficiently, including the parents needing to be successful and having improved cash flow so they can provide that security to their child ─ today and tomorrow.
5. Legal: This last element really ties the whole process together, ensuring the entire plan continues to happen regardless of what happens in the parents’ lives. This includes a guardianship conversation and a special needs trust to protect assets for the child while still allowing the child to get the government benefits he/she is entitled to. “It’s so important to work with an attorney who knows the specifics of what special needs planning is from a legal standpoint,” notes Clark, whose team helps families prepare for that legal meeting. ENABLE taps into its network of attorneys throughout the country and introduces families to lawyers in their state to collaborate with. “Part of ENABLE’s legal plan involves sitting in on the first one or two meetings to ensure everything is implemented and drafted as we discussed as a team—including the parents,” assures Clark.
Navigating support systems for individuals with disabilities can be overwhelming, frustrating and confusing—especially since programs vary per state. While parents can tackle this “future planning” themselves to createt heir own plan (see free resource, below), many of them find it helpful to work with the ENABLE team. “Some families do that, while others don’t have the time or motivation and need some guidance and accountability to get through process,” notes Clark. “That’s where we step in. We take the heavy lifting off their plate and help align strategies.” It typically takes about 12 weeks to complete the entire planning process with ENABLE, with families generally working one to two hours a week on the plan. Clark says that breaking it down really benefits families, who often feel overwhelmed and don’t even know where to begin.
Florida mom Erin, for example, decided to work with ENABLE to help plan for her 17-year-old son Trevor’s future. “Meeting with ENABLE inspired us to help Trevor tap into his passion and potential, as he is officially now an employee at our local IMAX theater,” she says. “I honestly don't know if I have ever felt this proud of him throughout the whole process of applying, interviewing, communicating with the managers and showing up for his first day of work yesterday, walking in with confidence and excitement. His confidence has skyrocketed!”
ENABLE is based out of Indianapolis, IN, with a secondary office in Tampa, FL, but serves families across the country through its interactive, online planning portal. For a free copy of ENABLE’s eBook titled “The Ultimate Guide to Special Needs Planning,” visit ENABLE online to request a downloadable copy. This 80-page guide walks you step-by-step through the five elements described above in more detail and includes helpful checklists and resources, too.
Author’s Bio: Lisa Beach is a freelance journalist and copywriter. Her work has been published in The New York Times, Good Housekeeping, Eating Well, USA Today GoEscape Florida & Caribbean, Parents, and dozens more. Check out her writer’s website at www.LisaBeachWrites.com.
Photos courtesy of ENABLE