5 Reasons Families Don’t Create A Special Needs Plan…And What To Do About It

Families across the country have shared with our team that they know that they need to plan for the future. They’ve been reminded of that reality over and over again by well-meaning professionals. But these families often share with us that they feel stuck in their current circumstances and incapable of moving beyond that to begin the planning process.

Through personal family experiences (having grown up with a younger sister with Down syndrome), I understand that there are so many emotions that arise as families think about and plan for the future. Overwhelm. Confusion. Frustration. Worry. Fear.

I understand the seemingly never-ending checklist of tasks that parents of a child with special needs have to accomplish… with so much urgency and often fast-approaching deadlines.

Between the emotions and the lists, many families find themselves paralyzed, unable to make any decisions for the future of their family or their loved one with special needs.

I’m sure you’ve heard stories about families who didn’t take time to create a plan and how a single life changing event destroyed their ability to provide for their family in the way they would’ve wanted to. Perhaps you read the recent article published by The Mighty about how Aretha Franklin expressed concern in a hand-written will about what was going to happen to her son with a disability when she was no longer around to care for him.

We all know it’s crucial to plan for the future. To protect your family and give them the opportunity to succeed. Many families are proactive in their planning and take on this responsibility whole-heartedly.

But so many others don’t plan at all.


Why is that?

I have a unique perspective on that question. First, I am blessed to be a proud older brother to an amazing sister with Down syndrome. Sarah’s impact on my life has led me to spend my career challenging the traditional planning industry’s approach to Special Needs Planning. {You can read more about my approach here.}

Also, I have over a decade of experience serving families, much like my own, and guiding them toward strategies that are allowing their loved ones with special needs to live purposeful, impactful lives today—and in the future!

Throughout my planning career, I’ve seen extremes…

Once, I met with a grandmother who wanted to begin planning for her grandson’s GREAT life – a grandson who hadn’t even been born yet! Her daughter’s pre-natal diagnosis was all it took to spur this determined grandmother to make sure her grandson was prepared to live an amazing life.

I’ve also met with far too many recently widowed mothers, who, through tears of uncertainty, share heartbreaking details with me about the tragedy they’ve experienced. Through our conversations, they unfortunately come to realize that planning now, after this loss, is much more difficult than it would have been had they created a plan for their family’s future while their spouse was still alive.

I’ve had meetings with parents who’ve shared with me that they have known that they’ve needed to plan for years—but they’ve continually delayed planning conversations because of various negative emotions and life events. But now, they’re finally ready and determined to create a plan for their family’s future!

I’ve met with adult siblings who were trying to sort through their parent’s estate plans and figure out the new responsibility of being the main provider and caregiver for a sibling with special needs. They often comment: “We wish we would have had these conversations sooner – while mom and dad were still around to help us think through and plan for this transition.”


Let’s be honest…

Planning for the future isn’t the most exciting thing in the world. It’s not something that families wake up in the mornings and think to themselves: “I can’t wait to create a Special Needs Plan today!” I realize that most families don’t want to devote the time, energy, or resources it takes to plan. But they need to.


5 Reasons Families Fail to Plan

Throughout my career, I’ve found that there are five main reasons that families often delay the planning process, even though they know that it is vital for their family.

  1. Families feel overwhelmed, frustrated, and confused by the planning process.

Every single family that we serve tells us that they feel each of these emotions at some point during their special needs planning journey. If you’ve ever felt any of those emotions trying to plan for the future, let me be the first to let you know, you are not alone. It’s essential that we find ways to overcome these emotions because they are often the barriers that stall a family’s decision to create a special needs plan – a plan that would allow them to achieve peace of mind, knowing that their entire family, including their child with special needs, was well planned for.

One way to help overcome these negative emotions is to combat them with a strong WHY, or reason for planning in the first place.

Ask yourself the following questions:

  • WHY would I begin the planning process in the first place?
  • What do I want to BE for my family? Maybe you want to be a great provider. Maybe you want to allow your family to be successful. Maybe you want to give opportunities or pass along values.
  • What does a GREAT life for my child look like?
  • How do I envision my child living a purposeful life that impacts and inspires others?

Helping families answer those questions when they’re feeling overwhelmed, frustrated and confused, helps propel them to continue their planning journey. Without a strong why, it’s easy to stall out when things get tough.

  1. Families don’t know who to trust.

Who do you turn to for advice?

If you’re like most people, you probably turn to others who understand you and who you can relate to – when you have a question or concern. Is that accurate?

You probably don’t seek advice from someone who simply spouts their opinions without first seeking to understand your concerns and listen to your goals.

However, when it comes to special needs planning, families often feel like their dreams are not being heard by planning professionals and their concerns are not understood.

To effectively help families plan, it’s so important for them to work with a team of professionals who understand their unique challenges, uncertainties, opportunities, and desires.

While the team at ENABLE plays many roles as we help families find security through planning, one key role involves reassuring families that we understand what they’re going through because every member of our team has been involved in the process of planning for a loved one with special needs.

  1. Families feel like they don’t have time to plan.

Do you often feel like you’re struggling to complete every task on your daily “to do” list? Do you lay down at night stressed out by the responsibilities on your plate for the next day? If getting through each day feels overwhelming, planning for the future probably seems impossible!

That’s what we often hear from families – they don’t see how they could possibly find time to plan for the future when they’re barely holding their heads above water today.

At ENABLE, we believe there are five areas that it’s critical for families to plan for so that they can feel secure knowing they have a solid plan in place for their family and their child with special needs – today and in the future.

When families hear about comprehensive special needs planning and how it’s comprised of planning in five different plans (Vision, Life, Resource, Financial, Legal) it’s easy to immediately default to: “I don’t have time for that now. I’ll get to it later.”

But really, although our holistic approach to special needs planning may at first seem like we’re adding more to families’ plates, families who choose to work with us quickly find out that our fully guided planning process actually ends up saving them time and taking so many “to do” items off of their plates. Our 5-step system and guided planning process are designed to help families feel less overwhelmed by daily life. Our team strives to help the families we serve achieve a sense of peace, knowing that they’re doing everything they can do to make sure their entire family’s future is well planned for.

  1. Families feel like they can’t afford to plan.

We understand that budgets are tight and often stretched like a guitar string. Families have so many out-of-pocket expenses to cover resources to help their children with special needs to learn, grow, and thrive. Doctors, therapies, assistive devices…the list goes on and on.

Families often struggle to even think about how they could allocate resources toward future planning goals. We frequently hear families say: “We’ll start saving in the future, when money is less tight and we’re less strapped for cash.”

They don’t realize that a key component of our planning process is helping them overcome four challenges to financial security. The ENABLE team starts by helping the families we serve to become as efficient as possible with their finances. It’s our goal to help them find areas where they’re bleeding money out of their financial models (without even realizing it!) and to help them strategically put that money back to work for them to help reach their planning goals.

  1. Families feel stuck.

Finally, as I mentioned earlier, we find that many families are facing challenges that are preventing them from even taking the first step toward planning for the future. They feel stuck.

They may be stuck due to limiting beliefs about planning that they’ve unconsciously accepted. For example, the belief that “Planning is important, but only possible for wealthy people. We can’t afford to plan.” OR “Families should plan, but we can’t right now because we have too much to do already.”

Or worse…

Some families fail to create a special needs plan because they’ve accepted limitations about their child that they’ve heard from doctors, nurses, and other professionals, like: “Our child will never be able to live a purposeful life, so there’s no reason for us to plan.”

Helping families move beyond these limiting beliefs and get “unstuck” is a key component of our planning process and is essential if we’re going to help them create a plan that allows their child to live an impactful life.


How We Help

Every family needs to think about and plan for the future. This need is exponentially more important for families with children with special needs. Unfortunately, many families wait until it’s too late to start thinking about planning.

At ENABLE, we encourage families to begin by thinking about why planning is so important – what a special needs plan could do for them (e.g., provide peace of mind about the future, allow their child to thrive today). We understand everything they already have on their agendas, thanks to our own personal experiences with loved ones with special needs. We help take tasks off their plates so they feel less overwhelmed with the day-to-day and more able to live a great life. We help them be smarter with their money so they are able to financially plan for today and the future.

Most importantly, at ENABLE, we believe that: “EVERYONE has the ability to be impactful” and that this ability is what gives each and every one of us a sense of purpose in life. We help change the mindsets of the families we serve so that they no longer believe the limitations about their loved ones and instead focus on their unique abilities. After all, creating a plan that allows a child to learn, grow, and thrive is the ultimate goal of our special needs planning process.

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