When families receive a difficult diagnosis for their child, the way forward is seldom clear. Yet embracing disabilities and fully integrating the one in four Americans who are living with a disability is vital to our social fabric. Navigating the day-to-day realities of this new life—while planning for a child’s future financial security—requires persistence and detailed planning expertise.
State and federal government laws address some areas, but there is still no clear path to creating a world where disabled individuals can lead the fullest possible life. Even the language to describe a person with an intellectual disability is constantly evolving. Here is a guide to managing the road ahead, including advice on developing the critical thinking skills families need to properly plan for a disabled child’s future.
1. Know Your Numbers. Having a disabled child requires a unique solution for every family. The right advisors can help you balance your financial situation with your child’s needs today and in the future. How much should you allocate toward long-term caregiving, medical needs, and housing? Do expenses match or exceed what is covered by government benefits? How do you structure your estate so funds intended for your child do not incur estate taxes? How do you divide your estate equitably among siblings? Knowing your numbers will help you enjoy the present and be attentive to your entire family—including you.
2. Protect Against Worst-Case Outcomes. A disabled child may not have the wherewithal to become a financially independent adult who can generate meaningful income on her own. And expenses may exceed what government benefits cover. However, a disabled child will need to plan carefully and minimize having assets in her name in order to qualify for government benefits. As a result, most families plan to fund a third-party Special Needs Trust for their loved one, so the inheritance that would otherwise go to her is set aside without interfering with government benefits. Since legal documents don’t capture everything, memorialize your vision for your child’s best life and the team that will help your child achieve this in a Letter of Intent that will complement the Special Needs Trust.
After working with attorneys and accountants to create a Special Needs Trust, families can liaise with their Bernstein financial advisor to quantify how much funding is needed to fully meet their child’s lifelong needs. Keep in mind, planning for a “rainy day scenario” a medical emergency or gap in supportive care—is more complex for disabled individuals who may find it challenging to advocate independently for optimal outcomes.
3.Building a Dream Team takes on special meaning for families with disabled children. Financial and tax advisors are critical for core planning needs. Lawyers not only help create a Special Needs Trust and a Guardianship/Limited Conservatorship but can also provide meaningful insights into Individualized Education Plans (IEPs) for school-aged children. In addition, most disabled individuals have a team of doctors, geneticists, therapists, and educators who guide their progress. Longer term, families may also wish to establish a Person-Centered Planning team that surrounds a child with a lifelong circle of support.
4. Find Your Tribe. Start with a vision of the life you want for your child and then work backward. With that vision in mind, you will find other families and professionals who are working to achieve similar goals. Parents/guardians will need other families for both emotional support and valuable perspectives. Don’t forget to involve siblings, who will appreciate having their own network of like-minded peers, and who ultimately will share in the role of ensuring your child’s quality of life.
5. Families Are Their Own Best Advocates. Do what’s best for you and your child. Not all experts will offer the optimal solution for every family. Your situation may require a unique combination of services. Invest in the resources that will provide the best outcome for your child and family.
It’s natural for parents/guardians of disabled children to worry about lifelong care—especially because they know they won’t always be there. Everyone just wants what is best for their loved ones. But for disabled children, these concerns rise to a whole new level. With some forethought, and the right team, you can help ensure your child lives the fullest possible life.