The Silent Struggle Most Parents of Kids With Down Syndrome Face (And How to Overcome It)
Imagine your child becoming an independent adult – moving into their own place, landing a fulfilling job, maybe even starting a family of their own one day. For many parents, these are the visions that keep them going through all the stressful times raising kids can bring.
But for parents of children with Down syndrome, that daydream is often shattered by a harsh reality – the lifelong challenges their loved ones may face in achieving any semblance of true independence.
The possibility of their child being unable to keep up with basic daily needs like dressing, bathing, and managing finances.
This burden weighs heavily.
In fact, a staggering 88% of parents with children with intellectual disabilities report experiencing chronic stress levels compared to just 33% of other parents.
The constant worry of “What’s going to happen when I’m gone?” can cast a dark cloud over every milestone and accomplishment.
The good news?
With proper lifetime care planning guided by a qualified special needs attorney, that worry can be lifted once and for all.
You can secure your child’s future today, providing you with peace of mind to live in and cherish the present moments.
Overcoming the 3 Biggest Myths About Special Needs Legal Planning
Before we dive into the essential steps, let’s address some of the biggest misconceptions that can prevent parents from pursuing lifetime care planning for their child with Down syndrome:
Myth #1: It costs a fortune to hire a specialized attorney
Many parents assume that enlisting legal expertise is financially out of reach. But the truth is, not having an airtight customized plan will likely cost far more over your child’s lifetime through missed benefits, improper asset distribution, and more.
Myth #2: I can just use a basic online trust template
While the abundance of online resources is helpful for basic education, attempting to create and fund a trust properly for special needs care is extremely complex.
Generic forms leave major gaps that can lead to issues with benefit qualification, distribution mishandling, probate nightmares, and other costly mistakes.
Myth #3: The process is going to be long, complicated, and stressful
Yes, lifetime care planning does involve multiple steps and decisions. But a seasoned special needs lawyer will serve as your calm guide every step of the way, working with you at a comfortable pace to ensure your complete understanding and buy-in.
We’ve been down this road many times before – let us shoulder the burden.
With those myths dispelled, let’s dive into what’s truly involved in safeguarding your child’s lifelong wellbeing…
The 5 Mission-Critical Steps to Bulletproof Lifetime Care for Your Down Syndrome Child
- Start with a Comprehensive Assessment
The first step is getting clear on your current financial landscape and your child’s long-term needs. This includes:
- Taking inventory of all assets and income sources
- Calculating potential lifetime care costs (therapies, housing, medical equipment, etc.)
- Determining eligibility for public benefits like SSI, Medicaid, housing assistance
- Discussing wishes for living situation, daily care/quality of life
And more…
An experienced special needs planner will walk you through every consideration, ensuring no potential roadblock or requirement is overlooked upfront. With a clear, 360-degree view, you can then make truly informed decisions about the right planning vehicle.
- Choose the Optimal Type of Special Needs Trust
Not all trusts are created equal when it comes to beneficiaries with disabilities. The two main varieties are:
Third-Party Special Needs Trusts: Funded with assets from parents or third parties (not the child’s own assets). This allows the child to maintain eligibility for need-based public benefits while still having a fund to cover extras that enhance quality of life.
First-Party/Self-Settled Trusts: Funded with the child’s own assets (inheritance, lawsuit settlement, etc.) With careful structuring, these can also preserve benefit qualification in many cases.
There are vital differences in how each type of trust can be funded, what distributions are allowed, tax implications, and more. Your attorney will make an educated recommendation on which path best aligns with your child’s unique situation.
- Choose Trustees and Spell Out Exactly Management Structure
This step is arguably the most important, as your chosen trustees will have complete authority over your child’s funds and well-being once you’re gone. Factors to carefully consider include:
- Trustee qualifications, judgment skills, availability
- Whether to use a professional trustee service
- Guidelines for distributions, living situation, level of care and more
- Succession instructions if/when trustees need to be replaced
Your special needs lawyer will help you weigh the pros and cons of every potential trustee and get your exact wishes legally codified to prevent disagreement or mishandling down the road.
- Precisely Title and Properly Fund the Trust
Once your trust is legally established, it’s time to transfer ownership of all assets you want to include – the funding process. This could involve:
- Re-titling the deed of your home or other real estate
- Shifting investments, annuities, life insurance policies and more
- Making arrangements for inherited assets via your will or beneficiary designations
Again, your attorney will ensure all i’s are dotted and t’s are crossed to maintain your child’s eligibility for public benefits and prevent issues with creditors, divorce settlements, bankruptcy, future inheritances, and more.
- Schedule Regular Professional Reviews & Updates
Done properly, a special needs trust should provide iron-clad protection for your child’s long-term security.
But circumstances are bound to change over time as tax laws evolve, your family situation shifts, trustees need replacing, etc.
That’s why ongoing professional oversight is critical.
We establish a schedule (often annually or bi-annually) to review and update trust provisions as needed to ensure nothing falls through the cracks.
Secure Your Child’s Future, Find Your Peace of Mind
While the prospect of lifetime care planning for a child with Down syndrome can feel daunting, hopefully this breakdown provides reassurance that it’s an eminently manageable process with expert legal guidance.
The alternative – leaving your child’s welfare to chance – is the far greater risk.
Don’t let constant worry rob you of the priceless joy of celebrating each new milestone and accomplishment.
Take that first step toward securing your child’s future today by scheduling a free consultation with a caring, compassionate advocate in your area who specializes in special needs planning.
Your family’s wellbeing is simply too precious not to.