I am a dad of three kids, and my 9-year-old daughter, Hannah, has Down syndrome. She is amazing, and we love her to pieces. But like most parents who receive that diagnosis, I had no idea what it meant for her future or what it would mean for my wife and me as we raise her through childhood and into adulthood.
I have spent more than 20 years in the financial planning and investment industry. Over that time, I have had to learn complicated concepts like option spread strategies, private equity investments, and foreign currency translation. None of that prepared me for navigating the world of special needs financial planning. Learning the difference between a Katie Beckett waiver and a CHIPRA program, understanding first-party versus third-party special needs trusts, and figuring out how an ABLE account fits into the picture was just as confusing and overwhelming as anything I have encountered in my career.
I wish there had been a playbook. Something that laid out all the things I needed to learn so I could prepare for the journey ahead. We have been fortunate to meet incredible families who have walked this road before us and helped light the way. But for every parent at the beginning of this path, here are 10 things I wish someone had told me from day one.
1. Dream Big for Your Child
The first and most important lesson I have learned is that Hannah is more capable than I ever could have imagined. When you receive a diagnosis like Down syndrome, it is natural to focus on limitations. But the truth is, children with special needs will surprise you every single day if you let them. Set high goals and hold big dreams for your child, just as you would for any of your other children. The expectations you set today shape the opportunities they will have tomorrow.
2. Build a Life Plan, Not Just a Financial Plan
A life plan goes beyond dollars and investment accounts. It is a comprehensive document that captures who your child is, what they need, what brings them joy, and what their daily life should look like when you are no longer there to provide it. A strong life plan covers everything from medical care and therapy schedules to social activities, living arrangements, and the relationships that matter most to your child. It ensures that whoever steps in after you will understand not just the financial side, but the full picture of what your child needs to thrive.
Think of the life plan as a letter to the future. It should be detailed enough that a caregiver, trustee, or guardian can read it and know exactly how to continue the quality of life you have built.
3. Understand What a Special Needs Trust Is and Find the Right Attorney
A special needs trust is one of the most important tools in your planning toolkit. It allows you to set aside assets for your child without disqualifying them from critical government benefits like Medicaid and Supplemental Security Income. There are two primary types: a third-party special needs trust that is funded by someone other than the beneficiary—typically parents or grandparents—and does not require a Medicaid payback provision at death; and a first-party special needs trust that is funded with the beneficiary’s own assets, often from an inheritance or legal settlement, and does require that remaining funds repay Medicaid after the beneficiary passes.
It is also important to understand what a special needs trust can and cannot pay for. The trust is designed to enhance your child’s quality of life by covering things government benefits do not, like education, recreational activities, travel, personal care attendants, technology, and vehicle modifications. However, distributions for shelter can reduce your child’s SSI benefit through what is called the In-Kind Support and Maintenance rule. That does not mean the trust can never help with those costs, but it means the trustee needs to understand the trade-offs and plan distributions carefully.
Finding the right attorney matters just as much as the trust itself. Look for someone who specializes in special needs planning, not just general estate law. You want an attorney who has a genuine passion for working with families like yours, someone who understands the nuances of government benefit programs and how every planning decision can ripple across your child’s financial picture.
4. Your Child Can Have a Career They Are Proud Of
Employment for individuals with special needs has come a long way. There are now supported employment programs, job coaches, and employers who actively seek to build inclusive workplaces. Hannah is only 9, but I already think about the day she will find work that gives her purpose and pride. A job is not just about income. It is about dignity, community, and independence. When you build your long-term plan, factor in the possibility that your child will work, contribute, and have a career they love.
5. Get Ahead of Guardianship and Conservatorship
When your child turns 18, they are legally considered an adult, regardless of their cognitive ability. If your child needs help making financial, medical, or legal decisions, you may need to pursue conservatorship or guardianship. This is a court process that grants a parent or other trusted person the legal authority to make decisions on behalf of an adult who cannot do so independently.
Do not wait until your child’s 18th birthday to start thinking about this. The process can take time, and the legal requirements vary by state. Talk to your special needs attorney well in advance so you understand your options, which can range from full conservatorship to more limited alternatives that preserve as much of your child’s autonomy as possible.
6. Prepare for IEP Meetings Before They Start
If your child has special needs and is approaching school age, Individualized Education Program (IEP) meetings will become a regular part of your life. These meetings bring together parents, teachers, therapists, and school administrators to create a customized education plan for your child. The more prepared you are walking into these meetings, the better advocate you will be.
Know your child’s rights under federal law. Understand what services your child is entitled to. Bring documentation, ask questions, and do not be afraid to push back if the proposed plan does not meet your child’s needs. Many parents find it helpful to connect with a special needs advocate or other families who have been through the process before.
7. Determine How Much Funding a Special Needs Trust Actually Requires
One of the most common questions I hear from families is: how much money do I need in a special needs trust to take care of my child for life? The answer depends on a wide range of factors, including your child’s specific needs, the cost of care in your area, projected inflation, the government benefits your child will receive, and how long those funds need to last.
A financial advisor who specializes in special needs planning can help you model different scenarios and arrive at a realistic target. This is not a one-time calculation. As your child grows and their needs evolve, the number will need to be revisited regularly.
8. Protect Government Benefits While Providing Financial Support
This is where many well-meaning families make costly mistakes. Government programs like Medicaid and SSI have strict income and asset limits. If your child has too much money in their own name, they can lose access to benefits that pay for essential medical care, therapies, and support services. A properly structured special needs trust, an ABLE account, or both can allow you to supplement your child’s quality of life without putting their benefits at risk.
An ABLE account is a tax-advantaged savings vehicle designed specifically for individuals with disabilities. Contributions grow tax-free when used for qualified disability expenses, and up to $100,000 in an ABLE account is excluded from SSI asset limits. ABLE accounts work alongside a special needs trust, not as a replacement. Understanding how these tools work together is essential for any family doing special needs financial planning.
9. Explore and Understand Housing Options Early
Where your child will live as an adult is one of the biggest decisions your family will face, and it is one that benefits from years of research rather than months. Housing options for adults with special needs range widely, from supported living arrangements and group homes to host home programs, independent apartments with coaching services, and remaining in the family home with in-home support. Each option comes with different costs, levels of supervision, and implications for government benefits. Some states have Medicaid waiver programs that help fund community-based housing, but waiting lists can stretch for years. The earlier you start exploring what is available in your area, the more options your child will have when the time comes. Talk to other families, visit residences, and ask your financial advisor how different housing scenarios affect the long-term funding plan for your child’s special needs trust.
10. Learn About Medicaid Waivers Early
Medicaid waivers are programs that allow states to provide home and community-based services to children and adults with disabilities who might otherwise require institutional care. These waivers can cover services like in-home nursing, therapy, respite care, and adaptive equipment. The specific waivers available and the eligibility criteria vary significantly from state to state, so it is critical to understand what is offered where you live.
In our family’s experience, the programs that have been most relevant include Babies Can’t Wait, the Katie Beckett waiver, the Health Insurance Premium Payment program, and CHIPRA. Each of these programs serves a different purpose and has different eligibility requirements, but together they can form a safety net of services that supports your child from infancy through adulthood. Many of these programs have waiting lists, so the earlier you apply, the better positioned your family will be.
You Do Not Have to Figure This Out Alone
When Hannah was born, I did not have a roadmap. I had a lot of love, a lot of questions, and not nearly enough answers. If you are a parent just starting this journey, I want you to know two things. First, your child is going to amaze you. Second, building a comprehensive plan that covers their financial, legal, and personal well-being is one of the most meaningful things you will ever do.
Special needs planning is complex, but you do not have to navigate it alone. Surround yourself with professionals who understand this world, connect with other families who have been where you are, and take it one step at a time. The fact that you are reading this means you are already doing the right thing.
“When Hannah was diagnosed, I felt like I was starting from scratch in a field I thought I already understood. Twenty years of financial planning experience, and I still had to learn an entirely new language. The best thing I ever did was ask for help and start building her plan one piece at a time.”
This is why I pursued a Chartered Special Needs Consultant (ChSNC®) designation. I am passionate about helping other families like mine navigate this difficult, but joyous path.
If you are a parent of a child with special needs and want to start building a plan that protects their future, we would love to help. Reach out today to start a conversation.
This commentary is provided for general informational purposes only and does not constitute investment, legal, or tax advice. Special needs planning involves complex legal and financial considerations—consult qualified professionals before making decisions about trusts, government benefits, or guardianship. BIP Wealth, LLC is a registered investment adviser. Registration does not imply a certain level of skill or training.
