For parents raising a child with a disability, planning for the future can feel overwhelming. There are school supports to manage, medical appointments to coordinate, benefits to understand, siblings to consider, and the constant question in the back of a parent’s mind: What happens when I am not here to do all of this?
In this episode of StressFree IEP, Frances Shefter speaks with Mary McDermott, chartered special needs consultant, COO of All Needs Planning, TEDx speaker, and co-author of Care, Protect and Grow. Their conversation goes beyond financial accounts and legal documents. It focuses on something much bigger: how families can create a realistic plan for lifelong care, benefits protection, family roles, and peace of mind.
Planning Is Not Only for Wealthy Families
One of the biggest myths around financial planning is that it is only for families with significant money. Mary challenges that directly. If a child with a disability may need Medicaid, Social Security, waiver services, or other public benefits, families need to understand how assets and income can affect eligibility.
Frances makes an important point: even families who do not think they have much money still need to know what benefits exist, what may limit those benefits, and how to protect access to them.
That includes understanding tools like:
- ABLE accounts
- Special needs trusts
- Waiver programs
- Social Security benefits
- Medicaid eligibility rules
- Proper estate planning
- Family conversations about inheritance and support
The goal is not to hide money or avoid responsibility. The goal is to make sure resources are used in a way that supports the child’s long-term needs without accidentally cutting off critical benefits.
Good Intentions Can Still Create Problems
Many relatives want to help. Grandparents may want to leave money directly to a grandchild. Aunts, uncles, or family friends may want to include the child in their estate plans. Those intentions are loving, but if the money is given the wrong way, it can cause real problems.
Mary explains that anyone can accidentally “over-resource” a person with a disability. That means the child or adult may end up with assets in their own name that interfere with needs-based benefits.
This is why family communication matters. Parents may understand the planning rules, but grandparents or other relatives may not. A direct gift or inheritance can create consequences nobody intended.
Frances captures the balance well: families want loved ones to support their children, but that support needs to be structured in a way that does not reduce the child’s ability to access everything else they may need.
Benefits Can Create More Stability, Not Less Responsibility
Some families hesitate to apply for benefits because they feel their child is “not disabled enough,” or because they worry they are taking something from someone else. Mary pushes back on that idea.
Families do not decide eligibility on their own. They apply, go through the assessment process, and receive the level of support the system determines is appropriate. Those supports can make a major difference.
Mary gives a powerful example from her own family. Her daughter had a seizure medication that cost $25,000 per month. Without waiver support, the family could have been responsible for thousands of dollars out of pocket each year. With benefits helping cover costs, that money can instead be saved or used to improve her daughter’s long-term quality of life.
That shift matters. Benefits are not always about immediate survival. Sometimes they create enough breathing room for a family to plan better, save more responsibly, and reduce future crisis.
The Hidden Cost of Care Is Often What Parents Miss
When families think about future costs, they may picture housing, therapy, medical care, or recreation. Those are important. But Mary points out that the hardest part is often identifying what parents are doing every day that is not simply “parenting.”
For example, a parent may say their child can shower independently. But Mary breaks that down into smaller steps:
Can the child notice they need a shower?
Can they turn on the water safely?
Can they wash their hair?
Can they rinse out all the shampoo?
Can they dry off completely?
Can they put on clean clothes?
Can they manage the towel and laundry afterward?
If a parent has to intervene at any point, that is support. And if someone else had to provide that support in the future, it may have a cost.
This kind of planning is not about judging a child’s abilities. It is about being honest. The more accurately parents describe daily support needs, the better they can plan for services, caregivers, benefits, and long-term care.
Frances connects this back to school as well. Sometimes what the school reports and what parents see at home are very different. A child may be described as compliant and independent at school, while home tells a completely different story. Those differences matter at the IEP table and in long-term planning.
Siblings Should Not Automatically Become Substitute Parents
One of the most emotional parts of the conversation is the role of siblings. Many parents worry that the sibling without a disability will eventually have to take over care. Mary encourages families to slow down and separate love from responsibility.
A sibling can love their brother or sister deeply without being assigned a parent role as a child.
Mary shares that when her young daughter said she wanted to take care of her sister after their parents died, Mary responded by reminding her that her job was to be a sister. Not a mom. Not a caregiver. A sister.
That distinction matters.
Frances shares a similar experience with her own children, where one child wanted to help so much that she began framing normal sibling closeness as “helping mom and dad.” Frances stepped in to clarify: choosing to spend time with your sister is wonderful, but feeling responsible for parenting her is not the same thing.
Families can plan for siblings to have future roles, but those roles should be discussed when the sibling is old enough to understand the real-life impact. The responsibility may involve time, money, medical decisions, legal authority, emotional labor, and changes to the sibling relationship.
Mary recommends breaking care into different jobs instead of assuming one person must do everything. A family may need a trustee, a guardian, a project manager, a benefits coordinator, or other helpers. Some may be relatives. Some may be professionals. The point is to build a village, not place the entire future on one sibling.
The Age 18 Transition Comes Faster Than Parents Expect
For children with disabilities, turning 18 can create a major shift. Even if the child is still in school, the world sees them as a legal adult.
Mary offers one simple but powerful tip: get a state-issued ID before the child turns 18. Once the child becomes a legal adult, tasks like getting identification, accessing medical systems, applying for benefits, or setting up supports can become more complicated if guardianship, power of attorney, or other legal authority is not already addressed.
The age 18 transition may involve:
- Guardianship or supported decision-making
- Powers of attorney
- Social Security applications
- Medicaid or waiver eligibility
- ABLE account planning
- Rep payee accounts
- Asset limits
- Work income planning
- Benefit protection
Mary also explains why ABLE accounts can become especially important around age 18. If Social Security approves benefits and sends back pay, the family may need a safe place to move funds so the individual stays under asset limits. An ABLE account can serve as an important overflow tool.
A Plan Reduces Crisis
No parent wants to think about becoming unavailable, getting sick, or dying. But Frances and Mary both emphasize that avoiding the topic does not protect children. It usually creates more confusion later.
When there is no plan, families may end up in emergency mode. Relatives may disagree. Roles may be unclear. The child’s care may become harder to manage during an already painful time.
A strong plan answers important questions before there is a crisis:
- Who handles money?
- Who makes care decisions?
- Who understands the child’s daily needs?
- Who communicates with providers?
- Who knows the benefits rules?
- Who will help siblings understand their role?
- What supports are needed now, at 18, in adulthood, and after the parents are gone?
Special needs planning is not one document or one account. It is an ongoing process of care, protection, and growth.
The message for parents is clear: you do not have to solve everything at once. But you do need to start. Every conversation, every document, every account, and every support person added to the plan can make your child’s future more stable.
Reach Mary here: https://allneedsplanning.com/
All Needs Planning, Meeting with Mary: https://calendly.com/marymcdirmid/all…
Mary’s book: https://allneedsplanning.com/care-pro…
Need our help? Book a Free Case Analysis Here!
