Published on September 7, 2020. Last Updated on November 4, 2025.
Parents of children with disabilities often find themselves overwhelmed, uncertain, and emotionally drained as they try to understand how to protect their child’s future. As an elder law attorney who regularly provides workshops in local communities, churches, and nonprofit organizations, I see the same expressions again and again—stress, fear, confusion, and, most of all, love.
When a parent approaches me after a presentation, the emotion on their face tells me everything. They want to protect their child with special needs, but they don’t know where to start. They don’t know what questions to ask. And, most importantly, they don’t know who to trust to give them accurate, compassionate guidance.
If this sounds familiar, you are not alone. Special needs planning can feel overwhelming, but taking the first step—seeking information—is the most important and empowering thing you can do.
Why Special Needs Planning Matters
Parents of children with disabilities face unique legal, financial, and long-term care considerations. While all families benefit from proper estate and life care planning, families with a special needs child must be especially careful to plan in a way that honors the child’s abilities, protects eligibility for essential government benefits, and provides a stable support structure for the future.
As we often tell families in our workshops, education is the foundation of special needs planning. No matter your child’s age or level of care, the earlier you begin learning your options, the more effectively you can create a plan that meets both present and future needs.
The legal system can be difficult to navigate without guidance—especially when you are trying to evaluate complex questions about guardianship, Power of Attorney authority, benefits eligibility, financial planning, and long-term supports. Our goal is to help you understand each step clearly and calmly so that you feel confident and informed as you move forward.
Understanding the Moment Your Child Becomes an Adult
One of the most important turning points for families in Pennsylvania occurs when a child with special needs turns 18.
In the Commonwealth of Pennsylvania, the age of majority is 18, and once a person reaches that age, the law presumes they have the capacity to make their own decisions—no matter the nature or extent of their disability.
For many families, this comes as a surprise. Up until age 18, parents are the natural decision-makers for medical care, education, financial matters, and daily needs. But on the child’s 18th birthday, that authority ends automatically unless a legal plan is put in place.
That is why I advise parents to consult with our office before their child turns 18. This allows us to assess the child’s ability to understand and make decisions and to determine which legal tools are most appropriate:
1. Power of Attorney (POA)
If your child has the capacity to understand and willingly sign legal documents, a Power of Attorney may be appropriate. This allows you, as the parent, to continue assisting with financial or medical decisions.
2. Guardianship
If your child cannot meaningfully understand decisions or communicate choices, guardianship may be necessary. Guardianship is a court process that grants another person legal authority to make decisions on behalf of the adult with a disability.
Many families understandably find the idea of guardianship overwhelming or emotional. But evaluating the need early—before your child turns 18—prevents gaps in care and ensures they receive consistent protection.
Evaluating Your Child’s Decision-Making Needs
Once we have passed that initial hurdle—determining the appropriate level of legal authority—we can begin building a long-term plan.
In our office, we always start with a full evaluation to understand your child’s abilities, needs, and goals. This includes:
- Daily living skills
- Cognitive and communication abilities
- Medical and behavioral needs
- Safety considerations
- Education or employment plans
- Family involvement and caregiving support
This evaluation helps determine not only whether POA or guardianship is appropriate, but also which financial and legal tools will best support your child’s long-term well-being.
Building a Long-Term Plan: What Comes Next
After addressing decision-making authority, we move into the core components of special needs planning. A comprehensive plan often includes:
Special Needs Trusts
A Special Needs Trust (SNT) allows assets to be set aside for your child’s benefit without jeopardizing eligibility for means-tested government benefits such as Supplemental Security Income (SSI) or Medicaid.
There are several types of SNTs, including:
- Third-party Special Needs Trusts – funded by parents or loved ones
- First-party or Self-Settled Special Needs Trusts – funded with the individual’s own money
- Pooled Trusts – managed by nonprofit organizations
These trusts protect financial resources while allowing the beneficiary to enjoy an improved quality of life through supplemental expenses such as therapies, adaptive equipment, transportation, education, and recreation.
ABLE Accounts
An ABLE Account is a tax-advantaged savings tool allowing individuals with disabilities to save money without disqualifying them from SSI or Medicaid (up to federal limits).
ABLE funds can be used for a wide variety of “qualified disability expenses,” including:
- Housing
- Transportation
- Education
- Assistive technology
- Employment support
- Personal care
ABLE accounts and SNTs often work best together, and part of our role is helping your family understand how each can be used strategically.
Life Insurance Planning
Parents often worry about how to provide long-term financial security after they are gone. Life insurance can play a crucial role in funding a special needs trust and ensuring your child has financial support throughout adulthood.
This approach allows you to protect your child’s government benefits while creating a structured source of supplemental funding.
Your First Step: Having the Conversation
When parents ask, “Where do I even begin?” my answer is simple:
Begin by consulting with a professional who specializes in special needs planning.
You do not need to know what questions to ask. You do not need to have everything figured out. The first step is simply starting the conversation.
Our firm is dedicated to guiding families through this process with compassion, clarity, and respect. Whether your child is approaching 18 or you are just starting to explore future planning, we are here to help you build a clear and secure path forward.
Why Education Is the Key
As we regularly emphasize during our community workshops, education is the foundation of any special needs plan. It’s never too early to learn about:
- Planning options
- Legal protections
- Available benefits
- Long-term care support
- Transition-age services
- Future life planning
Understanding these elements now empowers you to make informed choices later.
To make learning accessible, our office offers life care planning workshops as well as an on-demand presentation you can watch at your convenience. These workshops cover guardianship, powers of attorney, SNTs, ABLE accounts, and more—giving families a practical and actionable starting point.
A Path Forward for Every Family
Every individual with special needs is unique, and every family’s situation is different. There is no “one-size-fits-all” plan. What matters is that you start with accurate information and an experienced professional who can help you evaluate your options.
The parents who come to our workshops often begin with uncertainty—but they leave with clarity, confidence, and a sense of relief knowing they finally have a roadmap.
If you are feeling overwhelmed, please know this: You do not have to navigate this alone.
We are here to help you understand your choices, protect your loved one’s needs, and build a secure plan for the future.
To learn more or to register for a workshop, please contact Bellomo & Associates today.
