There’s a question that keeps parents of children with IDD awake at night: What happens to my child when I’m gone?
You’ve spent your child’s entire life advocating for them, coordinating their services, managing their care, and ensuring they’re safe and supported. Planning for that transition is one of the most important things you can do to protect your child’s future.
In Nebraska, planning involves several legal and financial tools: guardianship to ensure someone can make decisions on their behalf, wills and estate planning to provide for them financially, and special needs trusts to preserve their eligibility for government benefits while still leaving them resources.
Why Planning Matters
When a child with IDD turns 18, they become a legal adult. That means parents no longer have automatic authority to make medical, financial, or legal decisions for them — even if the young adult lacks the capacity to make those decisions independently.
Guardianship: Ensuring Someone Can Make Decisions
Guardianship is a legal arrangement where a court appoints someone to make decisions for an individual who cannot make those decisions independently due to incapacity.
Types of Guardianship in Nebraska
Full guardianship gives the guardian authority to make all decisions for the person — medical, financial, residential, and personal decisions. This is appropriate when the individual lacks capacity to make any significant decisions independently.
Limited guardianship gives the guardian authority over specific areas of decision-making while allowing the individual to retain rights in other areas.
Conservatorship specifically addresses financial decisions and management of assets.
When to Pursue Guardianship
Most families begin the guardianship process when their child with IDD turns 18 or shortly after. The process involves filing a petition with the county court, providing evidence of incapacity, and attending a court hearing.
Guardianship Alternatives
Not every adult with IDD needs guardianship. Supported decision-making allows the individual to make their own decisions with help from trusted supporters. Powers of attorney allow an individual to designate someone to make specific decisions.
Wills and Estate Planning: Providing for Your Child Financially
A will is the foundation of estate planning. For parents of children with IDD, estate planning is more complex than simply leaving assets to your children equally.
Why You Can’t Just Leave Money Directly to Your Child with IDD
If you leave money or assets directly to your child with IDD through your will, that inheritance becomes their asset. Medicaid and SSI have strict asset limits — typically around $2,000 in countable assets. If your child inherits $50,000, they’re suddenly over that limit and lose their benefits.
Special Needs Trusts: Protecting Benefits While Providing Resources
A Special Needs Trust is a legal tool that allows you to leave money for your child with IDD without disqualifying them from Medicaid, SSI, or other means-tested benefits. The money goes into the trust, not directly to your child. A trustee manages the funds and uses them to pay for things that improve your child’s quality of life.
What Can Special Needs Trust Funds Be Used For?
Special Needs Trust funds can pay for education and training, entertainment and recreation, personal care items, electronics and technology, therapy or programs not covered by Medicaid, transportation, professional services, home furnishings, and social activities.
Third-party Special Needs Trust is funded with money from someone other than the beneficiary — typically parents, grandparents, or other family members.
First-party Special Needs Trust is funded with the beneficiary’s own money — perhaps from a personal injury settlement or back pay from Social Security.
Life Insurance: Creating Resources for Your Child’s Future
A life insurance policy with your child’s Special Needs Trust named as beneficiary ensures that when you die, funds are available to supplement their care for the rest of their life — without jeopardizing benefits.
Letters of Intent: Sharing What You Know
A Letter of Intent is a non-legal document where you write down everything someone stepping into your shoes would need to know about your child — medical history, daily routines, behavioral triggers, social connections, and communication methods.
Having the Conversation with Your Family
Planning for your child’s future requires difficult conversations with family members about who will serve as guardian, who will be trustee, and what your wishes are.
When to Work with Professionals
Estate planning for families with children with IDD is complex. Work with an attorney who specializes in special needs trusts and estate planning, and a financial advisor who understands benefit preservation.
The Bottom Line
Planning for your child with IDD’s future isn’t optional. Guardianship ensures someone has legal authority to make decisions. Special Needs Trusts allow you to leave resources without jeopardizing benefits. Wills and estate planning create a comprehensive framework for your child’s care after you’re gone. Start the process now, even if your child is young.
