Estate Planning

Families that have children with special needs must plan very carefully so that assets can be used in the best interest of their child. With careful legal and financial planning, parents can ensure that their children continue to have a good quality of life. Proper planning will enable your child to receive the services he needs, such as SSI and Medicaid, without being penalized for having assets from sources such as inheritance or compensation from a lawsuit. Writing a will, setting up a trust, and getting answers to difficult questions about your child’s financial future can ease anxiety, but getting started can be the hardest part. What steps can you take to complete these tasks?
First, we recommend that you consult a professional financial planner, and/or an attorney who has experience working with the families of children with special needs. An experienced professional will be able to advise you about a "Special Needs Trust" and understand the intricacies, guidelines, and overlapping interests of Medicare, Social Security, guardianship, and other issues of particular concern for you and your family.
We hope the resources on this page will help you begin to build familiarity with all that goes into planning for your child’s long-term future.

What is involved in Estate Planning?

Consult a financial planner and/or an attorney
  • Many law firms and life insurance companies have special needs consultants. Make sure to find one who is experienced in special needs trusts and planning.
Write a letter of intent
  • Some parents have found it helpful to write an informal letter of intent, or simply jot down their concerns before meeting with a planner or attorney to write the letter of intent.
Establish guardianship (and successors)
  • A guardianship is a legally protected relationship in which a person is legally designated to make decisions on behalf of another person. The guardian is appointed by a judge to act on behalf of someone who cannot manage his or her own personal affairs. Guardianships are commonly used to benefit children, as children cannot legally enter into contracts or make legally binding decisions for themselves, but guardianships also can be used to protect adults with disabilities. If you are planning to care for your child after they turn age 18, you will need to establish guardianship. Talk with your special needs consultant about guardianship options.
Consider your child's financial needs
Establish a Special Needs Trust
  • A special needs trust is also referred to as a “supplemental care trust.” The trust allows you to maintain your child's financial wellbeing and her eligibility for government assistance, but also allows you to save money for her future without worrying about the asset regulations of Medicaid or SSI. An experienced attorney/planner will know the best options for your child's individual needs and is essential when setting up a special needs trust.


Information & Support

For Parents and Patients

Financial Planning for Kids with Special Needs
Ten steps to planning your child's financial future. Some are simple, some are challenging; some cost nothing and some require paying legal fees. Get started on some of these now, so you'll have peace of mind down the road.

NAMI Special Needs Estate Planning
A guidance system to planning for the coordination of the legal, financial, and care components that will provide for the maintenance of the quality of life and dignity of the beneficiary of the plan.

Special Needs Alliance
The Special Needs Alliance is a national, nonprofit organization of member attorneys who work regularly with public benefits, guardianships/ conservatorships, planning for disabilities and special education issues, much of it voluntary.

The Pacer Center Special Needs Trusts
An explanation of a Special Needs Trust.

The Pacer Center Guardianship (Conservatorship)
An explanation of guardianship (conservatorship), a legal arrangement in which you or a trusted adult you select is given the right to make decisions for your child.

Financial Planning Mistakes Special Needs Families Should Avoid
If you avoid these seven mistakes, you will be positioning your special needs child for a successful future.


Estate & Future Planning

See all Estate & Future Planning services providers (6) in our database.


See all Guardianship services providers (9) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors & Reviewers

Initial Publication: July 2014;
Current Authors and Reviewers (click on name for bio):
Author: Tina Persels
Reviewers: Shena McAuliffe, MFA
Gina Pola-Money
Authoring history
(Limited detail is available on authoring dates before 2014.)
AAuthor; CAContributing Author; SASenior Author; RReviewer