Guardianship/Estate Planning

When a child turns 18 he/she is a legal adult, which brings with it the rights, responsibilities, and consequences of his or her choices.

Guardianship

If your child's disability renders him/her unable to make decisions in his or her own best interest, consider applying for guardianship when your child is approaching their 18th birthday. Parents do not automatically remain the child’s natural guardian after this point. Guardianship is a legal arrangement through which a person or persons are legally authorized to make decisions for another person. Please see the “Guardianship and Alternatives” page in our Legal Issues section to learn more.

Supported Decision Making

Rather than a guardian making decisions for an individual with a disability, Supported Decision Making (SDM) allows the person with a disability to make his or her own decisions with support from a trusted team. SDM can be very flexible, allows for changes as an individual's preferences/needs change, and can be done in tandem with Guardianship. Please see the “Guardianship and Alternatives” page in our Legal Issues section to learn more.

Estate Planning

Families who have children with disabilities need to plan very carefully so that family assets can be used in the best interest of the family and individual with special needs. Proper planning will enable your child to "receive his or her inheritance," yet still qualify for or retain SSI, Medicaid, and other government benefits. With careful legal and financial planning, parents can ensure that their children will have a good quality of life. Please see the “Estate Planning Trusts and Accounts” page in our Legal Issues section to learn more.

Special Needs Trust

A Special Needs Trust (SNT) is the only reliable, legal tool that ensures an individual's inheritance is available to the person with a disability when he or she needs it. The Special Needs Trust, also called a "supplemental care trust," receives and manages money for the benefit of a child with a disability while maintaining his or her eligibility for government services. Please see the “Estate Planning Trusts and Accounts” page in our Legal Issues section to learn more.

Resources

Information & Support

For Professionals

Sample Guardianship Letter from Medical Home (PDF Document 12 KB)
From a physician in Utah, this one-page sample letter identifies functional limitations of an adolescent to support the parents in seeking guardianship as their adolescent becomes an adult.

Sample Guardianship Form Letter from Medical Home (Word Document 47 KB)
This adapted, six-page form letter provides questions and checklists for identifying functional limitations of a young adult to support the parents in seeking guardianship of their adult child.

For Parents and Patients

Disability Resources
US Department of Labor's Disability Resources web page. See also Office of Disability Employment Policy (ODEP) homepage: https://www.dol.gov/odep/

National Guardianship Association
The website is an excellent source of information on the rights and responsibilities of the guardian and the person in their care. The site also has resources and provides educational training and network opportunities for guardians.

Supported Decision-Making/Alternatives to Guardianship for Families of Children with Special Needs
Based on the premise that children Children with special needs should have as much input as they can based on their capacity, with sample forms. Written by SPAN, Statewide Parent Advocacy Network.

Planning Your Child's Future
A planning guide for parents and guardians with information about special needs trusts and much more by the Pacer Center.

Financial Planning, Exceptional Parent Magazine
An in-depth resource that provides information about trusts, the legal side of financial strategies, divorce, and more.

A Family Handbook on Future Planning (ARC)
Helps families develop a plan that provides personal, financial, and legal protections for their children with cognitive, intellectual, or developmental disabilities after the parents either die or can no longer provide care; a publication of The Arc of the United States and the Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities.

American Bar Association Commission on Disability Rights
The Commission works to promote the ABA's commitment to justice and the rule of law for people with mental, physical, and sensory disabilities.

MetLife Center for Special Needs Planning
MetLife Center for Special Needs Planning helps you to take steps to provide lifetime quality care for your child or dependent with special needs: how to protect eligibility for important government benefits such as Supplemental Security Income (SSI) and Medicaid; and ways in which special needs trust can provide lifetime care while still preserving government benefit eligibility.

Services for Patients & Families in Nevada (NV)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: December 2005; last update/revision: October 2022
Current Authors and Reviewers:
Author: Medical Home Team
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.
Authoring history
2008: revision: Alfred N. Romeo, RN, PhDCA
2005: first version: Robin PrattCA; Barbara Ward, RN BSCA; Gina Pola-MoneyCA; Joyce DolcourtCA; Kristine FergusonCA; Teresa Such-Neibar, DOCA; Lynn Foxx PeaseCA; Helen PostCA; Roz WelchCA
AAuthor; CAContributing Author; SASenior Author; RReviewer