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Guardianship/Estate Planning

When a child turns18 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. The parents do not automatically remain the child's natural guardian.
Guardianship is a legal arrangement through which a person or persons are legally authorized to make decisions for another person. This includes basic needs, such as food, clothing, shelter, medical care, and/or financial decisions. Becoming a guardian is a decision that should not be taken lightly as the individual who is deemed incapacitated may lose some or all civil rights, including the right to vote, drive, or marry. Laws vary by state and some states require that the guardianship order specifically addresses or takes away some rights, such as voting, or that the person retains those rights.
Guardianship is a court-appointed role, but before any legal proceedings are started, an evaluation of the person's skills, abilities, deficits and problems is obtained and the need for a guardian is documented. The need for guardianship focuses on the individual's ability to make decisions, communicate the decisions once made, and to understand their consequences.
Once the need for guardianship is established, a court hearing is held, in which an attorney may represent the disabled individual. The court may grant either a "limited guardianship," authorizing the guardian to make only certain decisions, or "full guardianship," granting authorization for the guardian to make all decisions for the individual. In some states, a "limited guardianship" is granted unless the need for "full guardianship" is proven. Some states require that a "conservator" be appointed to make important financial or estate planning decisions if needed. The court may place an incapacitated person under a guardianship, conservatorship, or both.
In some states, guardians must report to the court annually about their guardianship activities, the condition of the individual, and the status of the estate.
It is important for families to discuss who will have guardianship in the event of the guardian's death or inability to serve in that role. The person(s) responsible for guardianship must put their wishes in their will.

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.

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.
While the services available through government benefit programs may be substantial (e.g., medical coverage through Medicaid), the actual cash benefits are generally quite small and force the individual to live way below the poverty level. If the money is left in a traditional will, the person must use that money first for living expenses and healthcare until the money is depleted. During that period he or she will lose government benefits.
To be certain that needed government assistance continues, the assets must be placed in the trust and set up correctly. Although the government states that a person with a disability cannot have a trust, the SNT is acceptable because the trust does not belong to the person with a disability. He or she is nominated as a beneficiary of the trust and is usually the only one who receives the benefits.
The SNT must be designed specifically to supplement, not supplant, government benefits. Money from the trust cannot be distributed directly to the person with a disability. Instead, it must be distributed to third parties to pay for goods and services to be used by the person with a disability.
The SNT may be used for various expenditures such as:
  • Out-of-pocket medical and dental expenses;
  • Eyeglasses;
  • Annual independent check-ups;
  • Transportation (including vehicle purchase);
  • Maintenance of vehicles;
  • Insurance (including payment of premiums);
  • Rehabilitation;
  • Essential dietary needs;
  • Purchase materials for a hobby or recreation activity;
  • Purchase a computer or electronic equipment;
  • Pay for trips or vacations;
  • Pay for entertainment like going to a movie, a ballgame, concert, etc.;
  • Purchase of goods and services that add pleasure and quality to life such as videos, furniture, or a television;
  • Athletic training or competitions; and
  • Personal care attendant or escort.
The trust money may NOT be used for food, shelter, and clothing; it can be used for items not paid for by government assistance such as medical expenses, dental work, home repair or education. Make sure to use a lawyer who has extensive experience with these trusts.
Some possibilities of funding a special needs trust are:
  • Insurance;
  • Standard government benefits;
  • Saving and investments, including money in retirement funds;
  • Assistance and inheritances from friends and family members;
  • Property, such as a family home; and
  • Military benefits.
The money in the trust can be invested and earn unlimited money.The assets and earnings belong to the trust, not the child. Parents can establish and fund the trust, and act as trustees while they are alive, or the trust can be written so that is established by the parents' will and starts to function after the parents' death. There are numerous advantages to establishing a trust early, even before the child turns 18.

Resources

Information & Support

For Professionals

Sample Guardianship Letter from Medical Home (Word Document 26 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 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.

Sample Guardianship Form Letter from Medical Home (PDF Document 17 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 incapacitated individual, as well as the guardian. The site also has resources and provides educational training and network opportunities for guardians.

Alternatives to Guardianship for CSHCN
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.

Special Needs Trust
An explanation of a special needs trust 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. Exceptional Parent Magazine, search "financial."

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 Mental and Physical Disability Law
Provides information on all aspects of the Americans with Disabilities Act, the Family and Medical Leave Act, and related legislation, including caregiver rights.

Planning for Children with Special Needs. MetDesk
MetDESK, MetLife's Division of Estate Planning for Special Kids 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

Disability Awareness Programs

See all Disability Awareness Programs services providers (6) in our database.

Estate & Future Planning

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Guardianship

See all Guardianship services providers (1) in our database.

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Authors & Reviewers

Initial Publication: July 2008; Last Update: December 2008
Current Authors and Reviewers (click on name for bio):
Contributing Authors: Alfred N. Romeo, RN, PhD
Robin Pratt
Barbara Ward, RN BS
Gina Pola-Money
Joyce Dolcourt
Kristine Ferguson
Teresa Such-Neibar, DO
Lynn Foxx Pease
Helen Post
Roz Welch
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.
Authoring history
(Limited detail is available on authoring dates before 2014.)
AAuthor; CAContributing Author; SASenior Author; RReviewer