Summer 2022 Estate Planning Update – Guardianship and Alternatives for Adult Children


For those of us raising a child with an intellectual disability or developmental delay (ID/DD) or mental health impairment, there are many decisions and changes to consider when our children reach the age of majority. These decisions include those involving planning for transition within the special education system, converting to adult support services, applying for government benefits, and whether our loved one has the capacity to make legal choices. independent. There are many different fiduciary roles designed to help our adult children make decisions, including court-appointed guardians and conservators and agents appointed by the individual or by a government entity providing services to that individual. It is important to understand which role is appropriate and who has the authority to make a particular decision.

Guardian and Curator

All individuals are presumed to be legally competent and have the right to make their own decisions once they reach the age of majority in their state (usually 18). These rights include the right to make financial decisions and enter into legal contracts, the right to make their own medical decisions, and the right to keep their medical information confidential. If a person is unable to make informed decisions due to a disability, a local probate court will appoint a legal guardian to make educational, financial, and medical decisions for the incapable person. Guardianship can be limited by the court so that the incapable person retains the right to make certain decisions. The court will usually require the opinion of a medical professional as to the person’s inability to make informed decisions. In some states, there are separate appointments for a personal guardian to make educational, medical, and life decisions, and an estate conservator or guardian to make financial and legal decisions. The court may appoint the same person to both functions. Guardians and conservators are subject to continuous supervision by the courts.

Beneficiary representative

If a person receives Supplemental Security Income benefits or Social Security Disability Income from the Social Security Administration (SSA) and that person does not have the ability to manage that income, SSA will appoint a parent, a friend or even an agency to be the “representative beneficiary”. The role of the representative beneficiary is to use this income to meet the beneficiary’s basic needs for food, housing and medical care as well as his personal needs, including clothing, therapy and recreation.


It is vitally important that a person with special needs receives an inheritance or substantial gift in trust. A Special Needs Trust (SNT) would generally be used in such a case. An SNT is designed to hold this inheritance or gift for the benefit of the individual while preserving the individual’s eligibility for means-tested government benefits. The trustee manages and invests the assets of the trust on behalf of the individual, making distributions that are in the best interest of the beneficiary, taking into account the impact these distributions may have on government benefits. The trust should protect the individual against exploitation, financial waste and financial mismanagement. The trustee is named in the trust document by the creator of the trust (usually the parents or relatives of the person). The trustee is generally not under the supervision of a court. An SNT designed to receive a gift or inheritance is a third-party trust created by people other than the disabled person and is distinct from a self-established SNT, which is usually created by family members or a court to hold assets already owned by the disabled person.

Supported decision making

There is a common misconception that all people with ID/DD need a court-appointed guardian to make all decisions for them for their entire life. Families of children with ID/DD approaching adulthood generally only receive information about the legal guardianship process. These families often receive neither information about alternatives to legal guardianship nor access to other resources, such as a formal support network that could encourage the independent growth of the adult child.

Legal alternatives to the court process could allow adults with ID/DD to retain independent decision-making, self-representation, self-expression, and the ability to select people to help them. Many people informally engage in supported decision-making when they seek the advice of others, such as asking a mechanic friend for advice on buying a car or asking a decorator friend interior what paint color best suits the wall of a bedroom. . Adult children with ID/DD are best served by formally identifying people who will support them in a “supported decision-making agreement”. Supported decision-making is gaining ground nationally, and disability organizations and advocacy groups, such as Arc and the National Council on Disability, strongly support the use of such agreements as an alternative to judicial supervision. Some states, such as Rhode Island, have passed laws to recognize these agreements as legally enforceable contracts. In states where such laws do not yet exist, other documents remain viable to promote supported decision-making, provided that the adult child with ID/DD who retains the required level of ability does not revoke them. afterwards. Documents that serve as alternatives (or supplements) to supported decision-making agreements include the following:

Health Care Proxy/Health Care Representative

A health care power of attorney is a document that names one or more people as having the authority to make medical decisions for a person unable to do so independently. Typically, a health care proxy assumes full responsibility for the medical treatment and care of an adult with ID/DD, but when able to do so, the adult with ID/DD could help with more routine care decisions.

Enduring power of attorney

A durable power of attorney allows one or more people to participate in personal and financial affairs, including banking, legal matters and government benefit claims. (The SSA requires individuals to sign their own form designating a representative.)

Educational agent

Adult children with ID/DD may select an educational agent to represent them regarding individualized education programs and other educational needs. The Education Officer will champion and endorse special education services, promoting continuity and minimizing exploitation within the education system.


Every individual has the right to dignity, respect and self-determination. Regardless of whether an adult with ID/DD has a legal guardian or employs alternatives, such as supported decision-making agreement, to designate caregivers, those charged with this responsibility have a duty to consider the wishes, desires and preferences of the disabled person. Promoting independence and self-determination in decision-making is paramount and understanding the wishes of the disabled person is imperative.


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