Parents of children who have disabilities have many issues to worry about. Perhaps one of the greatest is who is going to look out for and protect their child when they are no longer able to do so? When thinking of this eventuality, parents may turn to other family members or friends to step into their role should they become incapacitated or die. Alternately, parents may arrange to have this done by an individual advocate or a nonprofit, community-based organization whose mission is to support and advocate for individuals with disabilities.

Advocates can advise and offer assistance concerning the person who has special needs, but cannot make decisions that are legally binding for that person. The power to make legal decisions for another individual is done through guardianship or conservatorship.

What is Guardianship/Conservatorship?

Every person eighteen years of age or older is deemed to be competent by law, regardless of his or her actual ability or capacity. A guardianship or conservatorship, in general, is a legal mechanism that must be approved by a court that grants a competent adult legal power to make decisions for another person, one who is considered incapable of making decisions for himself or herself. This person may be a minor (under 18 years of age) or an adult who has been declared incompetent by the court. In the case of a minor, guardianship will generally terminate when the child turns 18, or, in come states, upon marriage if the child marries before age 18.

Legislation regarding guardianship varies by state, but generally, the guardianship procedure requires a petition to be filed in Probate Court. Also, a clinical team (consisting of a physician, licensed psychologist and social worker) must report that the individual is incapable of making informed decisions with respect to personal and financial affairs, and that failure to appoint a guardian would create an unreasonable risk to the individual’s health and safety.

When parents prepare for the future by making a will, it is crucial to consider the issue of naming a guardian or conservator for a dependent child or adult with a disability. Unless the parents’ will specifies who they want as guardian or conservator, the courts will decide. If appointed, a guardian has the control over the ward’s (the person who is represented by the guardian) personal and financial affairs. A guardian must file an inventory and annual accounts with the Probate Court. As a result of relatively new case and statutory law, there are certain important decisions that a guardian cannot make without specific court authorization. These include consenting to treatment with anti-psychotic medications, admission to psychiatric hospitals or consenting to experimental medical treatment.

There are different types of guardianship or conservatorship, each of which confers different powers.

A Natural Guardian generally refers to a parent. In most cases, a natural guardian has custodial rights but only limited rights to control the assets of a ward.
A Guardian Ad Litem is often appointed only for the limited purposes of litigation.
Guardian of the Estate, Guardian of the Property, or Conservator usually refers to someone appointed to manage assets and make financial decisions for the ward.
General Conservatorship or Guardianship of the Person and Estate typically provides full decision-making powers (with respect to finances, medical decisions, living arrangements, etc.) for a person deemed to be unable to make decisions or perform necessary tasks on his or her own.

Limited Guardianship/Conservatorship

Powers of a conservator or guardian can often be limited to reflect the needs of the individual who has a disability. With a limited guardianship, the guardian is granted full power only in a specified area or areas in the life of the person with a disability. In fact, laws in a number of states specifically provide for the appointment of a limited conservator or guardian for certain individuals with developmental disabilities. A limited conservator or limited guardian is appropriate for individuals whose conditions impair their ability to care for themselves or their property, but not to the extent that a general conservatorship or full guardianship is required. A limited conservatorship or limited guardianship encourages maximum self-reliance and independence of the adult with developmental disabilities by giving the conservator or guardian power only over those activities the individual is unable to handle.

Alternatives to Guardianships/Conservatorships

Not all situations require the appointment of a guardian. In certain situations, a person with a disability may only need assistance and protection managing money rather than require the services of a court-appointed guardian and all that it entails. In these circumstances, an alternative to guardianship is a Supplemental Security Income Representative Payee who can be designated by the Social Security Administration to receive and disburse SSI benefits on behalf of that person. The Representative Payee must make an annual accounting to the Social Security Administration on how the funds are spent.
Another alternative to guardianship is a Durable Power of Attorney. By signing a Durable Power of Attorney, a person with a disability can allow certain decisions such as those concerning management of his or her property, living situation or medical care to be made by another specified person, without court intervention. Certain rights can be preserved without the expense and time of court proceedings.

Additionally, a Special Needs Trust can be effectively administered by a trustee (one who manages the trust) or co-trustee to manage the finances and personal effects of a person with a disability, in lieu of a court-appointed general conservatorship or guardianship. In some situations, a skilled trustee or co-trustee can help meet the financial and personal needs of a person with a disability without court intervention or a restriction of certain rights. However, in the situation of only one individual serving as trustee and guardian, opportunities for “checks and balances” are decreased, posing the possibility for conflict of interest.

Whom to choose as Guardian

The appropriateness of the person being nominated should take into account some basic, yet often overlooked aspects:

Age: The age of the potential guardian in relation to the length of time that the guardian will have to serve should be considered. If the ward is a child, he may outlive a guardian such as a grandparent, aunt or uncle. For this reason, or in case any other situation arises where the guardian is unable to fulfill the task, parents should consider naming a “back-up” or contingent guardian in addition to their first choice.

Existing relationship with the ward: The guardian’s function is necessarily one that entails making personal decisions for the ward, so the guardian should be someone whom the individual trusts and with whom he or she has a good relationship, and who will actively participate in care decisions, provision of services and attention to the needs of the individual. Professionals or institutions, such as attorneys, accountants or banks, can be named but are not necessarily a good choice since their services are usually costly and, lacking any personal relationship to the individual, may not be sensitive to his or her needs.

What is the role of other family members?

Family members are usually the first and best choice as guardian or conservator; however, it should not always be presumed that this will be the case. Family members may not be suited for the role for a variety of reasons: they may not live nearby; they may not have the ability to assume the responsibility; naming one sibling or fami
ly member over another may cause friction; or they may simply not want to take on the job. However, by naming co-guardians to share the responsibilities or by asking them to assume other, related roles, family members can be included. They can be named to act as advisors to the guardian or conservator, be notified of certain actions and be copied on all important documents relating to decisions made by the guardian.

Making choices

A guardian or conservator will have considerable power in the life of the individual with a disability, so the individual should have as much input as possible in the choice. The process should evolve from discussions that include the person who has a disability as much as possible and an attorney who is knowledgeable in this type of planning. A clear, realistic picture should emerge of what possible future needs and decisions will have to be addressed (financial, residential, educational, health-related) and how much help the individual will need with each. The wishes and feelings of the parent and the child can be objectively discussed and incorporated into the level of support that is needed, and choices for guardians or advocates can be made as necessary.

SOURCE: Parent to Parent of Georgia in an article by Nadine Vogel reprinted from Exceptional Parent Magazine