There are a number of alternatives to guardianship. Because guardianship involves such a severe restraint on an individual’s rights, it should only be considered after all other options have been shown to be ineffective or unavailable. Possible alternatives (each has advantages and disadvantages that should be discussed with an attorney) are discussed below.
As a general matter, supported decision-making occurs when an individual with cognitive challenges is the ultimate decision-maker but is provided support from one or more persons who explain issues to the individual and, where necessary, interpret the individual’s words and behavior to determine his or her preferences. This is in contrast to having a surrogate or agent under a durable power of attorney make decisions on a person’s behalf.
A representative or substitute payee is a person who manages public benefits such as Supplemental Security Income, or Social Security Disability Income for persons who are not fully capable of handling their own benefits. The representative payee does not act as a legal guardian, but is expected to assist the person with money management, along with providing protection from financial abuse and victimization. Of course it is important to choose a representative payee you trust to not take advantage of you, as they will have access to and control of your financial benefits. You want to choose a payee who knows you and wants to help you, and who sees you often and knows what you need. In most cases, your payee would be a close friend or family member. In other cases social service agencies or other organizations may serve as payees. The SSA has to approve your payee.
There are a number of case management and community advocacy organizations that can help people with disabilities to obtain the support and services they need to remain independent. You can contact the Delaware Aging and Disability Resource Center to find out about different resources: http://dhss.delaware.gov/dhss/dsaapd/adrc.html or 1-800-223-9074.
There are several state agencies that provide services to people with disabilities, which can help you to maintain independence in the community. Some of these agencies include:
A health care surrogate can make health care decisions on your behalf. These decisions can include decisions to treat, withdraw or withhold treatment of an adult. There are two ways to establish a health care surrogate. One allows a doctor to appoint a surrogate for an individual who is not competent, and the other allows individuals who are competent to designate someone as their healthcare surrogate in the event a surrogate is necessary.
When an individual lacks competence the person’s doctor must determine that the person lacks capacity and that there is no guardian, Advanced Health Care Directive or similar authority that covers the decisions at issue. This must be confirmed in the patient’s medical records. If the person with the disability is not competent to designate a healthcare surrogate, the law provides family members who can be permitted to act as a healthcare surrogate in a preferred order (1. spouse unless a divorce has been filed, 2. adult child, 3. parent, 4. adult sibling, and others). An individual cannot be designated as a healthcare surrogate if there is a criminal or civil no-contact order between the person with a disability and the potential surrogate, or if the person with a disability has filed a Protection from Abuse order against the potential surrogate.
For individuals who ARE competent, the person with a disability may designate an individual to act as a healthcare surrogate by personally informing a supervising health-care provider with another person there to witness (who is not the surrogate). This must be confirmed in writing in the patient’s medical record and signed by the witness. This allows a person with a disability to designate a trusted individual to make healthcare decisions in the event the person cannot do so for himself. It does not require a special document, attorney fees, or court!
AHCDs are also known as “living wills” or “Power of attorney for health care.” These documents are created so that an individual can authorize another person to make health care decisions on the individual’s behalf, if the individual loses the ability to make those decisions in the future, when they are no longer able to make such a decision on their own.
A trust is a formal legal relationship whereby money or property is held by one party for the benefit of another, the “beneficiary.” The trustee holds that money and is legally obligated to only use that money for the benefit of the beneficiary. The trust will explain what the money can be used for and how much and how often money will used to pay for housing, medical care, etc. Some trusts will require the trustee to spend the money in a way to maintain a person’s current standard of living, while other trusts may be less or even more specific. Trusts have the benefit of allowing a person to live in the community, while ensuring trust funds will be used wisely. While this prevents the person from being taken advantage of, trusts can cost significant money to establish and to administer.
There are specially designed trusts that allow people with disabilities to continue to be eligible for many public benefits, despite the funds in the trust. These are often referred to as “special needs trusts.” Individuals should consult a professional with expertise in special needs trusts if you are interested in establishing one.
In 2014 the U.S. Congress passed the Achieving a Better Life Experience or ABLE Act. ABLE Act accounts allow individuals with disabilities that manifested before the age of 26 to create special financial accounts that will not be considered for programs such SSI and Medicaid. Through an ABLE Act account, eligible individuals can save up to $100,000 without risking their eligibility for these government benefits. States need to put regulations in place so that banks and financial institutions can offer these accounts.
A Durable Power of Attorney is created when a person voluntarily authorizes, in writing, another individual (called an “agent”) to take action on the person’s behalf. A durable power of attorney is usually limited to legal and financial affairs. The “durability” term is important, because for a durable power of attorney, the power of the representative to act on the person’s behalf continues after the person is no longer capable of making decisions. Powers of attorney may be revoked in writing at any time by the person who granted it, provided the person is able to understand what they are doing at the time of revocation. The revocation must meet statutory requirements. You should make sure that whoever you choose to serve as your agent through a Power of Attorney is someone you trust and who knows and will respect your wishes. It is very important that the Power of Attorney meet all statutory requirements, including an agent certification, notarization, and witnesses.
This is a relatively simple way to have someone you trust help you with your finances, but it is not without risk. By opening a joint checking account, the other person can manage your account, including deposits and withdrawals, without you needing to be involved. You should be certain you trust the other person on the account, because that person has access to all of the money in the account. You need to carefully consider not only the risk of fraud, but also whether having joint ownership of funds impacts either account owner’s eligibility for public benefits, including Medicaid and SSI.
 If none of the listed family members are able to take this role, there is a procedure by which another trusted adult can act as healthcare surrogate when the person with a disability is a patient in an acute care setting or is a client of the Department of Health and Social Services.