Tom Nerney, Executive Director of the Center for Self-Determination, has said: "We have to reject the very idea of incompetence. We have to replace it with the idea of 'assisted competence.' This will include a range of supports that will enable individuals with cognitive disabilities to receive assistance in decision-making that will preserve their rights. ..."
Thankfully, attitudes about individuals with Down syndrome and the need for guardianship have begun to change in many states. It is possible to obtain the same kind of guidance for adults with Down syndrome that they would receive from guardians without having them declared incompetent. Some of the alternatives, which may not be available in all states, are listed below.
Some of the documents that may help an adult with Down syndrome avoid having a guardian or conservator appointed include:
Advanced Directives: The name for written instructions your child with Down syndrome can sign, in advance, about his future medical treatment. Advance directives take effect if he becomes incapacitated and is unable to speak for himself or make decisions about his medical treatment. They are also called living wills. They can be easily prepared. There are state-specific forms readily available either online or in most hospitals.
Authorization to Advocate: A document signed by the individual with a disability that appoints another person to be their personal representative or advocate and to assist in managing their affairs without limiting the individual's rights. These documents can be individualized to meet the needs of the person with Down syndrome. If your adult child has such a document, it can prevent the funding authority from using the lack of a guardian as an excuse not to talk to family members.
Living Will: A document, signed while you are competent, that instructs doctors to withdraw or withhold artificial life support if you become medically "terminal." Living wills only apply to artificial life-sustaining procedures.
Power of Attorney: A document, signed while you are competent, appointing someone you name as your "agent" to handle your affairs. There are "general" powers of attorney that convey a broad range of authority and "limited" powers of attorney that convey power over specific activities. A Power of Attorney should be drafted by a lawyer and it needs to be notarized.
Durable Power of Attorney: A Power of Attorney becomes "durable" when the document indicates the agent's authority does not stop if you become incapacitated. Financial and medical Powers of Attorney can be made durable.
Medical (Durable) Power of Attorney or Health Care Proxy: A type of Power of Attorney that appoints an agent to provide informed consent to surgery, medical treatment, personal care and other medical or health-related matters. A Medical Durable Power of Attorney covers a broader spectrum of medical procedures than a Living Will can.
Financial (Durable) Power of Attorney: A type of Power of Attorney that appoints an agent to make financial decisions and/or handle financial transactions for you.
Representative Payee: A person designated by the Social Security Administration to receive monthly benefit checks on behalf of a beneficiary if this is determined to be in the beneficiary's best interest. A representative payee is appointed for an adult beneficiary when he is physically or mentally incapable of managing his own funds. Often, the Social Security Administration requires a Representative Payee (often called the "rep payee") to be named for a person with Down syndrome.
Other planning options and techniques:
Special Needs Trust: A trust used to provide supplemental funds for a person with a disability without jeopardizing access to government programs.
Special Bank Accounts: Bank accounts that require a co-signer to access funds, write checks, or transact business, or accounts that are in the name of another for the benefit of another person.
It is possible for a person with Down syndrome to use a combination of these planning strategies, with different people chosen to handle different responsibilities.