Protecting your disabled child

Parents of a disabled child often assume that they can continue to be the legal guardian during the child’s entire life.  However, an adult is presumed competent unless otherwise deemed incompetent after a competency proceeding regardless of whether that person has the capacity to make informed decisions.  In other words, once your disabled child reaches the age of 18, you are no longer that child’s legal guardian and he or she has the right to make his or her own decisions.   For example, if your child needs a particular medical treatment, your permission is no longer sufficient.  Your child must personally give approval.  If he or she cannot understand the treatment that is being proposed to give approval, a doctor may not be willing to provide care without court authority.  Getting access to your disabled child’s medical information is also problematic.   Without your child’s approval, a health care provider cannot disclose a patient’s private medical information – even to immediate family members.  If your child does not give approval, you are not entitled to that information.

Once your child turns 18, he or she also has the right to decide his or her own special education services. Your child could decide to forfeit any future special education services.   Additionally, your child can legally sign and be bound by legal documents such as leases, contracts and credit card agreements. This is true even if he or she lacks the cognitive ability to understand what he or she is signing.

In order to protect your child from unscrupulous individuals who may exploit his or her inability to make informed choices, it is necessary to familiarize yourself with the various legal options available to protect him or her in adulthood.  Following is a brief description of guardianship and conservatorship as well as various alternatives to guardianship and conservatorship that are generally available for disabled persons.

Guardianship and/or Conservatorship are an option for persons who, because of mental illness, developmental disability or physical disability, lack sufficient understanding or capacity to make or communicate responsible decisions concerning their care, and/or are unable to manage their financial affairs.  Guardianships and Conservatorships are supervised by the Court.

Guardianship is a legal relationship whereby the Probate Court gives a person the power to make personal and medical decisions for a disabled person.  A guardian is responsible for monitoring the care of the disabled person.  A guardian may determine where the person will live, what type of medical treatment he or she receives, and most other aspects of the protected person’s life.  The guardian need not use his or her own funds for the disabled person’s support, provide daily supervision or even live with the disabled person.  However, the guardian must attempt to ensure that the disabled person is receiving proper care and supervision.  In certain situations, the guardian must obtain prior court approval before acting.  These include the administration of antipsychotic medication, sterilization and the withdrawal of life-prolonging treatments.   Generally, the guardian is required to file a care plan and to report annually on the status of the disabled person.

Conservatorship is a legal relationship whereby the Probate Court appoints a person the power to take financial responsibility and control over the assets of the disabled.  A conservator may take possession of the disabled person’s assets and is obligated to protect, invest and use them disabled person’s benefit.     Although the conservator is responsible for handling the disabled person’s financial resources, the conservator is not personally financially responsible for the disabled person from his or her own resources.  The conservator must file an annual accounting of the disabled person’s funds with the court.

Under Massachusetts law, guardianship and conservatorship can be limited or general.  A limited guardianship may limit the guardian’s decision making to certain areas, such as decisions about medical treatment, while allowing the disabled person to make his or her own decisions in all other areas.    For example, you could be the medical guardian but your child would retain the ability to make decisions about school, work and finances.  A limited conservator would only handle some of the disabled person’s funds.  For example, if your child is working he or she may retain all of his or her earnings from employment and you would manage all other assets, like investments and real estate.   Or your child might be able to keep a limited amount of funds (say $5,000) in his or her own name and you would manage everything else.

A general guardian or conservator has broad control and decision making authority.  A general guardianship and/or conservatorship may be appropriate if the person has significant intellectual disability or mental illness and, as a result, is unable to meaningfully participate in important decisions affecting him or her.  A general guardian makes all major decisions for the disabled person in such areas of medical care, living arrangements, work and contracts.  Under a general conservator, the disabled person is unable to endorse paychecks, maintain a bank account, or control any of his or her own funds.

A temporary guardian or conservator may be appointed in an emergency situation when certain decisions must be made immediately. Generally, a permanent guardianship or conservatorship must be requested along with the temporary appointment. In Massachusetts, the duration of a temporary appointment is ninety (90) days.

Before being appointed Guardian or Conservator, there must be a court hearing.  To begin the process, a petition requesting the appointment of a guardian and/or conservator and a clinical team report or medical certificate must be filed with the Probate Court.  The proposed guardian/conservator must also file a bond with or without sureties with the court.  A medical certificate Then, the court directs that the heirs of the disabled person and the disabled person himself or herself receive notice of the filing of the petition of guardianship.   The court sets a date by which anyone wishing to object may do so, including the disabled person.  A hearing is then held where a judge decides whether a guardian and/or conservator should be appointed.

To approve a guardianship or conservatorship, the court must be persuaded that there are no “less restrictive alternatives.”  You must prove to the court that your child’s interests cannot be adequately protected by less intrusive, voluntary arrangements.

Below are some common, less intrusive alternatives to guardianship and/or conservatorship:

1) A joint bank account. An easy way to help a disabled person to manage a small amount of money is with a joint bank account.  A joint bank account can provide structure to allow for budgeting and money management.  A joint bank account is not appropriate if you are the representative payee for government benefits such as SSI and SSDI because only the rep payee is  supposed to have access to the rep payee account.

2) A Representative Payee. A  rep payee can be named to manage the funds of a disabled person who receives benefits checks from Social Security or the Veteran’s Administration. Benefits checks are sent to the representative payee who spends the funds for the benefit of the individual with the disability. The representative payee has authority only over income from the particular check(s) for which s/he is payee. The person who is disabled would still make personal decisions.

3) A Durable Power of Attorney. A durable power of attorney (DPOA) is useful for individuals who are mildly or moderately incapacitated and capable of choosing another person to handle their money. The power of attorney is a legal document that grants one person the legal authority to handle the financial affairs of another.

There are both drawbacks as well as advantages to using a DPOA. A DPOA can be beneficial if a person becomes seriously ill or incapacitated.  The DPOA will continue to operate and be legally valid.  Unlike a conservatorship, the disabled person does not forfeit control over his or her finances.  He or she still has the legal authority to make decisions and, therefore, can commit and be held to a contract that is not in their best interest.  Also, the disabled person can withdraw the DPOA at any time and can remove the agent verbally or by physically destroying the DPOA.  Thus, your child can revoke your authority at any time, without prior notice.

4) A Health Care Proxy. A Health Care Proxy (HCP) is a legal document that enables a competent individual (the “principal “)to designate a health care agent to make health care decisions should the individual become incompetent to make them. The proxy becomes effective upon a doctor’s written certification of the principal’s incapacity.  The health care agent can be permitted to make all health care decisions, including decisions about life-sustaining treatment, and in many ways eliminates the need for a guardian. A HCP can be important when there is a medical crisis but may not be effective if you want to be able to direct your son’s routine medical care if he is reasonably healthy.

If you and your child give conflicting instructions, your child’s wishes must prevail.  For example if your child refuses a treatment that you are confident would help, the healthcare provider must adhere to your child’s wishes, not yours.  Your child may also revoke the document at any time and in any manner that demonstrates specific intent to terminate the power.   Your authority may be revoked when you most need it.  This makes the HCP less than ideal for someone who is attempting to manage the care of a person with mental health issues.

5) Release and Authorization of Medical Information. This form will allow you to get your son’s private medical information.  If you have questions about treatment, you would be able to discuss them directly with the provider.  This form only allows you to speak with the provider.  It does not give you any say in the health care provided.   It also can be revoked at any time, shutting you out completely.

6) Special Needs Trusts. A trust is a legal plan for placing funds and other assets in the control of a trustee for the benefit of an individual with a disability. A trust may also make it possible for the beneficiary to receive the advantage of extra income without losing valuable state and federal benefits.  The funds held in a special needs trust may be used to purchase items and services that government benefits do not provide.  These include recreation, vacations, travel, special therapies, paid staff or companions, and personal items such as furniture, a television, a computer, software, music player and sports equipment.  The special needs trust must be irrevocable.  This means that once the trust has been established and the funds have been transferred to the trustee, you cannot change your mind and get the money back.   Another important point is that only the trustee, not the beneficiary, can control how the funds will be used.

Whether to seek appointment as a guardian or conservator is obviously a complicated issue. Before deciding to seek guardianship or conservatorship, you should carefully consider your child’s individual circumstances, including his or her strengths and weaknesses, needs and best interests.   These include medical, educational, financial, vocational/adult services, living arrangements, legal, self-care, safety and communication.  If your child is capable of making some but not all decisions, one of more of the alternatives to guardianship or conservatorship should be considered.

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