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PRACTICE FORUM GUARDIANSHIP FOR PEOPLE WITH SEVERE MENTAL RETARDATION: CONSENT FOR URGENTLY NEEDED TREATMENT Social workers often assist clients who have problems obtaining medical services. Assisting a client with severe mental retardation who has reached the age of majority but who does not have a legal guardian appointed to give informed consent is particularly difficult. Doctors and hospitals often refuse to treat such a person except in life-threatening situations. They question whether the person—though over 18 and legally competent—can truly be informed and provide consent to treatment for an acute medical need. Treatment is often withheld until a guardian is appointed to give informed consent. Guardianship is a complex legal process that can take many months. In the meantime, the mentally retarded person's health can deteriorate considerably. It is vital for social workers to understand legal guardianship and to know how to expedite the process for clients who need prompt medical attention.
Have you worked with a practice innovation readers should know about? The Practice Forum editor can help you develop your insights into an article for this column. Describe your practice in no more than eight double-spaced pages and send to Practice Forum, NASW, 750 First Street NE, Washington, DC 20002.
UNDERSTANDING LEGAL GUARDIANSHIP
By law, the duty of caring for people who, by reason of mental incompetence, cannot see to their own affairs belongs to the courts and is delegated to court-appointed guardians (Rogers, 1984). Guardians are people who are held legally responsible to see to the affairs of individuals who are incompetent to make their own decisions, protecting them as well as advocating in their interests (Marlett, 1984). The guardianship proceeding is designed to answer important, weighty questions. In brief, the petitioner is asking the court to decide whether a person's legal rights and responsibilities should be ceded to another party, and if so, what person is suitable to serve as guardian, what the limits of his or her authority should be, and how to monitor the guardian and the ward. THE GUARDIANSHIP PROCESS
The decision the court is asked to make takes time and is compounded by heavy courtroom schedules and the burden of requisite legal procedures. Obtaining a guardian is difficult and involves many steps. First, a party must petition the court. The petition is made by an interested party, usually a relative, who wants to oversee the
CCC Code: 0360-7283/92 $3.00 © 1992, National Association of Social Workers, Inc.
13
personal and financial affairs of a proposed ward. The ward's personal affairs may include decisions about where he or she lives, kinds of training or services he or she will receive, and medical treatment. Financial affairs include decisions about bank accounts, property, expenditures, and state and federal benefits. The court may be petitioned to grant full guardianship. Alternatively, a partial or limited guardianship may be proposed if the proposed ward is capable of making some of these decisions (Association for Retarded Citizens National Insurance Committee, 1978). For example, a conservatorship may be sought for the sole purpose of administering the ward's financial affairs. A petition for temporary guardianship may be made for the purpose of making a specific, time-limited decision such as whether or not the ward should undergo a particular medical procedure. In certain circumstances (for example, the administration of psychotropic medications), the court may not be permitted to delegate its duty and must make a substituted judgment for the ward (Dunphy & Cross, 1987). Although not necessary it is often advisable to enlist the help of an attorney before petitioning the court. Once the petition is made, the court may need to appoint a second attorney to represent the proposed ward. Sometimes the court appoints a guardian ad litem, normally another attorney, whose function it is to serve as the judge's eyes and ears by interviewing the proposed ward and gathering information about the ward for the court. The attorneys will ordinarily be asked to investigate the proposed ward's situation and write and file briefs with the court. Next, a hearing date must be set, papers must be served and returned, and a bond may be required of the proposed guardian, especially if that person is to have any fiduciary powers. A guardianship proceeding may involve several of these steps or all of them. Greater complexity is especially likely when no family member comes forward to petition the court and the impetus for guardianship comes from a third party such as a human services agency. Although many human services agency clients need a guardian, there may not be an interested party willing to step forward and serve in 14
that capacity. Before the Education for All Handicapped Children Act of 1975, families institutionalized a child with severe mental retardation and then "dropped out"; this practice has abated but has not stopped. Even as these children grow and develop and are transferred to community-based settings, their families may remain unavailable. Even more important, a paid caregiver often cannot be appointed guardian. Doing so would create a potential conflict of interest, for the same person would be both decision maker and contracted service provider. EXPEDITING THE PROCESS
When informed consent is urgently needed, the caseworker needs to begin the legal process of establishing guardianship. If fortunate enough to work with an involved and savvy parent, the caseworker may find that orienting the parent to the guardianship process is sufficient. More commonly the parent is reluctant or confused, or there is no involved parent. In these instances, the caseworker must take the following steps. Recruiting a Petitioner
The caseworker should ask the parent or the sponsoring social services agency to go to court. Either will require the services of an attorney. The social worker should also be a firm advocate for guardianship and patiently explain why the person needs a guardian and what will happen if a guardian is and is not appointed. Recruiting a Potential Guardian
If there is no involved family member, the petitioner may have to ask the court to appoint an attorney, child care professional, or other interested party to serve as guardian. Because it can be difficult for the court to locate a volunteer for this role, it is best for the caseworker to begin the search early. A former, but not current, paid caregiver may be recruited for the guardianship role. It may be important to determine whether a guardian is entitled to fair compensation for his or her time and expense in fulfilling the role. Often a severely mentally re tarded person's
HEALTH AND SOCIAL WORK/ VOLUME 17, NUMBER 1 / FEBRUARY 1992
Social Security or Supplemental Security Income funds can be used to defray such expenses, or certain costs can be billed to the court. This relieves the potential guardian's apprehension that guardianship will be a thankless task. Staying in Touch with Key Individuals
Once the prospective guardian and an attorney have agreed to petition the court, the caseworker should find out what documents are needed and arrange to gather them speedily. For example, physicians' affidavits may be needed. Making a phone call, typing in the information called for on the document, and dropping it off with the physician's secretary will help speed the process and prevent the affidavit from suffering benign neglect at the doctor's office. Keeping in contact with the attorney handling the case and apprising him or her of the client's status will help keep the case from being put aside.
CONCLUSIONS
Certain mentally retarded people come of age and, when medical problems arise, cannot obtain treatment. They are legally presumed competent, but to the medical establishment they are not competent to render informed consent. Without the actions of a legal guardian appointed in court, physicians will not treat these individuals unless their medical conditions become life threatening. Because it can take many months to appoint a guardian, the caseworker must know how to expedite this process. Caseworkers must be familiar with this court process and take the steps necessary to expedite it. About the Author Burt R. Downes, EdD, is Director of Clinical and Social Services, Berkshire Children 's Community, 249 North Plain Road, Housatonic, MA 01236.
Preparing to Go•to Court
References
The mentally retarded person may need to make a court appearance. Some judges will not order guardianship without actually meeting the proposed ward. The potential guardian should be prepared to answer questions regarding the extent of his or her knowledge of or contact with the client; the severity of the client's handicapping condition; and the client's functional skills, family involvement, and future placement plans.
Association for Retarded Citizens National Insurance Committee. (1978). How to provide for their future (rev. ed.). Arlington, TX: Association for Retarded Citizens. Dunphy, S. M., & Cross, J. H. (1987). Medical decisionmaking for incompetent persons: The Massachusetts substituted judgment model. Western New England Law Review, 9, 153-167. Education for All Handicapped Children Act, 89 Stat. 773, 776, 794; 20 U.S.C.A. 1411 (Nov. 29, 1975). Marlett, N. J. (1984). The determination of personal competence: Important considerations for parents, service providers, and professionals. In T. Appoloni & T. P. Cooke (Eds.), A new look at guardianship (pp. 87-114). Baltimore: Paul H. Brookes. Rogers, P. R. (1984). Understanding the legal concept of guardianship. In T. Appoloni & T. P. Cooke (Eds.), A new look at guardianship (pp. 35-48). Baltimore: Paul H. Brookes.
Staying in Touch with the Guardian
Once a guardian is appointed, the caseworker should keep the guardian informed of the client's status and progress. The guardian should be contacted regarding all decisions that need to be made for the ward, not just for decisions relating to the problem that precipitated his or her appointment. The guardian's role should be to assume an advocacy function. In the author's experience, school districts and state agencies treat guardians with the same respect accorded to the parents of their clients and will take their requests seriously. PRACTICE FORUM
Accepted November 12, 1991
15
PRACTICE FORUM GUARDIANSHIP FOR PEOPLE WITH SEVERE MENTAL RETARDATION: CONSENT FOR URGENTLY NEEDED TREATMENT Social workers often assist clients who have problems obtaining medical services. Assisting a client with severe mental retardation who has reached the age of majority but who does not have a legal guardian appointed to give informed consent is particularly difficult. Doctors and hospitals often refuse to treat such a person except in life-threatening situations. They question whether the person—though over 18 and legally competent—can truly be informed and provide consent to treatment for an acute medical need. Treatment is often withheld until a guardian is appointed to give informed consent. Guardianship is a complex legal process that can take many months. In the meantime, the mentally retarded person's health can deteriorate considerably. It is vital for social workers to understand legal guardianship and to know how to expedite the process for clients who need prompt medical attention.
Have you worked with a practice innovation readers should know about? The Practice Forum editor can help you develop your insights into an article for this column. Describe your practice in no more than eight double-spaced pages and send to Practice Forum, NASW, 750 First Street NE, Washington, DC 20002.
UNDERSTANDING LEGAL GUARDIANSHIP
By law, the duty of caring for people who, by reason of mental incompetence, cannot see to their own affairs belongs to the courts and is delegated to court-appointed guardians (Rogers, 1984). Guardians are people who are held legally responsible to see to the affairs of individuals who are incompetent to make their own decisions, protecting them as well as advocating in their interests (Marlett, 1984). The guardianship proceeding is designed to answer important, weighty questions. In brief, the petitioner is asking the court to decide whether a person's legal rights and responsibilities should be ceded to another party, and if so, what person is suitable to serve as guardian, what the limits of his or her authority should be, and how to monitor the guardian and the ward. THE GUARDIANSHIP PROCESS
The decision the court is asked to make takes time and is compounded by heavy courtroom schedules and the burden of requisite legal procedures. Obtaining a guardian is difficult and involves many steps. First, a party must petition the court. The petition is made by an interested party, usually a relative, who wants to oversee the
CCC Code: 0360-7283/92 $3.00 © 1992, National Association of Social Workers, Inc.
13
personal and financial affairs of a proposed ward. The ward's personal affairs may include decisions about where he or she lives, kinds of training or services he or she will receive, and medical treatment. Financial affairs include decisions about bank accounts, property, expenditures, and state and federal benefits. The court may be petitioned to grant full guardianship. Alternatively, a partial or limited guardianship may be proposed if the proposed ward is capable of making some of these decisions (Association for Retarded Citizens National Insurance Committee, 1978). For example, a conservatorship may be sought for the sole purpose of administering the ward's financial affairs. A petition for temporary guardianship may be made for the purpose of making a specific, time-limited decision such as whether or not the ward should undergo a particular medical procedure. In certain circumstances (for example, the administration of psychotropic medications), the court may not be permitted to delegate its duty and must make a substituted judgment for the ward (Dunphy & Cross, 1987). Although not necessary it is often advisable to enlist the help of an attorney before petitioning the court. Once the petition is made, the court may need to appoint a second attorney to represent the proposed ward. Sometimes the court appoints a guardian ad litem, normally another attorney, whose function it is to serve as the judge's eyes and ears by interviewing the proposed ward and gathering information about the ward for the court. The attorneys will ordinarily be asked to investigate the proposed ward's situation and write and file briefs with the court. Next, a hearing date must be set, papers must be served and returned, and a bond may be required of the proposed guardian, especially if that person is to have any fiduciary powers. A guardianship proceeding may involve several of these steps or all of them. Greater complexity is especially likely when no family member comes forward to petition the court and the impetus for guardianship comes from a third party such as a human services agency. Although many human services agency clients need a guardian, there may not be an interested party willing to step forward and serve in 14
that capacity. Before the Education for All Handicapped Children Act of 1975, families institutionalized a child with severe mental retardation and then "dropped out"; this practice has abated but has not stopped. Even as these children grow and develop and are transferred to community-based settings, their families may remain unavailable. Even more important, a paid caregiver often cannot be appointed guardian. Doing so would create a potential conflict of interest, for the same person would be both decision maker and contracted service provider. EXPEDITING THE PROCESS
When informed consent is urgently needed, the caseworker needs to begin the legal process of establishing guardianship. If fortunate enough to work with an involved and savvy parent, the caseworker may find that orienting the parent to the guardianship process is sufficient. More commonly the parent is reluctant or confused, or there is no involved parent. In these instances, the caseworker must take the following steps. Recruiting a Petitioner
The caseworker should ask the parent or the sponsoring social services agency to go to court. Either will require the services of an attorney. The social worker should also be a firm advocate for guardianship and patiently explain why the person needs a guardian and what will happen if a guardian is and is not appointed. Recruiting a Potential Guardian
If there is no involved family member, the petitioner may have to ask the court to appoint an attorney, child care professional, or other interested party to serve as guardian. Because it can be difficult for the court to locate a volunteer for this role, it is best for the caseworker to begin the search early. A former, but not current, paid caregiver may be recruited for the guardianship role. It may be important to determine whether a guardian is entitled to fair compensation for his or her time and expense in fulfilling the role. Often a severely mentally re tarded person's
HEALTH AND SOCIAL WORK/ VOLUME 17, NUMBER 1 / FEBRUARY 1992
Social Security or Supplemental Security Income funds can be used to defray such expenses, or certain costs can be billed to the court. This relieves the potential guardian's apprehension that guardianship will be a thankless task. Staying in Touch with Key Individuals
Once the prospective guardian and an attorney have agreed to petition the court, the caseworker should find out what documents are needed and arrange to gather them speedily. For example, physicians' affidavits may be needed. Making a phone call, typing in the information called for on the document, and dropping it off with the physician's secretary will help speed the process and prevent the affidavit from suffering benign neglect at the doctor's office. Keeping in contact with the attorney handling the case and apprising him or her of the client's status will help keep the case from being put aside.
CONCLUSIONS
Certain mentally retarded people come of age and, when medical problems arise, cannot obtain treatment. They are legally presumed competent, but to the medical establishment they are not competent to render informed consent. Without the actions of a legal guardian appointed in court, physicians will not treat these individuals unless their medical conditions become life threatening. Because it can take many months to appoint a guardian, the caseworker must know how to expedite this process. Caseworkers must be familiar with this court process and take the steps necessary to expedite it. About the Author Burt R. Downes, EdD, is Director of Clinical and Social Services, Berkshire Children 's Community, 249 North Plain Road, Housatonic, MA 01236.
Preparing to Go•to Court
References
The mentally retarded person may need to make a court appearance. Some judges will not order guardianship without actually meeting the proposed ward. The potential guardian should be prepared to answer questions regarding the extent of his or her knowledge of or contact with the client; the severity of the client's handicapping condition; and the client's functional skills, family involvement, and future placement plans.
Association for Retarded Citizens National Insurance Committee. (1978). How to provide for their future (rev. ed.). Arlington, TX: Association for Retarded Citizens. Dunphy, S. M., & Cross, J. H. (1987). Medical decisionmaking for incompetent persons: The Massachusetts substituted judgment model. Western New England Law Review, 9, 153-167. Education for All Handicapped Children Act, 89 Stat. 773, 776, 794; 20 U.S.C.A. 1411 (Nov. 29, 1975). Marlett, N. J. (1984). The determination of personal competence: Important considerations for parents, service providers, and professionals. In T. Appoloni & T. P. Cooke (Eds.), A new look at guardianship (pp. 87-114). Baltimore: Paul H. Brookes. Rogers, P. R. (1984). Understanding the legal concept of guardianship. In T. Appoloni & T. P. Cooke (Eds.), A new look at guardianship (pp. 35-48). Baltimore: Paul H. Brookes.
Staying in Touch with the Guardian
Once a guardian is appointed, the caseworker should keep the guardian informed of the client's status and progress. The guardian should be contacted regarding all decisions that need to be made for the ward, not just for decisions relating to the problem that precipitated his or her appointment. The guardian's role should be to assume an advocacy function. In the author's experience, school districts and state agencies treat guardians with the same respect accorded to the parents of their clients and will take their requests seriously. PRACTICE FORUM
Accepted November 12, 1991
15
