Custody planning with families affected by HIV.

Custody planning with families affected by HIV. Despite treatment advances, parents with HIV/AIDS may becomeincapacitated or may die before their children are grown. Custodyplanning or planning for the children's care in case of theparent's illness or death is often identified as an important stepby service providers and parents (Goggin et al., 2001; Hackl, Somlai,Kelly, & Kalichman, 1997; Mason, 1998; Tompkins, Henker, Whalen,Axelrod, & Comer, 1999). With plans in place and smooth transitions,children can have a sense of continuity and predictability (Nagler,Adnopoz, & Forsyth, 1995; Siegel & Freund, 1994). A formal orlegal plan is generally considered the best outcome for parents andchildren. If formalized for��mal��ize?tr.v. for��mal��ized, for��mal��iz��ing, for��mal��iz��es1. To give a definite form or shape to.2. a. To make formal.b. before the parent's death, then a legalbattle can be avoided later and the parent has the greatest assurancethat his or her wishes will be observed. Although legal services legal servicesn. the work performed by a lawyer for a client. are necessary to making a formal plan, theyare often insufficient. Parents with HIV HIV(Human Immunodeficiency Virus), either of two closely related retroviruses that invade T-helper lymphocytes and are responsible for AIDS. There are two types of HIV: HIV-1 and HIV-2. HIV-1 is responsible for the vast majority of AIDS in the United States. are often low-income women ofcolor not of the white race; - commonly meaning, esp. in the United States, of negro blood, pure or mixed.See also: Color living in the inner city and managing multiple stressors,including substance abuse, stigma and isolation, and complex medicalregimens (Gillman & Newman, 1996; Goggin et al., 2001; Hackl et al.,1997; Jenkins & Coons, 1996). HIV-infected parents may also bestruggling with depression (Axelrod, Myers, Durvasula, Wyatt, &Cheng, 1999; Miles, Burchinal, Holditch-Davis, Wasilewski, &Christian, 1997; Simoni & Ng, 2000; Tompkins et al., 1999) or withtheir children's behavior (Forehand forehandthe head, neck, shoulders, withers and forelimbs of the horse. et al., 1998; Forsyth, Damour,Nagler, & Adnopoz, 1996). Social workers are crucial to helpingparents address the psychosocial challenges related to health, stigma,and environment that may become obstacles to planning. PROJECT MODEL The Family Options project combines social work and legal servicesto assist HIV-affected families in making arrangements for theirchildren in the event that the parent is no longer able to care forthem. HIV-infected parents and the children's potential caregiversuse the services to develop a plan, legalize le��gal��ize?tr.v. le��gal��ized, le��gal��iz��ing, le��gal��iz��esTo make legal or lawful; authorize or sanction by law.le it, and implement it afterthe parent's death or debilitation debilitationbeing in a state of debility. . Family members or friends whoare already caring for HIV-affected children, that is, children of anHIV-infected parent, also use the service to obtain guardianship of thechildren or otherwise legalize their relationship and to stabilize thenewly configured family. The project is based theoretically on the resiliency model offamily stress, adjustment, and adaptation as it applies to familiesaffected by illness (McCubbin & McCubbin, 1993). Using this model,HIV disease is viewed as a stressor that places physical, financial, andemotional demands on the family due to the parent's potential orongoing disability, interactions with the health care system, andmanagement of complicated medical regimens. In addition, HIV carries astigma that makes emotional and social demands on families. Thefamily's response to this stressor depends on the pileup of otherdemands, such as financial concerns, or family members'developmental stages; how the family views the illness; thefamily's past patterns of functioning; and the family'sresources. The project uses a problem-solving approach emphasizingempowerment to support the family's ability to manage the illnessand think to the future, whether by accessing outside resources ordeveloping skills and providing information and education (see Mason& Vazquez, 2004). In most instances, social workers and attorneys collaborate tofacilitate the completion of a plan. Clients may choose to use legalservices only, but most clients use both legal and social work services.A client usually meets with a social worker first. When it is time toformalize the plan, the social worker makes a referral to a projectattorney. Social workers and attorneys continue to work together withthe client through court procedures and after the plans are legalized toensure that the family is stable. Legal services can also be beneficialin early stages of planning as parents need assistance to obtainbenefits or advocate for services. Social work services are providedprimarily in the home on a weekly or biweekly basis, with telephonecontact as needed as neededprn. See prn order. . Legal services are provided in the attorney'soffice, an outreach site, the client's home, or the courtroom, asneeded. HIV-infected parents using the project's services arepredominantly African American African AmericanMulticulture A person having origins in any of the black racial groups of Africa.See Race. single women in their early 30s whoreceive public benefits, reflecting the majority of parents living withHIV/AIDS in Chicago. The largest percentage has a diagnosis of AIDS atintake, but parents seek the services at all points in the continuum ofHIV disease. Parents on average are planning for two of their children.Many of the parents have additional children, but those children eitherare not in their care or are adults or adolescents. Parents tend not toplan for children older than 13 years of age because the children willmost likely reach 18 years of age by the time the plan needs to beimplemented. Parents also have had more difficulty finding someonewilling to take on the care of an adolescent. Services are conceptualized using a stage framework developed inthe first year of the project based on other conceptualizations ofplanning (Heller & Factor, 1988; Mason, 1998) and refined withpractice experience. Stage 1: Outreach and Education to Parents and Caregivers Outreach includes formal presentations to consumers and socialservices social servicesNoun, plwelfare services provided by local authorities or a state agency for people with particular social needssocial servicesnpl → servicios mpl socialesproviders about the importance of planning, available planningoptions, and the project's services. In addition, social workersand attorneys maintain a presence in the HIV primary health care centersand residential facilities for people with HIV/AIDS. This presenceincludes regularly scheduled days in the facility, making servicesavailable if consumers are interested. Staff have found that beingavailable and accessible normalizes the process and develops trust withthe consumers. Referrals for the project's services come directlyfrom the consumers, whether in person or by calling the project'scoordinator. Service providers also make referrals to the project onbehalf of a parent or caregiver. Plans cannot be made without the activeand voluntary involvement of the parent or caregiver. Stage 2: Developing a Permanency per��ma��nen��cy?n.Permanence: tourists who were in awe of the permanency of the great pyramids of Egypt.Noun 1. Plan with Parents or Caregiversand Children When a parent or caregiver consents to the project's services,she or he is referred to a social worker who completes an assessmentwith the family, including demographics; medical history; past andcurrent living situation; previous child welfare and legal involvement;employment history; a genogram; and barriers and facilitators tocompleting a plan for that family. The assessment begins what is oftenthe longest and most intense stage of the planning process. In thisstage, the social worker and client identify a potential caregiver andtalk with that caregiver to ensure that she or he agrees to take thechildren. More than 80 percent of the potential caregivers chosen byparents are relatives. Parents need not disclose their HIV status to the potentialcaregiver, but it is recommended that the caregiver know that the parenthas a life-threatening illness; the plan is not necessarily for somedistant future but may need to be implemented in the next few years.Parents and potential caregivers may also address past family conflictor a child's problematic behavior, both of which can take priorityover planning or make finding a caregiver more difficult. When theparent is ready to formalize the plan, the social worker and an attorneydiscuss the family's appropriateness for legal services, includingreadiness of the parent to move forward and the viability of the plan. Stage 3: Securing a Legal Permanency Plan When the family completes the legal screening, the parent signs aretainer agreement A retainer agreement is work for hire contract intermediate between simple contracting and direct employment but essentially still contracting. One element that distinguishes it from any other service contract is that a primary consideration which the buyer purchases is an option and works with the attorney, and the social worker ifnecessary, to secure a court-ordered plan. Parents and attorneys maycontact other people with legal standing, such as the children'sfather, to obtain their consent for the plan. Appropriate documents aredeveloped and reviewed with the client. Attorneys appear with the parentin court as needed and follow the case until the court order isobtained. The majority of plans made by parents are standby guardianships, alegal option available in many states that allows the parent todesignate a person to care for her or his children in case of someevent, such as a debilitating de��bil��i��tat��ingadj.Causing a loss of strength or energy.DebilitatingWeakening, or reducing the strength of.Mentioned in: Stress Reduction illness or the parent's death.Another common legal arrangement is guardianship, especially when themother is terminally ill Terminally IllWhen a person is not expected to live more than 12 months.Notes:Any gifts given out by the afflicted person at this time may be considered as a dispersion of the estate rather than a gift. or the children are already living with the newcaregiver. The project has also assisted fathers in establishingpaternity The state or condition of a father; the relationship of a father.English and U.S. Common Law have recognized the importance of establishing the paternity of children. , if the mother agrees, to avoid any contest if the motherdies. In the first four years of the project, slightly fewer than half ofthe birth parents (46 percent) secured legal plans for their children.Parents may not take that step because they are mistrustful of the legalsystem, do not see the need to secure the plan, or view the finalizingof the plan as an emotional hurdle that is too difficult. In manyinstances, however, the parent can make an informal caregiver plan. Theparent identifies whom she or he would like to take care of the childrenin case of death, speaks with the person, and gets his or her verbalcommitment to take care of the children in the future. The project hasrecently begun to document these informal plans as an important steptoward making a formal plan. Although an informal plan may not stand thetest of a legal challenge if another relative steps forward at themother's death and wants to care for the children, thedocumentation of the parent's wishes may have weight in court if acontest ensues. Stage 4: Aftercare or Services Provided to Parents, Caregivers, andChildren to Support the Plan After securing a plan, parents and children may continue to useservices to support the family's stability. Parents may bestruggling with substance abuse recovery or managing their physical andmental health. When a plan is implemented because of a parent'sdeath or debilitation, social work and legal services support the newcaregiver and children through the transition. Issues that commonlyarise include accessing benefits, grief and bereavement BereavementDefinitionBereavement refers to the period of mourning and grief following the death of a beloved person or animal. The English word bereavement , parentingconcerns related to child adjustment, and family adjustment to new rolesand members. LESSONS LEARNED Based on the project's experience, there is no typical lengthof time in the stages. Families go at their own pace with theencouragement of social workers and attorneys. Parents often take abreak from planning to work on other aspects of their health or familiesand then return to planning. Parents may also encounter obstacles at anypoint in the process and thus return to an earlier stage. For example, aparent identifies a potential caregiver who agrees to take the children.The family is going to court to legalize the arrangement when thepotential caregiver's situation changes and either the parent orthe caregiver decides the arrangement will not work. The parent returnsto developing a plan and identifying another potential caregiver. The mean length of time for birth parents to complete a legal planis 10 months, with some parents taking two to three years to complete aplan. During the process, social workers spend significant amounts oftime helping parents talk through or resolve issues that are notdirectly related to permanency planning. Planning is not feasible untilsome of those conflicts or issues are resolved. In addition, planningcan have deep emotional and social implications for the parent, thechildren, and the extended family. Social workers help parents come toterms with their HIV diagnosis and the fact that they might not seetheir children grow up. Long-standing family conflicts reemerge duringthe process of identifying a potential caregiver. Parents and otherfamily members disagree about who should care for the children,especially in light of a family history of physical or sexual abuse.Children may also exhibit depressive symptoms or disruptive behaviors asthey adjust to the parent's HIV disease and the potential loss. Custody planning with HIV-affected families demands that socialworkers have a broad clinical knowledge base, including the effect ofhealth on individuals and families, family systems and communication,child development and parenting, and mental health assessment andtreatment, with an attendant range of skills with which to intervene.The requisite knowledge and skills speak to the complexity of thefamilies' lives as well as the power of an establishedrelationship. Even after completing a plan, parents periodically contactthe social workers and ask for help identifying resources or managingfamily problems that are not related to planning. Planning may progress slowly. For the social worker, patience andpersistence are key. We need to accept that everyone may not make alegal plan, but each step toward a legal plan increases thechildren's chance for stability and may lead to a firm plan. Aspeople with HIV are living longer, planning may not seem as urgent, butthe process of thinking to the future and addressing family issues has atherapeutic effect that can contribute to family stability. Original manuscript received November 1, 2002 Final revision received March 22, 2004 Accepted April 27, 2004 REFERENCES Axelrod, J., Myers, H. F., Durvasula, R. S., Wyatt, G. E., &Cheng, M. (1999). The impact of relationship violence, HIV, andethnicity on adjustment in women. Cultural Diversity and Ethnic MinorityPsychology, 5, 263-275. 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O. Dane & C. Levine (Eds.), AIDS and the neworphans: Coping with death (pp. 43-58). Westport, CT: Auburn House. Simoni, J. M., & Ng, M.T. (2000). Trauma, coping, anddepression among women with HIV/AIDS in New York City New York City:see New York, city. New York CityCity (pop., 2000: 8,008,278), southeastern New York, at the mouth of the Hudson River. The largest city in the U.S. . AIDS Care, 12,567-580. Tompkins, T. L., Henker, B., Whalen, C. K., Axelrod, J., &Comer, L. K. (1999). Motherhood in the context of HIV infection: Readingbetween the numbers. Cultural Diversity and Ethnic Minority Psychology,5, 197-208. Sally Mason, PhD, is associate professor, Institute for JuvenileResearch, University of Illinois at Chicago This article is about the University of Illinois at Chicago. For other uses, see University of Illinois at Chicago (disambiguation).UIC participates in NCAA Division I Horizon League competition as the UIC Flames in several sports, most notably Basketball. , 1747 West Roosevelt, Room155 (M/C M/C Machine (mechanical engineering)M/C MotorcycleM/C MiscarriageM/C Multiple ChoiceM/C Maitre de Cabine 747), Chicago, IL 60608; e-mail: smason@ psych.uic.edu. Theauthor thanks Deborah Vazquez, Elizabeth Monk, Linda Coon coon:see raccoon. , and theFamily Options staff. Funding for the Family Options project is providedby the Abandoned Infants Assistance Act.