• • • • • • • • • Project Milagro (90CB0134) • Abandoned Infants Assistance • Final Report • • Grant Period: • October 1, 2004 . September 30, 2008 • Submitted to • U.S. Department ofHealth and Human Services • Administration for Children and Families, • Children~ Bureau • By • Lourdes Carranza, M.S., Project Manager • Martha Cristo, PhD., Evaluator • December 2008 • • o alOd • Blenvenl OS • • Acknowledgments Contents • We appreciate the longstanding support and Executive Summary encouragement from Pat Campiglia, AlA Project Officer • Introduction during the past 17 years. We are thankful for her interest • in our work and in Latino families living in the East Los MAJOR ACTIVITIES AND ACCOMPLISHMENTS • Angeles community. Further, services offered by Project DURING THIS PERIOD • Milagro would not have been possible without the grant support from the Administration for Children and Families Program Model • and Children's Bureau. We also extend appreciation to Approach: Cultural Theoretical Framework • the National Abandoned Infants Assistance Resource Family Systems • Center for providing numerous resources during the past Home-based Comprehensive Madel decade and for their understanding of the challenges Long Term and Intense Services • faced by Latinas and their children. • Project Milogro Families Characteristics ofFamilies Served • We further thank the Project Milagro staff for dedicating tireless hours in working with families and their efforts to Recruitment Strategies • support children impacted by substance abuse and HIVI Retention • AIDS. Families Living with Substance Abuse Families Living with HIV/AIDS • In final. we dedicate this report to the Latinas and their Vulnerable Children Living with HIV/AIDS • families who are living and struggling with substance and Substance Abuse Parents • abuse, HIV or AIDS. We express our deepest gratitude for Permanency Planning their participation in this program and for sharing their • stories. Evaluation • Discussion • ...... Lessons Learned • References • APPENDICES • Appendix A Improving Child Well-Being in Latina-Headed Families Faced with Substance Abuse and • HIV/AIDS: Moving Theory into Practice • with Outcomes • Appendix B Thank You Letters from AlA Participants • Appendix C Praject Milagro Trainings and Presentations Appendix 0 Project Milagro Replication Manual • • • • Bienvenidos 316 West 2nd Street • 8th Floor • Los Angeles CA 90012 • 213 7855906 • www.bienvenidos.org • • • • Executive Summary Under the Abandoned Infants Assistance Program, Bienvenidos 1 • implemented an innovated home-based model to prevent • Bienvenidos Children's Center is a private nonprofit the abandonment ofchildren and secure their safety by organization located in Los Angeles, California and has provided meeting the multiple needs offamilies impacted by substance • services to families in the East Los Angeles and Southeast abuse and/or HIV/AIDS. The amalgamation ofsociocultural, • areas by applying culturally responsive comprehensive socioeconomic and epidemiological factors defined the • models that target children, adolescents, teen mothers and program's framework and the past decade of services to high • parents. The agency's family home-based model funded by risk families. This project successfully provided culturally • the Abandoned Infants Assistance Program was implemented specific services and interventions aimed at mediating the in 1992. During the years, the AlA Project Milagro model detrimental effects of substance abuse and/or HIVIAIDS • has evolved from serving Latinas and children to providing experienced by Latina women and their children. The multi- • substance abuse outpatient treatment through establishing level service tracks involved family assessment and family • the Institute for Women's Health (funded by SAMSHA). Child support, case management and advocacy, child assessment • focused interventions and family support models provided the and parenting, health education and medical access, child • AlA program to target Latinas and children impacted by HIVI reunification and permanency planning, and alcohol/drug and AIDS and substance abuse. Bienvenidos developed alliances mental health counseling. The efficacy ofa multidisciplinary • and collaborations with over 25 local organizations focused bilingual/bicultural service team comprised of a case manager, • on HIVIAIDS services and has been recognized for providing parent educator, drug counselor, family support worker, health • culturally sensitive services to Latinas living with HIV/AIDS. The educator, group facilitators, and clinicians proved critical in • program's outcomes provided a framework for working with HIV assessing and meeting the economic, social, cultural, legal, • families by delineating the differing and multitude of problems health, and psychological needs offamilies. The program • impacting these families. AlA Project Milagro Latinas impacted model was expanded to Latinas from Mexico, Central and by substance abuse were more acculturated, more likely to South America, immigrant women and their partners, primary • speak and read English, had generational substance abuse and caregivers and extended family members. • the majority were single parents. These women were more • likely second and third generation Mexican American, faced • with similar challenges as other women ofcolor in this country. • These women were poorly educated, lacked job skills and have Introduction dealt with the limited job training resources often found in • low-income communities. In addition, they represented second Bienvenidos Children's Center implemented the Abandoned Infants Assistance Program from 1992 to 2008. During the • or third generation alcohol/drug using families with histories • ofchild abuse and domestic violence. Many were challenged past 16 years, the AlA Project Milagro has chronicled relevant • with the limited substance abuse programs in the East Los factors that improve the safety, permanency and well being of Angeles area and that served women with children. In contrast, children living with Latina mothers, primarily of Mexican origin, • whom are coping with HIVIAIDS or Substance Abuse. Equally women affected by HIV/AIDS were minimally acculturated to important, historical pathways to understanding the social • the United States and many were recent immigrants. They were and familial dynamics that impede positive outcomes among • monolingual Spanish-speaking, and adhered to Latino cultural latinas have been clearly delineated by this longstanding AlA • practices and beliefs. Women affected by HIV/AIDS were less program. The gaps in knowledge for providing program polices • educated and as new comers to this country, they experienced stress associated with acculturation, discrimination and poverty, and service designs that target the complexities of needs for • latinas and their children have led to an array of innovative and they were often isolated from their extended families that • AlA programs that are perceptible in the interiors of poor and remained in their country oforigin. HIVIAIDS women tended to • be married, and ascribed to traditional sex-roles in the Latino disenfranchised communities. In general, AlA programs have collectively worked towards providing services to the "least of • culture. Project Milagro has actively provided prevention • strategies to reduce the risk of HIV exposure among Latinas, these"communities, families and children. Thus, these programs particularly since the majority of Project Milagro HIV women continue to contribute to improving our knowledge base by • developing strategies to meet the unique needs of families contacted the virus through heterosexual exposure. • coping with HIV/AIDS and Substance Abuse. • • 2 Project Milagro provided comprehensive services to Mexican Program Model • and Mexican American mothers and their children residing in • the East and Southeast Los Angeles area who were identified Cultural Theoretical Framework • as high-risk for abandoning their infants and young children Project Milagro over the course offour years implemented a due to HIVIAIDS or chronic substance abuse. The project's • model that was effective in promoting safety, permanence, and target service area has a large concentration of Latinas living • well-being ofchildren impacted by HIVIAIDS and substance with HIV or AIDS and has been identified as a priority group by abuse. Located in Los Angeles, California, Project Milagro • the Los Angeles County HIV Prevention Plan (2008). Multiple concentrated its efforts towards understanding the needs of • co-factors have been attributed to the disparities of HIVIAIDS families and children in the context of their culture. Beyond • among Latinas. More importantly, such co-factors continue to providing linguistically appropriate (Spanish translations) add to the vulnerabilities of Latinas for newly diagnosed HIV • information and education, the program provided services infections, living with AIDS and limited prevention strategies • that were culturally relevant and sensitive to Latinas. for acquiring HIV. The incidence rates in the United States for • Interventions applied by the program staffwere respectful of women living with AIDS and women at risk for HIV infection cultural beliefs and practices (folkloric concepts and healing, • or transmission has led to re-examining emerging patterns celebrations, family hierarchies, and worldviews, etc.). Such • ofthe epidemiological nature of HIVIAIDS (HIV Epidemiology services were instrumental in engaging and retaining Latino • Program, 2008). Overall, Latinas diagnosed with HIV or AIDS families in services that are generally not accessed. Project has not only increased but has exceeded case rates among • Milagro services were guided by respect and integration of women in general. One in seven Latinas are living with HIVI • Latino values: familismo (familalism) -high value and regard AIDS compared to white female counterparts (Los Angeles for the family, view offamily as the primary unit ofsupport • County HIV Prevention Plan, 2008). Although HIV/AIDS among and help; Simpatia -a social script emphasizing a pleasant • African American women exceed rates for both Latina and demeanor focused on red ucing conflict and promoting • white women, the critical factors associated with reducing HIV agreement; and Personalismo - a personal attitude valuing infections and providing preventive services have not been • warmth, friendliness, and respect towards others especially fully addressed when working with Latinas. Project Milagro has • towards family and those who hold positions of authority provided services aimed at improving the mental well-being of in a community (Santiago-Rivera & Azara, 2003). These • high-risk Latinas and their children. The model applied to these cultural Latino characteristics were instrumental to program • families has eme'rged from acquiring knowledge of HIV/AIDS implementation and service delivery. • trends and working with Latinas and children. The project's • comprehensive model developed effective strategies to address Family Systems and Humanistic Approach co-factors relevant to HIVIAIDS within a cultural context. • Additionally, service mechanisms that successfully resulted in The program's model incorporated the core elements of AlA • improving positive outcomes were supported by the project's philosophies into the program design and service delivery. • evaluation findings. Embedded in Alf':s framework, Project Milagro's services focused • on the concurrent needs of parents and children. The program The project's Substance Abuse women were primarily second • implemented a family systems approach in which families and third generation Mexican Americans with chronic were encouraged to define their strengths and needs in the • alcohol and drug addictions. Most ofthe project's Latinas context oftheir total environment. Additionally, the strength in • were identified as "neglectful" parents, actively engaged in the provider client relationship lied in the ability ofthe staff to child welfare systems and had limited parenting knowledge. • develop long-term, trusting, non-judgmental relationships with Project Milagro developed a model that targeted substance • their families. Families served by the program were empowered abusers with histories of prenatal drug/alcohol use; domestic • and respected as well as supported in their decision-making violence victims; drug exposed infants; victims of child abuse; • practices (Templeton-McMann, Currier-Ezepchick, 80uchard, sexual trauma; depression; and chronic relapses. Although the Adnopoz, Pack & Abruzzino, 2003). Services were family centered • project's Latinas were faced with these challenges, the program and concentrated on strengthening family connections to their • model was effective in reducing risks for child abuse and child communities. The program's infrastructure and flow ofservices abandonment. Further, strategies aimed at improving mental • were aligned to the general family tenets implemented by other health, coping skills and social support were significantly • AlA programs across the country. Team based interventions were effective for this group. • • • • focused on stabilizing families through increased support and closely monitor risks, and changes in the home environment. 3 • case management. Immediate interventions were offered to families faced with a crisis. The supportive multidisciplinary model addressed • Project Milagro further delivered services that were family parenting concerns, psychosocial stressors, and mental health centered, client driven and embedded in a humanistic • issues. interventions concentrating on preventing outof approach to serving families. Based on Abraham Maslow's • home placement, strengthening reunification, and supporting theory of hierarchy needs, the program operated with a post permanency plans were offered. Home observations of • fundamental belief that the basic needs offood, shelter and environment and family dynamics assisted in assessment and • safety must be met first and be integral to the program's case service planning goals. • approach. In par, case plans and interventions were designed • to provide basic concrete services and resources to meet • such needs in order for families to evolve and achieve other Long Term andIntense Services goals. Services were parallel to the National Abandoned Project MilagrD's model was shaped after years ofstudying • Infants Resource Center's (2007) AlA principles: "provided the needs of families impacted by HIVIAiDS and substance • developmentally informed parental guidance; individual and abuse. Early lessons learned highlighted the importance of • family counseling; taught tangible skills; assisted families in delivering services that were not only in the home, but long • developing linkages to community resources through direct term and with high frequency. Families enrolled in the program • advocacy and modeling systems navigation"(p. 5). Additionally, received 12 months ofservices and in some cases families • Project Milagro continued to provide information and received services up to 18 months. Families received weekly • education in a culturally relevant manner. home visits by either the Family Support Worker (for HA group) or Substance Abuse counselor (for the SA group) for the first • nine months of services. Visits were reduced to twice a month if Comprehensive Home- Based Services • appropriate for the remaining 3 months of services. The intense In order to improve child well-being, a comprehensive families • approach allowed for the staff to work closely with families approach was utilized. The program was driven and operated and identify the issues that were not disclosed. Frequent visits • under the principle that in effort to improve child well-being, in the families' homes also enhanced trust building between • the needs ofthe family as a unit had to be addressed and the provider and client. Additionally, flexibility on length of met either by the program or through community based • visits allowed opportunity for the clients to open up and share support. Over the years, the program learned that family • personal concerns. Staff reported that on an average, visits emergent needs or crisis must be met and resolved. Un • lasted from two to four hours depending on the focus of the addressed family issues tended to persist, creating family visit. For example, the duration of a visit concentrating on case • stress and subsequently affecting children. Family and parental management needs was an hour, however, visits addressing • stabilization were key indicators to increasing child and family crisis on an average lasted 4 hours. Furthermore, in cases where • well-being. safety planning was critical, staff members would take up to . • The uniqueness and strength ofthe program was in the ability the whole day to reduce the risks of detainment and secure • to assess and identify the needs in the families' natural home family stability for the child andlor parent. • environment. The home-based approach implemented by the • program, allowed the staff to work closely with the parents ...... • and children as well as others in the home. The staff's ability to develop individual relationships with the parents was essential Project Milagro Families • to engaging families in services and conducting thorough • assessments. Home-based sessions focused on promoting Project Milagro served Latinas and their families who were • positive parenting strategies and enhancing parents' identified "at risk" ofabandoning their young children due to relationships with their children. The providers focused on • substance abuse and/or HIVIAIDS. Families with at least one supporting; affirming; and encouraging parent-chiid bonding • child 0-6 years of age were eligible for services. The program and attachment. • targeted Latino families residing in Greater East Los Angeles • Furthermore, offering services in the home allowed the and East Hollywood areas. The program developed two service • staff accessibility to everyone in the family and the ability to tracks to assist in identifying and reducing specific factors • • _4_'placing infants and children "at risk" ofabandonment, abuse Project Milagro's supportive model was effective in reducing • or neglect. A totai of 163 families impacted by substance child abandonment and abuse by targeting culturally sensitive • abuse and HIVIAIDS were enrolled during the grant period. services to high-risk families. For many families, chronic risk • The program identified multiple risks among these families factors were unchanged. The project learned that situations and their children. Families headed by single parents (mostly • such as generational substance abuse and trauma were mothers), two parent households, as well as single fathers and recurrent. Environmental stressors such as poverty, and limited • relative caregivers were enrolled. resources to the project's indigent families were lingering and at • times, beyond the scope ofthe project's services. • Characteristics ofFamilies Served • Outreach and RecruitmentStrategies • During the four years offunding, Project Milagro enrolled and served a total of 163 families consisting of210 adult Due to the social stigmas experienced by families, the program • participants and 475 children (lS9 index children and 4 staff was creative in their outreach efforts. Outreach efforts • unborn). Ofthe 163 families enrolled, 44% were affected by HIVI were conducted at HIV shelters, professional conferences • AIDS and 52% were affected by substance abuse. Demographic targeting families living with HIV as well as commemoration • characteristics for the project's families indicated that S1% of events organized by the Twelve Step community for individuals in recovery. Furthermore, the program stationed staff at • women from the substance abuse (SA) group reported being single mothers in comparison to 37% ofwomen from HIVIAIDS substance abuse centers, local hospitais and clinics where • (HA) group. Families from both groups were primarily Mexican women routinely tested for HiV. In addition, the program • and Mexican American. Among the HIVIAIDS families, 83% were distributed flyers at Children's Dependency Court; local • foreign born and 61 % were monolingual Spanish-speakers. In Department of Public Social Services as well as other agencies • contrast, 94% of the families from the Substance Abuse group that serve families affected by substance abuse.and HIVIAIDS. The staff also participated in community resource fairs and • were Mexican-American with more than two thirds born in United States. Substance Abuse mothers were mostly English events. The program developed a linguistically appropriate • speakers (88%) with reportedly 46% as bilingual and only 12% and culturally sensitive brochure (see Appendices) that was • were Spanish-speaking. Social conditions, environmental factors instrumental in engaging eligible participants. • and life experiences placed these women at high risk for child A coordinated, seamless referral process was developed • abuse and abandonment. Overall, Latinas were impacted by to ensure that families received prompt responses after • past childhood victimization and adult domestic abuse. The requesting services or upon referral to the program. Following • program noted that at least halfofthe families experienced the referral, families were initially screened by the Project mental health distress and limited parenting skills. Furthermore, • Coordinator to determine program eligibility. The Coordinator program entry assessments indicated that 90% of families conducted initial intakes and assessments in the clients'home • were living in poverty, residing in unstable living conditions within 2-3 days after receiving referrals. The intake assessment • and lacked stable family support. Consistent with the program focused on: Introduction ofservices; assessment ofthe family's • model, case management and providing concrete resources needs and risks as well as clients' level of motivation to receive • were primary intervention areas for families. comprehensive home-based support. Program forms such as • Children enrolled in the program were 3.6 years average age Intake, Confidentiality and Consent to Release Information, • although younger children resided with Substance Abuse and Service Agreement forms were completed during the initial visit. The initial visit was crucial in establishing trust and • mothers (2.7 years) compared to HIV/AIDS children whom were 4.5 years. Children from both groups were found at high risk of extending genuine non-threatening support. Additionally, • abandonment and abuse at intake due to: 71 % lacked stable families received information highlighting length ofservices, • family compositions; 41 % were exposed to domestic violence; level of intensity, confidentiality guidelines, and collaborative • and approximately 38% of the children had experienced abuse approaches with other key providers (i.e., DCFS, courts, Drug • or neglect prior to intake. Additionally, the evaluation findings Treatment, mental health, schools). Following the initial visit, the Project Coordinator assigned the case to either the • indicated that at least 17% ofthese children were identified as having behavioral problems and 13% had a chronic health Substance Abuse Team or the HIVTeam. Families received a • problem (including 8 children living with HIVIAIDS). totai of 12 months of comprehensive home-based services. • • • • Family Retention was often overwhelming. It is not surprising that many ofthese 5 women had a history of poor drug treatment outcomes. • The program model focused on actively engaging families • at the point ofentry. Bilingual and bicultural staff enhanced This group also engaged in unhealthy relationships. Women • engagement among Latinas, particularly low accuiturated were in relationships with men who were substance abusers • Mexican immigrant women living with HIVIAIDS. Families themselves. Intake information indicated that partners welcomed strategies that included identifying with their were often involved with multiple systems as well. Such as • criminal court, probation and parole. Operating under a family country of origin or displaying knowledge of regional • differences. Respecting varying acculturation levels and systems approach, Project Milagro focused efforts towards • heterogeneity of Latinos was critical to engaging and retaining engaging the partners in services. The partners were often • families in the program. The project's overall yearly retention unwilling to engage in services at intake. Substance abuse • rate was 79% for active cases; 74% offamilies remained in the counselors assigned to these families were patient with the program for 6 months or more; 26% offamilies completed the 9 process and appropriately planned inclusion of partners in • home visits. Eventually, the partners responded to services months of intensive home-based services; and 20% offamilies • were retained for more than 12 months. For this latter group, and joined family sessions as well as couples counseling. A • services ranged from 13 to 26 months. In these cases (7% for 20 total of 22 partners were actively engaged in services. As a • months or more), relative caregivers were generally included result. engaging partners had positive effects in reducing • in family case plans. The attrition rate was 11.6% and included the prevalence of unsafe home environments. Interventions • families enrolled for less than 3 months. prioritized ensuring safety of the children, while developing a relationship built on trust with both of the parents. The • ...... program's non-threatening approach to engaging substance • abusing women as well as their partners was instrumental in retaining these families in the program. • Families Impacted • by Substance Abuse • Child Welfare Involvement • Scope ofAddiction Women from the substance abuse group were often identified • Project Milagro responded to the needs ofsubstance abusing as "abusive" and court ordered to comply with various • women. In-depth and thorough intakes revealed that women mandates in order to reunify and/or to maintain custody • from the substance abuse group were no strangers to addiction, oftheir children. Similar to other AlA Programs, Substance violence and trauma. The majority ofthe women reported Abuse Latinas had a high incidence of DCFS involvement, • current or past. Unfortunately, unresolved childhood traumas generational histories ofaddiction, and violence. In several cases, • the women reported being introduced to drugs and alcohol by and social stigma associated with their drug use intensified • their family members. Childhood abuse in the form ofsexual and feelings of guilt. shame, and inadequacy. Project Milagro • physical assault was often disclosed. Not surprisingly, the women counselors responded to these issues as part oftheir strategies • reported abusing drugs at a very young age. Additionally, more to strengthening recovery and sobriety among these women. than half were long-term poly drug abusers. Methamphetamine Additionally, the program staff developed collaborative • relationships with DCFS (Child Protection) workers with the aim and alcohol were the most commonly used drugs. Women also • of increasing reunification offamilies. Others strategies applied reported having numerous encounters with law enforcement • often leading to arrest for "drug possessions:' Substance abusing to women with DCFS involvement included; court advocacy, • women were repeatedly entangled with multiple systems. These monitoring ofvisits with children; submission of letters to the • included DCFS (Child Welfare), Criminal and Family Law courts. courts indicating progress and improvement on behalf of the • The women were often faced with legal pressures to comply mother, participation in TPM (Team Decision Meetings) held with DCFS court orders (parenting, counseling), drug treatment at DCFS. Program staff ensured that ongoing communication • between the DCFS worker, family and program counselor was programs and restitution through volunteer community service • work. Compliance with such mandates, coupled with caring for maintained. Overall, parents received assistance in developing • young children while attempting to seek or maintain employment healthy coping mechanisms and supports as they faced •• multiple demands across systems. • • _6_ Responding to Social andSystemic Conditions ranging from Bto 10 years limited prospective opportunities • for employment. Only 9% of women participated in formal • Families affected by substance abuse were often experiencing vocational or educational activities. Interventions focusing on multiple challenges and conditions that pressed down • improving self sufficiency skills were aimed at increasing job on their lives. Culminated by poor economic and social skills, obtaining high school diplomas, enrolling in vocational • conditions, women from the substance abuse group were often training programs or attending community college courses • disenfranchised. Lack ofstable housing, and the realities of (within the community services department). Referrals to job • living in disapproportionately drug exposed communities were development skill training was provided to 20% of mothers. present. Augmenting their environmental stress was the fact • Ofthese referrals, 97% ofwomen obtained employment in that the women had relativeiy minimai support and assistance • semi-skill positions. Referrals to educational development in raising their children. Generational substance abuse, and • and achievement was provided to 32% of mothers with a lost families ties were frequently reported. The Child Welfare 92% active participation rate in GED courses, adult high • System (DCFS) and Dependency Court viewed these women school and community college non-credit courses. Program • as unfit and unable to protect and care for their children. interventions that addressed increased skill sets in education • Women involved in the Child Welfare System (DCFS) were faced and job development were implemented through careful with additional pressures. Lack of sensitivity as well as limited • screening, sensitivity to educational needs, identifying career knowledge of addiction and sobriety process by the Child • interests and obtaining any work history. The majority of Welfare System increased the challenges faced by substance women lacked work experience or job skills at program entry. • abusing women. Additionally, the Adoption and Safe Families Women were guided through the project's three-step referral • Act (ASFA) timelines (requiring permanency planning for any process. Referrals included providing basic information (e.g. • child who has been in out-of-home care for 15 of the previous school address or job training site) followed by assisting in 22 months) do not correlate with the realities of recovery and • completing enrollment forms or transporting to interviews and treatment (Nationai Abandoned Infants Assistance Resource • lastly, ongoing support to sustain participation or employment, Center, 2007). Psychosocial distress was often an ongoing such as identifying child care providers; seeking information • threat to accomplished sobriety. for public transportation; requesting donations for uniforms or • The substance abuse counselors concurrently served as book stipends. Overall, self-sufficiency levels were increased by • advocates for their clients as well as educators to social 20% among single parent Latinas during program involvement. • workers that were uninformed of addiction and the recovery • process. The program found that when women were Prpmoting Positive Mental Health • empowered and treated with dignity and respect they were Intake demographics revealed that women from the substance more receptive to services. Furthermore, women were more • abuse group had experienced childhood trauma and adult motivated to stay sober when they had their children under victimization. Participants frequently reported high rates • their care or had opportunities to reunify. Strategies focused of depressive symptoms or other forms of mental health • on supporting women towards retaining children under disorders. Years of experience serving substance-abusing • their care as well as reunification was offered. Engaging and women led to the inclusion of a mental health component • retaining substance abusing women in services was not only to the service design. In collaboration with the substance instrumental in promoting recovery efforts, but in increasing • abuse counselor, a family therapist addressed the mental child reunifications and chiid well-being. Consequently, all • health issues. Individual sessions addressed unresolved efforts were exhausted towards reducing risk factors before childhood trauma, grief and loss. Additionally, the therapist • recommendations for out-of- home care were made. was instrumental in facilitating reunification by strengthening • The program also concentrated on improving self-sufficiency attachments and bonds between mothers and their children. • and empowered women to become independent. Single Mothers openly dealt with feelings of parent inadequacy, • head of households and unemployment described more shame and guilt. Furthermore, two parent headed households • than 70% ofwomen in this project. Income stemmed from received counseling focused on couple's issues such as re state subsidies such as Temporary Aid to Needy Families building trust, respect, co-parenting, and communication. • (TANF), chiid support, food stamps and community donations • The therapist was also instrumental in assessing and treating for at least 55% offamilies. Additionally, educational levels coeXisting mental health problems. Mental health services • • • • provided to substance abusing parents women included: immigration factors. HIV families dealt with cultural differences, 7 • assessment and counseling for physical and sexual abuse and low acculturation, language barriers and the stigma of HIV • for the possibility of post-traumatic stress disorder; counseling and AIDS in latino communities. Poverty, substandard liVing and training in self-esteem and image enhancement; training conditions and limited financial resources among these • in interpersonal, self-sufficiency and independent living skills; women mandated their attention to survival needs, such • and relationship development between clients and their as locating emergency housing, food, and clothing for their • partners. Women also accessed mental health services through children. Many ofthe project's families resided in shelters and • drug treatment centers. temporary housing. The high incidence rates for non-AIDS • HIVand heterosexual HIV exposure for latinas necessitated Enhancing Social Support program strategies that addressed co-factors within a cultural • context. Co-factors included low acculturation, resistance to • Similar to their counterparts, women from the substance abuse HIV testing or lack of protective sexual behaviors, misperceived • group were liVing in isola"tion. Fear of relapse as well as lack understanding ofHIV and AIDS, intimidation due to immigrant • of healthy support systems led many women to isolate from status and social isolation. others. The substance abuse counselors assessed support • networks and in most cases found that they (providers) were Chronic Instability in Environmental Conditions • the only healthy role models and support that that women • had. Efforts concentrated on building the women's level of Some ofthe greatest challenges affecting HIViAIDS impacted • confidence, trust in themseives, as well as their environment. families were lack ofstability and environmental stressors. • The women were equipped with relapse prevention skills HIV families lived in substandard housing, shared housing such as the ability to identify people, places, and things that environments and temporary living arrangements. The families • triggered risks for relapse. The women were encouraged to were often referred to the program for immediate support • attend 12 step help groups as well as faith based supportive towards stabilizing housing. Project Milagro as well as other • services. Substance abuse counselors also linked women community programs serving impoverished communities • to out patient drug treatment centers for more intense have observed a decline in housing assistance programs for • services and support. The women often reported that their low-income families. Therefore, the program experienced • established connections to recovery networks and groups challenges in assisting families with obtaining suitable and were instrumental in building their sense of belonging and permanent housing. Families were frequently placed in hotels, • acceptance. Furthermore, associations with other parenting and emergency shelters as temporary solutions to persistent • and recovering women served as sources ofsupport and situations. Although it was beyond the scope ofthe program • inspiration. Women learned from others who shared their to offer housing, the program staff worked assiduously with • similar experiences new and successful parenting techniques. families to access available housing resources and entitlements. • These friendships became reliable sources ofsupport. In The scarce funding for low income housing, overcrowded addition to enhancing the mothers support networks, the staff communities and demanding rental conditions limited the • provided resources focused on enriching the parent and child program's ability to maximize housing stability for families. • relationships. Children were also linked to specialized services Nonetheless, families were provided with safe housing • such as behavior modification, and counseling. The program although temporary for their children. found that reducing problematic behaviors in children directly • As with the Substance Abuse families, HIV women had few reduced the stress and anxiety ofthe mothers. • housing options and therefore, remained in overcrowded • conditions. In several cases, they lived with individuals who • ...... were unaware oftheir HIV status. This posed additional • challenges for HIV families and the program's staff. The constant • Families Impacted by HIV/AIDS fear of HIV disclosure and impending negative eviction consequences heightened latinas'feelings of alienation • Families living with HIV faced a multitude of challenges that and isolation. In these situations, in-home services were • often preceded the onset oftheir non-AIDS HIV condition. hindered due to confidentiality and privacy issues. Visits with • These challenges were multi-layered and interrelated these families were prOVided in local parks, schools or at the • with socia-cultural, socioeconomic, racial disparities and Bienvenidos agency. • • _8_'Enhancing Social Support cultural beliefs and that ultimately were sensitive to the needs • and Utilization ofCommunity Resources of Latino families, • The project learned that families affected by HIVIAIDS were • Improving Mental Health Conditions confronted with exceedingly needs, Complicating this was • the prevalence ofsystemic and socio-cultural barriers to Project Milagro served HIV families with untreated and under • accessing resources, Families from the HIVIAIDS group were diagnosed mental health conditions, Among these women, • often identified as isolated, unaware of community resources, 52% experienced mental health problems that included and underserved, Unmet basic needs and lack of social support • depression and psychological distress, Compounding mental were commonly reported, Families appeared overwhelmed well being, were the realities of environmental and social • and fragmented as they dealt with their inability to meet the stressors such as poverty, isolation, and marginalization due to • basic needs oftheir children due to extreme levels of poverty, immigrant status and their HIV, Parents were also faced with • Poor mental health and deteriorating health conditions pending permanency planning issues, HIV disclosure, and guilt • prevented parents from obtaining and sustaining employment, over their past behaviors, Not surprisingly, the participants with Additionally, families affected by HIVIAIDS were primarily low • more stressors reported more significant psychological distress acculturated immigrants living in isolation due to xenophobic to their providers. • immigrant sentiments that have intensified during the past • In few cases, neurological conditions were identified, decade, Extended family support was often not available to • Conditions such as AIDS related meningitis, TB of the brain, and • these families due to migration, Reliance on neighbors and Toxoplasmosis caused permanent psychiatric and cognitive • friendships was frequently noted as the only form of support Family Support Workers assigned to these families developed disorders. These disorders resulted in memory loss, motor '. impairments, and delays, Project Milagro incorporated services • Case Plans to address these needs and expand social support networks, that addressed these issues, Interventions for ttiese participants • concentrated on ensuring that clients were able to protect • The program learned that the conimon response to reducing and care for themselves and their children, Intensive and social isolation by social service providers was to "increase comprehensive assessments and strategies were provided in • linkages to agencies:'The program found that this often the home environments, The program ensured that parents • placed additional demands on families as accessing services accessed medical and mental health services. The combined • led to increased requirements from social service agencies. approach required that parents were accompanied to medical • Furthermore, a high demand for HIVIAIDS resources has led and mental health appointments, Overall, the mental health • to long waiting list for appointments followed by pages of therapist was instrumental in identifying chronic conditions intakes requiring disclosure ofsensitive information, Scarcity of and factors that were beyond the scope of the program. In • resources has led many organizations to restrict the provision these cases, the participants were referred to community • of basic needs to only the families that access some other type mental health services. Mental health services involving • of support (I.e" parenting group), This in turn discouraged couples counseling was also offered to two parent households, • already strained participants from accessing supports. The Unique issues specific to couples living with HIV or AIDS • program staff was extremely successful in advocating for the were addressed. Such issues were often related to: betrayal participants and in increasing access and utilization of services and re-building trust; sex negotiation and tradition sex role • in the community. Advocacy consisted ofensuring that the scripts. In a few cases, the couple's therapy addressed issues • families were not stretched amongst outside providers and that of past domestic violence, In general, the therapist was more • priority issues were addressed. Project Milagro staff frequently successful with engaging women than male partners. The • became the stable element and trusted source in the lives of program recognized the impact oftraditional Latino beliefs • the families. Consequently, the providers often played a lead among men such as "family matters are to be dealt with role in communicating information about client's status and privately," Partners reported negative past encounters with • coordinating resources with other team members. public health and community proViders, Feelings ofgender and •
Project Milagro staff responded to these needs by developing cultural insensitivity were often reported, Project Milagro staff • partnerships and collaborations with community based responded by implementing partner engagement strategies • agencies that served families impacted by HIVIAIDS. Families that focused on meeting their needs, For example, staff were • were referred to agencies that shared the programs respect of flexible to meet with partners during evening hours; visited • • • • partners at their employment sites; male providers were ability to parent their chiidren.ln addition to responding to 9 • assigned to work with partners; and direct services aimed at priority areas such as ensuring the provision of basic needs of • job development and job referrals were offered. children, direct services focused on re-parenting the parent. Furthermore, staff focused on the importance of re-training The program's model addressed the holistic needs offamilies • children in core areas such as respect. communication, trust that included mental health conditions. During the four years • boundaries, and rules. Parents themselves had to re-adjust offunding, 57% ofthe adult participants and 15% ofthe their old ways of parenting their children and adapt to new and • children accessed mental health services. Readily accessible, more effective ways. Nevertheless, in order for the parents to be • culturally sensitive services were instrumental in reducing receptive of the new approaches, the staff had to demonstrate • depressive symptoms among HIVIAID5 Latinas. It wasn't respect of their cultural practices and beliefs. Parents were uncommon in the early phases of therapeutic relationships • encouraged and motivated to take pride and ownership of for clients to express feeling less depressed, less isolated and • their families as well as their opportunity to shape the lives and having "someone to talk to:' • future oftheir children. Parents responded favorably to these • approaches and were willing to receive the new information...... • Child Development education was provided to parents • Children Impacted by during individualized home visits through the distribution of brochures, books, and videos. Informational materials were • Substance Abuse and HIVIAIDS • provided in easy to read and linguistically relevant formats. Individualized sessions focused on topics such as safety • At the core ofserving high-risk families was the importance of precautions, proper medication dispensing, and importance • identifying and addressing the needs ofchildren. During the ofWell-Child visits. Mothers and caregivers caring for prenatal • four years, the program served a total of475 minor children, exposed infants received specialized information and • 159 ofthese chiidren were the primary index child and educational sessions concentrating on pediatric HIVlAID5. included four unborn children. Family 5upportWorkers and For school aged children, parents received school advocacy • substance abuse counselors applied strategies that targeted in the forms of support during IEP meetings. Overall, parents • risk factors for child abuse, neglect and abandonment. Risk were encouraged to take an active role in understanding the • factors ranging from unsafe home environments to poor development of their children. • parenting were identified and addressed. Poverty, lack of stable The program learned that the risk for child abandonment home environments as well as fragile health and mental health • and abuse was directly reduced as a result of increased of parents were commonly reported as factors contributing parental knowledge oftheir child's medical or developmental • to the "risk" of child abandonment. The program staff serving milestones. Additionally, increased access to specialized • both groups offamilies (substance and HIV impacted) was services for children was instrumental in promoting child- • instrumental in reducing the risk factors and increasing the well being. The providers sought the support ofother • parents' capacities to protect and care for their children. services both within the organization and externally to aid in • addressing areas that were outside the scope ofthe program • Promoting Safety andPermanency (i.e., health and child development delays). Children served • At the core of Project Milagro's services was promoting safety by the program were linked to regional centers, specialized • and retaining children in their natural home environments. medical care, childcare, pediatric services and school readiness • Direct services such as child proofing homes, while promoting services. Mental health conditions such as included behaviorall • the parents ability to care for their children, were provided. emotional probiems among children represented 17% ofthe • Non-traditional strategies such as helping the mothers' clean linkages made to child focused mental health resources. their homes, and taking a trip to the store with the parent Furthermore, the program ensured that all children had • to purchase locks for medicine cabinets and hazardous access to medical care including the 14% that were identified • chemicals were provided. In addition to concentrating on child as having medical conditions (8 HIV/AIDS; 1 fetal alcohol • proofing homes, the mothers received fundamental basics on syndrome; and 7% had upper respiratory conditions). Secured • re-parenting their children. Mothers often reported feeling home environments along with enhanced access to specialized • inadequate in their role as mothers and often questioned their care not only increased the retention of children in the care • • ~ oftheir biological parents, but also facilitated the successful 6550). Effective January 1994, the California Legislature • reunification of a total of85 children. The program learned expanded the traditional concept ofjoint guardianship to allow that children from the substance abuse group were at a higher custodial parents who are terminally ill to name one or more • risk ofout of home care and at least 50% ofthe children persons to act with them as joint guardians (Probate Code 2105 • were previously under the supervision or care of DCF5 (Child (f)). This was a suitable option for families for it allowed the • Welfare). Strategies focusing on meeting court orders as weli custodial parent to share with the joint guardian legal rights • as ensuring that the home environments were suitable for and responsibilities for the child. • children were provided. Staff assisted staff in ensuring home Furthermore, through the years ofexploring the area of environments were safe as and had basic staples such as food, permanency planning, the project learned that permanency • and furniture. could a/so be achieved through informal means. Due to the • ...... diverse levels in permanency plans offamilies, the program • invested in developing and offering alternative ways to • securing the future of children affected by HIVIAIDS. Therefore, five Stage in consideration of the different situations and varying • Permanency Planning Model constraints experienced by the families, informal approaches • to permanency planning were introduced. California's • Caregiver Authorization Affidavit (Cal. Fam. Code 6550) as Throughout the four years of service delivery, Project Milagro • well as Testamentary Wills was alternative methods used responded to the permanency planning needs of parents living • with families that were reluctant to engage in legal options with HIVIAIDS. The program designed a five stage culturally to securing alternative caregivers for their children. Several • responsive permanency planning model that was sensitive families reported that these alternative approaches were less • to the needs offamilies. The permanency planning model threatening and cumbersome. was instrumental in reducing infant abandonment as well • as promoting safety. The model served both as a conceptual • framework and practical tool in educating families about future Barriers and Challenges to Permanency Planning • care and custody planning. Additionally, the five stage model The program learned that although many parents living • allowed for tracking families progress as well as the programs with HIVIAIDS gave thoughtto what wouid happen ifthey • overall success in achieving permanency with children. became incapacitated or died, many refused to take steps to • Although the goal ofthe program was that every HIV impacted formalize arrangements. Cultural and religious beliefs were • family would finalize a plan, the model was implemented with ofthe most prominent barriers to permanency planning that • a high consideration ofthe families' needs and their willingness were encountered. Formal means of permanency planning were identified as foreign concepts to Latinos. Informal means • to address permanency planning. The program was responsive to the fact that the families faced multiple stressors and often of permanency planning were found to be more frequent as • did not want to engage in permanency planning. Due to the cultural and religious beliefs and practices such as baptism • nature and focus of permanency planning process, it was and "padrinos" (godparents) were automatically conSidered • presented as a choice for parents and not a requirement to the alternative or next in line to care for a child. Literature has • receive program services. Consequently, in efforts to provide found that Latinos with lower levels of acculturation, (i.e., those who speak only Spanish) were less likely to disclose their HIVI • individualized permanency planning each family was assessed as to their interest and willingness to learn about permanency AIDS status to significant others and family members (Mason, • planning. All HIV affected families were introduced to the et aI., 1995). Additionally, prevalent religious beliefs such as • Permanency Planning Model which included the following fatalism and the notion that"God's Will" would prevail played a • stages: 1) Assessing the Readiness of the Family; 2) Education key role in the parent's ambivalence towards forma/ means of • on Permanency Planning; 3) Identifying a Future Guardian; 4) permanency planning. • Securing the Plan; and 5) Aftercare services. Furthermore, barriers tied to social conditions such as: isolation; • The two core approaches that were most integrated in the lack of resources; and fear of the legal system also presented • permanency planning process were Joint Guardianship and challenges to establishing permanency plans. Participants from the HIVIAIDS group were mostly Immigrants form Mexico • California's Caregiver Authorization Affidavit (Cal. Fam. Code • • • • and Central America living in the United States in isolation directly asked by the parents if they were willing to care for 11 • from their extended families. Support networks were few, and and assume guardianship of their children in the event that • often consisted of professionals rather than family members. they died. Supervision and group trainings were instrumental Parents were therefore reluctant to disclose their ii1ness for in supporting and guiding staff as they encountered these • they were already faced with few supports. Fear of stigma, situations. An additional challenge was that it could take • feelings of shame and guilt, were notably barriers to disclosing months even years for some families to establish permanency • HIV status an in turn to overall planning for future care of plans. To facilitate and expedite permanency planning process • their children. Uninformed about HIV, the Latino community the project relied on the legal support of Public Counsel • continues to marginalize those with HIV due to its associations Law Center. Public Law Center was a firm that offered free with methods of infection. Additionally, parents often equated permanency planning services to HIV impacted families. • disclosure with "harming their children:' In an attempt to Although the program experienced several challenges to • protect their children and loved ones form painful knowledge, permanency planning, Findings indicated that there was noted parents refused to disclose their HIV status. Therefore, parents • success as a combined 46% of the families reached some form often lived in confinements ofsecrecy and experienced • of permanency pianning (formal or informal). Additionally, increases psychological distress. The program staff ensured that • permanency tracking logs revealed that 57% ofthe families the parents at all times felt a sense ofcontrol oftheir decision were informed of permanency planning options and as a result • to disclose as well the timing and to whom. As such, parents at identified an alternative caregiver. These findings indicate • times veiled or disguised their disclosure by reporting to have that the majority of families proceed in their planning beyond an illness other than HIV such as cancer or rare blood disorders. • Stage 1 Assessing the Readiness. Such findings reinforce the Parents' decisions were respected, yet they were reminded that • programs model and benef that comprehensive supportive although an emotionally charged decision, disclosure would' • services are needed to help all families through their reactions require support and assistance from professionals. They were to the impending death that they face. • encouraged to take advantage of the specialized support • provided by the Project Milagro team. Overall, the program Permanency Planning Survey Outcomes • learned that the disclosure process existed in a continuum, with • parents conveying varying degrees ofinformation to their loves An open-ended questionnaire based on a series of items that • ones. Parents tended to disclose as their illness progressed and obtained information on client readiness and challenges to • often to older children. developing a permanency plan. A total of65 HIV/AIDS families • In a few cases, parents with HIV were also reluctant to engage completed these questionnaires. The program utilized this in permanency planning due to"hopes of immortality:' Parents information to provide feedback to its developing permanency • planning workbook. Clients were asked ifthey have identified a found to be living in stable health were less likely to explore • permanency planning options. Such participants took into caregiver for their children, 71 % responded yes; 59<'/0 indicated • account the highly publicized "idea" that ifthey remained that they have verbally communicated this request directly to • compliant to their medication regimen, they would live longer the intended caregiver and S5% ofcaregivers have provided • and that"death" was no longer an emerging threat. Program verbal agreements. Joint guardianship was completed by 8% of staff was respectful of the parents' views and encouraged these families; 11 % of caregivers signed a legal consent form; • 6% have initiated a court action and one family has agreed their hopeful perspectives. This however, was a barrier for • permanency planning was often associated with "death" and for to temporary custody. Based on the Project Milagro's 5 • "losing control:' Stage Model, families were categorized into the following • levels: Level 1-7%, Level 2-33%, Level 3-31%, LeveI4-11% and Others barriers were related to the painful emotions that were Level 5 8%. Families continued to concentrate in the second • often triggered as permanency planning was discussed. It and third stages ofthis process. Caregiver's knowledge ofthe • was often a challenge for parents to think about what would client's illness was 82% and 11% among parents refusing to • happen to their children in the event that they became disclose. Children were usually too young to assess ifthey • unable to care for them or died. This was especially true, for had knowledge oftheir parents' illness (63%) and 11% of • the parents who cared for HIV positive children. The program parents refused to disclose their HIV to children. Obstacles served a total of 8 famines in which a child was diagnosed with to permanency plans included 43% of families who were not • HIV or other serious health condition. In a few cases, the staff • ready to address this topic, 23% specified disclosure in general • • 12 as problem, 17% were in denial ofthe outcome of HIV and design was used to evaluate the efficacy of program services • 19% offamilies were unable to identify a suitable caregiver. at different time points. Data was collected at program entry • Other challenges included issues with biological fathers (32%) (baseline), six months (post-test) and program completion • followed by immigrant status for 34%. Eight percent (8%) of (post-test 12 months). mothers were dealing with crisis and were unable to address • permanency planning and there were 25% offamiiies who A. DATA COLLECTION INSTRUMENTS • tended to"miss" permanency planning appointments. Overall, The project's self-reported instruments and interviews were • this data was helpful to the project's service delivery and in administered in English or Spanish, depending on participant's • developing realistic time frames for clients. language preference. • Bienvenidos Intake • ...... • This assessment contained open-ended questions on Program Evaluation demographics such as marital status, number of children, • income, employment and family composition. Cultural • I. EVALUATION IMPLEMENTATION variables were also obtained and included language spoken • in the home, country of origin and years in the United States. • The evaluation implementation activities consisted ofa The Intake further obtained service needs and proVided series of staff trainings focused on data collection protocols, • comprehensive assessment of presenting probiems. The intake data management, coding and maintaining participant files. • was obtained for each family using an interview format at Emphasis was placed on adhering to the project's evaluation program entry. • plan and timeline. Quarterly meetings and presentations with • project staff were conducted to discuss program reports, Child Risk Factor/Developmental Screening Checklist • evaluation findings and data issues. The evaluation team was active in engaging staff in the data collection process and • The Child Risk Factor Survey, a 20 item checklist was used provided technical assistance for completing instruments. • to identify experiences or events occurring within the last The evaluation followed IRB and HIPPA guidelines by securing six months (current) and more than 1 year ago (past) that • confidentiality of participants'identifying information and identified children at"high risk:'The developmental screening • data. The evaluation applied unique participant identification assessed medical, mental health, emotional and behavioral • numbers, obtained signed consent forms for participants functioning based on history data, diagnosed conditions • and the lead evaluator stored data files in locked cabinets. by a professional provider. parent input and the project The evaluation team provided ongoing data logs for tracking • coordinator's observations. Child risk assessments were data collection activities and to monitor attrition rates. The conducted for the youngest child of each family (index child) at • evaluation completed the project's data collection for the baseline and post-test 12 months. • AlA Cross-site Database and the Children's Bureau protocol Ages andStages Questionnaire • database. Project Milagro submitted electronic annual data for & Developmental Profile 2 • the 4 year-grant award period to the AlA Cross-site evaluation. • Based on the number ofchild risk factors. developmental II. EVALUATION DESIGN testing was completed for children who were identified as • The overarching goal ofthe evaluation was to capture effective "high risk" for developmental delays. learning disabilities, • strategies that promote child safety, permanency and family behavioral problems and medical conditions that may • well being. Analogous to the Project Milagro model, the potentially impede developmental functioning. The ASQ was • evaluation examined the impact ofsocio-cultural factors and used to test children ages 3 months to S years old and the DP2 • socio-demographic variables on a number ofshort and long tested children between S.l years to 6.0 years. Both ofthese standardized measures provided scores for five developmental • term outcomes, among Latinas with HIV or AIDS and Substance Abuse. The evaluation provided an enriched assessment of areas of functioning: communication, motor skills (fine and • race/ethnicity that expanded general United States Census gross), socialization, self-help skills and problem solving or • data, by acknowledging the heterogeneous factors ascribed cognitive development. The DP2 scores were calculated using • to Latino/as. A quasi-non-experimental pre- and post-test chronological age in months to determine functioning levels • • • • whereas the ASQ provided"at age-appropriate level, below or Parent Stress Index 13 above age level"(categorical). • The Parent Stress Index (short form) was used to examine the • Parent Risk Factor Checklist impact ofthe project's home base model on reducing parenting stress levels. The PSI short form version is currently used in the • The Parent Risk Factor Survey, a 4D-item list ofevents, identified AlA Cross-site evaluation and this version was incorporated in • childhood experiences, psychosocial events and social the present study. The PSI-Short form taps into various aspects conditions as factors placing parents "at high risk:' Recent • of perceived stress associated with parental distress, dealing events occurring during the past 12 months and lifetime • with difficult children, parent and child interactions and total life events occurring over 12 months ago were the methods used • stress levels. The PSI provided 4 domains: Parental Distress (12 in evaluating risk factors. This assessment was completed at items), Parent-Child Dysfunction (12), Difficult Child (12), and • baseline and post-test 12 months (or program completion). • Total Life Stress (36 items). The PSI contained a Likert response SAS-Hispanic Scale scale with item scores ranging from 1- 5, with 5 meaning • strongly agree. Scores were summed for each domain and The Short Acculturation Scale - Hispanic (SASH) was utilized • ranged from 12 to 180. This tool was administered at baseline to assess level of acculturation among participants. This short • and post-test 12 months to biological mothers. 12-item scale taps into language preference and environmental • social practices within the Hispanic (Latino) culture. The SAS-H Health Related Quality ofLife Scale • provided a score range from 1 (low acculturated) to 5 (highly The evaluation assessed the quality of life at baseline, six acculturated) and was evaluated with other relevant socio-cultural • months and at program completion using the HRQOL measure. variables (language, country oforigin and years in the U.s.). • This instrument consisted of 9 subscales and 3 composite • Health Interview Survey scores. This self-reported tool yielded a score range from 1 to 100; higher numbers indicating better levels of quality of • The Health Interview was developed by the project to identify life. The subscales were: Physical Functioning (9 items), Role • health conditions for each ofthe group ofparticipants Functioning (2 items), Freedom from Bodily Pain (2 items), impacted by HIVIAIDS or Substance Abuse. For the Substance • General Health Perceptions (3 items), Social Functioning (2 Abuse group, Health Interviews assessed level and history of • items), Energy-Fatigue (2 items), Positive Affect (2 items), alcohol/drug addiction; past substance abuse treatment and • Anxiety (2 items) and Depression (3 items). For this study, health problems. • composite Mental Health and Physical Health scores were used • The HIVIAIDS Health Interview obtained information on HIV to assess the impact ofSubstance Abuse and HIVIAIDS on • status: such as exposure to HIV or AIDS, symptoms, medication quality of life. compliance, medication side effects and HIVIAIDS related Caping • illnesses including physical functioning. • Coping methods used to deal with HIVIAIDS and/or Substance Medical Access • Abuse were assessed at baseline and program completion • This tool contained 11 items, scored 1 to 5 with 5 meaning (Post-test 12 months). This tool contained 32 items and • better access to medical services, medical centers and utilized an early version ofthe Coping Response Inventory physicians. Medical access among Latinas was assessed at (Moos, 1991). This measure provided three types ofcoping: • program entry and program completion. Active-Cognitive, Active-Behavioral and Avoidance strategies. • Participants responded to a Likert type response scale to CES-D • behavioral and cognitive types of actions to coping with their • The Center for Epidemiological Scale-Depression was used to health condition. Avoidance type behaviors were scored as less • assess depressive symptoms and anxiety during the past week. effective than the other 2 subscales. The score range for this measure was 0 to 60 with a score of 16 Social Support • or higher indicating presence of depressive mood symptoms. • The project evaluation design included baseline, post-test 6 Practical support and Emotional support were measured • month and post-test 12 month assessments. on a 4-point Likert scale from 1 (a little bit supportive) to 4 • (completely supportive). Ratings were summed across all • people the client reported to be in their circle of support. Each • • ~ client could report up to 9 people in the circle of support, 50 statistics were used to identify demographic and socio-cultural • total scores could range from 1 to 36. The clients were asked variables. The overall statistical analysis scheme applied to • how certain they were that each support person knew oftheir examine program effects included change T-Tests and ANOVA HIV diagnosis or substance abuse. The degree of knowiedge statistics for the HIV/AIDS and Substance Abuse groups from • (disclosure) was also measured on a 4-point likert scale from baseline to termination for the project's outcome measures. • 1 (I'm sure he/she does not know) to 4 (i am certain he/she Within and between group analyses were also conducted to • knows). Overall degree of knowledge could range from 1 to 36. detect further significant changes from baseline (pre-test) to • Social support was evaluated at baseline and 12 months post post-test for the project's sample. • test. In addition, the evaluation assessed type and quantity of social support by developing the above brief Likert type V. RESULTS scoring questionnaire for the project's "Circle of Support" used • Demographic Profile to identify supportive resources for families. The "Circle of • Support"was used as an entry point in developing permanency HIV/AIDS FAMILIES • plans among HIVI AIDS families and assessed degree of self IndexChildren • disclosure/knowledge of HIVIAIDS diagnosis. • There were 78 index children in this group, 85% were living Client Satisfaction Survey with biological mothers diagnosed with HIV or AIDS, 4 index • This five-item questionnaire was used to assess satisfaction children resided with HIV positive fathers and 1 child lived • levels using a 4-point Likert scale. The questionnaire was with both HIV positive grandparents. The project currently has • obtained from AlA Funded programs during the last year of enrolled a total of6 HIV positive children. The mean child age • this project and provided data for 36 families. This tool was was 4.5 years with 57% male and 43% female. • administered as a follow-up questionnaire after program HIVIAIDS (HA) Latinas termination. • 87% of Latinas and their partners were primarily Mexican • III. SAMPLE (foreign born) and Mexican American: 17% were born in • the United States, 47% migrated from Mexico, 11.3% from The sample comprised of 159 index children, 6 years old or • Honduras, 11.3% from EI Salvador, 7% from Guatemala and younger and 248 minor siblings among 163 families. Of the • 2.8% from Belize. Self-identified African-Americans represented project's families, 85 (52%) were identified with at least one • 8.5% offamilies while 4.2% self-reported as "Other" and Substance Abuse parent (primarily mothers) while 71 (44%) migrating from Africa. The average number ofyears Latino • represented at least one HIV positive or AIDS caregiver (mostly families resided in the United States was 14years (non-U.s. • biological mothers). There were 36 partners included in the born). Spanish as the primary language was reported for 61% evaluation that were assessed using demographic data and • offamilies, English was 16% and 24% stated being bilingual. identified as fully or partially engaged in the project. The • The mean education for parents was 8.8 years for mothers and sample also included 9 index children residing in families • 10.4 years for fathers (N=24). The mean age for HA biological impacted by HIV/AIDS (Hai-N=7) and/or Substance Abusel mothers was 33 years and 35 years for fathers. Marital status • Addiction (Sai-N=2), The results presented were based on for this group included 33% reported "married" or"living with • biological Latina mothers who were HIV positive or living a domestic partner': 37% were single mothers, 21% were with AIDS; and Latina mothers diagnosed as alcohol/drug • separated or divorced and 9% were widowed. Among HIVIAIDS dependent. Due to the small sample numbers, non-HIV • Latina primary caregivers, 62% were single heads of household. (Hai) and non-Substance Abusers (Sal) were included in the • Work status reported for HA families (mothers and fathers) statistical analyses. indicated that only 9.9% were employed full-time and 12.7% • had part-time employment; close to 78% were unemployed • IV. OUTCOME EVALUATION although 10% were actively seeking work. • Data was examined for a total of 163 families that included198 • fully or partially participating adults and 159 index children • (4 unborn index children at intake). In this report, descriptive • • • • 'SUBSTANCE ABUSE FAMILIES referred by the Department of Children and Family Services, 15 the risk factors identified for SA children were as expected. • Index Children For the total sample, 18% offamilies had children detained • at program enrollment. In addition, 22% offamilies reported There were 8S index children impacted by Substance Abuse • and 87% were residing with a substance abusing biological recent involvement with child protective services and/or • mother. Children were younger in this group with a mean age current open DCFS cases. of 2.7 years; 41 % were male and 59% were femaie. • Table I. Baseline ChildCurrentRisk Factors • Substance Abuse (SA) Latinos Sampkl Grrwp HA (n=70) SA In=lSj TOTAL (",,'481 ~ • RmJ;. Factor llflms _I % % ~"l % The mean age for mothers was 30 years (N=82) and 32 years "' • for fathers (N=20) with an education mean of 10.7 years. 9. lad. of $l3ble f
• Lllliet of Accuittlratlon Itl Substlnce • 38.1 ...... • .... • -~ "., • -"'-,--'~" '" .•.... _....._. ..--' • HA(n"'&61•. • Fifty-four percent (54%) of participants were rated at Stage 1, 22% at Stage 2 and 6% at Stage 3. Participants taking HIVIAIDS • medications were 92% (and 8% were not). Compliance to • Health Conditions medication protocols was 89% among this group and 67% • reported experiencing illnesses secondary to HIV and/or The Health Interview was developed by the project to identify medication side effects. Medication side effects commonly • health status and medical needs for participants impacted reported were fatigue/weakness (42%), loss ofappetite/weight • by HIV/AIDS or Substance Abuse. For the Substance Abuse loss (39%), headaches (14%) and mood disorders (21%). Overall group, Health Interviews assessed level and history ofdrug • percentages for number ofside effects reported were 34% for 3 addiction; drug treatment needs; drug related health problems; • or less; 16% for 4; and 16% for 6 to 7 symptoms. • and medical needs. Service plans targeting improved health outcomes are based on this assessment. For the HIV/AIDS Figure S. Exposure to HIVInfection Among Latinos • group, HIV status, symptoms, medication side effects and • associated HIVIAIDS related illnesses were used to monitor and • assess health service needs and medical conditions that impact • quality of life and levels of physical functioning. For the total -.... • sample, this data was used to establish case plans and service • goals for each of the families. • HIVIAIDS Sample Twenty-three percent of participants have • been diagnosed with AIDS and 69% are +HIV symptomatic. Among these participants, 8% were a symptomatic. The • average time participants have been living with HIV/AIDS was • 5.3 years (range: 1 month to 10.7 years). Physicians primarily • informed participants oftheir diagnosis (86%) (see Figure 4). • Partners only informed three women their HIV status prior to • testing. Retesting to confirm their diagnosis was reported by • • .-
~Substance Abuse Sample Figure 7. SA Medicol Conditions Present During Progrom •-I[ Figure 6. Drug ofChoice. •I[ •, •J •, •'I •'I •.." •" ... •'I ... •I[ , Accessing Medical Services I[ - ,J • I[ Drug/alcohol histories revealed that 17% of the sample Access to medical services was assessed using the Medical • reported using drugs or alcohol during the past six months; the Access form. As previously identified, the project's sample was most frequently abused substances are presented in Figure 6. at high risk due to inadequate or no medical insurance. The : Methamphetamines (37%) and alcohol (36%) were the most project's services focused on assisting families in identifying health care providers, accessing health care services and • common substances used by this group. Drug dependent obtaining medical treatment (4S%). Baseline data for this form • history indicated that 68% ofwomen were long-term drug users (more than Syears), 24% used drugs/alcohol between 1 indicated that women with HIV/AIDS were accessing health • year to Syears and 4% reported using for less than one year. services significantlymore than the women impacted by • Self-report duration of sobriety for this group indicated that Substance Abuse. This difference was found significant using • S4% were sober for more than six months, 36% were sober ANOVA analysis (p.<.OOO). The means for SA and HA samples • between two to six months and 8% were sober for less than were 3,43 and 4.04, respectively. For this measure, higher scores indicated increased medical access with a score range • one month.The mean age of onset of drug use was 17.1 years old and 8 years old was the youngest age reported. Half ofthe of 1 to S. Women in the SA group were found to have less • sample reported using alcohol/drugs during pregnancy. These access to health care and may be due to in part to health care • included alcohol, amphetamines or tobacco (most prevalent). neglect while actively using alcohol and/or drugs. In contrast, • Drug treatment status for this sample indicated that most women living with HIV were more likely to be receiving medical • women utilized self-help groups (64%) followed by outpatient treatment for their HIV/AIDS. The health information obtained • treatment (S1 %) and residential treatment (19%). has guided program services to provide SA women with health care linkages and treatment for routine medical exams, STD • Medical conditions including mental health issues are including HIV testing and medical treatment for specific health • presented in Figure 7. Half ofthe substance abuse women issues (e.g. Hepatitis). For the HIV/AIDS group, services have • reported having poor health. The most frequent condition was emphasized health education on HIV symptoms, medication mental health (31 %) and abnormal PAP results (7%). A total of • protocols and medication side effects. For the total sample, thel 34 different health conditions were reported for the SA sample. • project has focused on linking families to state funded medical I Medical treatment sought and received for these conditions coverage. Statistical analyses were conducted using ANOVA • was reported by only 63% ofparticipants. Eleven percent (11 %) statistics and a series of paired t-tests for changes from baseline • ofwomen reported that these medical conditions were related to 12-month post-tests (termination) for medical access • to their drug or alcohol abuse. A high percentage ofwomen, outcomes. Significant changes were detected for the project's S9%, reported having surgeries during the past year. • SA and HA groups. Medical access was found to significantly • increase at termination for HIV/AIDS women compared to • • • • 'Substance Abuse women (F=9.89, p<.003). HA women were Figure 9. Depressive Symptoms 21 • found to have more access to medical services and meeting • their health care needs more often than the Substance Abuse CES·D Depression Levels at Baseline • women at program entry and program completion. • Figure 8. Significant Medical Access for HIVIAIDS 37.7 35,9 Women Compared to Substance Abuse Women. • 30 • Medical Acce.. for Sub$tance Abu$/ng V$. HIV. 20 • Participants' • 4.1 10 3.4 • 0 • cutoff for HIV+ (n = 59) Substance • depressive Abuse (n = 65) • o+-- symptoms HA (n =68) SA (n =68) • ~grou~ ale different at the.OOll6vel of significance • The baseline mean was 36.84 and 25.73 for termination for the • total project sample. Paired t-tests on changes from baseline to Qualitative evaluation ofthis finding may provide one termination were conducted and significant results were found. • expianation. The project's HIVIAiDS sample was identified as Despite the high levels of depressive symptoms, significant • low acculturated monolingual Spanish-speaking women who improvement at termination was detected for families. These were impoverished and uninsured.This group was more likely • results appear in Table 4. As shown, the program had a positive to seek medical services from cou.nty funded public health • effect on families by reducing their levels of depressive facilities and university-county based hospitals. Many of these • symptoms. women were found to be active participants ofthe numerous • clinical trials-HIV studies that are conducted often in public Table 4. CES·D Baseline to Termination Changes • medical institutions. The Project MiJagro team has reported • frequent changes in medications and in the rigorous protocols • required among the HA women and their partners (at times). CES-O Mean SO t P level For many ofthe HA women, receiving medical treatment is • baseline 32.42 11.47 2.20 0.033 important. As previously discussed, this group reported a 92% • compliance rate to medication use. • termination • DepressiveSymptoms 25.73 4.11 The Center for Epidemiological Scale-Depression was used to • assess depressive symptoms and anxiety. The score range for Reducing Parenting Stress Levels • the CES-D is 0 to 60 with a score of 16 or higher suggesting at • risk for depressive mood symptoms. The project evaluation The Parent Stress Index (short form) was used to examine • design included baseline, 6 month and 12 month follow-up the impact of the project's home base model on reducing • assessments. The baseline means obtained for the project's parenting stress levels. The PSI short form version is also sample showed that these families exceeded the at risk score currently used in the AlA Cross-site evaluation. The PSI-Short • of"16:' As shown in Figure 9, the mean rates for HIV women form taps into various aspects cif stress associated with parental • were twice the cut-off level. This was also found true for the distress, dealing with difficult children, parent and child • Substance Abuse women. bonding, and total life stress levels. Specifically, four domains • • • ~ comprised the total PSI score: Parental Distress, Parent-Child Practical support and emotional support were measured • Dysfunction, Difficult Child, and Total Life Stress. Statistical on a 4-point Likert scale from 1 (a little bit supportive) to 4 • analyses were used to evaluate changes from baseline to (completely supportive). Ratings were summed across all • program completion. In addition, between and within group people the client reported to be in their circle of support. Each differences for the HIVIAIDs and Substance Abuse families client could report up to 9 people in the circle of support, so • were examined. Statistical analysis ofthis measure did not total scores could range from 1 to 36. The clients were asked • detect any significant results for the total project sample, SA how certain they were that each support person knew oftheir • and HA subgroups. However, a decrease was found for both HIV diagnosis or substance abuse. The degree of knowledge • groups at termination. More importantly, stress levels resulting (disclosure) was also measured on a 4-point Likert scale from 1 • from parenting such as dealing with childcare or a difficult (I'm sure he/she does not know) to 4 (I am certain he/she knows). child were found to be higher than the normative sample. As Scores for degree of knowledge could range from 1 to 36. • shown in Figure 10, means at baseline and termination for both • The mean number of supportive people for the project's groups were relatively higher. • sample was 3.83 at baseline and 3.62 at termination.The Figure 10. Non-significant Baseline to Termination majority offamilies indicated that they could rely on their • Change: HigherMean Scores for SA and HIVIAIDS primary supports to provide practical support (mean~10.25) • Women than Normative Sample. and emotional support (mean;12.52). More than 50% had at • least 2 supportive persons in their Circle of Support. Baseline Chlnge in P"entlng T01.1 Stress tmh;r • from ,,",nn. to J"mhl.lion to termination comparisons for the project's sample did not
I l( iiN~ • provide any significant differences for this analysis. Overall .~M~A:r'.r;e I" degree of knowledge or "disclosure"was 12.50 at baseline and • I 15.2 15& 12.10 at termination. No significant changes were found for • 13.1 "disclosure"of HIVIAIDS and Substance Abuse to persons in 10 • participant's circle of support. • Group comparisons on social support yielded significant result~ • and are shown in Table 5. At baseline and termination, the SA '"- __-y-__.J • ~--yr--- '~ clients reported significantly more people in their circles of I"I e...lin, Ttnnlnation • support, higher levels of both practical and emotional support • and greater degree of knowledge oftheir diagnosis among Social Support people in their circles of support. In contrast, HA clients had • The evaluation assessed type and quantity of social support fewer people in their circle ofsupport (average was close to • by developing a brief Likert type-scoring questionnaire for 3) and received less practical and emotional support. Social • the "Circle of Support" used to identify supportive resources support did not improve at termination for HA families. In • for families. The "Circle of support"was previously used as an addition, degree of knowledge of Substance Abuse or HIVI • entry point in developing permanency plans among HIVIAIDS AIDS among supportive persons was high for both groups. families and assessed degree ofself-disclosure of HIVIAIDS • The majority of Substance Abuse clients indicated that they I diagnosis. In the current project, social support is assessed disclosed past substance abuse problems. Among the HA I qualitatively and quantitatively. The evaluation assessed group, 18% indicated that supportive persons did not know I its psychometric properties and utility for measuring two about their HIV status while 72% reported self-disclosure. types of support: practical and emotional. In addition, this I instrument provided data on the number and relationship of I supportive persons at baseline and program completion. The I social support measure also obtained levels of knowledge of HIVIAIDs or Substance Abuse conditions among supportive •I persons. • • :1.• • • Table 5. SocialSupport Group Comparisons EnvironmentalSafety 23 ,---~- • SA The evaluation assessed environmental and home safety for HA • N Mean SD N Mean SO p children using the Family Assessment Form - Safety Domain. • This domain captures safety practices in the home such as Baseline child proofing; items taping into maintaining child safety • ! Number of supportive include providing adequate childcare. This scale used a 1 to S • ,!people 54 2.73 1.3 63 4.87 2.0 <: .001 score range with S indicating less safety (poor functioning). \ Total practical support 54 8.51 5.1 62 11.88 6.9 < .01 • Families were evaluated at baseline and termination in their Tatal emotional support 55 8.92 5.1 64 15.92 8.3 <: .001 • Overall degree of homes. Change tests statistical analysis indicated that families • knowledge 55 8,4S 4.6 64 16,33 8,2 < ,001 in both groups did not significantly improve their homes, however significant changes were found for between group • Termination Number of supportive comparisons. As shown in Figure 11, significant changes from • people 27 2]4 1.0 20 5.20 2.1 <: .001 • baseline to termination were found for the Substance Abuse group and not the HIV/AIDS families. • !Total practical support 27 8,26 4,1 20 lS,93 8,6 <: .001 Figure 11. Child Safety • i Total emotional support 27 8,26 3.7 20 17.07 8.9 <.001 Overall degree of I Filmlly Functicning Home Safety A$a:um.nl· • ! knowledge 27 9.S2 4.1 20 16.73 7.3 <.001 • There were several limitations to the quantitative scheme :1 • and content validity applied by the evaluation to assessing social support. This tooi was developed to capture the process , • of permanency planning among HIVIAIDS families. For this 2.1 2 • purpose, social support items closely identified persons in • clients' circle of support and attempted to measure the quality HA(n"53j SA In =40) • of supportive persons from highest to lowest. In general. this • tool was difficult for staff and clients to complete. Clients were • further asked whether they knew if supportive persons were knowledgeable oftheir HIV status. Only one item clearly stated, Coping Strategies • "Clients were certain they knew because they told them:' Coping methods used to deal with HIVIAIDS and/or Substance • This latter item better assesses "self-disclosure" compared Abuse were assessed at baseline and program completion • to the other three choices. HIV clients identified formal (Post-test 12 months). The 32 item earlier version ofthe Coping persons as supportive such as the project's staff, nurses and • Response Inventory (Moos, 1991) was used to measure three doctors followed by siblings. This pattern was also detected • types of coping: Active-Cognitive, Active-Behavioral and at termination. It is important to note that only 2 to 3 persons Avoidance. Coping strategies were evaluated for the project's • were identified as in the "circle ofsupport"among HIV women. adult participants who were asked to identify how they have • This small supportive network may be due to this group's coped with one ofthe following situations: (1) their own HIV • isolation, mental health problems and limited networks if they , positive or AIDS diagnosis and (2) their own Substance Abuse. are newcomers to the United States. It is not surprising that • Statistical analysis using ANOVA'S revealed significant changes this group did not demonstrate any changes or increase in • from baseline to termination among the Substance Abuse social support at program termination. As previously discussed, • women. This finding indicated that these women utilized the majority of HIV women in this project have maintained Active- cognitive coping strategies which includes cognitive • supportive relationships with staff at shelters or other attempts to understand the problem and identify positive ways • temporary housing facilities, hospitals, clinics and community to deal with the stress (arising from Substance Abuse). The based organizations similar to Bienvenidos. • other two strategies, Active-behavioral coping and Avoidance • coping were non-significant. The results are displayed in • • ..II II 24 Figure 12.ln addition, HIV/AIDS women were found to cope Figure 13. Significant Baseline Social Functioning • poorly at program termination when compared to SA women. •II Specifically, the HA women did not endorse coping items that &"eHne Hl!alth·Related Qu;JUly of life II Sociill Funr:t1oning • • indicated utilizing actions to activeiy resolve their stress or II problems. • " •II This finding may be due to in part. to the limited termination •II data obtained for this measure. The other co-factors to the poor , .. II coping outcomes for the HIV group were: • •II Figure 12. Coping Changes at II Termination for SA and HA Participants • ---~'---' . II HAln #S41 Change in Active Cognitive Coping • • gr 1 •I • • • Culturally Specific Services Evaluation Plan: Methods for • Assessing Child Well-Being TIle heterogeneity 3mongLaIino families, particularly • Latinas and their children. continues to be defined.as like the Project Milagro service model, the evaluation plan pertinent in developing l.:ultura.Uy sensitive loten'cnriom • was linguistically and culturally appropriate for Latino families. for this ethnicgroup' (Alvarez et al.. 2004). Projcct Child outcomes for 12; children. ages three months to eight Milagro delivers servkes. literature. program documents. • years old. were examined using a pre- and po:lst·tcst Six-mouth and educational materials io Spanish. Bicultural staff is • assessment. Meae>ures included a 20·jtem child risk factor knowledgeable. about the culture and cogniZJnt of and developmental screening tool developed by tht' acculturation factors. • Bienvenidos agency, the Developmental Profile It (DP2) tdcntifying family acculturation levels ensUfescwtuf (Alpern et a1.. 2000). and the Ages and Stages Questionnaires • all)' sensitive scrvkes beyond Spanish tra'lsJations. A (ASQ) (Squires et 31.. 19991. Parents were engaged during the linear assessment ofacculturation (Marin, 1987) distin. • assessment process and pro..ided prenatal histories for thE' guished two groups; ;0% of Latinas who were identified childre11. • as less acculturated-and represent HfVfAJDS.families: • and 50% of l.atinas: who werc identified as more acculturated a.nd as bicultural {Mexican .and Americ::m CHILD RISK fACTORS AND • cultures) and represcut tht" substance .abuse families. DEVElOPMENTAL SCREENINGS • Acculturation differences were significant (p<.OOJ) and served as a culture.;specific bruide for service delivery Risk factors idclltHied at program entry for children delineated • strategies,. case plans. and family services. lhc problems faced by proJect families, At program entry. "Jack • of stable family compositionh within the past six months was the most prevalent risk factor for 71% of HIV children and • 7}% of substancE' abuse children. Prevalent risk factor rates during the past 12 months were also· high for both groups: • exposure to domestic violence and victimization 'by abuse or • neglect \42%). exposure to substance abuse (40%). and residing in unstable housing (36%). Among substance abuse • children. ;t% were prenatally drug..exposed and 24% lacked • prenatal or wen baby care, compared to f8% and I}%. respet~ Lively. for HIV chjJdren~ For the total sample, premature births • were reported for 19% ofchildren. and 1)% ofchildren had • low birth weight (under six: pounds). Child risk factor outcomes suggest pronounced differences • between substance abuse and HfVchildren. Substance abust" ImportJntly. acculturation levels determined the children experienced more risk factors for longer periods than • culturalcontext for understaridingaod working with their HtV counterparts but had significantly less risk factors • children.O'i.oerall; children in .H1V. families lived in. mono at termination. Baseline and post-test comparisons :lhowed lingual·Sp.tnish·speakinghames with fore,gn~born positive significant changes (p~tevels <:.05): Drug and/or alcohol • parents. The project's substance abuse families w:ere exposure in the home significantly decreased for substanCe • more acculturated. withchjldren and parents rilorelikely abuse children during program engagement Overall, child to be second Q:(third gencrtltion Me),ican Americansbom abuse and neglect and out-of~home placements decreased • iothe United States. To ensure cultural sensitivity, significantly [oc aU children. particularly for substance abuse • applied interVentions respectedaccultur.lhon. and cl,!ltura] children. Exposure to domestic violence. stable family relation· beliefs and practic5,and integrated latino\lalues (Harper ships, and stable housing also improved for these children. • & .lantz.2.ooj)..·For.example. I1imilismo is' the high value The reduction in risk factors for H tV children was minimal. • and .regard for the family Mill the vieW thatthe·farriily is suggesting that these children continue to e,~:perience multiple the primary unit ofsuppo:rt; ·Personaflsmois formal. friend risks. At termination, "lack ofstable family composition" • Hness. the value· of interpersOnal relationships. (Sz%}, "unstable housing" (36%), and ·exposure to domestic • ... iolence~ (19%) were reported for them. • • VOL. 18 NO.1 THE SOURCE' THE NATIONAL A.BANDONED JNFANT$ ASSISTANCE RESOURCE i;ENTER • • • •.. • Dt-vdopmentaJ screenings 3SSf"'SI~d medical, mental parental substance abuse and parenting skills have ron· • health. and bdlJvioral problems b.ast~ on child history. tributed to the positive outcomes reported for children. diagnosed. conditions. staffobservations. and parent input. Chl1d risk factors, due to the lad: offamily .,md housing • At b~seHne . .approxin»tdy 18% of children were detected stability. reflect the social conditions and environmental • with beha.vioral probleml', and 5% with dC\e1opmental stressors expcrienct.-'d by these families. Project services have language delays/learning disabilities. M(-dical s(~r<-:ctlings focused on stabilizing f3:miJies and providing f.amily counsel· • ,denlWed 13% ofchildren with health cOhdth.ons, Post-test ing. Additionally. ddvocacy and entitlement assistance have • changes were detected onl)' for children with behavtotal been clfective in increasing family and housmg stability. as prohlertu. indkating an itnprovement of 17% (p<.OOtj, well as' reducing environmeutal stressors. • In addition, devdopment<11Ianguag~delays had a slroH l.atioas living with HJV/A1DS and th(.~r families continue • improvem{*nl of 8% among substance abuse children. to reside in shelters and subsidized housing and eXjX-'rience HOWt'Vt~l~ these results are hmited and inIt'rpreted with homelessnC'Ss and isolation. The cldtural stigma of • caution due to small samples. Overall. developmental HIV/AIDS, language barriers. and limited financial, emotion • screening outcomes at termination did not identify addi· al. and family support contribute to the continuing challenges tional or new conditions; rather. child screenings provid<:'d faced by these mothers and their children. • early detection for supplemental testing and appropriate • program interventions. Lourdes Carranza. MS Progrom Manager. Projelt Milagro • lcarranz:[email protected] • CHILD RISI( fOR DEVelOPMENTAL DelAYS Mortho Cristo, PhD • Supplementary testing was conducted for approximately ProjlXl Milngro Evaluator/Licensed Clinical P'l"hologist 20% of the program's children identified as -high risk" for • nu:risw,phd@gmad,com developmental delays, The ASQ \\'3S used to test children. • ages three months to five years old. and Ule DPz tested Eva Estrada, MFT chHdren between j.1 rears to Ko yeaTS. Thes£;' standardized Former Director, Project Milagro • meaSUt1~S provide developmental functioning scores for communkation/language. motor skills (fwc and gross), • socialization, self-help skills. and problem·soMngjcognitive • development. Baseline data indiGlted that 27% ofchildren .. had ont' or more delays. The most Common delay for 17% REfeRENCES ofchildren was communication/verbal skills (in their • native bnguage). followed by delays in fine motor skills Alpern. C.. BoU. I.. & Shearer. M, (~ooo). Dcvt*'pmrnu.d Profile 11 Manual. iI9%). Overall, these skins arc critical to school readiness Lo.~ Angeles, CA: Wettem Psychological Senicl's, • Ah.;u('"Z.)" OfsQn. BX>" lamIl. LA" Da'-!s, M. t. &- Fetr.aJi.I,R, 12.004). and transitioning into kindergarten. The ptoject staff Helt'rogt"tlcit}' ;trrt --\iu: \~.Q., :fi) \Z.. ""u... :m ~ 5~ +~I ;" '1 )VI G ;io "M'1 : l.~rr+. p-e~ ~v. a.?rD \ V) +t \ \.Q.. I jf),LL; .....u .\ h ctcl V\.'b • ~o.J- W \ -\-G ~ ~D cl ijovc\-1'€ r2. So . 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'.•• • • • • • JESSICA RENGIFO 3608 Bell Ave • Bell, California 90201 • September 24, 2008 • To whom it may concem: • I have been with AlA 'Project Milagro' for a year, and have had Mrs, Lynda Evans as my in home • counselor, I want to inform you that due to her concems, assistance, suggestions, and support I • have become the responsible person I am today, • • build on my self-esteem, and to dream of a healthier life, I would like to mention a couple of my • successes, I have regained custody of my daughter; I have my Driver License, but the most • important is that I feel strong enough today toO be independent. and to work hard to reach all my • dreams and goals for my daughter, my famiiy, and me, • Mrs, Lynda Evans has spent many hours in ,cuuJ'rwltrHne encolmllimgme'ro mypm;itilve, Sne • helped me study for hours to pass my drivers license test, and has always show concem and • respect towards me and my family, I am glad to have been introduced to the program, and hOpe it • will continue for others Who are in need as I was, I will always appreciate all that Mrs, Evans did • forme, • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • AppendixC • Project Milagro Trainings and Presentations • DATEI FORMAT Title of Presentation Location Number • attended • Feb., 2005 Future Care and Custody Planning for Alta Med, HIV Coalition Meeling 30 Families Affected by HIVIAIDS • Workshop East Los Angeles, CA • Feb.. 2005 Serving Families Affected by HIVIAIDS Pacific Oaks College 30 • and Substance Abuse: Home-based • Workshop Model Pasadena, CA • May, 2005 Asegurando EI Futuro De Nuestros Hijos- ALIANZA Conference 165 • Conference Securing The Future of Our Children- Los Angeles, CA • May, 2005 Project Milagro's Model and Services AlA National Grantee's Meeting 25 • Conference Washington, D.C. • May, 2005 Asegurando EI Futuro De Nuestros Hijos Learning Together Conference 122 • Conference Securing The Future of Our Children Los Angeles, CA August, 2005 Serving Substance Abusing Latinas- A Family Preservation Network 41 • Home-Based Model Meeting • Workshop • West Covina, CA October, 2005 Project Milagro's Model and Services Department of Children and Family 25 • Services • Workshop • Monterey Park, CA • January, 2006 Project Milagro's Model and Services HIV Homeless Task Force Meeting 32 • Workshop East Hollywood, CA • September, 2006 Project Milagro's Model and Services Bienvenidos Community Advisory 35 Council • Workshop • East Los Angeles, CA • February, 2007 Serving Substance Abusing Latinas- A Plaza Community Center 28 Home-Based Model • Workshop East Los Angeles, CA • May, 2007 Serving Substance Abusing Latinas- A Acacia Counseling Center 52 • Home-Based Model • Workshop EI Monte, CA • November, 2007 Serving Families Affected by HIV/AIDS AIDS Service Center 43 and Substance Abuse: Home-based • Workshop Model Pasadena, CA • • • • Appendix 0: Replication Manual • '.• • ••• ••• • • PROJECT '. • MILAGRO • A Comprehensive Model to Serving • Latino Families Affected by '~.• Substance Abuse and HIVIAIDS • Replication Manual ..• Submitted to • u.s. Department afHealth • and Human Services • Administration for • Children and Families, • Children's Bureau •tit tit •, • • • Contents Introduction Appendices • Purpose ofthis Replication Manual • Appendix A: Job descriptions for positions Philosophical Framework 1. Famify Support Worker • Culturally Respansive Services 2. In-home Counselor Famify Centered Services 3. Therapist • Mifago~ Adopting Project Madel: Checklist • Appendix B: Evaluation instruments Components afProject Milagro 1. Bienvenidos Intake Form • Targeting Families Through Community Outreach 2. Parent/Caregiver Risk Factor Survey: I +ii • Population Served 3. Child Risk Factor Survey: i +ii Point of Entry and Assessments 4. CES-D • Initial Visit 5. Short Acculturation Scale for Hispanics ISASH) • Home-based Services 6. Social Support Field Safety 7. Medical Access Farm [English andSpanish} • Service Planning and Coordination 8. Famify Assessment Form IFAF Safety scale) • Project Mifagro's Expected Outcomes g. Health Related Quality ofLife Survey 10. Coping Survey {English and Spanish} • Team Approach 11. Health Interview Survey for HIV/AIDS • StaffPatterns and Role Definitions 12. Substance Abuse Health Interview Case Reviews and StaffSupervision 13. Changes in Home/Environment / Famify Log • Case Closing 14. Client Satisfaction Survey for AlA Famify Programs • Five Stage Model ofPermanency Planning 15. Copyright Instruments • Stage 1: Assessing the Readiness afthe Family 16. Informed Consent Farm for Treatment and Evaluation Stage 2: Education on Permanency Planning Appendix C: Program Documents • Stage 3: Identifying a Future Guardian 1. In-home Visit Progress Report • Stage 4: Securing the Plan 2. Case Plan Stage 5: Aftercare Services • Appendix D: Program Brochure • Building Bridges Through Community Partnerships Appendix E: Planning for the Future Care Project Evaluatian • ofMy Chifdren Workbook Qualitative and Quantitative Data Collection • Evaluation Methads andPracedures • Evaluation Design • Sample • • • •• •• •• •• •• ••• • • • • • •• • • • •• •• • • • • •• • ••• • • •• •• ••• • •• • • ••• • • • •• To obtain copies Authors We dedicate this replication manual • of this publication Lourdes Carranza, M.s. to allpersons affected bysubstance • bymailpleasecontact: Martha Cristo, Ph.D. abuse and HIVIAIDS. Ofcourse, our deepest gratitude and respect to the • Bienvenidos Funder families forsharing theirstories and • 316 West 2nd Street participating in the program. Further, 8th Floor This replication manual was made possible • by a grant from the u.s. Department of we thank the leadership ofBienvenidos, Los Angeles CA 90012 who consistently supported the • 213 785 5906 Health and Human Services' Administration on Children, Youth, and Families. We development and implementation • www.bienvenidos.org appreciate the investment and interest of ofculturallysensitive andinnovative • models. In addition, thank all the Pat Campiglia and the Children's Bureau. we • staffwho extended valuable support, • Contributors wisdom, and expertise to our effortof • We thank the National Abandoned Infants promoting safety, permanence and Assistance Resource Center, School of Social well-being ofchildren affected by • Work, University of California, at Berkeley for substance abuse and HIVIAIDS. • supporting the work of Project Milagro for • over 12 years. • I • Introduction with Latinas and children.The project's comprehensive model I • developed effective strategies to address co-factors relevant Bienvenidos Children's Center implemented the Abandoned -- to HIV/AIDS within a cultural context. Additionally, service • Infants Assistance (AlA) Program, Project Milagro, from 1992 to mechanisms that successfully resulted in positive outcomes 2008. Project Milagro chronicled relevant factors that improve were supported by the project's evaluation findings. • the safety, permanency and well being ofchildren living with • The project's Substance Abuse women were primarily second Latina mothers, primarily of Mexican origin, who are coping • and third generation Mexican Americans with chronic with HIVIAIDS or Substance Abuse. Equally important, historical alcohol and drug addictions. Most of the project's Latinas • pathways to understanding the social and familial dynamics were identified as "neglectful"parents, actively engaged in • that impede positive outcomes among Latinas have been child welfare systems and had limited parenting knowledge. clearly delineated by this longstanding AlA program. The Project Milagro developed a model that targeted substance '. gaps in knowledge for providing program polices and service • abusers with histories of prenatal drug/alcohol use; domestic designs that target the complexities of needs for Latinas and • violence victims; drug exposed infants; victims ofchild abuse; their children have led to an array of innovative AiA programs sexual trauma; depression; and chronic relapses. Although • that are perceptible in the interiors of poor and disenfranchised the project's Latinas were faced with these challenges, the • communities. In general, AlA programs have collectively worked program model was effective in reducing risks for child abuse • towards providing services to the "least ofthese" communities, and child abandonment. Further, strategies aimed at improving, families and children. Thus, these programs continue to • mental health, coping skills and quality of life were significantlY:, contribute to improving our knowledge base by developing • effective for this group. strategies to meet the unique needs of HIVIAIDS and Substance • Abuse families. Purpose ofthis Replication Manual • Project Milagro provided comprehensive services to Mexican • The primary purpose of this manual is to provide community and Mexican American mothers and their children residing in • based programs, policy decision makers and special entities the East and Southeast Los Angeles area who were identified that focus on developing programs for Latinas and their • as high-risk for abandoning their infants and young children children a gUide to implementing the Project Milagro model, due to HIV/AIDS or chronic substance abuse. The project's • its'framework and the underlying factors that contributed target service area has a large concentration of Latinas living • to its effectiveness. The unique aspect ofthis model has with HIV or AIDS and has been identified as a priority group by • been attributed to the implementation ofculturally specific the Los Angeles County HIV Prevention Plan (2008). Multiple • services that recognizes the heterogeneity of Latinas. The co-factors have been attributed to the disparities of HIVIAIDS Project Milagro model incorporated its history of services to • among Latinas. More importantly, such co-factors continue to •• provide a framework that illuminated the understanding ofthe add to the vulnerabilities of Latinas for newly diagnosed HIV mechanisms and pathways for successfully providing services infections, living with AIDS and limited prevention strategies !.• that address contextual factors (poverty, unemployment, low for acquiring HIV. The incidence rates in the United States for wages) cultural sensitivity (immigrants, acculturation, sex roles, women living with AIDS and women at risk for HIV infection • language barriers), regional applications (migration patterns, or transmission has led to re-examining emerging patterns of urban environments) and community infiuences (disparities in • the epidemiological nature of HIVIAIDS. Overall, the number of services, discrimination, single head of households). • Latinas diagnosed with HIV or AIDS has not only increased but has exceeded case rates among women in general. One in seven • This replication manual outlines the program's services, staffing Latinas are living with HIVIAIDS compared to white female patterns, recruitment strategies, referral process, community • counterparts. Although HIV/AIDS among African American collaborations and the evaluation design, including the project's • women exceed rates for both Latina and white women, the instruments and assessment forms. The intent ofthis manual is • critical factors associated with reducing HIV infections and to guide communities working with and evaluating Latinas faced .;. providing preventive services have not been fully addressed with multiple challenges and living with HIVlAID5 or Substance " when working with Latinas. Project Milagro provided services Abuse. Particularly, family based in home services are described ;. aimed at improving the quality of life among high-risk Latinas in the context of reducing the abandonment and abuse of '. and their children:The model applied to these families emerged children, and increase permanency and positive well-being. ',. from acquiring knowledge of HIV/AIDS trends and working • • •___The Philosophical Framework values: familismo (familism)-high value and regard for the family, view of family as the primary unit of support and help; • of Project Milagro Simpatia-a social script emphasizing a pleasant demeanor focused on reducing conflict and promoting agreement; and Over the course offour years, Project Milagro implemented • Personalismo-a personal attitude valuing warmth, friendliness, a model that was highly effective in promoting safety, • and respect toward others, especially toward family and those permanence, and well-being of children affected by HIVI who hold positions of authority in a community (Santiago • AIDS and substance abuse. The program's model incorporated Rivera, Azara). Such cultural dimensions had important roles in • AlA philosophies and core elements into the program the overall program development and service delivery. • design and service delivery. Embedded in AlA's framework, • Project Milagro' services focused on the concurrent needs of • parents and children. Project Milagro implemented a family Family Centered Services systems approach, which encouraged families to define their Project Milagro delivered services that were family-centered, • strengths and needs. Additionally, the strength in the provider client driven and embedded in a humanistic approach to • client relationship lay in the ability of the staff to develop serving families. Based on the basics of Abraham Maslow's • long-term, trusting, non-judgmental relationship with their theory of hierarchy needs, the program operated with a • families. Families served by the program were empowered fundamental belief that basic needs (food, shelter, safety, etc.) • and respected as weil as supported in their decision making offamilies must be met in order for families to evolve and (Templeton-McMann et ai, 2003). Services delivered were achieve other goals (I.e., improved parenting, self-sufficiency, • family centered and concentrated on strengthening both and increased access to community supports). Project Milagro • family and community relationships. staff delivered services aligned with AlA principles: provided • developmentally informed parental guidance and individual Located in Los Angeles, California, Project Milagro concentrated • its efforts towards understanding the needs offamilies and and family counseling; addressed concrete basic needs; taught • children in the context oftheir culture. Beyond providing tangible skillS; assisted families in developing linkages to • informational and educational material in Spanish, the program community resources through direct advocacy and modeling • provided services that were culturally relevant and sensitive systems navigation as well as provided information on • to Latinos. Interventions applied by the program staff were community resources (AlA, Lessons Learned2007). respectful ofcultural beliefs and practices (folkloric concepts Family centered services identifying family strengths, • and healing, celebrations, family hierarchies, and worldviews, challenges, needs, limitations, and gaps of services were • etc.). Such services were instrumental in engaging and offered. In addition, the project implemented client-centered • retaining Latino families in services that are historically not services focused on development of long-term, trusting, • accessed. nonjudgmental relationship between the family and the staff. • Families served were empowered, respected, and supported • Culturally Responsive Services in their decision making and in prioritizing their multiple needs. Project Milagro integrated principles from the family • Project Milagro incorporated a culturally responsive approach preservation model, characterized by services that were time to serving Latino families affected by substance abuse and HIV/ • limited, relationship-based, family and child centered. Such AIDS. The families served by Project Milagro found themselves • services were flexible and offered in the families' home. dealing with a host of psychosocial stressors as well as • unfamiliar governmental and social institutions. In particular, • the families affected by HIVIAIDS were confronted with Adopting Project Milagro's Model: A Checklist • language barriers that prevented them from accessing services. Use this checklist to identify the assumptions your • To compound their problems, Latino families were forced to organizational culture shares or does not share with the Project cope with the values and expectations oftwo very distinct • Milagro model. This can help you assess the challenges you cultures as they navigated their way through the multifaceted will face when integrating the Project Milagro model into your • social/governmental institutions with which that had to organization's existing service philosophy. Does your agency interface. The program's model allowed for the implementation • and staff: • of clinically, linguistically, and culturally appropriate services. • Services were guided by respect and integration of Latino • • > believe HIVIAIDS and addictions are public health issues, not forms, and started with a welcoming and warm approach to • moral failings? engaging families. The program employed staff that reflected the community they served (both linguistically and culturaliy) , - > Is this belief incorporated into all aspects of programs and • and who were willing to engage families and parents at their services? • level. Investing in building relationships often meant that > offer programs and services to the entire family? program impiementation would take more time. Consequently~ • staff required time in their schedules to connect with families believe that services are more effective when voluntary? • > and to conduct extensive outreach to difficultto reach • > attempt to involve participants in both individual and populations. Building partnerships with other community • organizational decision-making processes? based organizations and non-traditional partners (faith-based" • businesses) was crucial to engaging the target population as > have a long term commitment to the community that it serves? well as meeting the myriad of needs that they faced. • ...... Population Served '. Componen1ts of Project Milagro The program had two service tracks: one for families affected • by substance abuse, one for families affected by HIVIAIDS. • Families consisted of single mother, single father and two • Targeting Families Through Community Outreach parent households and relative caregivers. Families from • Project Milagro targeted Latinas and their families who were the substance abuse were typically headed by young, third identified "at risk" ofabandoning their young children due to generation Mexican-American mothers. Substance abusing • substance abus~ andlor HIVIAIDS. Families residing in Greater women had chronic addictions to methamphetamine, andl • East Los Angeles and East Hollywood areas with at least or alcohol. The women reportedly began abusing drugs at the, • one child 0-6 years ofage were eligible for services. Latinos onset ofteenage years and had experienced multiple failed • with HIVI AIDS and long histories of addiction were typically drug treatment programs. Families from the substance abuse • reluctant to ask for help. group had DCFS (Child Welfare) involvement and at least halfofthe sample had children placed out of home prior to • It was learned that providers who intend to assist people enrollment in the program. Families from the substance abuse "• underserved by existing resources must aggressively seek group were raised in abusive homes with substance abusing .• out isolated individual and engage them. They must conduct parents. Substance abusing women were in relationships with '. assertive as well as creative outreach efforts to engage partners who were also substance abusers and often involved • families in services. For example, outreach efforts held at with gangs. Participants from the substance abuse group educational conferences for families living with HIV as well as had limited education, criminal backgrounds, and were often • commemoration events held by the Twelve Step community unemployed. Poor parenting and mental health issues were .• for individuals in recovery were found to ~e successful. The commonly reported. Families from the HIVIAIDS group were • program stationed staff at substance abuse centers, local less acculturated immigrants from Mexico and Central America. ,• hospitals and clinics where women tested for HIV. Staff also Families were isolated and disenfranchised. HIV transmission conducted outreach at Children's Dependency Court and was often the result of heterosexual contact and often due at local Department of Public Social Services. Program staff • to an extramarital affair. In most cases, the male partner that participated in the community held resource fairs and • contracted HIV through an affair and later infected his wife or ,. disseminated a linguistically and culturally appropriate female partner. Participants from the HIV group were poor, brochure (attached). underemployed and possessed limited levels ofeducation. • Furthermore, Project Milagro staff took pride in the • development of relationships with the community as the Point ofEntry andAssessments • cornerstone oftheir success. It was through relationships Program Milagro received referrals from several entry points. • that the parents were willing to explore and accept the Substance abuse outpatient and inpatient centers, hospitals • resources and supports available to them and their families. I and clinics, housing shelters, as well as DCFS (Child Welfare) The program learned that building relationships took many • referred families to the program. Additionally, word of mouth • • • •__ and self-referrals were common. Referrals were initially granted for those needing services beyond that time period. The screened by the Project Coordinator to determine whether or need for extended services was often due to pending or recent • not the family was appropriate for services. Initial screenings reunifications, changes in the health status of the parent or child • were conducted in the client's home by the Coordinator within diagnosed with HIV/AIDS or due to an increase in risk factors. • 2-3 days after receiving the referral. The screening focused Accessible, flexible and most importantly family centered • on: introduction of services; assessment ofthe family's needs; services proved to be the most promising in engagement and • parent and child risk factors; as well as the client's level of retention offamilies. Additionally, safety, and well-being ofthe • motivation to receive comprehensive home-based support. child and family unit were the primary goals ofProject Milagro, Program forms such as Intake, Confidentiality, Consents to along with strengthening the capacity of parents to care for • Release Information, and Service Agreement forms were their children. The home-based approach implemented by • completed during the initial visit. Thorough assessments of the program allowed the staff to work closely with the parents • factors that place the children at risk for abandonment andlor and children as well as others in the home. The staff's ability to • abuse were conducted. Parent and Child Risk Factor forms were develop individuai relationships with the parents was integral • completed and indicated level ofrisks. to engaging the families in services as well as promoting parent development and enhancing the parent's relationship with • Initial Visit their child. The providers focused on supporting, affirming, and • The initial visit was crucial for it established trust by offering promoting bonding and attachment. genuine non-threatening support. The families received • The program iearned that observations of the home information highlighting length of services, level of intensity • environment and family dynamics increased the validity of ofthe program, confidentiality guidelines, and collaborative assessments and case service planning. Offering services in • approaches with other key providers (i.e., DCFS, courts, drug the home allowed the staff accessibility to everyone in the • treatment, mental health, schools). family and the ability to closely monitor risks and changes in • Following the Intake, the initial visit by the assigned provider home environment. Immediate interventions were also readily • was crucial to the continued engagement ofthe family in offered to families in crisis. The supportive multidisciplinary • services. The first visit with the assigned provider was a critical model addressed parenting concerns, psychosocial stressors, • session during which the follOWing was established: initial substance abuse, HIV, and mental health issues. Interventions • connection with the family; foundation for trust, rapport and concentrating on preventing out of home placement, positive relationship between c1ient(s) and provider developed; strengthening reunification, and supporting post permanency • follow up on the initially identified risk factors, as well as were offered. • families needs, were conducted. The initial session provided Family Support Workers, Substance Abuse Counselors (In a forum in which program services were outlined. Although • home Counselors), and FamilyTherapist coordinated services several forms were to be completed during the initial session, • aimed at reducing risk factors and improving family and child the core focus ofthe session was assessment and listening to • well-being. In-home sessions were designed to build on family the client as needs was presented. The family always had an • strengths and address challenges. Weekly home visits lasting opportunity to ask questions, seek clarity, express concerns as an average oftwo hours in length addressed the following: • well as decline services. • 1) Basic needs ofthe family: food, shelter, clothing, utilities and • Home-based Services healthcare; The uniqueness and strength of the program lay in the ability to 2) Child's needs: safety, physical, proper nutrition, exercise, rest • offer services in the families' natural home environment. Families and health care; • received twelve months ofvoluntary comprehensive prevention 3) Parent support and education: re-building relationships, • services and supports. Services consisted of: home-based communication with children, personal care, self-esteem, • counseling; case management; parenting education; and center access to services; based services. Home-visits were offered on a weekly basis, or 4) Counseling: crisis interv~ntion, conflict resolution, couples • as needed, and identified in the case plan. Although families issues, child development, bonding and attachment; • for the most part closed at twelve months, exceptions were • I. ·5) Health education: healthy behaviors and life style, HIVIAIDS • Staff conducted visits as a team when providing home visits in __• and other 5Tls; access to health care; drug use and impact high risk areas; and on the body and compromised immune systems; prenatal • Visits were scheduled during daylight and only in rare • substance abuse; circumstances would staff remain late during home visits. • 6) Recovery support: drug education, relapse prevention, • coping skills, impact of substance abuse on family unit, Service Planning andCoordination • access to drug treatment and twelve step programs; Case Plans were implemented to ensure that culturally • 7) Reunification services: understanding reunification process, relevant, family and child focused services were delivered. The; • navigating systems, advocacy, and compliance with court Plans served as the road maps to strengthening families and orders; • preventing child abandonment. They served as a starting point for identifying the goals ofthe family and to align them with • 8) Access of community resources: knowledge and utilization of the goals of the program. Staff's services and interventions • community resources; and were guided by quarterly Case Plans. Additionally, engaged • 9) Daily living skills: household management, budgeting, in Case Plan development, the clients were able to take • scheduling and managing multiple tasks and responsibilities, ownership and responsibility for personal improvements. self-sufficiency skills. • Case Plans helped identify the role ofthe client, family, and service provider in reaching goals. Furthermore, the Plans • 10) Permanency Planning: information and support to families helped identify strengths, presenting problems, and internal • impacted by HIV/AIDS in planning for future care oftheir children. and external resources. Case planning was a comprehensive • and coordinated process focused on strengthening families • Field Safety and promoting child well-being. The process led to desired • outcomes and allowed for the monitoring of progress. Home visiting provided a wealth ofteachable moments as well • as opportunities to conduct thorough assessments. The home • Project Milagro's Expected Outcomes based providers were well trained in managing unpredictability • and responding to crisis. The program considered personal • maintain at-risk infants/children in their own homes or those • safety and pfotection ofthe staff. Ongoing in·services and of their relatives; • supervision addressed taking protective measures as high • provide children with a safe and stable environment; • risk areas were served. Clinical supervision also assessed the staffs feelings and concerns to clarify if they were a result • build healthy relationships and sense of home, family and • of lack ofexperience, or from signs of impending danger. security; • When necessary, the Program Coordinator conducted home • reduce parental and environmental stress; • visits with the providers to assess the home environment. To • maximize worker safety, the program adapted the following • increase voluntary use of community resources; • safety measures: • decrease use of drugs and/or alcohol; I. • Work cell phones assigned to all home visitors; • increase knowledge of health promoting practices, treatment • • Supervisors cell numbers were provided to all staff; protocols, and reduce risk for prenatal exposed infants; • " • SuperVisor on Call calendar was established when immediate • improve health and mental health outcomes; '. supervisor was on vacation; • improve child developmental and health outcomes; • • Training in field safety and dealing with unpredictable home • • increase participants' social support systems; environments was offered regularly; • • strengthen family's ability to become self-sufficient; and • • Staff were encouraged to use emergency 911 numbers as appropriate; • increase knowledge on permanency planning by families • impacted by HIVIAIDS. • • • •tI- Team Approach for the program; oversight of case load management of staff; coordination of services; oversight of program evaluation; • Inter-agency, multi-disciplinary services were offered by a implementation of program design and documents; provide bilingual/bicultural team comprised of a Family Support quality assurance (file reviews); prepare program reports; • Worker, Substance Abuse Counselor, and Mental Health promote collaborative relationships with other community • Therapist. Administrative and clinical support was offered by based providers; and attend Community Collaborative and • the Director, Project Coordinator and Licensed Clinical Social Networking Meetings. Worker. The multi-level services involved family assessment, • Family Therapist provided indiVidual, family, couples family support, case management, advocacy, child assessment, • counseling to participants identified as having a need and parenting, health education, medical access, child reunification, receptive to mental health services. Mental Health Services • permanency planning, drug/ alcohol recovery support and were offered in the home environment and addressed issues • mental health services. related to substance abuse, HIVIAIDS and dual disorders. • Project Milagro's team approach was developed after a Family Support Worker concentrated on engagement of family • careful assessment ofthe needs of the target population. into the program. The Family Support Workers (FSW) acted as • Careful consideration was placed on ensuring that the case managers, counselors, teachers and sources of support program employed qualified and culturally responsive • for the family. The FSW modeled appropriate parenting, staff. Consequently, education levels, ethnic and gender • household management, and coping skills. The FSW identified considerations were made. Nevertheless, given budget the needs of the family by implementing Quarterly Case Plans • constraints the program had to compromise staffing patterns. and presented cases on a monthly basis during Case Reviews. • Staffing a mental health provider versus a child development Additionally, FSW were responsible for completing program • specialist was a trade off decision that was made early in the documentation (Progress Notes, evaluation assessments) and program design phase. Sessions carefully assessed the needs • ensure files were organized. • ofthe target population as well as available resources. The • program emphasized resources to ensure that the right staff In-Home Counselor (CAADACj offered recovery focused was employed. Careful consideration was placed on hiring supportive services. Services consisted of counseling, relapse • staff with the right personality. Beyond hiring skilled staff, prevention, parenting skills, reunification services, education • the program employed staff who were genuine and invested on caring for drug exposed infants, health education, • in serving disenfranchised communities. Other qualities and case management, resources and referrals. Additional • attributes that the program staff had were: responsible, reliable, responsibilities were: development and implementation of • flexible, worked well under pressure, and overall had a positive Quarterly Case Plans; participation in monthly Case Reviews; outlook on life. Additionally, the hired staff had diverse training completion of program documentation as required by the FSW. • and educational backgrounds in HIV/AIDS, substance abuse, Clinical Supervisor (LCSWj provided clinical supervision both • child development, and mental health issues. Staff members in individual (for Family Therapist) and group (Case Reviews/ were matched with program participants.This was crucial to • Conference) settings. The Clinical Supervisor reviewed and meeting the proposed goals of the program and ensuring • approved Case Plans and Case Review forms. • overall program success. Furthermore, the program set priority and funds towards staff development. supervision, and • Case Reviews andStaffSupervision provision oftechnical equipment. • Program staff received cross-disciplinary training through • StaffPatterns and Role Definitions participation in Case Reviews (a.k.a. Case Conferences). Case Reviews were scheduled a month in advance by the Project Program Coordinator was responsible for day-to-day Coordinator. All cases were reviewed once a month unless risk • operations ofthe program. Program Coordinator supervised factors increased requiring immediate case presentation. Case • direct line staff through individual. and group supervision. presentations were conducted weekly allowing for the latest • Responsibilities ofthe Program Coordinator included: information on family to be shared. Case Reviews as well as one ensuring the program operated at optimum level and meeting • on-one clinical supervision was offered by the Clinical Supervisor proposed program goals and objectives; conducting intakes • who acted as a guide and provided support to the team. • • Additionally, the Clinical Supervisor ensured proper supports closing cases, families were prepared and informed of the • and interventions to assure the safety ofthe children. tentative closing date. Additionally, partnering agencies and providers were notified ofthe programs plans to close the case - New enrollments were presented within a week following • (i.e., DCFS Social Workers). Prior to closing cases, the program intake. Assessment information gathered during the initial ensured that families had a safety net of services and, when • intake was presented during the initial Case Review. The initial possible, kinship supports (relative). Families requiring an • case presentation served to initiate an introductory plan of extension of services beyond twelve months were granted • action addressing any high risk issues. Ongoing monthly Case "carry-over" status. Extended services were applicable in Reviews allow for ongoing group supervision and consultation • cases such as: children were identified to be"at-risk" of child to take place. • abandonment or abuse at the twelve month mark; unstable Case Reviews were integral to effective service delivery for it • home environment; recent reunification; or recent disruption ensured the following: in care and custody ofchildren. Infrequently, cases closed • prematurely (prior to 12 months) due to: families' whereabouts • • delivery of culturally relevant, family and child focused became unknown; parent refused services; parent was non services; • compliant to services (missing appointments); or family moved • • interventions were aligned with the goals of the family and out ofthe service area. Standard program policy was to close the program; • cases after 30 days of inactivity. • • guided service delivery; ...... ;.' • • examination offamily strengths, needs, and presenting . problems; Five Stage Model • • identifying progress and steps towards family stabilization; of Permanency Planning ,.• • support to staff dealing with critical issues (i.e., high risk cases, Project Milagro responded to the permanency planning needs child safety, DCFS and court timeliness, challenging clients, • of parents living with HIVIAIDS. The program designed a five lack of resources); and • stage culturally responsive permanency planning model that •• • coordination ofservices across disciplines. was sensitive and critical to meeting the needs of families affected by HIVIAIDS. The model served both as a conceptual , • The program emphasized the importance of allowing families to define their needs and engage in the case planning process. framework and practical tool in educating families about future • The program's team focused case planning approach assisted care and custody planning. The Permanency Planning Model • in building the trust necessary to engage families at a deeper included the following stages: • level. This process required enormous patience and flexibility Stage 1: Assessing the Readiness ofthe Family; • for the needs ofthe families were often being identified by Stage 2: Education on Permanency Planning; • multiple parties: multiple family members; program team; and outside providers. Often, those at the table identified needs • Stage 3: Identifying a Future Guardian; ranging from basic to more complex needs, which were beyond • Stage 4: Securing the Plan; and the scope ofthe program. in cases where multiple professionals • were engaged in service delivery, careful planning and Stage S: Aftercare services. • prioritizing was taken into account in efforts to prevent adding • additional stress to the family. STAGE 1: Assessing the Readiness ofthe Family • Case Closing The goal ofthe program was that every HIV impacted family • would finalize a custody plan for their children in the event that • A team agreement on closing cases was important. Project they became incapacitated or died. The model was developed: Milagro's policy was to serve families for a period oftwelve • and implemented with a consideration ofthe families' needs months. When the families reached twelve months of services, and their willingness to address permanency planning. The • and completed the objectives delineated in the initial and model's approach was responsive to the multiple constraints • follow up Case Plans, it was time to close the case. Prior to • • • •__ and stressors that HIV impacted families faced. Due to the • limited knowledge and awareness in permanency nature and focus of permanency planning process, it was planning options; and • presented as a choice for parents and an opportunity to learn • Counter transference-the providers own thoughts and • about legal rights and options made available to parents who fears ofdeath. • are terminally ill and living in California. In efforts to provide • individualized permanency planning, each family was assessed STAGE 2: Education on Permanency Planning • as to their interest and willingness to learn about permanency planning. Areas for the provider to assess in Stage 1 Include: There are several options for the parent or family wishing to • participants level of trust; cultural and religious implications plan for the future care oftheir children. As a provider, it is • to permanency planning; family dynamics; families support important for you to identify what the best option is for the • system; the emotional status of the HIV positive parent; and family based on their unique circumstances. There are various • level of urgency in initiating the planning process. options that exist in California, both formal (legal) and informal (not filed in a court). Each option has benefits and drawbacks. Project Milagro encountered several challenges to • implementing the permanency planning model. Challenges In order for you to determine what option is best for the family, • were for the most part client related, yet a few provider consider answering the following questions: • challenges were also reported. The following barriers were • Does the parent have concerns about disclosing their HIV encountered: • diagnosis? • CLIENT CHAllENGES • Does the parent want to secure their decision by making a legal plan (filing in court)? • Psychosocial • • Poverty, isolation, limited resources, immigration factors, • Has the parent identified an alternative caregiver? • domestic abuse; • Is the alternative caregiver interested in assuming legal • • Fear of stigma due to HIV/AIDS diagnosis; responsibility should it ever be necessary? These are all very important areas to assess for they guide in • • Custody disagreements between biological parents; and • choosing the best suitable permanency plan option. Below are • • Fear ofthe legal system. the options available to parents living in California diagnosed with a terminal illness: • Psychological • • Response to grief, fear of death, denial of diagnosis; TESTAMENTARY GUARDIANSHIP ~ • • Parents equated disclosure with "harming their. ,Idren;" Testamentary Guardianship is a guardianship preference stated • in aWill or other written document, which goes into effect after • CUrrent drug use; • the custodial parent's death and following court approval. The • • Mental disorders (depression, anxiety); and custodial parent initiates Testamentary Guardianship and has • • Impaired cognitive function (AIDS related dementia nominated an alternative caregiver guardian in a Will. However, or memory loss). initiation of a future guardianship through a Will does not, in • and of itself, ensure that a court will appoint the person named • Cultural and Religious in the Will. Disadvantages to Testamentary Guardianships are • Fatalism-belief that God's Will will prevail; therefore, that nominations through Wills can be contested and do not • parenis refuse to take an active role in planning for the assist during temporary incapacitation ofcustodial parents. • future; and CAREGIVER'S AUTHORIZATION AFFIDAVIT • • Baptism-religious and cultural practices that informally California law recognizes a category of adults who have • imply alternative caregivers (godparents) for the child. • informally assumed responsibility for the care of minors • PROVIDER CHAllENGES residing with them. Through the Caregiver's Authorization Affidavit, a caregiver may enroll a minor in school and make • •Time constraints; • • school-related medical decisions. In some circumstances, a TEMPORARY GUARDIANSHIP • caregiver may authorize most types of medical care for the A petition filed to the court requesting an urgent appointment child. Completing this affidavit does not affect the rights - of a guardian. This appointment is temporary, usually 30 days • of a custodial parent or legal guardian regarding the care, until a regular guardianship hearing is scheduled. A temporary custody and control ofthe minor, and does not mean that • guardian can be nominated by the parent, the guardian or the designated caregiver has legal custody ofthe minor. The • the child 14 years ofage or older. The temporary guardian is affidavit is not filed in a court and not valid for more than a year • provided with immediate authorization for the child's care. after the date on which it is executed. • ADOPTION JOINT GUARDIANSHIP • Adoption is a permanent legal option. Adoption is most often • Joint Guardianship Law allows for the parent who suffers from an order filed by the Department ofChildren and Family • a terminal illness to designate someone who will participate in Services as a procedure to implement a permanency plan for the care ofthe child if and when the parent is no longer able to • children who have suffered abuse by their biological parents. provide for the child's daily needs. One of the most important • In these cases, foster care parents or relative caregivers adopt aspects ofthis law is that it allows the custodial biological • children. In adoptions, the rights of both parents must either parent the opportunity to share child custody with the be relinquished (voluntarily given up) or terminated by a court" • nominated caregiver. Further, custodial parents are permitted order. Adoptive parents assume all legal rights of adopted • to retain custody and care for their children even after the children, including but not limited to religion, education and I • joint guardianship has been granted. In most cases, this is the medical care. The majority ofterminally ill parents are not ready preferred option for parents filing for a caregiver guardianship. • to relinquish their rights as parents and therefore often do not' Joint Guardianship can also be applied in cases where two • chose adoption as a plan for the future care of their children. In parties other than the parent, petition the court for shared cases where a parent is deceased, the alternative caregiver (if • custody. In this situation, the primary caregiver may request not the other parent) can chose to file for adoption ofthe child. • assignment of a joint caregiver guardian for additional support • in raising the child. In order to file for Joint Guardianship, two STAGE 3: Identifying a Future Guardian conditions must be met first, the non-custodial parent must be • in agreement with the nomination ofthe caregiver guardian, Careful consideration needs to be given to choosing an • and second, the non-custodial parent does not contest the alternative caregiver. Unfortunately, it is common for parents to • petition submitted by the custodial parent. In addition, if the wait until an urgent need arises to identify either a temporary • court finds it in the "best interest"ofthe child to agree with or permanent caregiver. Making choices in times of urgency • the petition ofthe custodial parent, the joint guardianship does not lend to careful considerations or thoughts as to whom will be approved. Courts require for all non-custodial parents, • would best care fo", their children. Likewise, the nominated grandparents, and siblings ofthe child to be notified ofjoint caregiver may feel compromised to accept due to the urgency • guardianship requests. and not really consider the extent oftheir commitment. • In such situations, parents run the risk of securing only a Guardians are permitted by law to obtain medical treatment, • temporary placement followed by disruptions and at times and they are required to ensure the safety and educational • multiple unsuccessful placements.The process of identifying needs of the child. Guardians are also eligible to apply for • an alternative caregiver can be challenging; nevertheless, it is a : public benefits on behalf ofthe child. Upon the death ofthe crucial step in the parent's planning process. • custodial parent, the Joint Guardian caregiver becomes the • sole legal guardian ofthe child without any further court The following questions assist in the process of selecting an proceedings. Joint Guardianship appointments can be revoked • alternative caregiver: by the caregiver, minor who is of 14 years or older, the parent or • 1. Has the parent experienced past hospitalizations? the court. • o Yes; 0 No • 2. If yes, who cared for theirchildren during the hospitalization?; •• 3. Would this person care for their children long term or ;. permanently? • • •fi!- There are other important considerations in choosing the 3. Reasons why a court might find a nomination improper: alternative caregiver. We recommend that as a provider you a. a person who has been charged with neglecting or • help the parent explore the following: abusing a minor. • Is the potential caregiver of age (18 years or older) and in • b. a person who has been convicted ofa felony. • good health? c. other run-ins with the law depending on the crime, how long ·Is the potential caregiver aware ofthe parent's health • ago it was committed and the current lifestyle ofthe person. • condition? If not, how will he/she respond ifthey found out? 4. The minor and appointed guardian will be interviewed • Is the potential caregiver interested in assuming the • give before the court proceeding by an investigator who will responsibility permanently? • the judge a recommendation. • • Do the children have a relationship with him or her? 5. Non-custodial parents, grandparents, and siblings will be • • Would the other parent object to the nomination ofthe notified ofthe petition. • potential caregiver? • 6. Ifthe child is 14 years old or older, the child must consent to • Is there anyone who the parent absolutely would not want to the guardianship. • care for their children? • 7. After appointment of a guardian, the child's parents remain As the parent selects the future caregiver, it is important for legally responsible for supporting the child. While not a • them to know the court process for approving a nominated requirement, many guardians volunteer to accept this • guardian. Although there are no hard rules as to who is most responsibility. • appropriate to be a guardian, it is up to the discretion of the 8. At the request ofthe parent, the diagnosis ofthe parent can court to approve a nomination. The court will weigh many • be kept confidential during the hearing. • factors in making a decision to appoint a guardian. Judges in California follow guidelines provided by law in appointment • INVOLVING THE CHILDREN IN THE PROCESS ofguardians. Factors used to give guardianship preference • include: to one or both parents; to the person whom the child One ofthe many challenging decisions faced by parents • has been living in a stable environment; and to any person living with a terminal illness is whether or not to disclose their • determined suitable and able to provide adequate and proper health status to their children as well as finding the best time • care and guidance to the child (Goldoftas & Brown, 2000). to disclose. Disclosure ofa terminal illness to a child is one Ultimately, the most important consideration in naming a that requires thought and preparation as well as support and • guidance from professionals. Professional help can assist by guardian is the "best interest ofthe child:' • reducing the parent's worries and fears. Parents commonly Other important things to know before filing a legal • experience worries related to disclosure such as: is the child guardianship: • old enough to understand? Will the child keep the illness and • 1. The nominated guardian does not: information confidential? Additionally, parents often fear that disclosing their illness to their child will intensify acting • a. have to be a legal resident or citizen. out behavior or emotional probiems such as depression. The • b. have to be married or be a parent. following areas should be considered in determining the • appropriateness ofdisclosing the parents diagnosis to their c. have to be a relative ofthe child. • children: 2. The nominated guardian does have to: • • The age ofthe child(ren); • a. have a basic ability to "parent"the child. •The emotional status ofthe child(ren); • b. have an ability to provide the child with food, shelter, •The child's ability to keep the health status confidential if • clothing, and medical care. asked to. • c. be in fair health. • •The level of support available to the parent and family. • • •The child's past response to death (if applicable) or fears reduce unnecessary trips to the court and a prolonging of -it-• about dying. the court date. Based on our experience, we found the following tips have 7.lf eligible the parent may qualify for a fee waiver for filing th~ • been extremely helpful to parents as they continue in the petition. • process: • STAGE 5: Aftercare Services • avoid secretive talk around the children; • Aftercare support is crucial for a family that has completed a • avoid disclosure of health or plans in a moment of anger • permanency plan. In cases where the transition of children or frustration; • to the new caregiver has occurred, it is important that • ensure the children receive information from the parent for • comprehensive support is provided to assist in the adaptation this will maintain a level oftrust and security; process. Counseling, assistance with accessing resources, and • obtaining entitlements is important. Additional assistance • • open and honest communication with children, especially if they are of age to understand; and such as enrollment of children to new schools and identifying • medical resources are also important.The following is a list of • • maintain a consistent level of communication with those who resources available to parents or caregivers and the minors: support the parent. • FINANCIAL SUPPORT • It was learned that traditional and religious beliefs and • practices often provide valuable insights to parents who are CalWORKs Government benefits that provide financial support planning to discuss life and death issues to their loved ones. to parents or guardians and dependent children. Apply in • Tapping into alternative forms of support (i.e., spiritual) and person at the local Department of Public Social Services • guidance as well as to the past traditional practices that have (DPSS) or call (866) 613-3777. Contact can also be made via the, • been effective in facing and processing grief, death, and future. internet at www.ladpss.org. • Social Security Benefits Call the Social Security office at (800) • STAGE 4: Securing the Plan 772-1213 or contact via the internet at www.ssa.gov. • Securing the parent's wishes and plan is one ofthe most Social Security Disability (SSDI) pays monthly cash benefits to • important steps in permanency planning. disabled workers under age 65 and their dependents. • STEPS TO SECURING A PLAN Supplemental Security Income (SSI) pays monthly benefits to • people with low incomes and limited assets who are age 65 or . • 1. The parent decides on the approach they will take toward older, or individuals ofany age who are blind or disabled. securing the appointment ofa guardian (legal or an informal • appointment through a will or Caregivers Affidavit). Social Security Survivors Benefits pays monthly benefits to • family members ofa deceased person if he/she earned enough • 2.ln urgent cases (parent is in the end stages of life), filing for a "work credits:' Temporary Guardianship appointment is strongly suggested. • Food Stamps Monthly benefits for low income individuals to • 3. Contact the local Probate Court and request procedures purchase food through an electronic benefits transfer (EBT) for filing Guardianship. Most courts offer assistance either • card. Apply in person at the local Department of Public Social through the clerk or in-house legal clinic. • Services (DPSS) or call (866) 613-3777. Contact can also be • 4. Find out ifthere is an organization that assists with filing made via the internet at www.ladpss.org. legal Guardianship. • WIC Food and nutritional education programs for at-risk, low • 5. Set up an appointment with the legal clinic or walk in during income pregnant women, infants, and children under the age • walk in hours. offive. Call (888) 942-9675 or contact via the internet at www. fns.usda.gov. • 6. Prior to the appointment ensure that the parent has all the • necessary documents required to file a guardianship (birth Housing Call L.A. County Housing Authority at (800) 731-4663 , certificates, social security numbers, addresses etc.). This will • or contact via the internet at www.lacd.org. • • • • Section 8 provides low income housing through rent subsidies. result of their reluctance to disclose. Parents at times veiled or disgUised their disclosure by reporting to have an illness other • HOPWA Section 8 provides housing assistance to people liVing than HIV such as cancer or rare blood disorders. In a few cases, • with HIV/AIDs. parents with HIV were also reluctant to engage in permanency Shelter Plus Care provides rental assistance and support planning due to"hopes of immortality:' Parents found to be • assistance to low income individuals with disabilities. living in stable health were less likely to explore permanency • planning options. Such participants took into account the • HEALTH CARE highly publicized "idea"that ifthey remained compliant to • • Medi-Cal Public health financing program that provides free their medication regimen, they would live longer and that medical coverage for low income families and certain groups "death" was no longer an emerging threat. Program staff was • respectful ofthe parents' views and encouraged their hopeful of people (people eligible for CalWORKs and children in Foster • perspectives. Nevertheless, parents were encouraged to take Care). Call (800) 430-4264 or contact via the internet at www. • lacd.org. advantage ofthe specialized support provided by the Project • Milagro team. Overall, the program learned that the disclosure Healthy Families Low cost insurance program for children and process existed in a continuum, with parents conveying varying • teens that do not have insurance and do not qualify for free degrees of information to their loves ones. Parents tended to • Medi-Cal. Call (800) 880-5305 or contact via the internet at disclose as their illness progressed and often to older children. • www.healthyfamilies.gov. • To facilitate and expedite permanency planning process the • LEGAL ASSISTANCE project relied on the legal support of Public Counsel Law Center, a firm that offered free permanency planning services • Public Counsel Children's Rights Project Legal assistance in to HIV impacted families. Additionally, a workbook (attached) filling guardianships, adoptions and legal advocacy for minors • was developed to assist and guide parents through the process • with unmet educational needs. Call (213) 38s-2977or (800) 870 of planning for the future care oftheir children. Planning for the 8090. • Future Care of My Children workbook was made available to • HALSA Free legal advocacy and services for HIVlAIDs impacted participants in English and Spanish. families. Call (323) 993-1640. • ...... • Legal Aid Foundation ofLos Angeles Legal advocacy, • representation and education for low income individuals. Call (800) 399-4529 or contact via the internet at www.lafla.org. Building Bridges Through • Community Partnerships • Special ImmigrantJuvenile Status Legal residency for children under the age of 21 (must not be married). Children must • Project Milagro placed an emphasis on building community be dependent of the juvenile court or abandoned by their partnerships that were responsive to the needs of families • parents to be eligible. Call Pro Per Clinic at (21 3) 893-1030 or affected by substance abuse and HIVlAIDs. The development • Dependency Court's Special Immigrant Status Unit at (323) of this web of support required investment by the front line 725-4667. • providers as well as the Coordinator. This was instrumental • in ensuring the families served were linked to services and LESSONS LEARNED- PROFESSIONAL TO PROFESSIONAL • resources. Collaborations were developed with organizations • Several lessons were learned in the years of implementing that concentrated on the following areas: parent education; • the permanency planning model. The most important lesson Early Care and Education; maternal and child health; mental was the importance of honoring the parents'wishes and health; child welfare; legal clinics; children with disabilities; • control oftheir future. Additionally, It was important to respect alcohol and substance abuse prevention and treatment • the parents desire to maintain their illness confidential. The programs. Specific partnerships were developed with: LA • program staff ensured the parents at all times felt a sense of County USC Medical Center HIV Unit; Women and Children's • control oftheir decision to disclose as well the timing and to Maternal Health Clinic; housing entities such as Salvation Army • whom. Unfortunately, parents often lived in confinements of Alegria and Holloywood Housing; HUD; Section 8; Institute • secrecy and experienced increases psychological distress as a ofWomen's Health substance abuse out patient program; • • Public Council Law Firm; and non-traditional partners (Faith community providers (resources) was further examined by • Community Church). The primary goai ofProject Milagro was the evaluation. Tracking logs were used to collect process .. preventing child abandonment through direct strategies data. Health status and substance abuse usage, including • emphasizing strengthening the families' protective capacity. prenatal drug exposure and generationai substance abuse, We, Nevertheless, the program realized the need to provide collected using the Health survey. The Parent/Child Risk Factor • direct care services to the children as well as the adult Survey examined risk factor prevalence rates for children and • parents. Limitations due to staffing patterns, and a model parents and/or primarycaregivers. Child well being outcomes • that emphasized on family stabilization led to engagement assessed safety, permanency, child development, behavioral, • of community resources that focused on the needs of emotional and health status using risk factor assessments, • the children. Linkages to Early Care and Education, local developmentai screenings and child-focused testing. Family • Regional Centers offering specialized services to children with well being outcome indicators included assessment of disabilities, and child care centers were established. parenting stress using the Parent Stress Index-Short Form; • mental health conditions were evaluated by the Health Related , • ...... Quality of Life and CES-D depressive symptom scale; health ' • status was obtained by the project's Health Forms for HIV and • Project Evaluation Substance Abuse; acculturation levels were determined using • the Short Acculturation Scale-Hispanic; and psychological distress factors were evaluated as subsections from the • The evaluation assessed process and outcome variables related to the achievement of the project's service goals and strategies. HRQOL measure. The evaluation additionally captured data • The evaiuation captured the program model's strengths and on permanency outcomes for children. These were: child • weaknesses; successful and unsuccessful strategies; and placement, child abuse report history, and current DCFS case • culturally competent practices for evaluating Latino families. In status (voluntary maintenance plan, open-case). • this project, the lead evaluator worked closely with project staff • to assess progress; identify barriers and challenges; and assist Evaluation Methods and Procedures with data collection protocols and assessment tools. • Project Milagro, through the evaluation effort, tested the • efficacy ofa culturally specific evidence based home based Qualitative andQuantitative Data Collection model for preventing infant and child abandonment among • The evaluation implemented data collection procedures Latina women ofchild bearing age impacted by HIV/AIDS • that were practical for participants and project staff. The and Substance Abuse. The evaluation was based on past data • overarching goal ofthe evaluation was to capture effective collection and outcome analyses to examine the project's • strategies that promoted child safety, permanency, and family services and strategies. • and child well being. Parallel to this framework, the evaluation • examined the culture-specific practices using measures Evaluation Design • that provide assessed outcomes for children, parents and The project's comprehensive methodology utilized a quasi families. Descriptive data was obtained for the sample's socio • experimental design with a series of measures to effectively characteristics, demographic variables, socio-cultural variables • assess the project's goals and objectives. Project Milagro's such as ethnicity, country of origin, primary language and home based modei provided comprehensive services and • number of years in the U.s., family composition and housing interventions with a number ofexpected short-term and • status. The evaluation provided an enriched assessment of long-term outcomes. The evaluation design incorporated • race/ethnicity that moved beyond general United States measurements of the multiple outcomes. The quasi Census data, by acknowiedging the heterogeneous elements • experimental design applied to the current project was feasible when studying Latinos. • and most appropriate for community-based organizations. Despite the need for experimental control groups to determine • Process variables included types and nature ofthe ongoing service needs and services provided to meet the program causal effects, the current trend in evaluating community • needs of children and their families; service utilization rates; programs is to utilize and apply a more realistic and useful I • and project capacity building activities (e.g. stafftrainings). The design. In this design, participants were assessed as their own, • project's collaboration process with other culturally competent control using baseline measurements. The study used a pre and • • • •~ post-test design with baseline, six month and twelve month linguistic needs of the target population and the usefulness of data collection time points. the instrument to project staff. The instruments were in part, consistent with the AlA Cross-site data collection plan, and can • be used for case planning and screening tools for children and Sample • families. For some measures, normative data for Latino women Participants comprised substance abusing Latinas and their • with children and/or Hispanics is limited; however, the project affected children and Latinas liVing with HIV/AIDS and their • has established a database with respective referent means. children. The participants consisted oftwo groups: HIV/AIDS The projeci administered and collected the AlA cross-site form, • and Substance Abuse. Data was obtained from biological PSI and SHIF required by the Children's Bureau AlA evaluation. • mothers, children and in some cases, fathers and caregivers. The following instruments were used for the evaluation ofthis • Process evaluation Process evaluation provided information project: • on project planning, patterns of service needs and utilization, • and implementation.This level ofevaluation yielded Data Collection Instruments • information on the various aspects ofthe project's strategies utilized. Information collected for process variables included: Bienvenidos Intake Agency form used to enroll clients and • identify service needs. Form provides demographics. • outreach efforts, staff trainings, participant service utilization rates, participant completion and attrition rates, participant Safety IFamily Assessment Form (FAF) The form provides a • satisfaction with program services, referrals and linkages, and standardized assessment offamily functioning and service • the program's ability ofthe project to meet the cultural and planning for families. The project utilized the "safety" domain to • linguistic needs ofthe participants. assess child safety in the environment and family's stability and • Outcome evaluation The outcome evaluation measured the functioning to meet child's safety needs. • attainment of measurable project goals. Participants were Parent/Child Risk Factor Survey This is a 2S item checklist that • assessed at baseline, 6 months (posttest 1) and 12 months identifies parent risk factors and child risk factors based on • (posttest 2). Measurements were evaluated at each point and current stressors, problems and past experiences, incidents. patterns ofchange over time were examined. Participants • Developmental Screening Form This questionnaire comprising the project's two groups: HIVIAIDS and Substance • Abuse were assessed for within group and between group was developed by the evaluator to identify and screen • changes the project's outcomes. developmental risks and age appropriate functioning. Parent Stress Index-SF (PSI) This survey assesses life stress, • Data collection procedure The evaluation team worked • closely with project staff to provide hands on training on parenting efficacy, parenting stress, parent -child bond and • administering and completing the evaluation forms. The child behaviors. This measure is used in the AlA Cross-Site • project staff was bilingual and bicultural, and administered Evaluation. The PSI long form and short form have been used in the instruments in English or Spanish. Prior to data collection, the AlA Project Milagro evaluation.This standardized tool has • a reliability of.87 for current sample. The PSI Short Form was each participant was asked to sign a consent form for the • used in the project and has a published Spanish version. evaiuation component (see Appendix B). Consent forms were • available in Spanish and English. The evaluation utilized a CES-DThis 20 item self-report measure assesses at risk levels • repeated measurement design for collecting the project's of Depression and has been used with Latinas for the past 2 • data. Data was collected at baseline, 6 months (posttest 1) decades. This screening tool is currently used in the project and • and 12 months-program completion (posttest 2). Because the obtained a reliability of .86. target population is transient, homeless, migrate to different • Developmental Profile 11- This is a child development measure counties or impacted by HIV related heaith difficulties, post that examines physical, self-help, cognitive, language and • test1 provided termination data for those clients receiving less • services. social development for children ages 3 months to 10 years old. The DPII was used to assess child participants aged Syears and • Data collection instruments Selecting measures that older. • adequately assess project goals, objectives, process and Ages andStages Questionnaire This is a child development • outcome variables'must take into account the cultural and • measure that examines physical, self-help, cognitive, language • • and social development for children ages 3 months to 5 years Appendices •II- old. The ASQ was used to assess children up to 5 years old. Appendix A: Job descriptions for positions Health Related QualityofLife This self-report tool provides 1. Family Support Worker • perceived level of quality of life using 9 indicators ofphysical, 2. In-home Counselor • 3. Therapist emotional, psychological and mental well-being for individuals • dealing with a health condition. The HRQOL (Rand, 1999) was Appendix B: Evaluation instruments 1. Bienvenidos Intake Farm • developed primarily for HIVIAIDS males although the current 2. Parent/Caregiver Risk Factor Survey: I + ii project used this measure. Reliabilities for both the iong version • 3. Child Risk Factor Survey: i +ii (15 domains) and short form for our current sample were.79 to .89. 4. CES-D • 5. Short Acculturation Scale for Hispanics (SASH) ShortAcculturation Scale for Hispanics This measure identifies • 6. Social Support cultural and linguistic practices in the home and socially. 7. Medical Access Farm [English and Spanish] • It provides a continuum from low acculturation to high 8. Family Assessment Form (FAF Safety scale) • 9. Health Related Quality ofLife Survey acculturation among Hispanics. 10. Coping Survey [English and Spanish] • Client Satisfaction Survey This survey will be administered 11. Health Interview Survey for HIV/AIDS • 12. Substance Abuse Health Interview at termination and will assess participant's satisfaction with 13. Changes in HomelEnvironmentI Family Log • specific services and linkages provided by the progra~. 14. Client Satisfaction Survey for AlA Family Programs • 15. Copyright Instruments ,. Changes in Home/EnvironmentForm This tracking tool will 16. Informed Consent Form for Treatment and Evaluation , identify changes in service needs andlor family composition • Appendix C: Program Documents that impact child and family well being. 1. In-home Visit Progress Report • 2. Case Plan Linkages/Referrals Form This form is an ongoing tracking form • used to identify needs, referrals and linkages. Appendix D: Pragram Brochure • Appendix E: Planning for the Future Care • ...... ~ . ofMy Children Workbook • References • David Brown, Lisa Goldoftas (2000) The Guardianship Book for • California: How to Become a Child's Legal Guardian 3rd Edition. • Lessons Learned from Abandoned Infants Assistance Projects: • Assessing and Supporting Parenting in Families Affected by • Substance Abuse and HIV 2007. • Santiago-Rivera, Azara, (2003). Latino Values and Family • Transitions: Practical Considerations for Counseling. Retrieved • November 14, 2008 from http://findarticles.com. • The project's instruments appear in Appendix B. Spanish • versions used are also included. Instruments with copyright • rules are not provided in this manual. • Health Survey Interview A short health survey developed by • the evaluation was used to assess HIV women and Substance • Abuse women. Different versions applicable to HIV or • Substance abuse were developed. • • • • • 'Appendix A: Job Descriptions • 1. JOB DESCRIPTION: Family Support Worker 2. JOB DESCRIPTION: In-Home Counselor • Organization Mission Statement: Bienvenidos Children's Organization Mission Statement: Bienvenidos Children's Center, Inc., (B.C.C.) Is a state licensed private non-profit, Center, Inc., (B.ee) Is a state licensed private non-profit, • nonsectarian, child/family welfare agency offering services nonsectarian, child/family welfare agency offering services • throughout Los Angeles County. B.C.Cs mission is to throughout Los Angeles County. B.eCs mission is to • strengthen vulnerable families and to support and encourage strengthen vulnerable families and to support and encourage • the healthy development oftheir children. the healthy development of their children. • Job Title: Family Support Worker, Full Time Position Job Title: In-Home Counselor, Full Time Position • Program Coordinator Program Coordinator • Supervisedby: Supervised by: • Classification: Salary/Exempt Classification: Salary/Exempt • Duties andResponsibilities: Duties andResponsibilities: • • Conduct home visits, comprehensive assessments assessing • Conduct home visits, comprehensive assessments assessing • risk ofchild abuse and/or child abandonment. risk of child abuse and/or child abandonment. • • Provide counseling and case management services to • Provide counseling and case management services to • children, youth and families impacted by HIVIAIDS. children, youth and families impacted by HIV/AIDS and/or Substance Abuse. • • Provide linkages and referrals to families (transportation and • advocacy in the community). • Provide Parenting Education, and information on Child • Development. • Meet with identified families in their home environment as • prescribed by the family support plan. • Meet with identified families in their home environment as • prescribed by the family support plan. • Complete all necessary documentation according to project • protocol (monthly documentation, intake and evaluation • Coordinate transportation services to clients and their • documents). families. • Actively participate in regularly scheduled interdisciplinary • Complete all necessary documentation according to project • case conferences with Project Support Team and individual protocol. • supervision with Program Coordinator. • Actively participate in regularly scheduled interdisciplinary • • Meet with Program Supervisor for supervision. case conferences with Project SupportTeam and individual • supervision with Program Coordinator. • Conduct outreach activities (participate in outreach events, • and community presentations). • Conduct outreach activities in the community (presentations, • distribution of program material). • • Participate in program and BFS meetings. • Other activities as required to conduct program and agency • Other activities as required to conduct program and agency • objectives. • objectives. Qualifications: • Qualifications: • Bachelor's Degree in Social Work, Psychology or related • • Bachelor's Degree in Social Work, Psychology or related discipline and/ or CAADAC. • discipline and a minimum oftwo years of practical experience • in the field ofsocial services. •A minimum of one year of practical experience in the field of HIV/AIDS, Substance Abuse and Child Welfare. • • Bilingual! Bicultural (Spanish Speaking): Class 3 Drivers • License. • Bilingual/Bicultural (Spanish Speaking): Class 3 Drivers License • 1 • ,., I., 3. JOB DESCRIPTION: Family Therapist • Organization Mission Statement: Bienvenidos Children's '. Center, Inc., (B.C.C.) Is a state licensed private non-profit, • nonsectarian, child/family welfare agency offering services • throughout Los Angeles County. B.C.C:s mission is to strengthen • vulnerable famiiies and to support and encourage the healthy • development of their children. • Jab Title: Family Therapist, Full Time Position • Supervised by: Program Coordinator • Classification: Salary/Exempt • Duties and Responsibilities: • • Conduct thorough psycho-social assessments for children, • youth and participating project families that are impacted by • substance abuse and/or HIViAIDS. • • Provide intensive home-based counseling and therapy to • adults and families. • • Meet with identified families in their home environment as • prescribed by the f~mily support plan. • • Complete all necessary documentation according to project • protocol. • • Participate in regularly scheduled interdisciplinary case • conferences with Project SupportTeam. • • Meet with Project Coordinator and Clinical Supervisor for • direct supervision. • • Dther duties as assigned ·(Le., facilitate groups for families • impacted by HIV/AIDS, conduct presentations in the • community). • Qualifications: • • Master's Degree in Social Work, Psychology or related discipline, and; • •A minimum of two years ofclinical experience in the field of HIViAIDS. Substance Abuse and Child Welfare. • • Bilingual/Bicultural (Spanish Speaking); Class 3 Drivers License • • • 2 • • • • Appendix BI Project Milagro Evaluation- Intake • Bienvenidos Family Services Bienvenidos • Date of Initial Intake • 10# • SPA# • District# • Name: • Relation to Child DOB • Address • CiVStaleJZIP • Phone: Message Phone • Martial status code Ethnic Code Years in Us Country of Origin _ • Primary language in home 1-English 2 - Spanish 3-other _ 4-Bilingual 5.5.# (optional) _ Educational status Work/Employment status Health Insurance Status • 00 Elementary Education only 01 Does not work 01 MEDI-CAL 01 Number of years of Education completed _ 02 Seeking employment 02 HMO • 02 GED 03 Working part-time 03 Healthy Families 04 Working full-time 04 No Insurance • Other _ In SchooI1-Full-time 2-Part-time 3-No Source of Income ($): TANF/GR. Food Stamps Employment, _ • SSI___ Spouse. _ • Number of household families to be served: Adults. Children, _ Biological Mother Biological Father • (Complete below only ifapplicable) (Complete below only if applicable) • Martial Stalus Code__ Martial Status Code Work Code Ed.Code War!< Code Ed. Code • DaB Resides in the home Yes No__ Resides in the home Yes No • -- DaB -- -- Mother's Father's • Name Name I • Comments: Comments: • • Program Assignment Assigned to: 1-AIA 9-Family Support 9 ELA 9 Covina • 2-1733 1O-Project Corazon 9BFS 9HSA 1-Coordinator 3-IWH ( Substance Abuse) 11-Wraparound • 4-Family Preservation 9 ELA 9 Covina 12-eALWORKS 2-Case Worker 5- Clarity 13- Joven Noble 9 FED 9STATE 6-HEAl 14- Fatherhood 9 Teen 9 CLP Opening date: I I • 7-CSBG 15- Health Center • 8-Project Escuelita 16 Other Closing date: I I • 3 • • Previous BFS Services: YesfNo Which program: _ • STATUS OF DCFS/DPSS CASE: • I-None 2-Family Preservation 3-Permanency Planning 4-Emergency Response 5-Adoptions 6-Closed case 7-Reunification 8 • Maintenance • DCFS Case # ---:---::-- Office _ • (Optional) CSW _ Phone# _ •.. Date oflnitial Involvement _ Date ofInitial Placement _ •, Placement History _ • Attorney's name ______,Phone# _ • DPSS-Case Worker _ Case # _ Tel. # _ • • CHILDREN • # Name I Ethnic Code F 1M 0081 Parent Placement Date of Code Reunification • AGE • 1 FfM • 2 F/M • 3 F/M 4 • F/M I 5 F/M • 6 F/M • 7 F/M •.. 8 F/M 9 FI M •.. 10 F/M • .., CHILDREN'S RISK FACTORS Risk Factor Child # Risk Factor Child # .. I 1 Behavior problems ...... NOlle 2 3 4 5 6 7 8 9 10 Low birth weight...... None 2 3 4 5 6 7 8 9 10 • Caloric deprivation ...... fl.'one 2 3 4 5 6 7 8 9 10 Motor impairment...... None 2 3 4 6 7 8 9 10 • Cardiac anomalies...... None 2 3 4 5 6 7 8 9 10 Neonatal drugs or alcohol...... None 2 4 5 6 7 8 9 10 • Is placed oul of the home ...... None 2 3 4 5 6 7 8 9 10 No prenatal care...... None 2 3 4 5 6 7 8 9 10 .. Developmental delays...... None 2 3 4 5 6 7 8 9 10 Prematurely...... None 2 3 4 5 6 7 8 9 10 Down's Syndrome...... None 2 3 4 5 6 7 8 9 10 seizures...... None 2 3 4 5 6 7 8 9 10 Failure-to-ttllive...... None 2 3 4 5 6 7 8 9 10 Severe emotional disturbance...... Nonc 2 3 4 5 6 7 8 9 10 • Hearing impairment...... r..one 2 3 4 5 6 7 8 9 10 Sleep apnea syndrome...... None 2 3 4 5 6 7 8 9 10 .." History of placements...... None 2 3 4 5 6 7 8 9 10 Vision impairment...... Nonc 2 3 4 5 6 7 8 9 10 .. Learning disability...... None 2 3 4 5 6 7 8 9 10 Other...... None 2 3 4 5 6 7 8 9 10 • •.. ..• 4 • • • PARENT/CAREGIVER RISK FACTORS • Teen Parent. __ . 1-Yes 2-No Poverty . 1-Yes 2-No • Pregnant Teen (Due Oate -1).... 1-Yes 2-No Isolation 1-Yes 2-No • Current Substance abuse . 1-Yes 2-No Presently homeless . 1-Yes 2-No • History of substance abuse (drug of choice 1-Yes 2-No History of homelessness . 1-Yes 2-No Rent or Own . 1·Yes 2-No • Living with others, _ • History of substance abuse dUring pregnancy . 1-Yes 2-No Substandard living/temporary housing.. 1-Yes 2-No • Domestic abuse-emotional or physical. . 1-Yes 2-No Physical Disabilities . 1-Yes 2-No • Victim: childhood physical, emotional sexual abuse . 1·Yes 2-No Developmentally disabled . 1-Yes 2-No • History of being identified as abusive ,. 1-Yes 2-No Illiterate . 1-Yes 2-No • Court identified as abusive . 1·Yes 2-No Health Insurance . 1-Yes 2-No • Court identifies as neglectful... 1·Yes 2-No History of employment 1-Yes 2-No • Poor parenting skills . 1·Yes 2-No History of incarceration 1-Yes 2-No • History of Mental illness 1·Yes 2-No (Date~: -----ll...... Poor job skills. ," . 1-Yes 2-No Criminal Status: . . 1·Probation 2~Parole 3~No • Other _ 1-Yes 2-No Current Medication 1-Yes 2-No • Services Request and Linkages • SERVtCES REQUESTED REFERRED TO: • o Advocacy o After school Program o Prenatal Care • o Anger Management o Case Management o Recovery Support • o Case Management o ChildcarelDay Care o Regional Center • o Counseling o Concrete Services o Psychological Evaluation • o Concrete Services o Domestic Violence o Sexual Abuse Counseling • o Court Services o E.S.L. o Special Education • o Crisis Intervention o Educational Evaluation o Support Groups • o Domestic Violence o Family Counseling o Transportation Services • o Employment Counseling. o Financial Assistance o Other: • o Fatherhood Classes o Food Assistance • o In-Home Services o Health Services • o Self-Help Groups o HIVIAIDS Services • o Parenting Classes a English a Spanish o Housing Assistance • o Respite Services o Independent Living Program • o Substance Abuse: Education Recovery o Individual Counseling • o Teen's Girl's Group o In-Home Support • o Teen Male Group o Job Readiness • o Transportation o Mental Health • o Workshops o Mommy & Me • o Other (Specify) o Parent Education • 5 • 'I F'!"""~~~~~!!!!!!!!!!!!!~~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!~!!!!!!!!!!!!!~!!!!!!!!!!!!!!!!!!!!!!~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!~.• NARRATIVE - ., .. .." _',e. : ::T' '.' 'S~': ~',: I f------ FOLLOW·UP: • • •, • ~ = ...... ===~=== • Referring...... agency_~_:_-:-c::_:---....,....-----==...... Contact:--::,---,=_.,..,...... ,...-.,..,..._.."...,,..,..._.,..,..,....-.,.-...... ===...... ====...".__ Referred by: 1-Hospital 2-Substance abuse program 3-DCFS 4-Self/friendlrelative 5-Mental Health • L6::.-...:S;::h:::e::;lt:;:e:..,T.-:..7.:.-~Ju::::d;::i::;:ci:::a:..,1 -.::8::-R:..:::;eg~i:::on:.::a:::I..::C~e:;.n:::te::r_...:9:...-..::B:::.F..:.F.:.:.A::.-.-:..1 O:::-:...:O::.t::::h:;:e:.:r======------.l'1t Code Box " • Ethnic Code Martial Slatus Resides withleurrent Placement Ust) 1-Anglo 1-Married 1-Home wI parent, no CPS involvement 7-Foster Family Care • 2-Hispanic 2-Divorced 2-Home wI parent CPS involvement 8-Group home/shelter 3-AfricanJAmerican 3-Separated 3-Adoptive home parent 9-ResidentiaJ treatment with • 4-Asian 4-Widowed 4-W/relative, informal placement 10-Residential treatment w/o parent 5-Pacific Islander 5-Domestic Partner 5-W/relative, foster care 11-Hospital • 6-American Indian 6-Single 6-Non·relative, informal placement 12-Homeless shelter w/parent 7-Other 9-N/A 13-W/relative - Legal Guardianship • 9-N/A .. Client's Signature _ Date _ • Intake taken by: _ .. •.. •-, 6 • • • In Case of Emergency Contacts • Name: Phone: • Relationship: Address: • Name: Phone: • Relationship: Address: • • Medical Problems • • Special Medical Problems: • • Family Doctor: • Name of Clinic/Hospital: • Phone: • • Child/Children to be released to: • • Name: Phone: • - • Relationship: Address: • Signature: Date of release: • Name: Phone: • Relationship: Address: • Sianature: Date of release: • • 7 • Appendix 82-i Project Milagro Evaluation Parent/Caregiver Risk Factors '. 'i.• BFS 10 #: _ PROJECT MILAGRO Today's Date: _ • ET SEQ #: _ Abandoned Infants Assistance Intake Date: • ----- • Baseline Parent/Caregiver Risk Factors • Please complete during the Initial Intake/Referral for those parents/primary caregivers who are currently residing with chi/d(ren) participating in Project Mi/agro • Name Retationship to child • Caregiver 1: • Caregiver 2: • Piease check the following items that place parents/caregivers at risk and thereby potentially limit the chi/d(ren) 's ability • to develop normally (within the social, emotional, physical, cognitive and adaptive domains) • • Section 1: Past Risk Factors (occurring during caregivers' childhood or longer than 6months agol • Caregiver • 1 2 • 1. Witnessed domestic abuse as achild (specify type: physical_ emotional_) .. o 0 • 2. Victim of domestic abuse (specify type: physical_ emotional_) . o 0 • 3. Grew up in a household with substance abuser(s) (specify drug(s): ). o 0 • 4. Substance abuse (specify drug(s): ) . 0 • o , 5. Substance abuse during pregnancy (specify drug(s): ) .. o 0 • 6. Victim of childhood abuse (specify type: physical_ sexual_ emotional_ neglecL) .. o 0 • 7. Court identified as abusive ineglectful .. o 0 • 8. Homelessness/shelter/unstable living situation .. o 0 • 9. Developmental delays/learning disability . o 0 • 10. Physical disability (specify: ) . o 0 • 11. Mental disorder (specify: ) .. o 0 • 12. Chronic/long term medical illness (specify: ) . o 0 • 13. Multiple incarcerations .. 0 • o • continued on next page • Note: Requests to duplicate this instrument/fonn can be forward to Lourdes Carranza, Project Manager at Bienvenidos, address • 8 • • • • • Section 2: Current Risk Factors (occurring within last 6months) • Caregiver • 1 2 • 14. Victim of domestic abuse (specify type: physical_ emotional_l ," .. ,, 0 0 • 15. Marital/Partner discord ,, , ,...... 0 0 • 16. Pregnant (Date due: ) 0 0 • 17. Substance abuse (specify drug(s): ) 0 0 • 18. Court identified as abusive/neglectful...... 0 0 • 19. Children detained by DCFS (during the past year) .. 0 0 • 20. Poor/limited parenting skills , ,..... 0 0 • 21. Poor/limited job skills , , , 0 0 • 22. Poverty , , ,...... 0 0 • 23. Isolation ,,, , ,...... 0 0 • 24. Presently homeless ,...... 0 0 • 25. Substandard living/temporary housing...... 0 0 • 26. Unemployed for most or all of the past year...... 0 0 • 27. Inadequate or no health insurance 0 0 • 28. Developmental delays/learning disability...... 0 0 • 29. Physical disability (specify: ) 0 0 • 30. Mental disorder, asymptomatic (specify: ) • 0 0 • 31. Symptomatic mental illness (specify: ) 0 0 • 32. Medical illness, expected to improve (specify: ) 0 0 • 33. Taking medication for medical or psychological condition 0 0 • 34. Incarcerated during the past year.... 0 0 • 35. Probation/parole during the past 12 months...... 0 0 • 36. /IIiteracy: unable to read...... 0 0 • 37. Illiteracy: unable to write 0 0 • 38. Caring for a disabled/ill person in the same household...... 0 0 • 39. Caring for a medically fragiie child or child with special needs 0 0 • 40. Experienced a traumatic event (specify: ) 0 0 ' • • • • 9 • !. Appendix B2-ii Project Milagro Evaluation - Parent/Caregiver Risk Factors Completion :. BFS ID#:, _ PROJECT MILAGRO Today's Date: _ Abandoned Infants Assistance Intake Date: • ET SEQ#: _ !.I • Completion Parent/Caregiver Risk Factors • :.I Please complete during the Initiallntake/Referrat for those parents/primary caregivers who are currently residing with child(ren) participating in Project Milagro !.• Name Relationship to child I. Caregiver 1: • Caregiver 2: • Please check the following items that place parents/caregivers at risk and thereby potentially limit the child(ren) 's ability • to develop normally (within the social, emotional, physical, cognitive and adaptive domains) • • Section 1: Past Risk Factors (occurring during caregivers' childhood or longer than 6months agol • Caregiver • 1 2 • 1. Witnessed domestic abuse as a child (specify type: physical_ emotional_l ,. o 0 • 2. Victim of domestic abuse (specify type: physical_ emotional_) ,, ". o 0 • 3, Grew up in ahousehold with substance abuser(s) (specify drug(s): ) .. o 0 • 4. Substance abuse (specify drug(s): ) " .. o 0 • 5, Substance abuse during pregnancy (specify drug(s): ) . o 0 • 6. Victim of childhood abuse (specify type: physical_ sexual_ emotional_ neglect_I . o 0 .,• 7. Court identified as abusive Ineglectful ' , ,. o 0 8. Homelessnesslshelterlunstable living situation , . o 0 •It 9. Developmental delaysllearning disability " ,. o 0 10. Physical disability (specify: ) . o 0 • 11. Mental disorder (specify: ) . o 0 • 12. Chronic/long term medical illness (specify: ) . o 0 • 13. Multiple incarcerations ,''' ,.. o 0 •.. continued on next page • •, •.:, 10 • • • BFS 10#: _ PROJECT MlLAGRO Today's Date: _ • Abandoned Infants Assistance Intake Date: • ET SEQ #: _ • Completion Parent/Caregiver Risk Factors • Section 2: Current Risk Factors (occurring within Jast 6months) • Caregiver • 1 2 • 14. Victim of domestic abuse (specify type: physical_ emotional_) . o 0 • 15. Marital/Partner discord .. o 0 • 16. Pregnant (Date due: ) . o 0 • 17. Substance abuse (specify drug(s): ) . o 0 • 18. Court identified as abusive/neglectful . o 0 • 19. Children detained by DCFS (during the past year) .. o 0 • 20. Poor/limited parenting skills . o 0 • 21. Poor/limited job skills .. o 0 • np~~ . o 0 • 23. Isolation .. o 0 • 24. Presently homeless , .. o 0 • 25. Substandard living/temporary housing .. o 0 • 26. Unemployed for most or all of the past year . o 0 • 27. Inadequate or no health insurance .. o 0 • 28. Developmental delaysllearning disability . o 0 • 29. Physical disability (specify: ) . o 0 • 30. Mental disorder, asymptomatic (specify: ) . o 0 • 31. Symptomatic mental illness (specify: ) .. o 0 • 32. Medical illness, expected to improve (specify: ) . o 0 • 33. Taking medication for medical or psychological condition .. • o 0 • 34. Incarcerated during the past year .. o 0 • 35. Probation/parole during the past 12 months .. o 0 • 36. Illiteracy: unable to read .. o 0 • 37. Illiteracy: unable to write .. o 0 • 38. Caring for a disabled/ill person in the same household .. o 0 • 39. Caring for a medically fragile child or child with special needs .. o 0 • 40. Experienced a traumatic event (specify: l . o 0 • • • " Appendix B3-i Project Milagro Evaluation - Child Risk Factors Form • BFS 10 #: _ PROJECT MllAGRO Today's Date: _ Abandoned Infants Assistance • ET SEQ#: _ Intake Date:------• Child's Name: Child's Age: • Baseline Child Risk Factors/Developmental Screening • Please complete this assessment during the Initiallntake/Refe"al for index child participating in Project Milagro • Please check any of the following factors which may impact age-appropriate development in the areas of social (behavioral, • relationship), emotional, physical (motor), cognitive (learning, language) and independent (self-help skills) functioning. • Section 1: Past Risk Factors (occurring prior to birth or longer than 6 months ago) • Yes No • 1. Lack 01 prenatal care or 'well baby" pediatric care (date of last physical exam _1_) . 0 0 • 2. Preterm birth . 0 0 • 3. Low birth weight . 0 0 • 4. Prenatal drug exposure (specify drug(s): ) .. 0 0 • 5. Expo~ure to substance abuse in the household (specify drug(s): ). 0 0 • 6. Exposure to domestic violence . 0 0 • 7. Victim 01 abuse or neglect (specify type: ) .. 0 0 • 8. Out-ol-home placement(s) . 0 0 • 9. Unstable housing (homelessness, shelters, more than 2 moves in a year) . 0 0 • • Section 2: Current Risk Factors (occurring within last 6months) Yes No • 10. Lack 01 "well child" pediatric carel immunization (date of last physical exam _1_ ). 0 0 • 11. Inadequate nutrition, caloric deprivation or anemia (specify: ) . 0 0 • 12. Chronic health problem (specify: ) . 0 0 • 13. Exposure to substance abuse in the household (specify drug(s): ). 0 0 • 14. Exposure to domestic violence : .. 0 0 .. 15. Victim 01 abuse or neglect (specify type: ) . 0 0 •.1 16. Death of a parent or other member of household with significant relationship to child . 0 0 • 17. Other significant traumatic event (specify: ) .. 0 0 • 18. Lack of stable family composition (absentee parent, changing caregivers) .. 0 0 • 19. Out-ol-home placement... .. • 0 0 • 20. Unstable housing (homelessness, shelters, more than 1move in past 6 months), . 0 0 • 12 • •.' • BFS ID#: _ PROJECT MllAGRO Today's Date: _ • Abandoned Infants Assistance • ET SEQ #: _ Intake Date:, _ • Child's Name: Child's Age: • Baseline Child Risk Factors/Developmental Screening • Section 3: Developmental Screening Please indicate any of the following conditions that have been formally diagnosed by a medical or other professional, or • which have been observed or suspected by either the intake examiner or the chi/d's caregiver, For undiagnosed conditions, • check only if the problem is expected to have a significant impact on the chi/d's norma/ development. Formally Observed / Suspected • by: • Physical conditions: Diagnosed Examiner Caregiver • 1, Cardiac anomaly",,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, 0 o 0 • 2, Motor/physical impairment (specify: ) '" 0 o 0 • 3, Asthma/respiratory problem ,,,,.. , ,...... 0 o 0 • 4. Hearing impairment."""""""""""""""""."".".""."".""."""""." 0 o 0 • 5. Vision impairment""""""""""."""."".""" """"""""."""""". 0 o 0 • 6. Failure-to-thrive ."...... ,,, ...... ,,".. ", .. ,,".,,,,.,, ,,,,,,.,,,,,,,,,,,,,.,,.,, , 0 o 0 • 7. Fetal Alcohol Syndrome """""".. """.. "".. """""."."".. """".... " ,,. 0 o 0 • 8. Seizures"."."""".. ,.".".... ".".".. """..... " .. """.""."."""".. ".".",,,,, 0 o 0 • 9. Cerebral palsy .. "'"''''". "."". ". " .. " "."",". """"."". ".,,,,,,, ". " .. " "'". o o 0 • 10. Other neurological disorder (specify: ) ". o o 0 • 11. Congenital HIV - asymptomatic ...... """"""""".""".. "".""."".. "".. ,, o o 0 • 12. Symptomatic HIV infection "".. """."""""""... ""...... """.. """ """"". o o 0 • 13. Other chronic medical condition (specify: ) ". o o 0 • Mental and Emotional/Behavioral conditions: • 14. Down syndrome"" .... " .. """.. " .. """."""""".""""""""".. """".. "" 0 o o • 15. Pervasive Developmental Disorder/Autism".""".""... "".. """"".""""... 0 o o • 16. Other developmental delay (specify: ) '" 0 o o • 17, Severe emotional disturbance (specify: ) ". 0 o o • 18. Attention Deficit Disorder (or ADHD) """... " .. ".""""""""".... " ...... ,, 0 o o • 19. Other learning disability (specify: ) ". 0 o o • 20. Behavioral problem (specify: ) ". 0 o o • 21. Other mental health disorder (specify: ) ". 0 o o If the examiner or chi/d's caregiver suspects that the child has special needs based on a condition not listed above, please • provide a detailed description below: • • 13 • Appendix B3-ii Proiect Milagro Evaluation - Child Risk Factors Completion Form • BFS 10 #: _ PROJECT MILAGRO Today's Oate: _ Abandoned Infants Assistance • ET SEQ #: _ Intake Oate: _ • Child's Name: Child's Age: • Completion Child Risk Factors/Developmental Screening • Please complete this assessment at termination for index child participating in Project Milagro • Please check any of the following factors which may impact age-appropriate development in the areas of social (behavioral, • relationship), emotional, physical (motor), cognitive (learning, language) and independent (self-help skills) functioning. • Risk Factors to or 6 • Section 1: Past (occurring prior birth longer than months ago) • Yes No • 1. Lack of prenatal care or "well baby" pediatric care (date of last physical exam _1_ ) . 0 0 • 2. Preterm birth . 0 0 • 3. Low birth weight . 0 0 • 4. Prenatal drug exposure (specify drug(s): ) . 0 0 • 5. Exposure to substance abuse in the household (specify drug(s): ) .. 0 0 • 6. Exposure to domestic violence . .. 0 0 7. Victim of abuse or neglect (specify type: ) .. 0 0 • 8. Out-of-home placement(s) .. 0 0 • 9. Unstable housing (homelessness, shelters, more than 2 moves in a year) .. • 0 0 •, Section 2: Current Risk Factors (occurring within last 6months) • Yes No • 10. Lack of "well child" pediatric carel immunization (date of last physical exam -,_) .. 0 0 • 11. Inadequate nutrition, caloric deprivation or anemia (specify: ) .. 0 0 • 12. Chronic health problem (specify: ) . 0 0 • 13. Exposure to substance abuse in the household (specify drug(s): ). 0 0 • 14. Exposure to domestic violence .. .. 0 0 15. Victim of abuse or neglect (specify type: ) .. 0 0 • 16. Oeath of a parent or other member of household with significant relationship to child .. .. 0 0 17. Other significant traumatic event (specify: ) .. 0 0 • 18. Lack of stable family composition (absentee parent, changing caregivers) .. 0 0 • 19. Out-of-home placement.. . 0 0 • 20. Unstable housing (homelessness, shelters, more than 1move in past 6 months) .. 0 0 • •, .'.;, 14 ••• • BFS 10#:, _ PROJECT MILAGRO Today's Date: _ • Abandoned Infants Assistance • ET SEQ#:, _ Intake Date: _ • Child's Name: Child's Age: • Completion Child Risk Factors/Developmental Screening • Section 3: Developmental Screening Please indicate any of the following conditions that have been formally diagnosed by a medical or other professional, or • which have been observed or suspected by either the intake examiner or the child's caregiver. For undiagnosed conditions, • check only ifthe problem is expected to have a significant impact on the child's normal development. Formally Observed I Suspected • by: • Physical conditions: Diagnosed Examiner Caregiver • 1, Cardiac anomaly...... 0 o 0 • 2. Motorlphysical impairment (specify: ) 0 o 0 • 3. Asthmalrespiratory problem 0 o 0 • 4. Hearing impairment...... 0 o 0 • 5. Vision impairment...... 0 o 0 • 6. Failure-to-thrive 0 o 0 • 7. Fetal Alc.ohol Syndrome 0 o 0 • 8. Seizures...... 0 o 0 • 9. Cerebral palsy...... 0 o 0 • 10. Other neurological disorder (specify: ) 0 o 0 • 11. Congenital HIV - asymptomatic...... 0 o 0 • 12. Symptomatic HIV infection 0 o 0 • 13. Other chronic medical condition (specify: ) 0 o 0 • Mental and Emotional/Behavioral conditions: • 14. Down syndrome 0 o o • 15. Pervasive Developmental Disorder/Autism 0 o o • 16. Other developmental deiay (specify: ) 0 o o • 17. Severe emotional disturbanCe (specify: ) 0 o o • 18. Attention Deficit Disorder (or ADHD) 0 o o • 19. Other iearning disability (specify: ) 0 o o • 20. Behavioral problem (specify: ) 0 o o • 21. Other mental health disorder (specify: ) 0 o o If the examiner or child's caregiver suspects that the chitd has special needs based on a condition not listed above, please • provide detailed description below; • a • • 15 • • Appendix B4 Project Milagro Evaluation - CES-D • Below is a list of some of the ways you may have felt or behaved. Please circle how often you have felt this way rare/yor most or • during the past week none of some of all of • the time the time occasionally the time • under 1 1-2 3-4 5-7 • day days days days • 1. I was bothered by things that usually don't bother me 1 2 3 4 • 2. I did not feel like eating; my appetite was poor 1 2 3 4 • 3. I felt that I could not shake off the blues even with help 1 2 3 4 from my family or friends • 4. I felt that I was just as good as other people 1 2 3 4 • 5. I had trouble keeping my mind on what I was doing 1 2 3 4 • 6. I felt depressed 1 2 3 4 • 7. I felt that everything I did was an effort 1 2 3 4 • 8. I felt hopeful about the future 1 2 3 4 • 9. I thought my life had been afailure 1 2 3 4 •, 10. I feltfearful 1 2 3 4 • 11. My sleep was restless 1 2 4 • 3 •, 12. I was happy 1 2 3 4 • 13. I talked less than usual 1 2 3 4 • 14. I felt lonely 1 2 3 4 • 15. People were unfriendly 1 2 3 4 • 16. I enjoyed life • 1 2 3 4 • 17. I had crying spells 1 2 3 4 • 18. I felt sad 1 2 3 4 •e 19. I felt that people disliked me 1 2 3 4 ~ e 20. I could not get "going" 1 2 3 4 " •.: e Note: Requests to duplicate this instrument/form can be forward to Lourdes Carranza, Project Manager at Bienvenidos. 316 W. 2"" Streeet, Suite 800, Los Angeles, CA 90012. .'e l 16 e, e • • Appendix B-5 Project Milagro Evaluation - Short Acculturation Scale for Hispanics • Client ID: _ Group: D HA D SA D HS • Date oflntake: _ • Today's Date: _ • PRE only • Total Score= _ • SASH • A. English • I. In general, what language(s) do you read and speak? • 2 3 4 5 • DDD DD Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 2. What was the Language(s) you used as a child? • I 2 3 4 5 • 0 0 D 0 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 3. What language(s) do you usually speak at home? • I 2 3 4 5 • 0 0 0 D 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 4. In which language(s) do you usually think? • 1 2 3 4 5 • 0 0 0 0 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 5. What language(s) do you usually speak with your friends? • 1 2 3 4 5 • 0 0 0 0 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • • 17 • • • 6. In what language(s) are the TV programs you usually watch? • 2 3 4 5 • 0 0 0 0 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 7. In what Ianguage(s) are the radio programs you usually listen to? • I 2 3 4 5 • 0 0 0 0 0 • Only Spanish better Both Equally English better only English • Spanish than English than Spanish • 8. In general, in what language(s) are the movies, TV, and radio programs you prefer to watch and listen to: '.• I 2 3 4 5 • 0 0 0 0 0 • Only Spanish better Both Equally English better only English Spanish than English than Spanish • 9. Your close friends are: • I 2 3 4 5 • 0 0 0 0 0 • Only More Latinos About half More Americans All Americans Latinos than Americans and half than Latinos • 10. You prefer going to social gatherings/parties at which the people are: • I 2 3 4 5 • 0 0 0 0 0 • Only More Latinos About half More Americans All Americans • Latinos than Americans and half than Latinos • II. The persons you visit or who visit you are: •It I 2 3 4 5 • 0 0 0 0 0 • Only More Latinos About half More Americans All Americans Latinos than Americans and half than Latinos •., 12. Ifyou could choose your children's friends, you would want them to be: .' I 2 3 4 5 • 0 0 0 0 0 .' Only More Latinos About half More Americans AU Americans .'., Latinos than Americans and half than Latinos 18 • • • • Appendix B5 Project Milagro Evaluation - Short Acculturation Scale for Hispanics (Spanish) • • Client ID: Group: 0 HA 0 SA 0 HS • Date ofIntake: _ • Today's Date: _ • Total Score= --- • SASH ]0 • • A. Spanish • 1. Por 10 general, que idioma(s) lee y habla usted? • 1 2 3 4 5 • 0 0 0 0 0 • solo Espafiol Espanol mejor Ambos por Ingles mejor Solo Ingles • Que Ingles igual Que Espano! • 2. Cual fue el idioma(s) que hablo cuando era niiio(a)? • 1 2 3 4 5 • 0 0 0 0 0 • solo Espanol Espanal mejor Ambospor Ingles mejor Solo Ingles • Que Ingles igual Que Espafiol • 3. Por 10 general, en que idioma(s) habla en su casa? • 1 2 3 4 5 • 0 0 0 0 0 • solo Espanol EspaDo) mejor Ambospor Ingles mejor Solo Ingles • Que Ingles igual Que EspanoI • 4. Por 10 general, en que idioma(s) habla en su casa? • 1 2 3 4 5 • 0 0 0 0 0 • solo Espanal EspanoI mejor Ambospor Ingles mejor Solo Ingles • Que Ingles igual Que Espafiol • 5. Par 10 general, en que idioma(s) habla con sus amigos(as)? • 1 • 2 3 4 5 • 0 0 0 0 0 solo Espanol Espafiol mejor Ambos por Ingles mejor Solo Ingles • Qoe Ingles igual Que Espafiol • • 19 • • • 6. Por 10 general, en que idioma(s) son los programas de television que usted ve? • 2 3 4 5 • 0 0 0 0 0 • solo Espanol Espanol mejor Ambos por Ingles mejor Solo Ingles • Que Ingles igua) Que Espanol • 7. Por 10 general, en que idioma(s) son los programas de radio que escucha? • 1 2 3 4 5 • 0 0 0 0 0 • solo Espafiol Espanol mejor Ambospor Ingles rnejor Solo Ingles • Que lugles igual Que Espafiol i. 8. Por 10 general, en que idioma(s) prefiere oir y ver peliculas, y programas de radio y television? • I 2 3 4 5 • 0 0 0 0 0 • solo Espanol Espanol mejor • Ambospor Ingles mejor Solo Ingles Que logics igual Que Espafiol • 9. Sus amigos y amigas mas cercanos son? • 1 2 3 4 5 • 0 0 0 0 0 • solo Latinos Mas Latinos que Ambos por Mas Americanos solo Americanos Americanos igual que Latinos • 10. Usted prefiere ir a reuniones sociales!fiestas en la cuales las personas son: • I 2 3 4 5 • 0 0 0 0 0 t!t solo Latinos Mas Latinos que Ambospor Mas Americanos solo Arnericanos Americanos igual que Latinos • II. Las personas que usted visita 0 que lo(a) visitan son? • 2 3 4 5 • 0 0 0 0 0 .. solo Latinos Mas Latinos que Ambospor Mas Americanos solo Americanos Amcricanos igual que Latinos • 12. Si usted pudiera escoger los amigos(as) de sus hijos(as), quisiera que ellos(as) fueran: • I 2 3 4 5 • ..i 0 0 0 0 0 solo Latinos Mas Latinos que Arnbospor Mas Americanos solo Americanos • Americanos igua1 que Latinos •i 20 • • • Appendix B6 Project Milagro Evaluation - Social Support • o Baseline Date: D Completion (Post): _ • Client's Name: Client BFS ID#: _ • Circle of Support Form • Think of the people in your life who help you cope with your HIVIAIDS or substance abuse. Using the Circle of Support diagram, list • the people who you feellhat you can count on and that are inside your circle ofsupport. Please list in order of importance. • ! Supportive Person # 1: \ • What relationship do you have with this person? • Complelely Very Much Somewhat Alittle bit Not at all 1. How much can you rely on this person for practical support? 0 0 0 0 0 • (financial, household, transportation, childcare, etc.). • Completely Very Much Somewhat Alittle bit Not al all • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain he/she I think he/she I'm sure he/she Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • • What relationship do you have with this person? Completely Very Much Somewhat Alittle bit Not at all • 1. How much can you rely on this person for practical support? 0 0 0 0 0 (financial, household, transportation, childcare, etc.). • Completely Very Much Somewhat Alittle bit Not at all • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 3. Does this person know about your HIVIAIDS I am certain he/she I think he/she I'm sure he/she Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • • What relationship do you have with this person? • Completely Very Much Somewhat Alittle bit Not al all 1. How much can you rely on this person for practical support? 0 0 0 0 0 • (financial, household, transportation, childcare, etc.). • Completely Very Much Somewhat Alittle bit Not at all • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain he/she I think he/she "m sure heJshe Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • 21 • • • Supportive Person # 4: • What relationship do you have with this person? • Completely Very Much Somewhat Alitllebit Not at ali • 1. How much can you rely on this person for practical support? O· 0 0 0 0 • (financial, household, transportation, childcare, etc.). Completely Very Much Somewhat Alittle bit Not at ali • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain he/she I think he/she I'm sure helshe Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • Supportive Person # 5: • What relationship do you have with this person? :. ~. Completely Very Much Somewhat Alitlle bit Not at all 1. How much can you rely on this person for practical support? 0 0 0 0 0 • (financial, household, transportation, childcare, etc.). • Completely Very Much Somewhat Alittle bit Not at ali I 2. How much can you rely on this person for emotional support? • 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain he/she I think helshe I'm sure he/she Yes, I told •, or Substance Abuse? helshe knows knows does not know him/her 0 0 0 0 • _..__._... __._._._--"-"~------~ • Supportive Person # 6:! • What relationship do you have with this person? • Completely Very Much Somewhat Alittle bit Not at ali • 1. How much can you rely on this person for practical support? 0 0 0 0 0 • (financial, household, transportation, childcare, etc.). ., Completely Very Much Somewhat Alittle bit Not at ali 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain helshe I think helshe I'm sure he/she Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • • •., .1, .:; 22 • • • Supportive Person ii?: ... i • What relationship do you have with this person? I • Completely Very Much Somewhat Alittle bit Not at all • 1. How much can you rely on this person for practical support? 0 0 0 0 0 (financial, household, transportation, chi/deare, etc.). • Completely Very Much Somewhat Alittle bit Not at all • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain helshe I think helshe I'm sure helshe Yes, I told • or Substance Abuse? helshe knows knows does not know himlher • 0 0 0 0 • , Supportive Person # 8: • What relationship do you have with this person? • Completely Very Much Somewhat Alitllebit Not at all • 1. How much can you rely on this person for practical support? 0 0 0 0 0 (financial, household, transportalion, childcare, etc.). • Completely Very Much Somewhat Alitlleblt Not at all • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person 'know about your HIVIAIDS I am certain he/she I think he/she I'm sure he/she Yes, I told • or Substance Abuse? he/she knows knows does not know him/her • 0 0 0 0 • • What relationship do you have with this person? • Completely Very Much Somewhat Alittle bit Not at ali • 1. How much can you rely on this person for practical support? 0 0 0 0 0 (financial, household, transportation, childcare, etc.). • Completely Very Much Somewhat Alittle bit Notatall • 2. How much can you rely on this person for emotional support? 0 0 0 0 0 • 3. Does this person know about your HIVIAIDS I am certain helshe , think helshe I'm sure he/she Yes, I told • or Substance Abuse? he/she knows knows does not know himlher • 0 0 0 0 • • • Note: Requests to duplicate this instrumentlfonn can be forward to Lourdes Carranza, Project Manager at • Rienvenidos, 3 t6 W. 2nd Street, Suite 800, Los Angeles, CA 90012. • 23 • • Appendix B7 Project Milagro Evaluation - Medical Access • Client ID: _ Group: 0 HA 0 SA 0 HS • Timeline: Baseline 12 Months _ Today's Date: _ I.• Medical Access Fonn • I. IfI need hospital care, I can get admitted without any trouble? • o strongly agree • o somewhat agree o uncertain • o somewhat disagree • o strongly disagree • 2. It is hard for me to get medical care in an emergency. I.• o strongly agree o somewhat agree • o uncertain • o somewhat disagree o strongly disagree • 3. Sometimes it is a problem to cover my share ofthe cost for a medical visit. • o strongly agree o somewhat agree • I o uncertain • o somewhat disagree • o strongly disagree • 4. Sometimes I go without the medical care [ need because it is too expensive • o strongly agree o somewhat agree • o uncertain I o somewhat disagree • o strongly disagree • 5. The c1inic(s) I attend should be open for more hours than it is. • o strongly agree o somewhat agree • o uncertain • o somewhat disagree • o strongly disagree • 6. I have easy access to the medical specialist I need. • o strongly agree • o somewhat agree • o uncertain \ o somewhat disagree • o strongly disagree .: •.\I 24 • • • • Medical Access form/Client ID# Timeline: 0 Baseline 0 12 months • 7. Places where I can get medical care are very conveniently located. • D strongly agree • D somewhat agree • D uncertain D somewhat disagree • D strongly disagree • 8. If I have a medical question, I can reach a doctor or nurse practitioner for help. D strongly agree • D somewhat agree • D uncertain • D somewhat disagree • D strongly disagree • 9. 1am able to get medical care whenever I need it. • D strongly agree • D somewhat agree D uncertain • D somewhat disagree • D strongly disagree • 10. The medical staff understands my Hispanic (or ~) culture. D strongly agree • D somewhat agree • D uncertain • D somewhat disagree • D strongly disagree • II. The medical staffcan communicate with me in my native language (Spanish /English/ other). • D strongly agree D somewhat agree • D uncertain • D somewhat disagree ••• D strongly disagree • • • • • 25 • Appendix B7 Project Milagra Evaluation - Medical Access (Spanish) • • Client 10: Group: 0 HA 0 SA 0 HS • Timeline: Baseline 12 Months _ Today's Date: _ • Medical Access Form • I. (,Si necesito cuidado de hospitalizaci6n, me pueden ingresar sin ningun problema? o Estoy muy de acuerdo •••• o Estoy algo de acuerdo o No estoy segura •• o Estoy algo de desacuerdo • o Estoy muy en desacuerdo • 2. (,Me resulta dificil obtener cuidado medico en una emergencia? o Estoy muy de acuerdo •• o Estoy algo de acuerdo • o No estoy seguro • o Estoy algo de desacuerdo ., o Estoy muy en desacuerdo • 3. De vez en cuando es problematico'cubrir mi porci6n del costo de una visita de cuidado' medico • o Estoy muy de 'acuerdo •,. o Estoy algo de acuerdo ,. o No estoy segura o Estoy algo de desacuerdo .. o Estoy muy en desacuerdo • 4. De vez en cuando no recibo el cuidado medico que necesito porque es demasiado caro • o Estoy muy de acuerdo • o Estoy algo de acuerdo o No estoy segura • o Estoy algo de desacuerdo • o Estoy muy en desacuerdo • 5. Esta clinica deberia de estar abierta mas horas de 10 que esta abierta en actualidad It o Estoy muy de acuerdo o Estoy algo de acuerdo • o No estoy segura .. o Estoy algo de desacuerdo • o Estoy muy en desacuerdo .. 6. Tengo acceso facil a los medicos especialistas que necesito • o Eswy muy de acuerdo o Estoy algo de acuerdo •.. o No estoy segura ., o Estoy algo de desacuerdo o Estoy muy en desacuerdo .',.1,, 26 • • • • Medical Access Form I Client 10# Timeline _ • 7. Los lugares donde puedo recibir cuidado medico estan ubicados en lugares locales • o Estoy muy de acuerdo • o Estoy algo de acuerdo o No estoy segura • o Estoy algo de desacuerdo • o Estoy muy en desacuerdo • 8. Si tengo una pregunta medica, puedo comunicarme con un medico 0 enfermera para que me presten ayuda • o Estoy muy de acuerdo • o Estoy algo de acuerdo • o No estoy segura o Estoy algo de desacuerdo • Estoy muy en desacuerdo • o • 9. Puedo recibir cuidado medico cuando 10 necesite o Estoy muy de acuerdo • o Estoy algo de acuerdo • o No estoy segura • o Estoy alga de desacuerdo • o Estoy muy en desacuerdo • 10. El personal medico entienden mi cultura hispana(0) • o Estoy muy de acuerdo • o Estoy algo de acuerdo o No estoy segura • o Estoy algo de desacuerdo • o Estoy muy en desacuerdo • Jl. El personal medico se comunican con migo en mi idioma (Espanoi/lngies/otro). o Estoy muy de acuerdo • o Estoy algo de acuerdo • o No estoy segura • o Estoy algo de desacuerdo • o Estoy muy en desacuerdo • • • • 27 • • Appendix B8 Project Milagro Evaluation Family Assessment Form: Safety Domain • • Today's Date: _ DHA DSA DHS BFS ID# _ • ET ID#~ _ • AlA Project Milagro • Safety Assessment (FAF-Section A) • Section A: Livina Conditions Use scorina key # Baseline 12 month • Score Score • 1 Cleanliness/Orderliness - Outside Environmental • Conditions. Refers to environmental health and hygiene ,. factors (e.g. litter, garbage, vermin, c1uller, odors around the exterior of the home) that are Not within the family's control. • 2 Cleanliness/Orderliness - Outside Home Maintenance • Refers to environmental health and hygiene factors (e.g. liller, • garbage, vermin, c1uller, odors around the exterior of the home) • that Are Within the family's ability to control. Assesses family's willingness and ability to maintain clean, orderly • environment. .. , 3 Cleanliness/Orderliness - Inside Home Maintenance • Refers to litter, garbage, cleanliness, feces, vermin, cluller, and • odors in home. Does not refer to cleanliness of people in home. Assesses health hazards and physical neglect issues that Are • Within the family's control. .. 4 Safety - Outside Environmental Conditions • Refers to condition of building in terms of danger as well as • functioning of utilities. If a rental, assesses conditions that are • generally Not Within family's control. .. 5 Safety - Outside Home Maintenance Refers to caregiver's thoughtfulness as regards to safety • precautions. Assesses conditions that • Are Within family's control. • 6 Safety -Inside Home Maintenance Refers to caregiver's thoughtfulness as regards to safety • precautions in the home. Assesses conditions that Are Within .. the family's control. ... Note: Requests to duplicate this instrumentlfonn can be forward to Lourdes Carranza, Project Manager at • Bienvenidos, 316 W. 2"' Street, Suite 800, Los Angeles, CA 90012. • •, 28 • • • • Appendix B9 Project Milagro Evaluation - Health Related Quality of Life Survey • HEALTH·RELATED QUALITY OF LIFE • Client Id.# _ Timeline: 0 Baseline 0 12 Months • Today's Date: _ Group: 0 HA 0 SA 0 HS • Medicallllness:, _ A1. I'm going to read you a list of activities. Please tell me if your health limited you .a..1QJ;, • ~ or not at all in doing each of these activities in the past four weeks. IF R SAYS • HE/SHE DOES NOT DO ACTIVITY FOR REASON OTHER THAN HEALTH, CODE 3 - NOT • LIMITED AT ALL. • (Circle One Number on Each line) YES, YES, NO, • LIMITED LIMITED NOT LIMITED • AJ.QI A LITTLE AT ALL • B08AOIA a. Vigorous activities, such as running, lifting heavy • objects, participating in strenuous sports? ...... 2 3 • B08AOIB b. Climbing one flight of stairs? 1 2 3 • B08AOIC c. Walking more than a mile? 1 2 3 • B08AOlD d. Walking one block? 1 2 3 • B08AOIE e. Bathing or dressing yourself? .. 2 3 • B08AOIF f. Preparing meals or doing laundry? 1 2 3 • B08AOIG g. Shopping? 1 2 3 • B08AOlH h. Getting around inside your home? ...:...... 1 2 3 • B08AOll i. Feeding yourself? 1 2 3 • A2. During the past four weeks. has your health prevented you from (READ ACTIVITY) a\l...Qf • the time, some of the time, or none of the time? • (Circle One Number on Each line) YES, FOR YES, FOR • ALL OF SOME OF NONE OF • THE TIME THE TIME THE TIME • B08A02A a. Working at a job, doing work around the • house, or going to school? :...... 1 2 3 • B08A02B b. Doing certain kinds or amounts of work, • housework, or schoolwork? 1 2 3 • B08A02C c. Taking care of paperwork for health insurance • or medical bills? 1 2 3 • 29 • • '.• A3. During the past four weeks, how many days did your health cause you to stay in bed for 1/2 a day or more? • B08A03 DAYS: • NOTE: FOR CAPI, RESPONSE CAN'T BE >28. • A4. During the past four weeks, how much did pain interfere with your normal work (including work outside the house and housework)? Would you say: • B08A04 (Circle One) '.• Not at all, 1 • A little bit, 2 • Moderately, 3 I Quite a bit, or...... 4 '.• Extremely? S • • AS. During the past four weeks, to what extent has your physical health or emotional • problems interfered with your normal social activities with family, friends, neighbors, or groups? Would you say: • B08AOS (Circle One) • Not at all, 1 • A little bit, 2 .. Moderately, 3 • Quite a bit, or...... 4 • Extremely? S .. • AG. In general, would you say your health in the past fours weeks was: • B08A06 (Circle One) • Excellent, 1 • Very Good, 2 • Good, 3 • Fair, or. 4 • , Poor?...... 5 ..• •I 30 • • • • Client Id.# _ Timeline: 0 Baseline 0 12 Months • Today's Date:, _ Group: 0 HA 0 SA 0 HS • Medicallllness:, _ A7. (HAND R CARD #35) Please indicate the extent to which the following statements are • t!:lre or ~ for you during the past four weeks: • (Circle One Number on Each Line) • DEFINITELY MOSTLY • DON'T MOSTLY DEFINITELY • !1M. !1M. JiliQW EALS.E EALS.E B08A07A a. I seem to get sick a little easier • than other people...... 1 2 3 4 5 • B08A07B b. I have been feeling bad lately...... 1 2 3 4 5 • • AB. (HAND CARD #36) How much of the time during the past four weeks (READ ITEM), Would you say all of the time, most of the time, a good bit of the time, some of the • ~, a little of the tjme, or none of the time? • (Circle One Number on Each Line) • A GOOD A UTILE ALL OF MOST OF BIT OF SOME OF OF NONE OF • THE TIME THE TIME THE TIME THE TIME THE TIME THE TIME • BOBA08A a. Have you felt calm and • peaceful? ...... 1 2 3 4 5 6 • B08A08B b. Have you felt downhearted • and blue? ...... 2 3 4 5 6 • B08A08C c. Did you feel tired? ...... 1 2 3 4 5 6 • B08A08D d. Have you been a happy • person? ...... 1 2 3 4 5 6 • B08A08E e. Have you been a very • nervous person? ...... 1 2 3 4 5 6 • B08AOBF f. Did you have enough • energy to do the things • you wanted to do? ...... 1 2 3 4 5 6 • B08A08G g. Have you felt so down in the • dumps that nothing could • cheer you up? ...... 1 2 3 4 5 6 • B08A08H h. Have you been anxious or • worried? ...... 1 2 3 4 5 6 • B08A08I I. Have you felt depressed? .. 2 3 4 5 6 • 31 • '.:. '.'I • A9. During the past four weeks. how much of the time has your physical health or emotional '." problems interfered with your social activities (like visiting with friends. relatives, etc.)? These answer choices are a little different. Would you say: '.• (Circle One) '. B08A09 All of the time. 1 • Most of the time. 2 • Some of the time. 3 • A little of the time, or...... 4 • None of the time? 5 • '.• A10. How much bodily pain have you had during the past four weeks? Would you say: • (Circle One) •~ B08AIO None. 1 Very mild...... 2 • Mild. 3 • Moderate ~...... 4 • Severe, or 5 • Very severe? 6 • .- • • • • • • •.. It 32 • • • Appendix 89 Project Milagro Evaluation - Health Related Quality of Life Survey (Spanish) • • HEALTH·RELATED QUALITY OF LIFE • Clienlld.# _ Timeline: 0 Baseline 012 Months • Today's Date: _ Group: 0 HA 0 SA 0 HS • Medicallllness:, _ A1. Voya leerle una lista de actividades. Par favor digame si su saluda Ie ha limitado mucho, un • poco 0 nada al hacer cada una de estas actividades en las ultimas cuatro semanas. IF R SAYS • HE/SHE DOES NOT DO ACTIVITY FOR REASON OTHER THAN HEALTH, CODE 3 - NOT LIMITED AT ALL. • (Circle One Number on Each Line) • SI. LO HA SI, LO HA NO, NO LE • L1MITADO L1MITADO HA L1MITADO • MUCHO UN POCO NADA a. l,Actividades fuertes, como correr, levantar • objetos pesados, participa,r en deportes fuertes? ...... 1 2 3 • b. l,AI subir un piso de escaleras/gradas? ...... 1 2 3 • c. l,AI caminar mas de una milia? ...... 1 2 3 • d. l,AI caminar una cuadra? ...... 1 2 3 • e. l,AI baiiarse 0 vestirse?...... 1 2 3 • f. l,AI preparar comida 0 lavar la ropa? ...... 1 2 3 • g. l,AI ir de compras? ...... 1 2 3 • h. l,AI hacer cosas en su casa? ...... :...... 1 2 3 • i. l,AI alimentarse? ...... 1 2 3 • A2. Durante las ultimas cuatro semanas, 1,Ie ha impedido su salud (READ ACTIVITY) todo el tiempo , algunas veces, a nunca? • (Circle One Number on Each Line) • SI, TODO SI, ALGUNAS NO, • EL TIEMPO VECES NUNCA • a. l,Trabajar en un empleo, trabajar en casa, 0 ir a • la escuela? ...... 2 3 • b. l,Hacer cierlo tipo 0 cantidad de trabajo, quehaceres, • o tareas de la escuela? ...... 2 3 • c. l,Encargarse del papeleo para el segura medico • (aseguranza) 0 cuentas medicas? ...... 1 2 3 • • 33 • i. '~,.. • A3. Durante las ultimas cuatro semanas, "cuantos dias se tuvo que quedar en la cama par 1/2 dia 0 mas a causa de su salud? '. DAYS: _ • • NOTE: FOR CAPI, RESPONSE CAN'T BE >28. • A4. Durante las ultimas cuatro semanas, "cuanto interliri6 el dolor con su lrabajo normal (incluyendo ellrabajo fuera de la casa y los quehaceres de la casal? Diria Ud.: • (Circle One) • Para nada, 1 • Un poquilo, 2 • Moderadamenle, ,.. 3 • Baslanle, 0...... 4 • Mucho? 5 .. A5. Duranle las ullimas cualro semanas, "en cuanlo ha inlerferido su salud 0 sus problemas • emocionales con sus aclividades sociales normales con su familia, amigos, vecinos, a grupos? • Diria Ud: • (Circle One) • Para nada, 1 Un poco, 2 • Moderadamente, 3 • Bastante, 0...... 4 • Mucho? 5 • A6. En general, dir/a Ud. que su salud en estas lilt/mas cualro semanas fue: • (Circle One) .. Excelenle, 1 • Muy buena, 2 • Buena, 3 • Regular 0, 4 • Mala? 5 • •I •.,~ •• 34 • • • • Client Id.# _ Timeline: 0 Baseline 012 Months • Today's Date: _ Group: 0 HA 0 SA 0 HS • Medicallllness:, _ • A7. (HAND R CARD #34) Por favor digame que tan ciertas 0 que tan falsas han side las siguientes • frases para Ud. durante las ultimas cuatro semanas: • (Circle One Number on Each Line) • DEFINITI MAS 0 MAS 0 DEFINITI VAMENTE MENOS NO MENOS VAMENTE • CIERTO CIERTO ~ FALSO ~ • a. Parezco enfermarme mas facilmente • que otras personas.. '" ...... 1 2 3 4 5 • b. Me he estado sintiendo mal • ultimamente...... 1 2 3 4 5 • AB. (HAND CARD #35) c',Cuanto tiempo durante las ultimas cuatro semanas (READ ITEM). Diria Ud. todo el tiempo. la mayor parte del tiempo, una buena parte del tiempo, alguna parte del • tiempo, un poco de tjempo, 0 nunca? • (Circle One Number on Each Line) LA MAYOR UNA BUENA ALGUNA UN POCO • TOOO EL PARTE DEL PARTE DEL PARTE DEL DE • T1EMPO TIEMPO I1EMPO TIEMPO TIEMPO • a. Se ha sentido calmado/a y • tranquilD/a? ...... 1 2 3 4 5 6 • b. Se ha sentido desanimado • (desconsolado/a) y • triste?...... 1 2 3 4 5 6 • c. Se ha sentido • cansado/a? ...... 2 3 4 5 6 • d. Ha sido Ud. una persona • feliz? ...... 1 2 3 4 5 6 • e. Ha side Ud. una persona • muy nerviosa? ...... 1 2 3 4 5 6 • f. Ha tenido suficiente energia para hacer las cosas que • queria hacer? ...... • 2 3 4 5 6 g. Se ha sentido Ud. tan triste • que nada /ol/a podia • alegrar? ...... 1 2 3 4 5 6 • • 35 • • • h. Ha estado ansiosola 0 • preocupadola? . 2 3 4 5 6 • i. Se ha sentido deprimidola? 2 3 4 5 6 '.• A9. Durante las iJltimas cuatro semanas, i-cuimto ha interferido su salud fisica 0 sus problemas • emocionales con sus actividades sociales (como visitar amigos, parientes, etc.)? Estas • respuestas son un poco diferentes. Diria Ud.: • (Circle One) • Todo el tiempo, . • La mayor parte del tiempo, 2 • , Parte del tiempo, 3 • Un poco del tiempo, 0...... 4 • Nunca? :...... 5 • A10. i-Cuimto dolor de cuerpo ha tenido durante las ultimas Guatro semanas? Diria Ud. que: • (Circle One) • Nada, 1 • Muy pOGO, 2 • POGO,...... 3 • Moderado,.... 4 • Grave, 0 5 • Muy grave? 6 • • • •'!t • • • • 36 • •.. • Appendix B I0 Project Milagro Evaluation - Coping Survey • (English) • Coping • Client ID: Group: OHA OSA OHS • Today's Date: o Baseline o Completion • Identified Event: • Please indicate which ofthe following (below) you did in connection with this event: • No Yes, Yes, Yes, • Once or sometimes fairly • Twice often • I. Tried to find out more about the • situation 2. Talked with spouse or other relative • about the problem. • 3. Talked with a friend • 4. Talked with a professional person • (e.g. doctor, lawyer, clergy) • 5. Prayed for guidance and/or strength • 6. Prepared for the worst • 7. Didn't worry about it figured • everything would probably work out • 8. Took it out on other people when I • felt angry or depressed 9. Tried to see the positive side ofthe • situation • 10. Got busy with other things to keep my • mind offofthe problem • I I. Made a plan ofaction and followed it 12. Considered several alternatives for • handling the problem • 13. Drew on my past experiences, I was • in a similar situation before • 14. Kept my feelings to myself • No Yes, Yes, Yes, • 37 • • Once or sometimes fairly • Twice often • 15. Took things a day at a time one step • ata time • 16. Tried to step back from the situation • and be more objective • 17. Went over the situation in my mind to • try to understand it • 18. Tried not to act too hastily or follow i. my first hunch • 19. Told myself things that helped me I.I feel better • 20. Got away from things for a while • 2I. I know what had to be done and tried • harder to make things work • 22. Avoided being with people in general • •II 23. Made a promise to myself that things would be different next time •.. 24. Refused to believe that it happened • 25. Accepted it; nothing could be done • 26. Let my feelings out somehow • 27. Sought help from persons or groups with similar experiences • I •I 28. Bargained or compromised to get • something positive from the situation • 29. Tried to reduce tension by: • a. drinking (alcohol) more • b. eating more • c. smoking more d. exerclsmg more • e. taking more tranquilizers •I ..• • 38 • • • • Appendix B I0 Project Milagro Evaluation - Coping Survey (Spanish) • Coping • (Spanish) • • Client ID: _ Group: 0 HA 0 SA 0 HS • Today's Date: _ o Baseline o Completion • Por favor escoja el problema mas importante que Ie haya afectado. • Escriba el nombre de este evento/situacion _ • Por favor indique a continuacion como reacciono usted con respecto a este evento; • No Si, Si, Si, • Unao algunas frequente • Dos veces veces mente 1. Trate de informame mas • al respecto de el problema • 2. Hable con mi esposo u otro familiar sobre el • problema • 3. Hable con un amigo 4. Hable con una persona • professional (doctor, • abogado, sacerdote) 5. Rese para recibir fuerza • y direccion • 6. Me prepare para 10 peor • 7. No me preocupe; pense que • todo saldria bien • 8. Me desquite con otras personas cuando me senti enojada 0 • deprimida • 9. Trate de ver el lado positivo • de la situacion • 10. Me ocupe en otras cosas para • evitar pensar en el problema • 39 • ••• • No 8i, Si, Si, '. una 0 algunas frecuente • dos veces veces mente •• 11. Hice un plan de acci6n y 10 • segUl '.,• 12. Considere varias altemativas • para tratar con e1 problema • 13. Me base en mis experiencias .. anteriores; estuve en una .- situaci6n similar • 14. FUI muy reservado(a) sobre e1 • problema • 15. Tome las cosas con calma, dia a dia, paso a paso • 16. Trate de salirme de Ia situaci6n, • Y ser mas objetivo(a) • 17. Revise Ia situacion en mi mente, _ • para tratar de entenderla .. 18. Trate de no actuar • ace1cradamcnte 0 de segir mi • primera intuici6n .. 19. Me dije a mi mismo(a) cosas que me ayudaron a sentir mejor • 20. Me a1eje por un tiempo • 21. Yo sabia 10 que tenia que hacer • y trate de hacer que las cosas trabajaran •tit 22. En general trate de evitar a otras _ • personas • 23. Hice una promesa a mi mismo • que las cosas serian diferentes la • proxima vez , 24. No crei 10 que habia pasado •.. 40 • • • • 25. Acepte que no podria hacer • nada sabre el problema • Client !D: Group: 0 HA 0 SA 0 HS • Today's Date: 0 Baseline 0 Completion • • 26. Descargue mis sentimientos de • alguna forma • 0 27. Busque ayuda en personas • grupos con experencias similares • 28. Me prometi sacar algo positivo • de la situacion • 29. Trate de reducer la tension por medio de: • a. Tomando alcohol mas • b. Comiendo mas • c. Fumando mas • d. Hacienda mas ejercicio • e. Tomando mas tranquilizantes _ • • • • • • • • • 41 • I. Appendix B11 Project Milagro Evaluation - Health Survey i. HEAL TH INTERVIEW SURVEY FOR HIVIAIDS ~. =====~ T;,:o:d:ay!..'s:.:oa::t:e:~======~l , Il:::c,:lie:;n:.:.t;.::10:;::#;;;: • OSaseline OPos! • Medical Diagnosis '.• 1. Medical Diagnosis is: 0 AIDS 0 HIV Symptomatic 0 HIV + Asymptomatic ,'. 2. Date of Diagnosis: (When client was informed) • 3. Transmission Category: 0 Homosexual 0 Bisexual 0 Heterosexual OI.V. Drug User • o Blood Transfusion 0 Hemophiliac 0 Birth • 4. Client was infected by (specify): _ • 5. Client was infonmed of HIV/Aids diagnosis by: 0 Partner 0 Physician 0 Lab Tests (routine) • o During a Hospitalization 0 HIV/Aids Test 0 Parent(s) 0 Relative/Friend • 6. Was a retest conducted to confirm the client's positive HIV results? 0 Yes 0 No • 7. Did client (or child's parent) seek a"second opinion"? 0 Yes 0 No • If yes, where? 0 United States 0 Other Country, specify if possible: •.- Present Medical Status • value as of (date) • 8. Client's most recent laboratory results: CD4 • CD4% • Viral Load • Stage 1=100-80 Stage 11=70-60 Stage 111=50-40 Stage IV=30-20 • 9. Kamofsky Scale assessment: o 0 0 0 • 10. Is client presently disabled due to HIVIAIDS? 0 yes 0 no • 11. Has this client been hospitalized in the past: week 30 days months year no • 0 0 06 0 0 • AIDS-related Illnesses • Please check any AIDS-related illnesses or co-existing illnesses the client is experiencing currently: o PCP 0 meningitis •.. o wasting syndrome 0 dementia (memory impairment) o gynecological problems (abnormal PAP, yeast infections) 0 mood disorders (anxiety disorders) • o cervical cancer 0 TB • o Kaposi's Sarcoma (lesions in the skin or intemal organs) 0 Hepatitis B It o thrush (fungal infection) 0 Hepatitis C .. o toxoplasmosis (swelling, lesions in brain) 0 other, specify: • Note: Requests to duplicate this instrument/fonn can be forward to Lourdes Carranza, Project Manager at • Bienvenidos, address .. •, 42 •.': • • Medication Treatment note: questions 12-15 apply to the pregnancy &birth of the • yes,AZr no n/a yes, other • child identified as the AlA Index Child only • 12. Did client take medication for HIV/AIDS during pregnancy? 0 0 o • If yes, give start & end months:_ (month began meds) to __ (month ended meds) • • 13. Was newborn placed on HIV/AIDS medication? 0 0 o • If yes, how long was medication given to newborn?: weeks • • 14. Did the newborn test positive for HIV? o o • 15. Was the newborn breastfed by the mother? • o o • • 16. Is client currently taking medication for HIV/AIDS? •o o o • • 17. Is the client currently compliant to medication treatment? o o o •o • If no, why not? • Medication Side Effects • Please check any medication side effects the client is experiencing currently: • o lipodystrophy (redistribution of body fat) o weight loss • o skin irritation, rash o abdominal pain, discomfort • o peripheral neuropathy (pain, numbness in hands, feet) o anemia o dizziness o low blood pressure • o headaches o high blood pressure • o fatigue, weakness o menstrual irregularities • o numbness around mouth o kidney stones o swelling around mouth o pancrealilis • o taste perversion o fever • o oral ulcers o delusions • o nausea o impaired concentration • o vomiting . 0 insomnia • o diarrhea o .mood disorders • o loss of appetite o other, specify: • Alternative Treatments • Please check any alternative treatments for HIV/AIDS the client is seeking currently: • o herbal/homeopathy 0 proper nutrition/diet • o nutritional supplements 0 healerlcurandera • o acupuncture 0 other, specify: • • • • • 43 • • Appendix B12 Project Mi1agro Evaluation - Health Survey • SUBSTANCE ABUSE HEALTH INTERVIEW • Client 10: Today's Oate: _ It o Baseline o Post • Medical Conditions • 1. Please check any medical conditions the client is experiencing currently: • o tuberculosis o bladder infections • o heart disease o STDs o seizures o arthritis • o blood clots o gynecological problems • o ulcer o Hepatitis A • o gallstones o Hepatitis B • o diabetes o Hepatitis C o thyroid irregularities o HIV/AIDS • o asthma o severe headaches • o emphysema o mental health disorder • o chronic bronchitis o cancer • o kidney stones o back problems • o kidney infections o other, specify: _ • yes no • 2. Has client received medical treatment for the above condition(s)? 0 o • 3. Has this client had any surgeries during the past year? 0 o • • Drug History • 1. Please check the client's primary drug of choice in the primary column. (Check more than one drug in the • primary column only if the client is or was a polydrug user (i.e., client used more than two drugs on a til regular basis). In the recent column, please check any drugs client has used in the past 6 months. • primary recent primary recent 0 0 alcohol 0 0 methamphetamines • 0 [] cocaine/crack 0 0 hallucinogens (LSD, mushrooms) • 0 0 marijuana 0 0 club drugs (roofies, ecstacy, Special K,GHB) • 0 0 heroin 0 0 inhalants (whippets, poppers, etc.) • 0 0 PCP 0 0 prescription meds (Vicodin, Valium, etc.) • 0 0 amphetamines/speed 0 0 other, specify: .. 1. How long did the client use drugs? o less than 1year 01-5 years Dover 5years • 2. How long has the client been drug-free? 0 less than 1month 01-6 months Dover 6 months • 3. At what age did client first started drinking alcohol or using drugs? years •.. 44 • • • Appendix B13 Project Milagro Evaluation - Changes in Home Environment/Family Log • • AlA Changes in Home Environment and/or Family Composition • • I_C_I_ie_n_t_B_F_S_ID_#_o_o 1 Group (circle one): SA HA HS I • HIV • Initial status • Information Name (+ 1- / nay • Index Child • Biological Mother • Biological Father Primary Caregiver • .. _'"-'"'"'"-~-"--"-_.--'--'-'--'---''''----'---'"'----- ...... __....------_._..-.------_...... _------_..... • Relationship to Index Child -7 • 1st Change in Home Environment/Family Composition Change (s) that Occurred Affecting • Index child and/orprimary • caretaker? • Type or Reason for change • Siblings Involved? • Date ofChange • ~nd Change in Home Environment/Family Composition • Change (s) that Occurred Affecting Index child and/or primary • caretaker? • Type or Reason for change • Siblings Involved? • Date ofChange • 3 rd Change in Home Environment/Family Composition • Change (s) that Occurred Affecting Index child and/orprimary • caretaker? • Type or Reason for change • Siblings Involved? • Date ofChange • • 45 • .. Appendix B14 Projcct Milagro Evaluation - Clicnt Satisfaction Survcy •.. • Client Satisfaction Survey for • AlA Funded Programs • In order to better serve the clients of the AlA Project Milagro, we are requesting that you fill out the • following survey. Please check the response that best describes your experience with the program. Your • participation is greatly appreciated. • 1. I received services promptly. • o Strongly disagree 0 Disagree 0 Agree o Strongly agree • 2. Agency/program staff was respectful of me and my culture. • o Strongly disagree 0 Disagree 0 Agree o Strongly agree • 3. I received the services my worker said I would receive. • o Strongly disagree 0 Disagree 0 Agree o Strongly agree •., 4. The services I received were helpful. • o Strongly disagree 0 Disagree 0 Agree o Strongly agree • 5. Please rate your overall satisfaction with this agency and it's services. • o Poor o Fair o Good o Excellent . • Please include any comments that you wish to share about your experiences with this program: • •.. •.. .,• • • •, 46 • • • • Appendix B 15 Project Milagro - Copyright Instruments • • ASQ Child Measure: • Squires, J., Potter, L., & Bricker, D. (2004). The ASQ User's Guide for the Ages & • Stages Questionnaires: A Parent-Completed, Child-Monitoring System. Second Edition, • Brooks Publishing Company, Baltimore. • Developmental Profile 2 Scale: • Alpern, G. (2002). Developmental Profile 2 User's Guide. Western Psychological • Services, Los Angeles. *Note: DP3 is now available and has replaced the DP2. Contact • information for this instrument: wpspublish.com • Parent Stress Index: Abidin, R. (2005). Parenting Stress Index, 3rd Edition, Psychological Assessment • Resources, Inc. Publishing, Florida. • Web address: www.parinc.com • • • • • • • • • • • • 47 • " •" , Appendix B 16 Project Milagro - Copyright Instruments • • • Bienvenidos • INFORMED CONSENT FORM FOR TREATMENT AND EVALUATION: • PROJECT MILAGRO • Purpose of Project Milagro The Abandoned Infants Assistance Program- Project Milagro (CFDA # 93.551) is a federally funded .. program by Children's Bureau- DHHS designed to prevent infant abandonment, by addressing the • needs offamilies affected by HlV/AIDS and/or substance abuse. Participants will receive home-based • supportive services using a team approach. The team approach will include a Family Support Worker, Counselor, Parent Educator, Health Educator, and when needed Therapist. Center-based services • offering Parenting classes, Drug Education, Health Workshops and support groups, will also be available. Project services are aimed at strengthening families, assisting parents and their children, and •.. improving quality oflife. • Procedures: • Project Milagro is a 12 month service program offering home-based support and education services. .. The evaluation consists ofyou completing questionnaires/surveys at the time of enrollment, at 6 .. months and again at 12 months. This process will take approximately 90 minutes and will be conducted individually. All questionnaires are available in English and Spanish. Staffmembers are • available to assist you completing these forms ifrequested. • •, Potential Risks: .. There are minimal potential risks in participating in evaluation services. Risks include the possibility that you may experience some anxiety when completing questionnaires or discussing issues related to • your health, personal and family substance abuse, and legal/criminal problems. No other known • physical, emotional or psychological risk is anticipated. In the event that you experience stress or •, anxiety in relation to completing this process, mental health professionals will be available for you to .. talk to. It Benefits: • It has been the experience ofthe stafrat this program that the benefits ofparticipation in the evaluation of this project will far outweigh the potential risks involved. The information collected from you is It• expected to result in a number ofsignificant outcomes that can help the project better serve future participants and to find out ifthe program is effective. • Confidentiality Statement: Maintenance ofconfidentiality is ofparamount importance and steps will be taken to ensure that all • information is handled as confidential as possible. Surveys and questionnaires will be identified with a • number and information will remain in a locked cabinet. Records will be kept for three years. • However, the staffis required by law to report any suspected case ofchild abuse or neglect or threats to harm your-self or harm others. • •, 48 • • • • Participation in this evaluation is strictly voluntary. You have a right to withdraw your consent without prejudice or the termination of services or referrals. You have the right to revoke this consent • at any time, or it will expire 12 months from today (Today's Date). • Offer to answer questions: Ifyou have any questions relating to Project Milagro, please feel free to call Lourdes Carranza (323) • 728-9577 or Dr. Martha Cristo at (213) 968-0338 at any time. You will be given a copy ofthis form to • keep. Ifyou have any complaints about the project, you can call Bienvenidos Family Services at (323) • 728-9577 and ask to speak to someone on the Institutional Review Board (the committee that helps • protect people who are in evaluation projects). The review board will then investigate your complaint. We encourage you to ask questions, give us suggestions, or tell us what you do not like about the • project to try to best help you. • Agreement: YOUR SIGNATURE BELOW INDICATES THAT YOU AGREE TO PARTICIPATE HAVING • READ THE INFORMATION ABOVE. • • Participants Printed Name Date StaffPrinted Name Date • Signature ofthe Participant Date Staffs Signature Date • Approved Research Committee Chairman Date • • • • • • • • • • • 49 • • • VIDEO, PHOTOGRAPHY AND/OR INTERVIEW RELEASE: • The Abandoned Infants Assistance Bienvenidos Project Milagro would like to document the progress • , and promote the success of its participants. At times, staff will be taking pictures of program • activities--of which you may be a part of--over the course of the next four years. On occasion, • members of the media, including newspaper photographers and television cameramen, may visit the • project to video tape, photograph or interview participants. We would like your permission so that you may participate in this process. This permission will cover the four years of the program unless you • notify us later that you do not wish to participate. • o I DO give permission to be video taped, photographed and/or interviewed. • OR • o I DO NOT give permission to be video taped, photographed and/or interviewed. • Thank you Jor your cooperation. • • Signature ofParticipant, Parent or Guardian Date • • Witness Signature Date • • ..• • • • •It •I • , 50 • • • • Appendix CI In-home Visit Progress Report • ro • IHn- ome V'151't Pro~ress epor • Case Name: Date ofVisit: • Case Number: I Session # for Month: Start Time o Client's Home Other • Client available: Stop Time 0 ~ • Family (counseling) Dyes Ono • Client (counseling) Dyes Ono • GrouD (counseling) Dyes Ono • ADULTS VISITED CHILDREN VISITED • 1. Mother: . 1. • 2. Father: 2. • 3. Caregiver 3. 4. 4. • 5. 5. • 6. Primarv Tovics Discussed On Face-To Face Visit (As Applicable) • Parental Functioning / Parent Education OChild's Functioning! Development o o Case ManagemenUAdvocacy • o Family Dynamics & Communication Health! MedicallDental issues o Substance Ahuse o • o Safety Factors (environmental) o Stress Management (Problem solving) o Physical! Sexual/Verbal abuse • o Immediate Basic Needs o Mental Health issues OPersonal goals: • o Anger Management! ConOict o Domestic Violence! Self-Esteem! OOther: resolution Emoowerment • o Referrals!Linkages needed: _ • o Concrete services being requested: Any ofthe above that were discussed during this visit must • be summarized by: • 1. Follow Uo on task! issues discussed at previous visit. • 2. Child Safety Issues (Discuss conditions ofthe home, child • (ren's) physical appearance, child (ren's) health, changes in • household). • 3. Family Functioning (discuss relationships, parent/child interaction, strengths/challenges, changes, commitment to program. • Highlight crisis intervention) • • 4. Progress towards goals stated In Case Plan (also discuss any • strengths/challenges toward goal achievement) • Rev.4fl6!08 • 51 • • 5. Evaluation ofessential Linkage Services (discuss • effectiveness ofservices being provided, barriers to service • provisions, parent's level of participation and any other services which rna benefit the famil or im rove famil functionin, etc.) • •I 6. Additional Comments (include items to follow-up with CSW, with other service roviders, famil member s • • • Family Support Worker • Date • • Program Coordinator Signature • Date • • • • • •I • • •.. •.. ..I •, •, Rev. 4/16/08 • 52 • • • • IAppendix C 2 Project Milagro Case Plan • PROJECT MILAGRO Case Plan • o Initial o Quarterly Review o HA 0 HS 0 SA • Client Name: Date: ID #: _ • STRENGTHS (Enter as many) CHALLENGES/BARRIERS (Enter as many) • • • 1. CONCERNS: ______Client: _ • GOAL: • OBJECTIVES • a. • b. • c. • Follow up: • 2. CONCERNS: ______Client: _ • GOAL: • OBJECTIVES • a. • b. • c. • Follow up: • 3. CONCERNS: ______Client: _ • GOAL: • Continued • 53 • • •, OBJECTIVES • a. • b. • c. .. Follow up: • 4. CONCERNS: Client: • GOAL: • OBJECTIVES • a. • b. • c. • Follow up:_ • • Agreement of Case Plan required. • Client Signature: Date: • Client Signature: Date: • Client (Minor ifapplicable): Date: .. Family Support Worker Signature: Date: It It Family Therapist Signature: Date: Program Coordinator Signature: Date: •.. Clinical Supervisor Signature: Date: •.. Case Plan Review o Quarterly Date of review: _ • Family Support Worker Signature Date • Family Therapist Signature: Date: .. Program Coordinator Signature: Date: • Clinical Supervisor: Date: • 2 .. 54 • • Project Milagro I\IE,\;' !\;lOllS 1'\\111" SI.H"ICr, on '" 5233 Ease Beverly Blvd. A In)}}u' vi/.ill/lion /nvgram lhrj{tmilit::r East los Angeles. CA 90022 "pi'ctl'd fry /IfI,/:\fDS ur SIllwlt/ll:" "b,I.''', 'll' 323.728.9577 • '.. 323 728-3483 (s@bienvenidos,org www.bie,wenidos.org ("11 IJrt)J.,I'f'tlIl/fl dl' apoyo que bl'iuda SnlJlr/.(JS r'1l Sll !togar "J~Ioc(jl1dox(! a nu!jora.r La calidad dif '{fir/a.!;; en ,/hUlilias (~fi'd(J(la.\ /JOr FJi'i' ({ud tlJll/idi'll/ja!.v·rpiccJ 1'1 IIIH lSIVA 0 "I",.w dl' alcobol " drog"". S('r"irim .\(111 grafh .\' fon./idlllf'irdn •••••••••••••••••••••••••••••••••••••••••••• •••••••••••••••••_.~.~.oe~.-••••~.~.~••~e-•••-e-e .-.~.~~.- • •• (II I: Il/\\/IJ.\ f" 'lIHlh lilt" fllI lJiIIll! III ,. 'Ilf. /'\. n wi I'"~ It-h, Ill.:: 01 Ifl\ .WId, 'PI l!nl~ IIJIn (of lltifdh /I. f'I'Oll'ftU .\lilaa"o ofrl'ct' un '{'l1lido de eSpt'rallza y nH~:jor caJidad de ,-ida a lIH!jeH's L:ililla~ y ~lh niiH'~ Clue hall sido alen'HIlI'" porVUL'SIll\, H t,:Ol\sHtHo fit, akuho! \' dni<,.;,'.... E1llef!'lunal es compasi\'o y cnlmrahl'h:'Hlt.' ,clIsihk. y ('11 ('qllipo ofreCt'1J !'wnidos ('11 d Jwgar que jnrlll~·en rO\lWlt·rli1. "dUCK!';", aho~ada y rtTUfSOS en I" nmHmid~\{l. La nwta tit'! prograllla cs malHellCI" 1tll alllbieJlle sano y scgtlro para Ins: llillos y \'s\abh'fl'l" la permanellfia y t's\adi~l dl~ lu~ nii'ms (nn mh.'mbros Jiullilia. 1"'(1\(,,(,11)'\ Jil;l,l.,.fJ'l 'I ell cO!;ll)(w:.lci('HI ('on sef\-icios S()ciale'i y Illedicos eH la rnnHl1l1fhHt provel'l1 una rnl tie ;tpoyo Ing:r..mdo n.-d\tl:lr d nive} de l'~lrl'''' dq.lh·:\I()Jl y de\olari(-l"1I ell las f;unilia .... af('n"lda~ por VfH/SID.\, u ('on~lImo de akohol \' rlrog I'rujerl Mila~1'U om,rs hoI''' and" brllrr 'Iualil\' of life i'j" Larina women and [heir fiunilics affected In' HJ\'/.\IDS or ;"uhstailCt ahu!l<:...... ,. Ct1illpaso;;,ion:ut", cullllrallr St'llsilirt' Sl.. ttr offer in-hurne cOlm~ding. SERVICIOS {'(hIGJtjOIl. and adrocacy with the goal of lTeating a "afe t'm'irOlllllent • ;\pn~'n en,,-u 11og;H" for children, Tl:am-bast·d S{'ITict·s help fraJ{ik families create a plan • COWit:ieJ'fa Ifltli,'idual III t'tlStll't:· tht'ir childrell remain within thdr home ('ll\'jnmmCJ1t. • CfHht:ierfa FamiHar Referrals to a \dde Ilclwnrk f.lf social, lllcdintl.•uld COlllllllUlil)' rCSOllrCc.'i • Millh:in dt' Casus (k;creaM~ pan'Ilial Slfe.~s, d('Pn~s'''ii(ln. and isolation - 1i.H' more s.table • Erlllcadc'm S(Jhre Salnd and h('altll\' nUllifies. • Clasps de Padres SERVICES S(~T\'ieius • tie RellllHiracit'lll • Fmllily Support • Hcalth EflllCllill1l • -n,U e viven en el dreo del Ene, Sureste de Los Angeles y en Ene de Hollywood. • • • • • • • • • • ••• • • ••• • .:• · ;; ••• • • ••• .••- • • • There are things that we • don't want to happen • but have to accept, • things we don't want to know • but have to learn, • and people we can 't live without • but have to let go. • Author unknown • • • I.I• .\ 'I •••••••• 01 ••••••••••••••••••••••••••••••••••••••••••••••••••••II• Written by Contents •" Lourdes Carranza December 2008 • BIENVENIDOS Introduction ..I los Angeles, California Purpose ofthis Workbook 213 785 5906 •'.\ www.bienvenidos.org Section 1Finding Courage: Are You Ready? •J •'I Section 2 What Are Your Options? , This workbook is dedicated • I to all the courageous Section 3 Choosing an Alternative Caregiver •, and caring parents • living with a terminal illness Section 4 Involving the Children in the Process •I and their cherished children. , Section S Securing Your Plan • •r " Section 6 Additional Information and Resources Funding for this workbook was provided I by the AbandonedInfants Assistance grant award (2004-2008), Children's Bureau I Administration far Children and Families I Department ofHuman Health Services. I 58 I I • • 1 • • • Introduction • 'admire your strength and courage in not only picking At this point, you • up this workbook but also proceeding to read it. Perhaps may find yourself • you are sitting in your living room or in a waiting area debating whether for a medical visit and wondering ifthis workbook has to continue reading • any purpose in your life. It mayor may not. However, it this workbook. To • contains valuable information for you to read, whether encourage you to • you find it helpful for yourself or for someone you know. continue, we would like to share what • Living with a terminal illness can be a devastating reality. we have learned • As a parent you may be facing multiple decisions in the over the years of midst of unpredictable physical and emotional health. • offering support to parents living with HIV/AIDS who Custody planning can be very difficult emotionally, • embarked on the journey ofplanning the future care of : : especially when you • their children: There is no greater. : are not informed • > Early planning preventedseveral children from entering reassurance than knowing : ofthe options • : available to you. It the foster care system • your children 5future is : is important for you > Planning supportedthe transition ofchildren to their • secure and as a parent : to know that there newcaregiver andreduced unnecessary separation • you played a significant : is hope as well a~ between siblings : support m plannmg > Parents wishes were honored and their children in due • role in securing it. : for the future care of course resided with suitable and loving caregivers • : : your children. This • workbook is designed > Parent's who finalized theirplans ultimately shared an • to provide support and relieve your worries about:"What overaff sense of"peace" andfaced theirfutures with rest • will happen to my children in the event I become too ill andreassurance • to care for them?"There is no greater reassurance than It is important to keep in mind that this workbook is not knowing your children's future is secure and as a parent intended to replace legal counselor advice. Laws and • you played a significant role in securing it. • procedures relating to custody and visitation as well as This workbook will serve as a practical guide in planning the rights ofgrandparents are determined and may vary • by each state. This workbook provides information for for the future care of your children in the event that you • are no longer able to care for them. We realize that this is' people living in California. We suggest that residents of • a difficult subject to approach and to process, yet we are other states consult with attorneys or knowledgeable • confident that in the end you will find "peace of mind:' service providers for further information and gUidance. • It is also important that you give thought to this and if • possible, plan ahead while you are able to make informed • and competent decisions about your children's future. • • 59 • • 2 SECTION 1 • Finding Courage: • Are You Ready? • Planning for the future care ofyour children may be • one of the most challenging experiences you will face. Although difficult, this process will allow you as a parent • to make decisions about the lives of your children. • Notably, beginning the process of future care and • Purpose of this Workbook custody planning is a personal decision. Whether you • This workbook was specifically designed for parents living are embarking on this journey as a result of an urgent • with a terminal illness. It provides you and your family change in your health or as part of a long-term plan, it is with the information necessary to carry out your plans for a personal journey. You have begun a critical and often • the future care of your children. This can be a long-term emotional process to securing the future of your children. • process and requires a personal commitment. It is not This process neither has a timeline nor an ideal order to • easy nor is it a one-day journey. Planning, while coping follow. • with a compromised health condition and experiencing Over the years, we have learned that families have • "good and not so good days," can be challenging. It is unique beliefs, values and life experiences that inevitablj • important to know that dealing with the possibility of influence their plan for the future care oftheir children surrendering the care of your children can be emotionally • and its process. We have listened to countless anecdotes demanding. As you embark on this journey, it is highly • from parents who have completed their plan. Many recommended you find a friend or professional to • parents have shared their capability to currently enjoy journey with you. The road to planning for the future care life because they found comfort in knowing who will • ofyour children can be daunting and difficult at times; care for their children. Parents also shared that despite • however, the final steps will bring inner peace and calm their discomfort and difficulty at the onset, the planning to your troubled heart. ,.• process eventually evolved as therapeutic and healing This workbook was developed after careful assessment for themselves and their children. We also learned that •I and consideration ofthe needs of children living with parents living with stigmatized illnesses such as HIV/ 'I terminally ill parents. The workbook follows a framework AIDS commonly expressed struggling with decisions in • successfully applied to Latino/a parents living with disclosing the nature and extent oftheir illness. These • the HIV virus or AIDS who engaged in the journey parents often experienced shame and guilt, and tended • of planning for the future care oftheir children. This to be reluctant to disclose their health status to their .. framework incorporates a sensitive approach that is children as well as future caregivers. • further applicable and helpful to families living with As you begin exploring these ideas and your thoughts, other terminal illnesses. This workbook serves as an •, you are actually beginning the process ofplanning. Don't informational resource aimed at helping parents plan for • be afraid to seek guidance and support. The following '.1 their children's future. Moreover, it provides professionals • questions will help process possible concerns that you with meaningful strategies and tools to assist parents 'I may have and help determine if you are ready to take • in this emotionally complex process. Germane to the your planning to the next step. • workbook, a parent securing a plan is hereinafter referred to as the "custodial parent" and the individual nominated : (by the parent) to provide the future care of his/her .. children is hereinafter referred to as "future or alternative caregiver" or"nominated guardian:' ..'I 'I •~I 60 ., • • • > Is it important for you to plan for the future care SECTION 2 3 • of your children? What are Your Options? • Yes No • > Have your considered talking to someone about this? There are several options for the parent or family • Yes No wishing to plan for the future care of their children. It • If yes, who? _ will be important for you to identify what is the best • option for you and your family, based on your unique • > Is there someone who would care for your children circumstances. There are many factors to consider in the event that you couldn't? when deciding on a future plan for your children. For • Yes No example, a factor to consider is how to ensure the future • !fyes, who _ care of your children without giving up your rights and • responsibilities. In this section, you will be informed of • > Has anyone cared for your children in the past? the various options that exist in California, both formal Yes No (legal) and informal (not filed in a court). Each option has • Ifyes, who _ benefits and drawbacks that are briefly discussed. As you • move forward in the planning process, it will help if you • > Do you want to express your wishes and ensure that consult with a professional or friend to help you as you • your children do not end up with a particular person? process your emotions. Yes No • In order for you to determine what option is best for • you and your family, consider answering the following > Do you need information on who to contact for • questions: emotional support and/or legal counsel? • Yes No > Do you have concerns about disclosing your illness? • > Do you want to secure your decisions by making a • > Do you need information on benefits and services for formal legal plan (filing in court)? you and your surviving children? • > Do you have concerns about filing a legal plan in court? Yes No • > Do you have a person in mind who is interested • in assuming legal responsibility should it ever be • necessary? • These are all very important questions which, if not • yet present, will eventually surface. As soon as you can • determine your answers, you will be better able to make • a decision in choosing an option that is best for you and • your family. Below are the options available to parents • living in California diagnosed with a terminal illness: • Testamentary Guardianship • Testamentary Guardianship is a guardianship preference • stated in a Will or other written document, which • goes into effect after the custodial parent's death and following court approval. The custodial parent initiates • Testamentary Guardianship and has nominated an • I alternative caregiver guardian in a Will. However, • initiation of a future guardianship through a Will does • not, in and of itself, ensure that a court will appoint the person named in the Will. Disadvantages toTestamentary • 61 • • _4_'Guardianships are that nominations through Wills • can be contested and do not assist during temporary • incapacitation ofcustodial parents. • Caregiver's Authorization Affidavit • California law recognizes a category ofadults who • have informally assumed responsibility for the care of • minors residing with them.Through the Caregiver's • Authorization Affidavit, a caregiver may enroll a minor • in school and make school-related medical decisions. In some circumstances, a caregiver may authorize most • types of medical care for the child. Completing this Guardians are permitted by law to obtain medical • affidavit does not affect the rights ofa custodial parent treatment, and they are reqUired to ensure the safety • or legal guardian regarding the care, custody and control and educational needs of the child. Guardians are also • ofthe minor, and does not mean that the designated eligible to apply for public benefits on behalf ofthe child. Upon the death ofthe custodial parent, the Joint • caregiver has legal custody ofthe minor. The affidavit is not filed in a court and not valid for more than a year after Guardian caregiver becomes the sale legal guardian of • the date on which it is executed. the child without any further court proceedings. Joint • Guardianship appointments can be revoked by the • Joint Guardianship caregiver, minor who is of 14 years or older, the parent or • Joint Guardianship law allows for the parent who the court. • suffers from a terminal illness to designate someone Temporary Guardianship • who will participate in the care of the child ifand when the parent is no longer able to-provide for the child's A petition filed to the court requesting an urgent • daily needs. One of the most important aspects of this appointment of a guardian.This appointment is • law is that it allows the custodial biological parent the temporary, usually 30 days until a regular guardianship • opportunity to share child custody with the nominated hearing is scheduled. A temporary guardian can be nominated by the parent, the guardian or the child 14 • caregiver. Further, custodial parents are permitted to ,- retain custody and care for their children even after the years of age or older. The temporary guardian is provided I.I joint guardianship has been granted. In most cases, this with immediate authorization for the child's care. , is the preferred option for parents filing for a caregiver • guardianship. Joint Guardianship can also be applied in Adoption cases where two parties other than the parent, petition Adoption is a permanent legal option. Adoption is most •~ often an order filed by the Department of Children the court for shared custody. In this situation, the primary ,I and Family Services as a procedure to implement • caregiver may request assignment of a joint caregiver guardian for additional support in raising the child. a permanency plan for children who have suffered • In order to file for Joint Guardianship, two conditions abuse by their biological parents. In these cases, foster • must be met: first, the non-custodial parent must be care parents or relative caregivers adopt children. In .. in agreement with the nomination ofthe caregiver adoptions, the rights of both parents must either be .. guardian, and second, the non-custodial parent does not relinquished (voluntarily given up) or terminated by a , court order. Adoptive parents assume all legal rights of • contest the petition submitted by the custodial parent. I In addition, if the court finds it in the "best interest"of the adopted children, including but not limited to religion, • child to agree with the petition ofthe custodial parent, education and medical care. The majority of terminally ill • parents are not ready to relinquish their rights as parents the joint guardianship will be approved. Courts require .." for all non-custodial parents, grandparents, and siblings and therefore often do not chose adoption as a plan for •i of the child to be notified ofjoint guardianship requests. the future care oftheir children. In cases where a parent is deceased, the alternative caregiver (if not the other ',I parent) can chose to file for adoption ofthe child. • 'I 62 • • • • SECTION 3 5 • Choosing an • Alternative Caregiver Careful consideration needs to be given to choosing an • alternative caregiver. Unfortunately, it is common for • parents to wait until an urgent need arises to identify • either a temporary or permanent caregiver. Making • choices in times of urgency often does not allow for • careful consideration or thought as to whom would best • care for your children. Similarly, the nominated caregiver may feel compromised to accept this role, mainly due to • the urgency of parents' illness. Often, the opportunity for • comprehensive review and consideration of the extent of • this commitment is limited. In such situations, parents run • the risk of securing only a temporary placement followed • by disruptions and at times multiple unsuccessful placements. We are aware that the process ofidentifying STEP 2: Identify who is in your circle of support. • an alternative caregiver can be challenging. However, • we also recognize that this is a critical step in your Inside the circle, identify who are the persons closest to • planning process. you and your children. • To assist you in the process ofselecting an alternative • caregiver, please follow the next steps: STEP 3: Circle the names of the people who are aware STEP 1: Answer the following questions: • ofyour illness. 1. Have you experienced past hospitalizations? • This exercise will help you identify a suitable caregiver for Yes No • your children. There are other important considerations in choosing the alternative caregiver. We recommend that • 2. If yes, who cared for your children during your you spend time giving some thought to the following: • last hospitalization? • > Is the potential caregiver of age (18 years or older) and • in good health? > Is the potential caregiver aware of your health condition? 3. Ifyou were to be hospitalized today, do you have • If not, how do you think he/she will respond ifthey someone to care for your children? • found out? Yes No Not sure • > Is the potential caregiver interested in assuming the • 4. Ifyou answered yes above, could this person care for responsibility permanently? • your children long term? > Do the children have a relationship with him or her? • Yes No Not sure > Would the other parent object to your nomination • of caregiver? • 5. Would this person be willing to care for your children permanently? > Is there anyone who you absolutely would not want • Yes No Not sure to care for your children? • 63 • t t _6_ As you begin selecting the future caregiver, it is important > Non-custodial parents, grandparents and siblings will for you to know the court process for approving a be notified ofthe petition. • nominated guardian. Although there are no hard rules > Ifthe child is 14 years old or older, the child must • on whom is appropriate to be a guardian, it is the sole consent to the guardianship. discretion of the court to approve a nomination. The • > After appointment of a guardian, the child's parents court weighs many factors in making a decision to • remain legally responsible for supporting the child. appoint a guardian. Judges in California follow guidelines • t~ stipulated by law in the appointment of guardians. While not a requirement, many guardians volunteer .; • accept this responsibility. Factors used for guardianship preference include: to • one or both parents; to the person whom the child has > At the request ofthe parent, the diagnosis of the parent • been living in a stable environment; and to any person can be kept confidential during the hearing. " determined suitable and able to provide adequate • and proper care and guidance to the child (Goldoftas • & Brown, 2000). Ultimately, the most important SECTION 4 • consideration in naming a guardian is the "best interest • of the child:' Involving the Children in the Process • Additionalimportant factors to know • before filing a legal guardianship: • One of the many challenging decisions faced by • The nominated guardian does not: parents Jiving with a terminal illness is whether or not to disclose their health condition to their children as • > have to be a legal resident or citizen. well as determining the best time to do this. Disclosure • > have to be married or be a parent. ofa terminal illness to a child requires thought and • > have to be a relative ofthe child. preparation. Parental disclosure is enhanced with • support and guidance from professionals. Professional • The nominated guardian does have to: help can assist by reducing the parent's worries and fears. Common worries experienced by parents • > have a basic ability to "parent"the child. about disclosure include: Is the child old enough • > have an ability to provide the child with food, to'understand? Will the child keep the illness and • shelter, clothing, and medical care. information confidential? Additionally, parents often fear 'It " > "e in fair health. that disclosing their illness to their child will intensify • acting out behavior or emotional problems such as child sadness or even depression. As you determine the •" Reasons why a court might find a nomination improper: I appropriateness of disclosing your health status to your • > a person who has been charged with neglecting or .- children, we recommend you consider the following: abusing a minor. , > The age ofyour child(ren); • > a person who has been convicted ofa felony. > The emotional status and maturity of your child(ren); •" > other run-ins with the law depending on the crime, how •I > The child's ability to keep your health status confidential long ago it was committed and the current lifestyle of I ifasked to do so; • the person. •,I > The level of support you will need; and , The minor and appointed guardian will be interviewed • > Your child's past response to death (if applicable) or before the court proceeding by an investigator who will present fears about dying. provide a recommendation to the judge. • •" •I •" " 64 ..• • • It is important to keep in mind that children often SECTION S 7 • respond better than we anticipate and, for the most part, • are more resilient than adults. Additionally, all children Securing Your Plan are different and you (the parent) know your child(ren) • better than anyone else. Based on our experience, the Securing your wishes and determining your plan is one of • following tips have been extremely helpful to parents as the most important steps in determining your children's • they continue in the planning process: future. In the event the need arises to implement the • > avoid secretive talk around the children; plan, the challenging decisions will be done. To assist you with this we recommend the following steps to help • > avoid disclosure of health or plans in a moment of you put your thoughts into action. Ifyou haven't already, • anger or frustration; consider reaching out to a professional who can help you • > ensure the children receive information from you (the navigate the resources you will be contacting. • parent) for this will maintain a level oftrust and security; Steps to securing a plan • > be as open and honest with children, especially ifthey • are of age to understand; and > Decide ifyou will be filing your appointment of a guardian in a legal court or an informal appointment • > maintain a consistent level of communication with • those who support and encourage you. through a Will or Caregivers Affidavit. > Determine if there is urgency and if aTemporary • Traditional and religious beliefs and practices often Guardianship appointment is necesary. • provide valuable insights to parents who are planning • to discuss life and death issues with their loved ones. > Contact your local Probate Court and request • Ifand when appropriate, we recommend that you tap procedures for filing Guardianship. Most courts offer into spiritual support and guidance as well as to the past assistance either through the clerk or in-house legal • clinic. traditional practices that have been effective in facing • significant life events. > Find out if there is an organization that assists with • filing legal Guardianship. > Set up an appointment with the legal clinic or walk in • during business hours. • > Prior to the appointment, make certain that you • have all the necessary documents required to file • a guardianship (birth certificates, social security • numbers, addresses etc.). This will reduce unnecessary • repeated trips to the court and a prolonging ofthe • court date. • > Request a fee waiver. Ifeligible, your filing fees will be • waived. • > Ifyou do not file a legal plan, obtain a copy ofa • Caregiver Affidavit. • > After the guardianship is finalized, provide copies of the legal documents to the nominated caregiver guardian • and trusted individuals. • • • 65 • • _8_'SECTION 6 HEALTH CARE • Additional Information • Medi-Cal Public health financing program that provides • and Resources free medical coverage for low income families and certai~ groups ofpeople (people eligible for CalWORKS and • children in Foster Care). Call (800) 430-4264 or contact via • FINANCIAL SUPPORT the internet at www.lacd.org. • CalWORKs Government benefits that provide financial Healthy Families Low cost insurance program for • support to parents or guardians and dependent children. children and teens that do not have insurance and do n< • Apply in person at the local Department of Public Social qualify for free Medi-Cal. Call (800) 880-5305 or contact ': • Services (DPSS) or call (866) 613-3777. Contact can also via the internet at www.healthyfamilies.gov. • be made via the internet at www.ladpss.org. • LEGAL ASSISTANCE Social Security Benefits Call the Social Security office at • (800) 772-1213 or contact via the internet at www.ssa.gov. Public Counsel Children's Rights Project Legal • Social Security Disability (SSDI) pays monthly cash assistance in filling guardianships, adoptions and legal • benefits to disabled workers under age 6S and their advocacy for minors with unmet educational needs. Call • dependents. (213) 385-2977or (800) 870-8090. • Supplemental Security Income (SSI) pays monthly HALSA Free legal advocacy and services for HIV/AIDS • benefits to people with low incomes and limited assets impacted families. Call (323) 993-1640. • who are age 65 or older, or individuals of any age who are Legal Aid Foundation of Los Angeles Legal advocacy, • blind or disabled. representation and education for low income individuals "• Social Security Survivors Benefits pays monthly Call (800) 399-4529 or contact via the internet at www. • benefits to family members of a deceased person if he! lafla.org. she earned enough "work credits:' Special Immigrant Juvenile Status Legal residency • Food Stamps Monthly benefits for low income for children under the age of 21 (must not be married). • individuals to purchase food through an electronic Children must be dependent ofthe juvenile court or • benefits transfer (EBT) card. Apply in person at the local abandoned by their parents to be eligible. Call Pro Per Department of Public Social Services (DPSS) or call (866) Clinic at (213) 893-1030 or Dependency Court's Special :.I 613-3777. Contact can also be made via the internet at Immigrant Status Unit at (323) 725-4667. :1. www.ladpss.org. " WIC Food and nutritional education programs for at-risk, I· low-income pregnant women, infants, and children under References •, the age offive. Call (888) 942-9675 or contact via the .. internet at www.fns.usda.gov. Brown, D. & Goldoftas, L., (2000). The Guardianship Book • for California: How to Become a Child's Legal Guardian Housing Call LA County Housing Authority at (800) 731 • (3,d Edition). 4663 or contact via the internet at www.lacd.org. .. Section 8 provides low income housing through rent •" , subsidies. • HOPWA Section 8 provides housing assistance to people living with HIV/AIDS. • ..il Shelter Plus Care provides rental assistance and support •, assistance to low income individuals with disabilities. .. 66 • • • • • • • • • • • • Un Plan • • arael • i · '. turo , • • do de • ilos • • • .:· " • • • • Hay casas que no quisieramos • Que sucedieran • Pero que tenemas que aceptar, • Casas que no quisieramas saber • Pero que tenemos que comprender, • Y personas sin las que no podemos vivirl • Pero que tenemos que dejar ir. : • Autor anonimo • • • ••••••••••••••••••••••••••••••••••••••••••••••••• 0 ••••••••• ••,;It• Escrito por I. Contenido 'I Lourdes Carranza , Diciembre de 2008 • BIENVENIDOS Introduccion I· los Angeles, California •I 213 785 5906 Proposito de este fOl/eto www,bienvenidos.org . I.• Seccion 1Encontrando valor: IEsta/ista? ..:i Seccion 2 leuales Son Sus Opciones? •" , Seccion 3 Buscar un Tutor Alterno • , Este folleto esta dedicado a todos aquellos • padres valientes y comprensivos que suf.en una Seccion 4 Involucrar a los Niiios en el Proceso •, enfermedad terminal y a sus apreciados hijos. , Seccion 5 Asegure su Plan • •',I Seccion 6 Informacion Complementaria " Los fondos para fa creacion de este fol/eta fueron provistos • y Recursos Adicionales por 10 Concesion de Subsidios para la Asistencia a los •" Ninos Abandonados (2004-2008) y la Oncino de 10 • Agencia Infantil para Ninos y Familias-Departamento de I Servicios Humanos de Solud. • •" 68 • • • 1 • • • Introduccion • Admiro su fortaleza y valor no solo por tomar en sus y de manejar, pero manos este folleto sino, tambien, por atreverse a leerJo. estamos seguros • Quiza este sentado en la sala de su casa 0 en una sala de que al final • de espera de un consultorio y se pregunta si este folleto encontrara "paz para • tiene algun proposito en su vida. Puede ser que 10 tenga; su espiritu:'Tambien • puede ser que no. Sin embargo contiene informacion es importante que • valiosa que debe leer, y puede ser que sea de ayuda para reflexione sobre • usted 0 para alguien que cono . esto y si es posible, planifique el manana ahora que usted es capaz de tomar Vivir con una enfermedad terminal puede ser devastador. • decisiones competentes y bien informadas acerca del Como padre se puede encontrar en la situacion de tener • porvenir de sus hijos. , : que tomar multiples • decisiones en medio A estas alturas, puede ser que se encuentre debatiendo No hay mayor • : de imprevisibles en si debe continuar 0 no con fa lectura de este folleto. • tranquilidad que saber : condiciones de salud Para animarle a continuar, nos gustaria compartir 10 • que el futuro de sus hijos: fisica y emocional. La que hemos aprendido en los ultimos anos al ofrecer , : planificacion de una apoyo a los padres que viven con el VIH I SIDA Yque se • t d' d esta asegurado y como:: cus 0 la pue e ser muy embarcaron en ef viaje de la planificacion de la atencion • diffcil desde el punta padre, usted desempeiia : futura de sus hijos: • > Una planificacion temprana impidio que varios ninos un papel importante en : de vista animico, sobre • . ello ro del mismo. : todo c~ando ignora • entrardn en elsistema de hogares adoptivos • : ? :las 0pClones que estan > La planificacion apoyo en la transicion de los ninos con • a su disposicion. Es 5u nuevo tutor y hubo una reduccion en la separacion • importante que sepa que hay esperanza, asi como hay innecesaria entre hermanos apoyo en la planificacion para el cuidado de sus hijos > Los deseos de los padres se respetaron y sus hijos, en su • en el futuro. Este libro esta disenado para ayudarle y asf debido momento, residieron con eltutor adecuado • aliviar sus preocupaciones acerca de:"lQue va a pasar con > Los padres que completaron sus planes, al final • mis hijos en el caso de que este tan enfermo como para disfrutaron de una sensacion general de "paz" y • no poder cuidar de ellos?" No hay mayor tranquilidad que enfrentaron su futuro sin preocupacion y tranquilidad saber que el futuro de sus hijos esta asegurado y como • Es importante tener en cuenta que este folleto no esta padre, usted desempena un papel importante en ellogro destinado a sustituir la asesorfa 0 consejo legal. Las leyes • del mismo. • y los procedimientos relativos a la custodia y la visitacion, • Este panfleto servira como una guia practica en la asi como los derechos de los abuelos, son determinados planificacion para el futuro cuidado de sus hijos en el por cada estado y pueden variar segun este. Aqui solo se • caso de que usted ya no sea capaz de poder hacerlo. Nos proporciona informacion para las personas que viven en • damos cuenta de que este es un tema difici! de abordar California. Sugerimos que los residentes de otros estados • consulten con abogados 0 con los proveedores de • servicios para obtener mas informacion y orientacion. • • 69 • • 2 SECCION 1 • Encontrando Valor: • lEsta listo? • Planificar para el cuidado futuro de sus hijos es una de las • experiencias mas diffciles que pueda enfrentar. Aunque 'I sea diffcil. este proceso permitira que usted, como padre, • tome decisiones con respecto a la vida de sus hijos. Es • obvio que el inicio del proceso de planificaci6n de la • Prop6sito de este folleto 'I futura custodia y cuidado es una decisi6n personal. Ya sea • Este foUeto fue disenado, especificamente, para los padres que desee embarcarse en este viaje como resultado de • que padecen una enfermedad terminal. le ofrece a un cambio urgente en su salud 0 como parte de un plan usted y a su familia la informaci6n necesaria para Uevar a a largo plazo, de todos modes es un viaje personal. Ha • cabo sus planes para el cuidado de sus hijos en el futuro. comenzado un proceso crucial y delicado para asegurar • Esto puede ser un proceso a largo plazo y requiere un el futuro de sus hijos. Este proceso no tiene tiempo ni • compromiso personal. No es facil; no es cosa que se haga persigue un ideal. • en un solo dia. Planificar, al mismo tiempo que lucha Con el correr de los anos, hemos aprendido que las • contra una condici6n de salud complicada y, aun dado a familias tienen creencias, experiencias de vida y valores eso, pasa por"dias buenos y malos'; puede ser muy dificil. • unicos que inevitablemente influyen en el proceso Es importante saber que hacer frente ala posibilidad de • de hacer un plan para el futuro euidado de sus ninos. entregar el cuidado de sus hijos, a alguien mas, puede ser • Hemos escuchado innumerables anecdotas de los emocionalmente devastador. AI embarcarse en este viaje, padres que han completado su plan. Muchos de ellos • se sugiere que busque un amigo 0 un profesional que haga han compartido su fortuna de disfrutar de la vida hoy, ya • el viaje con usted. EI camino hacia la planificaci6n para el que encontraron consuela al saber quien euidara de sus • futuro cuidado de sus ninos puede ser abrumador y dificil, hijos. Tambien compartieron que, a pesar de su malestar sin embargo, todo esto ultimo que usted haga Ie traera paz • y dificultad en el inicio, el proceso de planificaci6n en interior y calma a su atribulado coraz6n. • algun momenta se transform6 en una terapia y les trajo • Este foUeto fue elaborado despues de una euidadosa alivio tanto a ellos como a sus hijos. Hemos aprendido evaluaci6n y consideraci6n de las necesidades de los tambien que los padres que viven con el estigma • ninos que viven con padres que padecen una enfermedad de enfermedades como el VIH / SIDA comunmente • terminal. EI panfleto esta estructurado de manera que se expresaron tener una lucha con las decisiones de tener • aplica con exito a padres latinos que viven con el virus del que revelar la naturaleza y el alcance de su enfermedad. • VIH 0 SIDA Yque se embarcan en el viaje de la planificaci6n Estos padres a menudo pasan verguenza y se sienten • para el futuro cuidado de sus hijos. Dicha estructura tiene culpables, ademas tienden a no querer revelar su estado ,I un enfoque susceptible que ademas es util y se adapta a de salud a sus hijos, asi como los futuros tutores. • las familias que viven con otras enfermedades terminales. Desde el momento en que comienza a investigar estas ~ Esta guia sirve como un recurso de informaci6n destinado a ideas y a analizar que piensa acerca de ello, ya en realidad ayudar a los padres que desean tener un plan para el futuro II Ie dio inicio al proceso de planificaci6n. No tenga miedo • de sus hijos. Ademas, pone a su alcance a profesionales que II de buscar orientaci6n y apoyo. las siguientes preguntas • Ie ayudaran con estrategias y herramientas para apoyar a ayudaran a tratar las posibles preocupaciones que pueda los padres en este dificil proceso emocional. Relacionado •" tener y Ie ayudaran a determinar si esta listo para lIevar su 'I al foUeto, un padre que asegura un plan se denominara en • plan al siguiente nivel. II 10 sucesivo como la"eustodia"y la persona designada (por •, el padre) para proporcionar el euidado futuro de sus hijos • se denominara en 10 sucesivo "futuro guardian alterno" 0 •" "tutor designado." II 70 • • • • > lEs importante para usted hacer un plan para el SECCI6N 2 3 • cuidado de sus hijos en el futuro? Si No ,Cuales son sus opciones? • > lHa pensado en hablar de esto con alguien? Si No • Si la respuesta es sf, leon quien? Hay muchas opciones para el padre 0 la familia que • desee planear para el cuidado de sus hijos en el futuro. • Es importante que identifique cual esla mejor opcion • > lHay alguien que podria cuidar de sus hijos en caso de tanto para usted como para su familia, basado en su que usted no pudiera? Si No condicion particular. Existen muchos factores que se • Si la respuesta es si, lquien? deben tomar en cuenta al decidfr un plan futuro para sus • hijos. Por ejemplo, un factor que se debe tomar en cuenta • es como asegurar ese cuidado sin tener que renunciar a > lHay alguien que ha cuidado de sus hijos en el pasado? • sus derechos y responsabilidades. En esta seccion se Ie Si No Sf la respuesta es 51, lquien? • fnformara de numerosas opciones que hay en California, • tanto formal (legal) como informal (no IIevado a la corte). Cada opcion tiene ventajas e inconvenientes que se > lDesea expresar sus deseos y asegurarse de que sus • examinan brevemente. Conforme avanza en el proceso hijos no terminen bajo el cuidado de cierta persona? • de planificacion, Ie sera de mucha ayuda 51 consulta con Si No • un profesional 0 un amigo para que 10 asista en el manejo de sus emociones. • > lNecesita informacion sobre con quien ponerse en • contacto para recibir ayuda emocional y/o consejerfa Para que pueda determinar que opcion es mejor para • legal? Si No usted y su familia, considere la posibilidad de responder a • las siguientes preguntas: > lNecesita informacion sobre los beneficfos y servicios • tanto para usted como para sus hfjos que Ie sobrevivan? > lTiene preocupaciones con respecto ala revelacion • Si No de su enfermedad? • > lQuiere garantizar su decision de hacer un plan jurfdico • formal (la presentacion en el tribunal)? > lTiene preocupaciones acerca de la presentacion de • un plan jurfdico en el tribunal? • > lTiene una persona en mente que esta interesada • en asumir la responsabilidad jurfdica en caso de que • sea necesario? • Estas son preguntas muy importantes que, en caso de • que aun no esten presentes, en algun momento surgiran. • Tan pronto como tenga las respuestas convenientes, • estara en mejores condiciones de tomar una decision en la eleccion de una opci6n que sea mejor para usted • y su familia. A continuacion se muestran las opciones • disponibles para 105 padres que han sido diagnosticados • con una enfermedad terminal, que viven en California: • Dec/araci6n jurada de autorizaci6n tutelar • La ley de California aprueba una categorfa de adultos • , que han aceptado la responsabilidad informal de cuidar • a los menores que residen con ellos. Por medio de la • declaraci6n jurada de autorizacion tutelar, la persona puede inscribir a un menor en la escuela y puede tomar \ • 71 • • _4_ decisiones medicas relacionadas con dicha escuela. En • algunas circunstancias, la persona puede autorizar la • mayoria de los tipos de atenci6n medica que necesite • el nino. Completar esta declaraci6n jurada no afectara los derechos de custodia de un padre 0 tutor legal en • relaci6n con el cuidado, la custodia yel control del menor, • y no significa que la persona designada tiene la custodia • legal del menor. La declaraci6n jurada no se presenta • ante un tribunal y no es valida por mas de un ano • despues de la fecha en que se haya ejecutado. • Tutela compartida tutor legal del nino sin mas procedimientos judiciales. La • La Ley de Tutela compartida Ie permite al padre, que sufre tutela conjunta asignada se puede revocar, ya sea par el • de una enfermedad terminal, designar a alguien que tutor, el menor (de 14 anos 0 mas), el padre 0 el tribunal. • participara en el cuidado del nino cuando este ya no sea La tutela temporal • capaz de proveerle con las necesidades diarias. Uno de Es una petici6n presentada al tribunal solicitando un • los aspectos mas importantes de esta ley es que permite a los padres biol6gicos la oportunidad de compartir la nombramiento urgente de un tutor. Este nombramiento • es temporal. por 10 general dias, hasta que se concierta, custodia de los hijos con el tutor designado. Ademas, 30 a los padres que tienen la custodia se les permite una audiencia para tutela regular. Un tutor temporal • puede ser designado por los padres, puede ser un tutor 0 ..• conservarla asi como el cuidado de sus hijos, incluso un nino de 14 anos de edad 0 mas. AI tutor provisional, s€ .• despues de que la tutela compartida se haya concedido. En la mayoria de los casos, esta es la opci6n que prefieren Ie da autorizaci6n inmediata para el cuidado del nino. • los padres que estan haciendo una petici6n de cuidado Adopci6n tutelar. La tutela conjunta tambien se puede aplicar en los • La adopci6n es una opci6n legal permanente. La casos donde hay involucradas dos partes distintas de los • adopci6n es en la mayoria de las veces una orden padres, esto es, petici6n ante el tribunal para la custodia presentada par el Departamento de Ninos y Servicios • compartida. En este caso, el tutor principal podra solicitar Familiares como un procedimiento para aplicar un plan la asignaci6n de otro como apoyo complementario en - permanente para ninos que han sufrido abuso por sus la crianza del nino. Con el fin de hacer una petici6n para ,. padres biol6gicos. En estos casos, padres guardianes " - tutela conjunta, se deben cumplir dos condiciones: en o familiares guardianes adoptan a los ninos. En las primer lugar, el que no tiene la custodia debe estar de 'I- adopciones, los derechos de ambos padres deben ser .~ acuerdo con la propuesta de nombramiento de tutor, cedidos (renuncian voluntariamente) 0 suspendidos por en segundo lugar, tampoco debe oponerse a la petici6n I~ una orden judicial. Los padres adoptivos tienen todos los presentada por el padre que si la tiene. Ademas, si el derechos legales sobre los ninos adoptados, inciuyendo, " tribunal considera que es en el "mejor interes" del nino •~ pero no Iimitado, a la religi6n, la educaci6n y la atenci6n estar de acuerdo con la petici6n de la custodia, la tutela medica. La mayoria de padres con enfermedad terminal conjunta sera aprobada. Los tribunales exigen que • no estan dispuestos a renunciar a sus derechos como todos los padres que no tienen la custodia, los abuelos y ..I padres y, por 10 tanto, a menudo no eligen la adopci6n hermanos del nino sean notificados de las solicitudes de como un plan para el futuro cuidado de sus hijos. En los • tutela conjunta. ...I casos en que un padre haya fallecido, el guardian alterno , Los tutores estan autorizados legalmente para recibir (si no es el otro padre) puede presentar una petici6n de • tratamiento medico, y se les exige que garanticen la adopci6n para el nino. •" seguridad y las necesidades educativas del nino. A los •, tutores tambien se les aprueba para solicitar beneficios :I publicos en nombre del nino. A la muerte del padre • , custodial, el conj\Jnto tutelar se convierte en el unico • 72 • • • • 'SECCION 3 5 • La eleccion de • un tutor alterno • Es necesario considerar cuidadosamente la posibilidad de escoger un tutor alterno. Lamentablemente, es • comun que los padres esperen hasta que una necesidad • urgente surja para asignar aun guardian temporal 0 • permanente. Hacer la elecci6n en momentos de apremio • a menudo no permite que se considere 0 se piense • cuidadosamente en cuanto a quien seria el mejor tutor para sus hijos. Del mismo modo, el tutor designado • puede sentirse comprometido a aceptar este papel, • principalmente debido a la urgencia de la enfermedad • del padre. A menudo, la oportunidad de revisi6n • completa y consideraci6n del grade de este compromiso • es iimitada. En tales situaciones, los padres corren el riesgo de asegurar s610 una colocaci6n temporal seguida PASO 2: Identifique quien esta en su circulo de apoyo • de interrupciones y colocaciones, a veces multiples, • sin exito. Somos conscientes de que el proceso de En la parte de adentro del circulo, identifique quienes son • identificaci6n de un cuidador alterno puede ser un reto. las personas mas cercanas a usted y a sus hijos. • Sin embargo, tambien recono~emosque este es un paso • importantisimo en el proceso de su planificaci6n. PASO 3: Encierre en un circulo los nombres de las • Para ayudarle en el proceso de selecci6n de un guardian personas que estan al tanto de su enfermedad. • alterno, por favor, siga los siguientes pasos: • Este ejercicio Ie ayudara a identificar al tutor correcto para • PASO 1: Conteste las siguientes preguntas: sus hijos. Hay otras consideraciones importantes que hacer al elegir al guardian alterno. Le recomendamos que 1. lHa tenido que estar hospitaiizado en el pasado? • dedique tiempo y reflexione en 10 siguiente: • 51 No > lEI posible guardian tiene la edad requerida (18 aftos 0 • 2. 5i la respuesta es sl, lquien cuid6 a sus hijos mientras mas) y goza de buena salud? • estuvo hospitaiizado la ultima vez? > lEI posible guardian esta al tanto de su enfermedad? 51 • no, lcomo cree usted que ellella respondera si se enteral • > lEI posible guardian esta Interesado en asumir la 3. lSi tuviera que ser hospitalizado hoy, tiene alguien • que se haga cargo de sus hijos? responsabilidad permanentemente? • 51 No No estoy seguro > lLos nilios tienen amistad con el 0 ella? • 4. Si la respuesta es sl, LPodrla esta persona hacerse > lHabra objeci6n por parte de su pareja para la persona • cargo de ellos por largo tiempo? que asigne como guardian? • 51 No No estoy seguro > lHay alguien quien no desea que par nlngun motivo cuide a sus hijos? • S.lEstaria esta persona dispuesta a cuidarlos • permanentemente? • 51 No No estoy seguro • 73 • • _6_ AI empezar la selecci6n del futuro tutor, es importante > Los padres que no tienen la custodia, los abuelos y • que conozca el proceso de la corte para la aprobaci6n . hermanos seran notificados de la petici6n. • de un tutor designado. Aunque no existen normas > 5i el nino tiene 14 anos de edad 0 mas, este podra dar • rigidas para quien podria ser el tutor apropiado, queda a su consentimiento con respecto a la tutela. discreci6n de la corte aprobar a quien se haya designado. • > Tras el nombramiento de un tutor, los padres del nino EI tribunal pondera muchos factores en la toma de una • siguen siendo legalmente responsables de mantenerlo': decisi6n de nombrar a un tutor. Los jueces de California • y apoyarlo. Aunque no sea un requisito, muchos tutores se guian por las directrices estipuladas por la ley en el , voluntariamente aceptan esta responsabilidad. • nombramiento de tutores. Los faetores utilizados para > A petici6n del padre, el diagn6stico de su enfermedad • elegir la tutela son: uno 0 ambos padres; la persona puede mantenerse confidencial durante la audiencia. • con quien el nino ha estado viviendo en un ambiente estable, y cualquier persona que, sea adecuada y capaz • de ofrecer atenci6n y orientaci6n convenientes para el • nino (Goldoftas & Brown, 2000). En ultima instancia, la SECCI6N4 • consideraci6n mas importante en el nombramiento de Involucrar a los nhios • un tutor es: en "el mejor interes" para el nino. en el proceso • Otros factores importantes que se deben saber antes de • la petici6n de una tutela legal: Entre las muchas decisiones dificiles que enfrentan los • EI tutor designado no tiene que ser: padres diagnosticados con enfermedades terminales, • > residente legal 0 ciudadano. esta la de si deben 0 no revelarles su estado de salud a • sus hijos, as! como determinar el mejor momenta para > casado 0 ser padre. • hacerlo. Para revelarle a un nino la condici6n de una > pariente del nHio. • enfermedad terminal se necesita pensarlo bien y hacer EI tutor designado debe: una preparaci6n adecuada. Esta revelaci6n tendra mayor • I.I > tener habilidad basica de "paternidad': reaIce si el padre la hace con el apoyo y la orientaci6n de > ser capaz de proveerle al nino: comida, un hogar, ropa y profesionales. La orientaci6n profesional puede ayudar " cuidado medico. al padre a reducir sus preocupaciones y sus temores. Las '. •~ > estar en buen estado de sa Iud. preocupaciones mas comunes que un padre enfrenta en cuanto ala divulgaci6n incluyen: lTiene el nino la edad ,. Razones por las que la corte puede decidir que una suficiente como para entender? lMantendra el nino la elecci6n es inapropiada: informaci6n de la enfermedad confidencial? Ademas, los • padres suelen temer que la revelaci6n de su enfermedad ..'I > una persona que ha recibido cargos por negligencia 0 abuso a un menor a su hijo Ie hara tener problemas de comportamiento •:1 a problemas emocionales como tristeza 0 incluso 'I > una persona que ha sido condenada por un delito • depresi6n. Mientras piensa la forma apropiada de grave. .. decirles a sus hijos de su enfermedad, Ie recomendamos > tenga otros problemas con la ley dependiendo del considerar 10 siguiente: • delito, lcuanto tiempo hace que se cometi6? y el actual .. estilo de vida de la persona. > La edad de su nino(s); .." La condici6n emocional y madurez de su nino(s); Tanto el menor como el tutor elegido seran entrevistados > •" > La habilidad para guardar el secreto de su estado de por un investigador antes de que la corte decida. EI •,I investigador Ie dara una recomendaci6n al juez. saIud, si se Ie pide que 10 haga; •" > EI grado de apoyo que va a necesitar; y •'I > La actitud de su hijo hacia la muerte, en el pasado 'I (si se aplica) 0 temores actuales sobre la muerte. • 'I 74 •I • • • Es importante tener en cuenta que los ninos suelen SECCION 5 7 • responder mejor de 10 que podemos anticipar y, Asegure su Plan • normalmente, son mas resistentes que los adultos. Ademas, todos los ninos son diferentes y usted (el padre) • conoce a su hijo (s) mejor que nadie. Sobre la base de La garantia de sus deseos y la determinacion de su plan • nuestra experiencia, los siguientes consejos han side es uno de los pasos mas importantes en la definicion • muy utiles para los padres que siguen en el proceso de del futuro de sus hijos. En el caso de que la necesidad • planificacion: se presente, el plan se pondra en accion y se tomaran las decisiones mas complicadas. Para apoyarle con esto, • > evite hablar en secreto delante de los ninos; Ie recomendamos los siguientes pasos que Ie ayudaran > evite hablar de salud 0 de planes en un momento • a poner sus ideas en accion. Si todavia no tiene una de ira 0 frustracion; • persona capacitada que Ie pueda ayudar a ligarse con > asegurese que los ninos reciban la informacion de • los recursos que estaran a su disposicion, considere la usted (el padre) porque esto mantendra un nivel de posibilidad de buscar a uno. • confianza y de seguridad; • > sea 10 mas abierto y honesto posible con los ninos, Pasos a seguir para garantizar un plan: • especialmente si tienen edad suficiente para entender, y > Decida si va a presentar la demanda de un tutor en un > mantenga comunicacion constante con quienes los • tribunal legal 0 si hara una demanda informal a traves apoyan y los animan. • de un testamento 0 una declaracion jurada de tutorfa. • Las tradiciones asi como las creencias y las practicas > Precise si hay una emergencia como para que sea • religiosas a menudo Ie dan una valiosa perspectiva a los necesario hacer una demanda de tutela temporal. padres que tienen previsto discutir cuestiones sobre la • > Pongase en contacto con su tribunal de procedimientos vida y la muerte a sus seres queridos. Siempre y cuando testamentarios local y pida los requisitos para hacer • sea apropiado, Ie recomendamos que eche mana de una peticion de tutela. La mayoria de los tribunales • apoyo y direccion espiritual asi como de practicas ofrecen ayuda por medio de un empleado 0 del tradicionales pasadas que hayan sido eficaces al enfrentar • dispensario legal interno. acontecimientos importantes en sus vidas. • > Averigue si hay una organizacion que preste asistencia • con la peticion de una tutela legal. • > Concierte una cita con la clinica legal 0 solo presentese • durante horas de oficina. • > Antes de la cita, asegurese de que cuenta con todos • los documentos necesarios para una peticion de tutela • lcertificados de nacimiento, numeros de seguro social, direcciones, etc.) Esto Ie evitara viajes repetidos e • innecesarios a la corte y que Ie prolonguen la fecha de • presentarse ante el tribunal. • > Solicite una renuncia de honorarios. Si 10 aprueban, se • retiraran los honorarios de su peticion. • > Si no presenta una demanda de un plan legal. consiga • una copia de una declaracion jurada de tutoria. • > Despues de haber concluido el proceso de la demanda • de tutoria, entregue copias de los documentos legales • a quien se haya designado como guardian(tutor) ya • personas de confianza. • 75 • • ~SECCI6N6 La seceion 8 de HOPWA Ie provee asistencia de vivienc • Informacion a personas que padecen VIH/5IDA. • Shelter Plus Care Provee asistencia de alquiler y auxilio ~, • Complementaria y personas de bajos ingresos con incapacidades. • Recursos Adicionales • ASISTENCIA MEDICA • AYUDA FINANCIERA Medi-Cal Programa de financiamiento medico publico que provee cobertura medica gratuita a fami/ias de • CalWORKs GCaIWORKs- Beneficios gubernamentales bajos recursos y a cierto grupo de personas (personas • que proporcionan apoyo financiero a los padres 0 tutores aprobadas para CaiWORK5 y ninos bajo euidado • ya los hijos a su cargo. Solicitese personalmente en el adoptivo). L1ame al (800) 430·4264 0 comuniquese via Departamento de Servicios Sociales Publicos (DPSS siglas • Internet a www.lacd.org. en ingles) local 0 lIame al (866) 613-3777. Tambien puede • comunicarse via Internet a www.ladpss.org. Familias Saludables Programa de aseguranza medica • a bajo costa para ninos y adolescentes que no tienen Beneficios del Seguro Social L1ame a la oficina del segura • seguro y que no son aprobados para recibir Medi-Cal social al (BOO) 772-1213 0 via Internet a www.ssa.gov. • gratuito. L1ame al (BOO) 880-5305 0 comuniquese via Incapacitacion del Seguro Social (SSDI siglas en Internet a www.healthyfamilies.gov. • ingles) paga mensualmente en efectivo los beneficios • ASISTENCIA LEGAL para los trabajadores incapacitados menores de 6S anos y • a quienes dependen de ellos. Proyecto del Consejo Publico para los Derechos de los II. Niiios Ofrece ayuda legal para presentar U!1a demanda Ingresos Subsidiarios del Seguro (SSI siglas en ingles) tutelar, adopciones y apoyo legal para menores con • les paga beneficios mensuales a personas con ingresos necesidades educativas impropias. L1ame al (213) 385 • bajos y ventajas Iimitadas que tengan 65 anos de edad 0 2977 0 al (BOO) 870-8090. mas, 0 a invidentes 0 incapacitados de cualquier edad. • HALSA (Siglas en ingles) Ofrece apoyo legal gratuito y • Beneficios de Sobrevivientes del Seguro Social les servicios para familias afectadas por VIH/SIDA. L1ame al • paga beneficios mensuales a miembros de la familia de (323) 993-1640. una persona fallecida si el/ella gan6 suficientes "creditos • de trabajo". Fundacion de Ayuda Legal de Los Angeles Ofrece ..'I ayuda legal, representaci6n y educaci6n a personas de Cupones de alimentos Beneficios mensuales para • bajos reeursos. L1ame al (800) 399-45290 comuniquese personas con bajos ingresos para comprar alimentos • por Internet a www.lafla.org. con una tarjeta electr6nica que transfiere beneficios •1 (EBT siglas en ingles). Solidtela personalmente en el Condicion Especial de Inmigrantejuvenil Ofrece .. Departamento local de Servicios Sociales Publicos (DPS5) residencia legal a ninos menores de 21 anos (no debe o lIame al (866) 613-3777. Tambien puede comunicarse estar casado). Para ser aprobados en esta categoria 'I los ninos deben depender de la corte juvenil 0 haber • via Internet en www.ladpss.org. • side abandonados por sus padres. L1ame a la c1inica •,I WIC lsiglas en ingles) Programa Educativo de Alimentos Profesional al (213) 893-10300 "ame a la Unidad de y Nutrici6n para mujeres embarazadas de bajos recursos, •" Condici6n Especial de Inmigrante de la Dependencia de bebes y ninos menores de cinco anos que estan en la Corte al (323) 725-4667. •, peligro. L1ame al (8BB) 942-9675 0 comuniquese a traves • de Internet en www.fns.usda.gov. •.,'I Vivienda L1ame allnstituto de la Vivienda del Condado Referencias de LA al telefono (800) 731-4663 0 comuniquese via .."I Internet en www.lacd.org. Brown, D. & Goldoftas, L., (2000). The Guardianship Book •" III La seccion 8 proporciona vivienda a los de bajo ingreso for California: How to Become a Child's LegalGuardian • por medio de subvenciones de alquiler. (3'" Edition). III 76 • • \' uJ C\ V\--kcl -t"D -\1'\ Ol V\ \C -\V\-(., k I.A p( o~ \2.. t\~ --- , 11> ¥.. hI\ -t\;\~ \I\-e. \t> --\-tA. Ol-\- -tV\-t' 1Il ~Cl.VZ ~. -:t... : l>J(A\/\-\ -1D -tv\.C\\I \\'" L'V\b"" £\lCl\t\~ ~K... ~It-\\.('):