In Two California Counties Health Teams Support Grandparents Raising Their Grandkids
According to the U.S. Census Bureau, in 1999 more than 3.9 million children in America were being raised in homes maintained by one or more grandparent. Census 2000 data revealed that only about 6.4 percent of these children (250,000) had the benefit of the services and support that public agencies offer foster parents.
The Edgewood Center for Children and Families is a neighborhood family assistance and health center in San Francisco. In 1995, Edgewood created a "Kinship Support Network," a public/private collaboration to fill the gaps in public social services for kin caregivers grandparents and other relatives who were caregivers and the children for whom they cared. In 1997, the California legislature enacted a measure (AB 1193) to replicate Edgewood's kinship support network model in other California counties with many dependent children placed with kin caregivers. Seventeen counties qualified.
Through a grant that same year, Edgewood added a health team to its kinship support network services. When funding for the health team ended in 2000, the Robert Wood Johnson Foundation (RWJF) provided an unsolicited grant for Edgewood to reestablish the health team and help create comparable health teams in the 17 counties.
- The Edgewood health team served 126 adult kin caregivers and 238 children through its own project and obtained funding to sustain this portion of the project though at a reduced level when the RWJF grant ended.
- Project staff developed a replicable health-team model for use by kinship support networks established throughout California. However, shortfalls in funding at potential replication projects, among other factors, limited implementation of health teams to one county in addition to San Francisco.
Questionnaires administered by project staff to 126 kin caregivers at Edgewood in 20012004 revealed the following:
- Most caregivers' children ranked significantly below national norms for comparable children on overall health, and significantly above national norms on disruption of routine family activities and limiting the personal time of caregivers. The children's health did not improve despite the health team's interventions during the program; their disruptive behavior grew worse.
- Most caregivers reported physical and mental health that ranked significantly below national norms for women ages 5564. Many had chronic illnesses. Respondents' reported health did not improve during the program.
- Of 45 caregivers completing questionnaires at the start and the close of their participation in the project, most indicated significant reductions in the frequency of their need for socio-economic and tangible supports.
RWJF provided a grant of $1,099,549 from February 2001 to October 2004.
The U.S. Census Bureau released figures in May 1999 showing that more than 3.9 million children nationally were being raised in homes maintained by one or more grandparent, with or without a parent present. Census 2000 data showed only 500,000 of these children to be in the child welfare system, with about half of these in kinship placement.
Only about 6.4 percent of children being raised by grandparents (or 250,000) had access to the kinds of financial resources, services and support that public agencies offer foster parents. In these homes, because of the age of the caregiver, it was and is often the case that both caregivers and children required significant health care.
The Edgewood Center for Children and Families is a neighborhood family assistance and health center serving a minority population along San Francisco's inner harbor. In 1993, Doriane Miller, M.D., established "Grandparents Who Care" at Edgewood, a project to help kinship homes.
In 1995, Edgewood expanded that project to form the more comprehensive "Kinship Support Network," a public-private collaboration intended to fill the gaps in public social services for relatives who were caregivers and their children as an alternative to foster care. It provided social work case management and support services (such as peer mentoring, parenting education and respite care) and home visiting by trained paraprofessionals from the local community. To support this sort of work, in 1997, RWJF funded a conference on kinship parenting sponsored by Edgewood (see Grant Results on ID# 030761).
In 1997, the California legislature enacted a measure (AB 1193) to replicate Edgewood's kinship support network model in all California counties with more than 40 percent of dependent children placed with kin caregivers. Some 17 counties qualified.
Under the bill, the social services agency of each eligible county received funding as an incentive to develop services in partnership with local nonprofits administering a kinship support network. The bill also provided limited funding for Edgewood to deliver technical assistance to participating counties and/or their participating nonprofit partners. In that year, Edgewood added a health team to its own kinship services with funding from the National Center for Child Abuse and Neglect.
When this grant ended in 2000, Edgewood sought grant funding from RWJF to recreate its health team and to help establish comparable health teams in counties in which it was working and in new counties eligible for kinship support network incentives under AB 1193. By the end of 2000, 20 such projects had been launched in 10 California counties Alameda, Contra Costa, Los Angeles, Monterey, Riverside, San Diego, San Francisco, San Mateo, Santa Clara and Stanislaus.
Project staff envisioned the establishment of an additional 20 projects during 2001. Each project represented at least the potential for a health team serving kin caregivers and their children already participating in a kinship support network.
Beginning in February 2001, Edgewood staff planned the following three steps, to be implemented over 45 months:
- Reestablish a health team at Edgewood in conjunction with its Kinship Support Network. The project added a health team manager, family nurse practitioner, two mental health therapists, a community worker, a child development specialist and an evaluator. Staff named the project the HealthyKin Program.
- Conduct both a health needs and resources assessment in those California counties establishing a kinship support network under the terms of AB 1193. In anticipation of this work, staff modified its existing family health needs assessment, translated it into Spanish and Chinese and distributed it to public social services agencies in all eligible counties. See the Appendix for information on the assessment questionnaires.
Staff also developed and distributed to social service agencies in these eligible counties an "Agency Health Services Questionnaire" designed to help them determine their administrative and community resources and anticipate current challenges. The questionnaire would also help eligible county social service agencies designate qualified area nonprofit organizations from among those willing to field and/or fund a health team.
- Work with each eligible county's project to help establish and support a health team responsive to local needs of children and kin caregivers.
Project staff did not fully carry out step three of this implementation plan. See Risks and Difficulties for the reasons for this.
See Results for accomplishments at the Edgewood center and limited accomplishments elsewhere. See Findings for data gathered by the health team at the Edgewood project in San Francisco profiling the health and support needs of participating kin caregivers and the health of their children.
Risks and Difficulties
In reports to RWJF, project staff cited a number of barriers to their attempts to replicate health teams in other eligible California counties (steps two and three).
In December 2000, Don Cohon, director of Edgewood's research institute, wrote in the grant proposal to RWJF that establishing health teams at new kinship support networks in other counties carried the risk that individuals managing these networks (from county social service agencies and/or the networks' parenting nonprofit organizations) might provide only limited cooperation. According to Cohon, these people were quite focused on putting basic case-management services in place.
Cohon posited three other difficulties:
- Locating qualified nurses in each participating county.
- Obtaining cooperation of local public health departments in each county.
- Obtaining understanding and/or funding on the part of the partnering nonprofit agencies.
In October 2002, in an interim report to RWJF, project staff reported the development of an operating health team attached to the kinship support network in San Mateo county (with Edgewood serving as the contractor) and agreement by 12 other counties with existing or planned kinship support networks to participate in health team development. However, in October 2003, staff reported that all counties except for San Mateo "are experiencing significant barriers in implementing new health services."
In October 2004, when the project concluded, in addition to Edgewood, only San Mateo had a functioning health team. In a final project report to RWJF, project staff cited the difficulty of supporting county social service agencies and their nonprofit partners in developing health teams "without being able to offer them concrete financial assistance."
They noted that counties' social service agencies were constrained by budgetary uncertainty and by actual financial shortfalls during the grant period (October 2001 through October 2004): "The budget situation in California is difficult and many of these agencies report working hard just to stay afloat and are unable to focus on developing new services. Indeed, two of the existing kinship support networks that were providing the services of a public health nurse to clients have folded," said the final report to RWJF.
Staff also cited the political climate: "Support for these services is quite limited, especially in the post 9-11 and Iraq war period that has many state and federal agencies focused on anti-terrorist agendas rather than such supportive and preventive services. The California Department of Social Services cut Edgewood's funding to deliver technical assistance to [the underlying] Kinship Support Networks during a significant portion of the grant period. While these funds were eventually reinstated, this did result in an inconsistent ability to travel to [counties operating or considering kinship support networks] to work face to face with staff to develop health services."
During the RWJF grant period, the California Endowment (a private foundation supporting community-based efforts to improve health throughout California) provided $659,000 for the reestablishment of Edgewood's health team and its dissemination and replication work at other projects.
The McKesson Foundation, a program of the McKesson Company, San Francisco, purchased a van for the Edgewood health team to use in transporting caregivers to doctors and workshops.
The First Five California, through its Children and Families Commission, contributed $5,000 in 2004 to fund a physical fitness program run by caregivers at Edgewood. (The commission administers grants generated through California's Proposition 10 tobacco tax.)
The Zellerbach Family Foundation in 20032004 helped fund attendance by project staff at a Stanford University chronic disease self-management program.
The project team reported the following results to RWJF:
- A health team served 126 adult kin caregivers (121 of them female) and 238 children at Edgewood's San Francisco project from February 2001 through October 2004.
- Following a caregiver's referral by the kinship support network's caseworker, project staff administered kin caregiver and child health assessments. For descriptions of staff's health assessment questionnaires see the Appendix.
- Then, typically, the project's nurse practitioner visited kin caregivers at home to help them with tasks such as: following-up on doctors' orders; physical exercise; commuting to a doctor's office; and navigating the health care system. Visits were weekly at first, then less frequent.
- Kin caregivers and/or children also received services at the Edgewood center.
- The nurse practitioner developed treatment plans for kin caregivers, kept medical records and documented home visits and childcare plans.
- Project staff did not give primary health care but did record blood sugar levels and blood pressure and help kin caregivers with nutrition planning.
- They conducted developmental assessments and devised interventions for children under age five, provided mental health counseling for children and adults (including transportation to counseling appointments), made nutritional assessments and maintained collaborations with community health providers.
- Project staff developed a replicable model for use in establishing health teams at present or future kinship support networks in other counties. They distributed the model to social services agencies of all California counties eligible for kinship support network incentives under AB 1193. The model consists of the following texts:
- A HealthyKin Program Manual explaining how to develop a health team. The manual:
- Describes programs to assess and to aid kin caregivers and children in their care.
- Lists relevant state and national resources.
- Describes sample workshops on health for caregivers.
- A separate section "Designing your Health Program" suggests staff positions for recruitment purposes.
- A family health needs assessment. The text consists of two questionnaires designed to help social service agency staff assess child and caregiver health and mental health needs and to plan responsive services (See the Appendix for more details). Staff shortened and adapted existing questionnaires on caregiver and child health needs to streamline paperwork for health teams and to better respect client privacy. They translated both questionnaires into Spanish and Chinese.
- A third questionnaire, the Family Needs Scale (used only in the Edgewood project), measures a caregiver's needs for tangible support and for socio-emotional support.
- An Agency Health Services Questionnaire helps social service agency staff assess the gaps in available services in their counties, and each agency's administrative resources as well as needs. Staff translated the questionnaire into Spanish and Chinese.
- Project staff provided technical assistance to kinship programs in four other counties interested in establishing health teams. San Mateo County, with funding to establish a permanent health team, received the most assistance. The Edgewood nurse practitioner helped San Mateo county's kinship program staff hire and supervise a nurse and mental health therapist and consulted on kinship cases. The Edgewood health team manager assisted 42 caregivers there in devising topics for monthly health workshops. Project staff also provided technical assistance to Santa Clara, San Diego and San Bernardino counties for a short time while the counties provided funding for a health team.
- Project staff collaborated with San Francisco State University in establishing clinical community rotations for two to four nurse interns per semester with Edgewood's health team. Starting in the fall of 2003, Edgewood's nurse practitioner served as a mentor to undergraduate and graduate nursing students. Undergraduates interned for 15 weeks, and graduate students for 30 weeks, learning about case management, completing health assessments and making home visits to kin caregivers.
- Staff conducted two workshops in self-managing chronic illnesses attended by 20 kin caregivers. The "Let's Live Well" workshops (May 2004 and October 2004) taught day-to-day management of chronic diseases such as diabetes, high blood pressure and obesity as they relate to life activities. Workshop graduates in turn helped teachers in the "Let's Live Well: Self-Management Techniques for Healthy Living" program at Edgewood. Project staff attended the six-session Stanford Chronic Disease Self-Management Program, held at Stanford University, to learn how to provide the workshop. Edgewood teams also trained kin caregivers from San Bernardino and Contra Costa counties in chronic disease self-management.
Project staff administered health questionnaires to kin caregivers when they entered the HealthyKin project at Edgewood and to many of them after 12 months or sooner if the caregiver left the program or was referred elsewhere.
Some 126 adults caring for 238 children completed most questionnaires between February 1, 2001, and August 30, 2004. For details on the questionnaires, see the Appendix. In a report to RWJF in 2004, researchers described their findings. They also presented some of them at regional or national conferences during 2002 and 2003:
- Most caregivers at the Edgewood project were African-American grandmothers caring for one or more children. The median age of kin caregivers at Edgewood during the sample period was 61; that of children in their care was 10. Some 96 percent of caregivers were female, with 84 percent either biological grandparents (73 percent) or aunts/uncles (11 percent). Some 77 percent of caregivers were African Americans and 15 percent Hispanic. Almost a third of caregivers had some college or professional schooling. Children in their care were approximately evenly divided in gender; 80 percent of them were African Americans.
- At intake, most kin caregivers' reports about their children placed the children significantly below national norms for non-white children on overall health, and significantly above national norms on disruption of routine family activities, and limiting their caregivers' personal time. Previous research on the children receiving services from the Edgewood Center led staff to conclude that the findings may in part be explained by the children's experiences of abuse and neglect. Analysis of repeated measures for 86 children enrolled in HealthyKin showed that disrupting the family's routine activities was significantly worse after 12 months, with children placing a greater limit on the family's ability to engage in normal activities. There were significant reported changes in parental free time or children's overall health.
- Most of the 119 kin caregivers who completed the health survey at intake showed physical and mental health scores significantly below national norms. Because members of this subgroup of Edgewood's clients were referred to HealthyKin due to health problems (many had chronic health conditions), this finding did not surprise staff. Previous research with the center's kin caregivers found them as a group to be significantly below national norms for females ages 4561 on all subscales of a general health survey instrument (the SF-36 General Health Survey). The 49 caregivers who completed repeated surveys over 12 months (or less if they left the program) had no change in health scores over that time.
- Of 45 kin caregivers who completed a "Family Needs Scale" questionnaire at the start and the close of their participation in HealthyKin, most indicated significant reductions in the frequency of their need for socio-economic and tangible supports. This finding occurred despite the fact that caregivers' children continued to disrupt family life and limit the personal time of caregivers.
In a 2004 report to RWJF, researchers note: "The picture that emerges from these data are of families in which children are profoundly affecting their older relative caregivers, whose self-reported health is poor when compared to national norms. "
- Use former employees as consultants to save time. Edgewood asked the director of its defunct 19972000 health team (who had moved out of state) to manage the recruitment of a new manager, a developmental specialist and a nutritionist for the new HealthyKin project and to consult with them on setting up its health team. The arrangement worked. The original project director also revised an existing manual for the new health team and for other kinship projects in California. (Evaluator/Youngblood)
- Make the leader of your health team the person who is most useful to kin caregivers in this case the nurse practitioner. Health problems among kin caregivers proved to be more severe than staff expected, making the nurse practitioner an extremely important lead member of the health team. It did take time for the kinship staff to learn how to best use the nurse's expertise with their clients. (Evaluator/Youngblood)
- Helping kin caregivers gain more control over their own health can make a significant contribution to their caregiving capacity. Many of this project's clients coped poorly with the effects of chronic illnesses. This diminished not only their quality of life but also their capacities as caregivers. While the project was not designed to treat illnesses, staff helped some clients by providing workshops through which they could acquire techniques for managing chronic illnesses. (Evaluator/Youngblood)
- Don't hesitate to modify services to kin caregivers and children when early results warrant this. After two years of enrollment, children in the project showed no health improvement and, according to survey findings, a decline in their behavior at home. At that point, project staff asked for fuller child assessments by caseworkers and a greater focus on the project's children. Similarly, staff developed chronic illness management services for the kin caregivers after noting the frequency of chronic illness among them, and the effects these illnesses had on their delivery of care. (Evaluator/Youngblood)
- Where a grant's purpose is to support a model's replication, it is important to create texts that describe and explain that model and to disseminate them. Then, if funds dry up, as they did during this grant, it is possible for the grantee or someone else to pick up the pieces at a later date. (Program Officer/Jellinek)
- Where projects are also dependent on state funding that may dry up during difficult fiscal environments, no amount of technical assistance funded by a foundation will make a difference. During this grant, an unpredictable fiscal environment (California in 20002004) may have negated every dollar of technical assistance RWJF spent trying to "support and encourage" counties in creating health teams to help kin caregivers and their children. This was because additional staffing in these counties through which the health teams would be created depended entirely on only one thing: the health of California's state budget. (Reviewers/Wood and McKaughan)
AFTER THE GRANT
As of November 2005, the HealthyKin program operated at a reduced level with funding for staff provided in part by a $150,000 grant from the California Wellness Foundation, a private foundation. The project no longer employed a full-time nurse practitioner, but continued to benefit from a clinical rotation for nurse interns from San Francisco State University. It offered regular workshops in nutrition and other relevant topics such as depression and chronic illness.
Through a contract with Medi-Cal (California's Medicaid program), HealthyKin provided ongoing mental health services to adults and children. Grant support totaling $25,000 for HealthyKin was pending from Pacificare, McKesson and Kraft Foods. Staff continued to mentor staff of other kinship projects by telephone and e-mail and to supervise a nurse and therapist in San Mateo County.
GRANT DETAILS & CONTACT INFORMATION
Developing Health Teams for the Kinship Support Network
Edgewood Center for Children and Families (San Francisco, CA)
Dates: February 2001 to October 2004
Ken Epstein, M.S.W.
Questionnaires Given to the Project's Kin Caregivers
Staff of the Kinship Support Network at the Edgewood Center administered these three questionnaires to adult caregivers when they began to receive services from its HealthyKin project and 12 months later:
- A 10-item Child Health Questionnaire (concerning the health of children five and older in the client's care) was adapted and shortened from the Child Health Questionnaire-PF50® (Landgraf, Abetz & Ware, 1996). The 10-item test assesses a child's physical, emotional and social well-being from the perspective of the primary caregiver and is available in Spanish and English. Because there are no measures that reliably record baseline functioning of infants and toddlers up to age five and thus allow for measurement of change over time, researchers did not measure this group of children on a formal basis.
- The SF-12v2 Health Survey is concerned with the caregiver's own health. It is a two-minute version (shortened with the authors' approval) of the SF-36 Health Survey, developed by the Medical Outcomes Trust, Boston, a nonprofit organization focusing on outcomes measurement. The SF-12v2 survey looks to limitations in activities because of health problems and bodily pain. Older caregivers reported problems such as glaucoma, diabetes, degenerative arthritis, asthma and heart murmurs.
- The Family Needs Scale (adapted with the authors' permission from "Enabling and empowering families: Principles and guidelines for practice" by Dunst, Trivette and Deal, 1988) measures tangible and socio-economic needs of caregivers. It asks, for example, how frequently caregivers need help budgeting money, getting enough food or accessing a telephone; how often they need someone to talk to or protection from neighborhood violence.
Doriane Miller, M.D. In 1993, RWJF named her a Community Health Leader for this work. See www.communityhealthleaders.org for a description of the Robert Wood Johnson Foundation Community Health Leaders Program. Or see the Grant Results on the program. Miller later became a senior program officer at RWJF.
Socio-economic support. An example of a socio-economic support for a caregiver is someone to talk to or protection from neighborhood violence; tangible support would include help budgeting money, getting enough food or having access to a telephone.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Youngblood D. HealthyKin: A Health Resource Manual for Kinship Support Services Programs. San Francisco: Edgewood Center for Children and Families, 2003.
Report prepared by: Nanci Healy
Reviewed by: James Wood
Reviewed by: Molly McKaughan
Program Officer: Paul Jellinek