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Janine Woods has an insider’s view of the challenges faced by foster children with special health care needs—and the social welfare and medical professionals trying to help them.

Although these professionals share the goal of helping children, tensions can arise. Doctors treating medically complex children sometimes raise concerns that the parents can’t properly care for the children. They may urge social workers to intervene quickly in cases of what they see as medical neglect, even to the point of removing children from their homes.

Social workers must follow state-mandated and local social services policy, however, and sometimes there is insufficient evidence to substantiate a medical neglect case. There are also times when there are gray areas; a struggling family’s immediate need for food, shelter, childcare, transportation or other services might be a contributing factor in preventing the family from getting the necessary medical care for their child with special health care needs.

Before her promotion to director of Monterey County’s Maternal, Child and Adolescent Health Services, Woods was a public health nurse responsible for ensuring that the medical care needs of children in the county’s child welfare system were met.

Typically, she would consult on the care of children in foster care or children who remained with their families while receiving support from social workers.

Woods reviewed medical files and communicated with far-flung medical specialists to make sure appointments, home care arrangements, medical equipment and other types of care did not fall through the cracks.

One of the greatest challenges was helping teach biological parents—who may be dealing with multiple issues—to adequately meet the complex needs of their medically fragile children, she said.

“If parents cannot consistently show that they have bonded well with their children and can ensure that their emotional, physical and health care needs are continually met, they risk losing custody of their child,” Woods said. “The county’s role is to protect children from additional harm and ensure they remain as healthy as possible.”

One family might not have the capacity to follow a diabetic child’s care plan, including ensuring that blood sugars are checked on a regular basis and that their insulin doses are given as prescribed, Woods said. Another family might not be taking a severely asthmatic child to routine appointments and following the child’s asthma action plan. Some children have chronic digestive disorders requiring feeding tubes; when parents do not care for them properly, the tube sites may become infected. For cases such as these, a CPS referral might be submitted and DSS staff might need to investigate to determine if there is medical neglect.

In some cases, the child will be removed from the home and placed with foster parents to ensure they get the special medical care they need, Woods said.

Woods oversaw dozens of cases like these, a small fraction of the county’s child welfare caseload, but one that required careful attention to preserve children’s health.

“Parents of kids with special health care needs require a great deal of support,” Woods said. “Families with low incomes and education levels, and sometimes language barriers, sometimes simply don’t have the resources to care for their medically complex child. The bar is quite high to learn how to take care of the child.

“If you’re looking at the quality of the child’s health care, you also need to look at poverty. Is there enough food on the table? Is there special formula that needs to be purchased?” Woods added. “We have families whose medical costs are not covered by insurance. Maybe a family has to choose between electricity and food. We need to discover what’s going on in that family, because always, the goal is to preserve or reunify the family, if at all possible. This is what we need to focus on doing better.”

Social workers connect some of these families to resources and enroll them in the county’s Pathways to Safety (PDF) program, which aims to identify and ameliorate the factors influencing problems with medical care, such as lack of transportation or child care for the family’s other children.

Pathways to Safety is a voluntary, early intervention program designed to assist in keeping children safe in their homes and out of the child welfare system. More than 90 percent of calls to child abuse hotlines do not qualify to become official child abuse and neglect cases; Pathways to Safety assists in bridging the gaps for families that require a lower level of intervention in order to keep their children safe and in their home.

Foster parents also receive training in how to care for medically fragile children, and at times, foster parents and the child’s parents jointly go to the child’s medical appointments, Woods noted.

As her new role at the county’s health department evolves, Woods is participating in the California Community Care Coordination Collaborative (5Cs), a project supported by the Lucile Packard Foundation for Children’s Health. Coalitions in Monterey and other California counties are bringing together professionals from local agencies to meet and review case files of children with special health care needs, including foster children. The goal is to better coordinate the services children receive from the many local organizations—schools, CCS, child welfare agencies, clinics—involved in their care.

The 5Cs has been useful in helping identify what’s missing for children—and to help professionals with widely varying backgrounds understand each other better, Woods said.

“Other programs serving that child might have a different perspective and a different viewpoint,” Woods said. “We all tend to work in silos, and we don’t take enough time to learn about programs right around the corner from us. We have to keep identifying the new resources and the new people in town and make sure they’re invited to the group as well.

“All of us are concerned with improving standards of care for children with special health care needs,” Woods said. “We’re a very passionate group. We want systems to improve, and one way to do that is to meet to identify gaps in services and work as a team to bridge those gaps.”

photo credit: Janine Woods