Engaging children and families who are un-served and under-served often entails overcoming a number of obstacles which have prevented prior successful treatment. To benefit from care, youth and families must 1) recognize a need exists, 2) decide to seek help, and 3) find and access appropriate care. There are circumstances where treatment is a requirement of the court, a requirement for entry into a system (e.g., education) or as exit from a system (e.g., hospitalization), but this doesn’t mean that children will engage in care or that care will be adequate to meet their needs. After the decision to seek care, each step toward accessible, available and adequate care is influenced by an array of factors. The relationship status here is: ‘it’s complicated.’ The Figure at the end of this article summarizes these factors.
Recognizing need. Recognizing that a need exists is one limiting step to care. For younger children, caregivers must discern that an issue exists on behalf of the child, but older youth may recognize their own need. Other factors which are believed to impact problem recognition are: the severity of the issue and its impact on caregivers’ stress, family functioning, cultural beliefs and school achievement. Studies find that there is often increased recognition of need for children with externalizing over internalizing disorders, likely due to pressures to address the disruptions at home and in school. Additionally, schools, child welfare, juvenile justice and other systems may provide specialized services for a child with externalizing behaviors more often than for a child who internalizes stresses.
Seeking care. Following recognition of need, the decision to seek help is influenced by self-efficacy, culture, stigma and distrust. In order to trust that seeking help is worthwhile, caregivers and/or children must believe in themselves and the system providing care. Some families may mistrust or have prior negative experiences with the systems which offer care. Stigmatizing attitudes such as the fear of being blamed or labeled also dissuades youth and caregivers from reaching out for help. Some families and youth may prefer to rely on alternative sources of support, such as friends and spiritual leaders.
Finding care. Finding care first requires the knowledge of where and how to seek adequate and appropriate care. In other words, a caregiver may think “my child needs help, but where do I start; who do I call; what kind of help does he need?” When sought, professional mental health services are provided through three main sources: specialty mental health service sector, schools and primary care. Primary medical healthcare serves approximately 11% (although increasing) while the remaining children are served by an equal split between specialty mental health and schools. Mental health services provided within schools are typically administered as pull-out services, removing children from classrooms for individualized services, often at times not coordinated for caregiver attendance.
A caregivers’ ability to enroll a child into an appropriate treatment program depends on a complex set of interweaving factors. First, an appropriate program may not exist within an accessible geographical area. If one does exist, limited resources in mental health services may mean that the program is already filled to capacity. Providing that the program exists in an area and has an opening, the caregiver and child may face additional barriers related to transportation, time or care for other family members. The child may lack insurance coverage appropriate for the program or the family may be unable to afford co-payment or associated supplemental costs. The referral pathway, paperwork, processes or rules associated with the program may be burdensome or prohibitive. Referral to appropriate care may be hindered by systematic bias in referrals or referral patterns guided by entrance points into the system from primary care, juvenile justice, child welfare, crisis centers, school or self referral. Children may be enrolled (or not enrolled) in care based on an arbitrary and untested criteria of need. Providers receiving the referrals may not be appropriately equipped to meet the family needs, either through insufficient array of services or through capacity to accommodate language or cultural sensitivity. When children’s and families’ needs are mismatched to providers, this can lead to a loss of the families’ engagement in care, reduced self-efficacy, dropping out of care, and subsequent resistance to further seeking care.
However, we can improve our systems’ ability to reduce under-service. Any of these factors may pose a threat to adequate care for children with need and likely all of them contribute in part to the majority who remain under-served. Addressing all of these issues may seem overwhelming, but national, state and local policies have the potential to fund community outreach and education, set program enrollment eligibility criteria, provide appropriate guidelines for program framework, affix requirements for minimal service adequacy and cultural sensitivity training. Perhaps policy has the potential to drive innovative programming toward overcoming barriers and reaching under-served populations. On the other hand, jurisdictions designing mental health plans may choose to set goals to improve outreach to those with need, make available a comprehensive network of care for the insured and uninsured, and sensitively engage families while considering culture, stigma and choice of alternative or holistic options. In a comprehensive system, outreach and engagement efforts need not turn away and forget about those who fall into service gaps due to an inability to meet specialized eligibility criteria, inappropriate or mismatched programming, or unavailability due to waiting lists or physical barriers. To address under-service, systems must be willing to do whatever it takes to identify, enroll and engage families into care – efforts which are, by and large, influenced by consideration of a family’s experience within a system.
Family and parent networks are an underutilized resource. Family networks, such as the Idaho Parent Network (http://idahoparentnetwork.org/) provide an excellent resource, not only to help families, but to advise systems. “Each member of the Parent Network has a child with mental health concerns and has struggled to find needed support and resources.” Family networks exist as a resource for families struggling to understand the system, but they are likely an underutilized resource for informing system improvement efforts. Let’s engage these organizations into a conversation about how to help ascertain what it takes to identify, enroll and engage under-served children into accessible, available and adequate care. Let’s begin that conversation now.