When you have a child with emotional and/or behavioral challenges, seeing to it that you get the right services at the right time for your child and family can make a world of difference. If you are a parent who is new to seeking services, figuring out how to proceed can sometimes be overwhelming. If you are a parent with some experience trying to secure services, you may have had experience of seeking services that left you wanting.
Acknowledging that it is often difficult for parents to even establish what services are needed in the first place, the resource guide is intended to give you a head start in your search.
There are many reasons why securing appropriate services for your child or family can be quite challenging. To name a few, some of the services needed are in short supply; parents often describe getting conflicting advice regarding what services are needed; many of the services provided lack an adequate research evidence base supporting the use of them; it can be quite difficult to know whether services being provided are adequate in scope and quality.
Generally parents/guardians want to know:
What is the problem? What is needed? Where can I find the needed services? How can I tell if my child/family is getting services that are appropriate? Here are some thoughts that may help you work your way through these questions.
To provide capable treatment, professionals must generally follow a step-wise process. Understanding the basics of this process may help you assess whether you getting your needs met. Steps are as follows:
1. Description of the concerns and data collection:
- The clinician should be collecting a thorough history, including an interview of parents/guardians and the child in question (at least one hour); observation of family interactions and communication style; review of all prior efforts to address the problem (typically including written medical records and prior evaluations, likely also including conversation with prior and current treaters); communication with school personnel about school-based social and academic function; communication with pediatrician about medical status and pediatrician’s knowledge about the child and family/guardian; possibly communication with natural supports (clergy, coaches, big brother/big sister, other family, etc.)
- You can help this by: bringing copies of all relevant written information to the clinician; consenting for the clinician to speak with all parties; urging parties to respond to the clinician’s request for communication; asking the clinician why, if they are not pursuing elements of the above-described information
2. Culling of data
The clinician should be sorting through the information in order to make sure that all components that need attention are tended to. For example, if the child/family experienced a significant loss immediately before the development of symptoms, failure to integrate that fact into developing an understanding of the problem will likely lead to an inadequate treatment plan.
3. Develop a reasonable story (technically called formulation)
The clinician should pull together the information in way that establishes a reasonable theory/hypothesis about what the problem is. The clinician should be able to state the story in a way that is understandable to the parent/guardian, so you may give an opinion about the theory, and/or offer alternative theories, to be integrated into the plan for treatment. The reasonable story has to make sense, it has to fit with important elements of the history, and it has to lead logically to a diagnosis.
You can help this by: telling the clinician the best you’ve done so far at making sense of the problem; actively thinking about whether the story the clinician offers makes sense; speaking up about it if you have concerns.
4. Make a diagnosis:
Diagnoses are a way of summarizing or naming the problem. At best, there is existing research (also called the “evidence base”) that tells us something about how things will likely go if the problem remains untreated, and how to address the problem. When this is true, a correct diagnosis puts you in a position to know something with confidence about what the treatment plan should be. In the treatment of depression, for example, it is generally agreed that a combination of cognitive-behavioral therapy and medication is the treatment of choice. Regrettably, more often than not, the evidence-base is not sufficient to tell clinicians with certainty what is going to help. In the absence of sufficient evidence, clinicians serve children and families best by choosing treatment according to community standard or “best practices” according to diagnosis.
You can help this by: reading or otherwise informing yourself about the diagnosis; asking how the clinician arrived at the diagnosis and what level of certainty do they have about it; asking whether the diagnosis tells anything about how to treat the problem.
5. Develop a treatment plan:
- The plan for addressing the trouble must be based on the evidence, or if not available, on commonsense community standards. Sometimes treatment plans can demand quite a bit of time and work for multiple family members. If you are not resourced in a way that allows you to pursue all recommendations, the clinician should help you prioritize. The treatment plan should be comprehensive; typically it should include type(s) of therapy, whether medication is indicated; need for further consultations (for example, neurologic, genetic, developmental); lifestyle changes (diet, exercise, sleep, self-soothing practices). The clinician should tell you about the risks, benefits, and alternatives regarding each component of treatment. This last part is called “informed consent”
- You can help this by: being clear with the clinician about what you can and cannot realistically do; asking questions if you do not understand; asking the clinician about their experience in developing treatment plans for troubles like your child has
6. Assess progress and outcome:
- There should be well-defined criteria that are identified for assessing the effectiveness of the treatment. The more objective these markers are, the better to measure the treatment. While self-report is of value, a marker like “the child will feel better” is so vague that it would be of minimal help. More useful would be indicators that track frequency, severity, and duration of specific symptoms. For example, in the depressed child where he or she has been refusing to go to school and has stopped socializing, one might track frequency of school attendance and participation in social activities.
- You can help this by: asking the clinician how you’ll all know that your child is recovering; participating in tracking the agreed-upon markers; engaging others including school personnel to help with tracking.
- One further point: It can be quite difficult to know whether your child is in an effective treatment; most treatment takes time, there is almost always uncertainty about what will help, or how long it will take, and children often express reluctance about being in treatment. So a treatment that a child says he or she doesn’t like, that is taking awhile to have an effect, and where the clinician isn’t sure the treatment approach will be sufficient might still be the best treatment for your child! The best way to figure out whether your child and family are getting what you need is to ask lots of questions. The clinician is responsible for educating you about the treatment, and communicating in a way that allows you to make sense of the rationale for the treatment. If this kind of communication does not result in you being able to assess the quality of the care, it is reasonable to pursue a second opinion (if you are using insurance, they will cover a second opinion). The clinician providing a second opinion should speak openly and frankly with the current clinician as part of their assessment.
7. Engaging school staff:
- Apart from family life, your child spends most of her or his time at school. School staff may have valuable observation and experience of your child. Including them in the process stands to benefit your child in a number of ways: Their observations about your child’s function and behavior may provide clues leading to an accurate diagnosis and treatment plan; they will likely be able to help track outcome of treatment; should your child require school-based services, including them on the team may increase the chances they will recognize the need for, and support the idea of your child receiving these services. Should you have a concern that a school personnel has misunderstood or misread your child, a well-executed process of diagnosis and treatment planning might lead to better consensus regarding your child’s circumstance. Most schools have their staff operate as a team, so you may elect to engage other members of the team at school in order to support this process. Open dialogue between clinicians and school staff will also support clinicians being able to make specific recommendations to school staff about how to address issues that arise during the school day. Moreover, clinicians can help school staff and parents come to consensus about needed school-based services.
- You can help this by: Consenting for communication between clinicians and staff; participating in all of these communications; urging such communication where you see the need and it’s not happening; meeting with school personnel and clinicians to make sure clinical treatment and academic planning are well-integrated.