, Marcy Willard1 and Helena Huckabee1
(1)
Emerge: Professionals in Autism, Behavior and Personal Growth, Glendale, CO, USA
Abstract
Children with ASD can be supported more comprehensively when school teams make a concerted and committed effort to collaborate with diagnostic clinics, community agencies, and families. In some cases, a clinical diagnosis may be needed and the school team might be able to reduce the time and cost of the evaluation by providing any screening data the school has on-hand to the diagnostic team. Specifically, if the school-based team has completed cognitive, social-emotional, and adaptive testing, sharing these data with a clinical evaluation team may conserve critical resources and may allow for more comprehensive testing of ASD and comorbid disorders. These types of collaborations fall nicely in line with the principles of effective family–school–community partnerships as these data-sharing opportunities are in the best interest of the child (The power of family–school partnering (FSP): A practical guide for school mental health professionals and educators, New York, 2011). It is the authors’ firm belief that school teams should make every attempt to foster strong partnerships with families. This collaboration can be described as, “Partnering is a relationship involving close cooperation between parties having joint rights and responsibilities” (Schools and families: Creating essential connections for learning, New York, 2001). The continuation of care that is created when there is a symbiotic relationship between schools, parents, and community agencies can make a significant difference in empowering families to help their children to obtain the support they critically need across the many environments where they learn and live.
Keywords
Family–school partnership (FSP)Family–school–community partnershipsParental advocacy in ASDSchool advocacy for familiesSchool referrals to clinical evaluations in ASDParental anger, denial, and grief in ASDParental involvement in urban schoolsFSP improves academic outcomesLeffingwellWraparound servicesAlthough different, neither school-based assessment nor clinical diagnosis is considered inferior; simply different processes for distinctly separate purposes. However, it is proposed in this chapter that it is entirely possible, and indeed, can be considered best practice for school teams to collaborate with outside providers such that both teams can inform each other and the child may be eligible for school-based services; as well as, considered for a clinical diagnosis. Schwartz and Davis (2008a, 2008b) explain, “A more appropriate role for most school psychologists is to act as the triage coordinator for the data coming out of the schools that can inform the diagnostic team” (p. 1518). Thus, in addition to the educational eligibility role defined in Chap. 18, school psychologists (and other school-based professionals) can serve as the liaison between the school, parents, and community clinicians in order to get families the critical help they need.
As shown in the table on the next page, the providers are different in a clinical evaluation; typically primarily conducted by a licensed psychologist and potentially other licensed professionals on an interdisciplinary team; in schools they are conducted by the IEP team . The outcome is different in that children who are assessed in a clinic may also be diagnosed with comorbid conditions; as well as autism; whereas school-based evaluations are only intended to determine eligibility for services. The evaluation tools are different as has been explained throughout Chap. 18; clinical tools are used for diagnostic assessments, while schools may utilize more informal assessments and observation protocols, as well as interviews and academic testing. The cost is entirely different as clinical evaluations tend to be at a significant cost to families; whereas school-based assessments are free to families as an obligation of FAPE. Finally, the location of the evaluation is different because clinics and hospitals conduct diagnostic assessments, while school-based assessments are conducted in the school or district building settings (Table 19.1).
Table 19.1
Clinical diagnosis vs. educational identification of ASD
Clinical diagnostic evaluation | Eligibility determination |
|---|---|
Provided by a licensed psychologist, pediatrician, or psychiatrist OR an arena evaluation may be multi-disciplinary including: Developmental Pediatrician, Neuropsychologist, Speech Therapist, Occupational Therapist, Doctoral Interns and Practicum Students in Psychology | Provided by a Child Find or IEP team which may include a school psychologist, speech therapist, occupational therapist, and special education teacher |
Outcome is a Diagnosis of ASD and differential diagnosis of potential comorbid conditions such as ADHD, Anxiety, or Depression | Outcome is a determination of eligibility for services under the ASD criteria and creation of an Individualized Education Program (IEP) |
Evaluation must utilize diagnostic tools such as the ADOS or ADI-R or both as well as clinical observation, interview, standardized assessment, and parent participation | Evaluation must use tools necessary to identify every area of potential special education need. This may include standardized assessment and informal measures but there is no requirement that diagnostic tools be used |
Evaluation costs $1500–$3500 and may be covered by insurance | Evaluation is Free as a part of FAPE |
Evaluation can occur in a medical clinic, hospital, or psychologist office, either local or out of state | Evaluation must be completed through local school district |
The referral from a school-based professional can enact better outcomes for students. Indeed, Schwartz and Davis (2008a, 2008b) explain, “The key to working with children with ASD and their families is for school psychologists to recognize when additional support is necessary and to know to provide, or make the appropriate referral to professionals who can provide, the type or amount of support needed to help the child succeed”(pp. 1517–1518). This means that school professionals should be prepared to not only support students and consider eligibility for an IEP, but also be ready to deliver appropriate referrals for clinical and community services , as needed.
Wraparound and Collaboration between School and Community Providers
In many cases, the school-based professional can best serve the client by providing a comprehensive support structure that includes home, school, and community providers. If a school is to receive a diagnosis from an outside clinic, the team has several obligations. The team must consider these data as a part of the eligibility review process (OCALI, 2014). At a minimum, the school team should consider whether or not the outside evaluation provides some evidence that an eligibility review at school is needed in order to determine services. Further, the outside evaluation may be used to expedite the school process in that if the outside evaluation includes standardized assessment data such as adaptive skill scores, cognitive scores, or emotional rating scales, the school team may not be required to repeat these assessments. Finally, in the case where the outside evaluation suggests the need for services, the school team can and should begin providing services (potentially Tier 2 or Tier 3 interventions), even before the eligibility meeting (Schwartz & Davis, 2008a, 2008b). Taken together, although the eligibility determination and medical diagnosis process are quite different and separate procedures, they can share a symbiotic and collaborative relationship, which is in the best interest of the child’s need for services, both in and out of school.
In terms of this symbiotic relationship, the school team can also inform the diagnostic team in helping the child obtain a medical diagnosis and provision of services at home or in the community. For example, the school provider may conduct a screening process and these data may be shared with the diagnostic team by way of a letter or record review. It also may be that the school completes a full IEP evaluation for ASD, determines that the child is eligible for services, and then provides the diagnostic team with these data as a part of the outside evaluation.
This collaboration may allow for the family to obtain Cognitive Behavioral Therapy, Applied Behavior Analysis Therapy, parent consult services, or medication through a psychiatrist or pediatrician, under their insurance plan. When the child experiences significant impairments in multiple environments, this sort of collaboration can be critical in order to obtain better outcomes for students with ASD. Recognized experts in school-based services for ASD (Schwartz & Davis, 2008a, 2008b) explain, “Likewise, the literature suggests we may see more robust results (i.e., quicker acquisition and increased generalization) and provide better outcomes for children if we teach them new skills in a variety of settings (e.g., general education, community, and self-contained) and with a variety of materials” (1518). Given these factors, both a school evaluation and a clinic diagnostic assessment are needed, and again, the collaboration between both teams is extremely helpful to the family.
Collaboration and Partnership with Families
This section is written for school teams.
The importance of partnering with families cannot be overstated. Children make more progress and school professionals find increased success, when parents and school teams are on the same page. Lines, Miller, and Arthur-Stanley (2011), recognized experts in collaborative partnering with families, explain it thusly, “We believe that family-school partnering must be a ‘non-negotiable’ component of preschool through high-school transitions. There must be a pervasive ‘no excuses’ attitude” (p. 13).
It should be stated here that although there is certainly variation in symptoms , the families that school teams are tasked with helping generally have suffered a great deal on the part of their children’s disabilities. Unfortunately, many parents of children with disabilities feel very much alone. To make matters worse, many parents feel blamed by school teams for their children’s behavior problems. A recognized expert in the parental grief process (Moses, 1983) identifies the powerful feelings that parents experience “dramatically influence their relationships with professionals who work with their children” (p. 157). It may be that a well-meaning, hardworking, and under-resourced school professional is caught in the cross-hairs of parental grief, denial, guilt, and shattered dreams. This serves as no excuse for parents or school teams to give up on each other; rather, shared understanding and shared responsibility serve as the foundation for successful family–school partnerships (Christenson & Sheridan, 2001; Esler, Godber, & Christenson, 2008; Lines et al., 2011).
Parents are faced with modifying dreams and expectations for their children and deal with the “devastating and continuing loss of having an impaired child” (Moses, no date). However, even in the throes of this grief, school teams and parents can share an effective, collaborative, and essential relationship that is shown in the research to lead to best outcomes for kids. Indeed, parental involvement in school-based services has been shown in large-scale meta-analysis, including 41 studies, to be directly linked to better outcomes for students, including higher GPAs and academic test scores (Jaynes, 2005).
Parents of children with disabilities often experience anger, depression, and guilt. Many parents find that this guilt originates from identifying broken dreams and expectations; as well as, a lack of control over their children’s behavior and outcomes. Moses (1983) explains, “When an initial diagnosis of developmental disabilities is received by a parent, a grief process begins. The parental dreams are almost always shattered by learning of the disability … the initial diagnosis often marks the destruction of a cherished and significant dream” (p. 157). Of course families may have all kinds of reactions to the news of their child’s disabilities. Some parents may not experience broken dreams, but almost certainly there is a period of adjustment as parents are continually faced with having to adjust some of their plans and expectations for their children.
Now, putting oneself in the shoes of the school-based professional , it is important to think about calls home to families and what these “reports” might mean to them. The very sight of the phone ringing with a call from the school may set off a familiar pattern of grief, anxiety, and panic. “What did my child do now?” parents begin to think. One particular parent consulted on the writing of this book, indicating the importance of reaching out to families in a positive way (Leffingwell, Personal Communications, April 28, 2015). Leffingwell (2015) shares that a positive call from the school brings an indescribable sense of comfort and joy; not often experienced by parents of children with disabilities. Based on this conversation , one of the authors has included as part of her daily practice what she terms a “+1” call every day. That is, she makes it a point to call one family every day with entirely good news. Examples might be:
I noticed how happy Joey seems today.
I noticed that Margot was socially reciprocal in group today.
I noticed that Christie was kind to another student today.
I noticed how Micah got started right away on his math today.
I noticed that Nicholas recovered from a setback today.
I noticed how Mathew never gave up on a hard task today.
A statement like those mentioned above may be the first time a parent has ever heard something positive from the school. Sometimes just one “+1” phone call is the precise element that creates a family–school partnership, even when there might have been a contentious or challenging relationship in the past. When school professionals reach out like this, parents tend to believe that the school professional cares about their children and see the delight and magic that lies within them. Sometimes, this type of communication may empower families and help them find inner strength to endure the challenges that an autism diagnosis presents.
Alternately, when nothing but negative communication comes from school, this bond can be quickly broken, causing families to feel mistrustful, and alone in their fight for their children with autism . Moses (1983) defines the process thusly, “Like the other states of grieving, anger serves a unique function. One’s sense of justice is violated when an unfair event such as parenting an impaired child befalls a person. Anger is the vehicle that permits the parent to restructure their concepts concerning justice … allowing that parent a more comfortable system that can better explain or accept life’s unpredictable occurrences” (p. 163). Sometimes in the process of observing their child’s suffering and pervasive challenges, parents of children with disabilities feel anger directed at school professionals is justified. However, even in the face of these seemingly unscalable mountains, family–school partnerships are possible. The authors of this book implore school professionals to remember that, “both school and home reciprocally influence and help determine the path children’s development takes. Home-school collaboration reflects the critical interface these two vital, socializing systems have on children’s learning” (Esler et al., 2008, p. 918). School-based practices such as the “+1 call” can be the impetus for family–school partnerships and make a monumental difference for families.
Another important role family–school partnerships can play is in a learning capacity regarding the child’s needs in various settings. School professionals can offer expertise on learning needs, behavior management, peer relationships, and communication with teachers. Parents, as the experts on their children, can offer expertise on how the child functions at home; the child’s wants and desires, background information on their child, challenges at home, and family dynamics. Schools are charged with learning from families to enhance services and practices.
It is generally the case in one author’s experience that behavior plans that fail to include the parent’s participation are generally unsuccessful. It is her firm belief that for children to successfully change their challenging behaviors, the parents and school teams must be working together. This might include point sheets that go home for a reward, daily feedback to families via email, or reinforcement systems that include a home–school component. For example, the parent might buy a book at the book-fair and leave it with the school psychologist to offer the child upon successful completion of an assignment in class. Alternately, the parents might contact the school team and share that the child did homework independently and be rewarded at school with a sticker, praise, or a marshmallow. There are a myriad of options school teams can discover here. The take-home message is this: to serve the child, school professionals MUST serve the family.
Collaboration and Partnership with Community Agencies
School-based teams are often charged with two tasks (although the clinical piece is not legally required) when they suspect a child may have an Autism Spectrum Disorder . First, they must determine whether or not the disability likely is having an educational impact, requiring specialized instruction and in that case an IEP evaluation must ensue. Second, the team needs to think about whether or not a full clinical diagnosis is needed. The first issue was addressed elsewhere in Chap. 18 where the elements of a school-based evaluation were discussed. The second issue about clinical diagnosis is considered here.
As mentioned in Chap. 18, Wraparound and Positive Behavioral Interventions and Supports share an integrated and best-practice context for supporting families in schools and community settings. Wraparound is often referred to as a service; however, wraparound is actually a planning approach that includes relevant community members in a collaborative relationship that serves to improve outcomes for students (Eber, Sugai, Smith, & Scott, 2002). Wraparound programs include essential elements to be effective for families. Eber and colleagues (2002) suggest these components : “(1) Community based, (2) Individualized and strengths based, (3) Culturally competent, (4) Families as full and active partners, (5) Team-based process involving family, child, natural supports, agencies, and community supports, (6) Flexible approach to funding, (7) Balance of formal and informal community resources, (8) Unconditional commitment, (9) Development of individualized services/support plan based on a community/neighborhood, interagency collaborative process, and (10) Outcomes determined and measured through the team process” (p. 73).
A school psychologist or other IEP team member with expertise in childhood disabilities should consider wraparound as an approach for understanding the needs of students within the larger systems of their lives, such as the home, neighborhoods, community, agencies, culture, and belief systems that are important to them. Wraparound can be defined as, “This process is used to build consensus within a team of professionals, family members, and natural support providers to improve the effectiveness, efficiency and relevance of supports and services developed for children and their families ” (Eber et al., 2002, p. 73). In order to effectively incorporate best-practice wraparound programs into the school team’s practice, it is important to know when children should be referred to community providers for support. Following in this next section are guidelines for determining when to make such referrals.
Guiding Questions for a Referral to Outside Providers
1.
Does the child’s potential disability have a pervasive impact on his or her life primarily outside of the school building?
In this case, it could be that the child’s disability does not impact his education significantly, but the parent’s report concerns about friendships and extracurricular activities outside of school. Thus, a clinical diagnosis may be helpful to address the family’s concerns. The school team could help with the evaluation process, but there is not necessarily a need to go forward with special education eligibility determination.
2.
Does the child or family need intensive therapy that is likely to go well beyond the scope of what can be provided at school?
It may be that the child clearly shows a need for Applied Behavior Analysis therapy, Cognitive Behavioral Therapy, or Family Systems Therapy (for example), which may not be available through the school. In this case, medical diagnosis may allow for insurance coverage for these therapies. One potentially complimentary service the school could provide in this case would be “lunch bunch” or social skills groups. In an ideal collaborative relationship, consistent with the wraparound approach, the outside therapist and the counselor or school psychologist could collaborate on the specific skills to address during social skills groups at school. This model has a distinct advantage over outside services in that the students in the group are the very peers who the therapist is trying to teach kids to interact with; aiding in generalizing of skills. The inclusion of typical peers who are trained to support students with ASDs can be a critically important factor in social skills groups (Baker, 2014a, 2014b; Wolfberg, 2003). Further, lunch bunch and similar programs can provide a support group, which can protect against bullying and assist with navigating the social world at school.
Often, the authors have found that these lunch groups give the child with an ASD the opportunity to be exposed to appropriate peers who provide modeling and emotional support. Further, the facilitator can aide peers in the offering of feedback about any misconceptions of recent social situations. For example, one of the authors has found that the child with ASD feels “wronged” or rejected, when in fact, the peers report that it was he who did the rejecting due to misinterpretations . Thus, correcting these ill-constructed social models can have a truly therapeutic impact on students with ASDs in the school building.
3.
Does the team suspect comorbid conditions such as ADHD, Anxiety, Depression, Bipolar, Attachment Disorder, or a Trauma- and Stressor-Related Disorder?
In this case, it is highly likely that services beyond the school may be necessary. The only time when the inability to provide these services could be in conflict with FAPE would be when the child’s emotional disability is adversely affecting his education. In that case, school services should be implemented; however, there is no requirement that the services be mutually exclusive. Indeed, it may be that the services provided by the school to address the emotional condition are developed and facilitated collaboratively with therapists in the community (again, this is consistent with principles of FSP and wraparound explained earlier). If the child’s autism and comorbid emotional disability are significantly pervasive, it is reasonable that the school team has the requirement of meeting the child’s school-related needs; the remaining supports can be provided in the community through more intensive therapies, which may necessitate a clinical diagnosis to secure.
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