Providing effective treatment to families of children with developmental disabilities requires the establishment of a partnership between treatment staff and parents. This partnership involves many elements, including effective communication, mutual respect, clear boundaries, and clearly defined roles.
Although every treatment team member plays a role on the team, parents play the key role. They are the most important members of their child’s treatment team. While treatment staff will come and go, they will remain the central axis of any treatment team.
The responsibilities of a parent as an active treatment team member include:
- Sharing expert information about their child—no one knows their child better
- Actively participating in parent training sessions
- Observing, and/or actively participating in, additional direct treatment sessions
- Following through with agreed-upon behavior plans, embedding target skills within daily routines, and completing parent follow-up assignments
- Effectively communicating and advocating for their child’s needs
While treatment staff and clinical specialists may have various expertise and responsibilities on a case, our overriding job is to progressively improve the abilities of parents to be effective with their children. More to the point, we must transfer control to the parents, so that they can be independently successful with their child in the home and community. Irrespective of our success when directly working with the child, if we do not accomplish this transfer we have not done our jobs.
Statement of the Issue
Parents are understandably overwhelmed by raising a child with disabilities. They might be emotionally exhausted from worrying about their child. They might be struggling to address challenging behaviors or have no effective means of communicating with their child. They must adjust to the presence of treatment staff in their homes. Appointments and schedule changes must be juggled. Attention is stretched and divided between spouses, partners, companions, siblings, work, home, and the child with special needs. In some cases families are raising more than one child with special needs.
When in-home treatment begins, it can be a welcome relief for families. Therapists come into the home and begin to effectively engage their child. Parents begin to see their child progress with the therapists’ help. Challenging behaviors are gradually brought under control with the therapists’ aid. Parents are reinforced by their child’s progress and welcome the much needed respite. Therapists are reinforced by the child’s progress and parent gratitude.
It is very easy for therapists and parents to settle into the wrong roles at this juncture. When this occurs, treatment cannot result in functional, successful outcomes for the child and family.
Position Statement
Pacific Child and Family Associates treatment teams will establish clear roles in working with families:
- The role of the parent as an active member of the treatment team will be discussed with parents and any significant caregivers at the onset of treatment. The requirement that the parent participate as an active treatment team member in order to stay in treatment with the provider will be included in this discussion.
- The ultimate goal of transfer of control from therapists to parent will be discussed with parents and any significant caregivers at the onset of treatment. Transfer of control to the parents is, in fact, a behavioral cusp in which (a) access to new experiences and environments is provided for the family; (b) parent skills are recognized as having reached a more complex level, thereby making such access possible; (c) parents are instilled with confidence in their abilities to assume their rightful roles; (d) benefits are realized by everyone involved with the family; and (e) the family gains the self-reliance necessary to participate socially in their community.
- Expectations of the parents and ultimate goals will be formally discussed, planned, and documented at the initiation of treatment. Moreover, active parental engagement will occur in a progressive manner and under conditions designed to cultivate success.
- Expectations of the parents and ultimate goals will be formally discussed, planned, and documented on an ongoing basis throughout treatment, at least every 3 months, or more often if needed. Parent and Provider Support Agreements may be utilized if considered helpful in certain situations.
- Expectations will be individualized to meet the unique needs of the family. Moreover, a strength-based approach will be utilized to build upon established skills, interests, and knowledge. Parents will be part of the process of prioritizing the behavioral excesses and deficits that, once successfully addressed, will result in significant quality of life improvements.
- Expectations of the parents will be mutually agreed upon by parents and supervisors. For example, expectations for parent follow through with behavior plans will involve only those plans in which the parent has been trained to competency and can realistically be expected to implement confidently.
- Expectations of the parent role will be reasonable. For example, undertaking a parent data collection plan must be feasible for the family.
- Expectations of parent follow-through with behavior plans and embedding skill areas into daily routines will target change that is meaningful to the parent. Emphasis will be placed on activity-based instruction and activity-based maintenance of established skills.
- Expectations for parent participation will be clearly defined. For example, Parent Training sessions will be clearly designated on the schedule and 100% participation will be required. Parent follow-up assignments will be clearly assigned and reviewed at follow-up appointments.
- Expectations may change over time as the needs of the child and family change.
- Expectations will be clearly communicated and documented, so that both parents and treatment staff can refer back to agreed-upon roles and responsibilities.
- Progress will always be made visible and, when possible, captured via permanent products.
Pacific Child and Family Associates parent consultation team members will effectively fulfill their roles on the team:
- Parent trainers will work with the family to schedule parent training sessions on mutually agreed-upon dates and times.
- Parent support staff will always use instructional methods from the professional literature
- Parent trainers will act as guides when teaching parents.
- Parent trainers will utilize direct instruction, modeling, and role-play; practice with the child; and provide supportive feedback.
- Educational materials will be paired with modeling to teach skills and strategies to parents.
- Once parents have demonstrated understanding of a particular skill or strategy, role play will be used to practice before using it with the child.
- Parents will then be taught to implement skills and strategies in naturally occurring circumstances.
- Parent homework will be assigned.
- Parent follow-up with skill-building programs or behavior plans will be assigned.
- Parent participation will be documented.
- Expectations of the parent role, as previously outlined, will be honored.
Advantages of the Model
By establishing clear roles and expectations at the onset of treatment, as well as revisiting roles and expectations on an ongoing basis:
- We proactively avoid falling into the wrong roles
- Treatment is more effective and efficient
- We are able to achieve the ultimate goal of empowering parents to be more effective with their own child
Supporting Evidence
A review of the literature revealed the importance of the parent role and effective parent training in successful treatment. Parents’ confidence in implementing behavior plans leads to adherence with programming outside of therapy (Moore & Symons, 2011).
Conclusion
Pacific Child and Family Associates will define clear roles and expectations for both parents and parent trainers at the onset of therapy and on an ongoing basis. In situations in which cases may have gotten off track, we will take the opportunity to make a fresh start, utilizing this position paper. The ultimate concern is the effective treatment of the child.
Reference
Moore, T. R., & Symons, F. J. (2011). Adherence to treatment in a behavioral intervention curriculum for parents of children with autism spectrum disorder. Behavior Modification, 35(6), 570-594.
Contact us now!
For more information regarding our Parent Training and Autism Services program, please email info@pacificchild.com or call us toll free at (855) 295-3276. We are currently able to provide services in English, Spanish, French, German, Korean, Vietnamese and Armenian.