Engagement and roles

Family Engagement

The OAP's emphasis on family-centred care creates a fundamental basis for service delivery. This offers new possibilities in parent and family supports through a range of options, including peer-to-peer (example (e.g.), parent-to-parent) support and connection with relevant community-based family support organizations and access to parent and family education opportunities. This approach values parents and caregivers as experts on their child and as key decision makers in their child's interventions, but it also recognizes their lifelong commitment to their child's learning and wellness. Opportunities to participate in evidence-based parent training interventions will be offered so that families can help their child to learn and use new skills in their everyday lives, and actively participate in their communities.

Families/caregivers and youth want to experience a sense of trust with the clinicians entrusted to work with them. Strong communication practices and transparency in both process and decision- making are necessary components to creating and sustaining a collaborative relationship with the family. This is particularly true during transition planning. It is critical that families/youth have a complete understanding of both current services and what will follow. Knowing why, how and when they could transition to a new phase of behavioural intervention and what each stage will look like for them is important.

Parents can expect:

• to be recognized as the experts regarding their child, bringing essential information on the child's strengths and challenges to the process of making clinical decisions
• to play a central role and be actively involved in assessment, goal-setting, intervention, decision-making and review processes
• that clinicians will bring to their conversations their expertise and experience about a broad range of individuals with Autism Spectrum Disorder (ASD) and knowledge of the evidence-based literature
• that their family's culture will be treated with sensitivity and dignity
• that conversations will be mutually respectful
• that clinicians will share their expertise in ways that are understandable, respectful of culture-specific considerations and transparent to the family
• to receive written summaries at key decision and update points (e.g., treatment goals and assessment and progress results, team meeting minutes)
• to be welcomed to ask questions and update the treatment team on new information
• to be provided with information about any consents required for services and sharing of their personal health information in a manner they can understand (e.g., either verbally and/or written)
• to share information openly and to work collaboratively with the clinical team
• to understand OAP-based interventions, transition processes and their implications

In addition, youth can also expect:

• to have their priorities, strengths and interests incorporated into their intervention plan
• to be recognized as the experts in their own lives
• to be active partners in all aspects of the assessment process and treatment planning decisions
• to have opportunities to learn self-advocacy skills
• to have their privacy respected

The Role of the Ontario Autism Program (OAP) Behavioural Clinician

As an expert in assessment and behavioural treatment options, the role of the OAP Behavioural Clinician is to lead these collaborative processes and to assess, apply and recommend relevant and indicated treatments and supports or refer to appropriate resources as outlined in the program guidelines.

OAP Behavioural Clinicians can be expected to:

• apply their expertise about- and experience with a broad range of individuals with ASD as well as their knowledge of the evidence-based literature and application of that information to ensure optimal intervention
• be transparent and collaborative with parents, youth and other community partners, with parent consent, with respect to the treatment planning process
• consistently demonstrate inter-professional collaboration and partnership
• share their expertise in ways that are understandable to the family
• provide families with information about the data being used to determine their child's progress
• accurately assess and evaluate the effects of intervention, and to make adjustments as needed
• provide written summaries at key decision and update points (e.g., meetings, review of treatment goals and assessment and progress results, team meeting minutes). These are shared with parents and other team members as appropriate. As part of clinical practice, clinicians are required to keep detailed clinical notes of all relevant communication
• ensure that conversations are mutually respectful
• ensure that families' cultures are treated with sensitivity and dignity

Note: Adherence to Ontario's legislated consent to treatment requirements is expected throughout OAP service and supports provision. Parents/youth will be provided with information about Ontario's consent to treatment processes and the support they need in order to make an informed decision about consent to treatment and the sharing of their personal health information, as needed.

Personalized and Family-Centered Care

The term ‘family-centered care' is well aligned with the concept of ‘personalized services' in the context of services meant for children and youth with ASD and their families. This term recognizes the child at the heart of service decisions and delivery, while also recognizing the key role of the family within such decisions and service provision.⁸

Child and family:

• Caring and able teams.
• Shared vision.
• Common language.
• Child and family's strengths and needs.
• Evidence based.
• Outcomes-focused.
• Structured and coordinated.
• Supported and supportive.
• Flexible and responsive.
• Seamless and transparent.
• Open and reciprocal communication.
• Voluntary partnerships.
• Family involvement in care and decisions.
• Services contextualized to family's culture and environment.

Inter-professional Collaboration

Inter-professional partnerships are essential and are embedded in OAP services and supports. Collaboration can take many forms. The scope of practice of each profession involved will be understood and respected.

Reports of physicians, family support providers, other professionals, educators and clinicians can be important sources of assessment information. These clinicians may also serve as consultants during intervention planning and/or delivery. At the same time, OAP clinicians should also share their reports with other involved professionals. At other times, other professionals may provide needed supports and services (e.g., to ensure generalization of acquired skills across the child's environments, to promote successful transitions and to enable joint professional development for key partners).

The OAP Family Team

Families may benefit from having a point person to help them to navigate both the OAP and the wider service system. An OAP Family Support Worker (FSW) will be identified for the family upon entry into the OAP, and their role will be determined in collaboration with the family. Although the FSW may change over time, families will always be aware of who their key contact person is and how to contact them.

An important aspect of inter-professional collaboration is the development of an OAP Family Service Plan (FSP), with input from the clinicians involved in supporting the child and family. At the initial family meeting following OAP entry, the OAP Family Support Worker and the family will work together to begin a personalized OAP Family Service Plan. The Family Service Plan may include the formation of a Family Team, should the parents wish to do so. This plan will continue to evolve throughout the course of the child/youth's time in the OAP.

The OAP Family Team is formed to coordinate and align the broader services that a child/youth may be receiving with their OAP behavioural services on an ongoing basis, including services that begin before entry into the OAP. It also promotes consideration of the whole child/youth. Its membership is made up of participants chosen by the parent(s)/youth. The child/youth may also be a member of the team. Members may include clinicians who provide parents or their child with regular support, education and/or intervention, other family members, service providers, educators/school representatives, and community-based service providers as determined by the family. The OAP Behavioural Clinician is also a critical member of the team. Special guests may be invited depending on the agenda. Membership is expected to shift over time as the needs of the child/youth and the services they are receiving evolve. As a family receives OAP services and supports, the family and Family Support Worker contribute to the ongoing development of the OAP Family Service Plan, and if requested by the family, the first meeting of the child/youth's Family Team is held.

In some situations, if the child has multiple and/or complex needs, the OAP Family Support Worker may refer the family to Coordinated Service Planning under the Special Needs Strategy. In these situations, the OAP Family Support Worker will remain involved with the family and will participate in Coordinated Service Planning.

Family Team meetings do not occur without the family/youth present and/or their explicit consent/assent. At the first Family Team meeting, the goals of all identified members of the team are reviewed, augmented and added to the OAP Family Service Plan. These goals will be aligned with the goals in the child's OAP Behaviour Plan, which is part of the overall Family Service Plan, as available. Goals will be described in family-friendly language. The Family Team will also discuss and jointly problem-solve any concerns or potential challenges. The date, time and location of the next meeting are also determined at this meeting. Following the meeting, a summary and next steps are provided to all participants.

Although the first Family Team meeting is led by the OAP FSW (or parent, as preferred), responsibility for facilitating future Family Team meetings is determined by the parents with the team members. An OAP Behavioural Clinician must be in attendance. A Family Team Lead is identified by the team at the first meeting, and is responsible for team communication and planning. S/he may or may not be a family member, an OAP clinician or another team member who provides services outside of but in collaboration with the OAP.

The Family Team will maintain a current OAP Family Service Plan (FSP). This is an evolving living document that identifies the child/youth's complete set of goals and the team member most responsible for each. Members will regularly share new information, review data and progress towards the FSP goals. At subsequent meetings, at least every 6 months, similar updates are provided by all members, including data and any changes in goals and intervention. Communication expectations are developed and regularly modified by the family and their team.