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Special NeedsHow to Collaborate – Parenting Special Needs Magazine

How to Collaborate – Parenting Special Needs Magazine

How many of us remember when we heard our child has a special need? Time stops, and all that matters is finding out information on how to support them. In the weeks or months after, time speeds up, and we can get lost in referrals. We try to do the research on which provider does what, and then get overwhelmed with it all. Our child goes through different types of evaluations, and different providers recommend different things. Most of the time the goals or strategies they recommend fall under different categories. In these instances, it’s hard to pick and choose which provider we think has our child’s best interests in mind and is accurately representing their needs. Is the school IEP right about their goals? Perhaps the Speech Pathologist knows best? What about Applied Behavior Analysis (ABA)? From the authors’ perspectives, as ABA practitioners and parents, we know that navigating this world can be overwhelming and frustrating when providers don’t communicate with each other. In ABA, this one aspect where Positive Behavior Support (PBS) stands out over more traditional ABA methods.

PBS, a branch of ABA, paved the way for a more collaborative and compassionate approach to therapy. PBS providers prioritize the input and values of the client and family in treatment decisions. In addition, PBS providers will collaborate with other therapists supporting the family. PBS goes beyond traditional therapy methods by supporting a true multidisciplinary and team-based approach. Essentially, PBS providers view people like parents, teachers, neighbors, and other therapists (not an inclusive list) as relevant parties in behavioral health services. Providers do this is to make sure that everyone is on the same page, working on the same goals.

PBS is also focused on inclusion, meaning that the providers emphasize the need to provide therapy in multiple settings. This could include settings like home, school, the movie theater, church, etc. Providers will support practicing learned skills in these different environments because the research shows that children will learn more quickly, and skills will maintain. Another deviation here is a focus on self-determination. PBS providers are trained to focus on goals and treatments that are important to the child or family, not society as a whole. It’s not about the child acting as a puzzle piece that needs to fit, it’s about giving them the skills they need and want to be successful in their own way.

As mentioned, PBS providers focus on assent in addition to traditional consent methods practiced by the medical and mental health fields. Assent simply means that the child agrees to the goals and treatments the provider recommends. PBS providers focus on positive quality-of-life changes for the child and the family as a whole unit. Generally, the PBS provider will look at the family quality of life in different domains, including social, self-advocacy, or community domains. Another point here is that it’s not just about the child, it’s about who is supporting that child. “It takes a village” is a cliché for a reason.

Now that we have some ideas on the values of PBS in therapeutic settings, we need to focus on how we as parents can close any of those collaboration gaps that are happening across providers. Here are some steps that we recommend taking to make sure your teams are using PBS practices:

1. Getting Everyone Together: The Who

The first step in the collaboration process is to identify all stakeholders who are and should be involved in the ultimate outcomes for your child. Enlisting family members, other individuals who have a direct impact on daily life (I.e., close friends, religious/cultural/spiritual influencers), and members of the interdisciplinary team (I.e., teachers, therapists, physicians). This is your “stakeholder team.”

2. Ultimate Outcomes to Achieve: The “What” and the Why”

Once we have gathered our stakeholders, we begin the person-centered planning process, which should always include the individual recipient (whenever possible) of any services needed to achieve the desired outcomes. A values-driven approach should be taken to identify the ultimate goals that are meaningful and impactful to improve the overall quality of life. PBS practitioners may often use a Quality of Life (QOL) assessment which evaluates the extent to which the target individual can display behaviors that lead to independence with health and safety skills, self-advocacy, communication, productive activities, community participation, and social skills. This tool assesses the level of support that the individual requires to achieve their personal goals, as well as the extent to which they or their loved ones feel they are satisfied with their current abilities. The goal here is to identify meaningful long-term goals and the collaborative effort required to achieve the desired outcomes for the individual. This process of person-centered planning and collaboration essentially establishes the “what” and the “why.” Why are we here and what is our purpose as a collaborative team? It is a way to get everyone on the same page and working with the same end goal in mind.

3. Communication Breakdowns

Quality of Life (QOL) assessment Collaboration cannot be achieved without effective communication. It is important to ensure that stakeholders establish processes for communication to flow at the right frequency. During the initial congregation of the collaborative team, the team should identify how often and how to best communicate on needs and progress. There should be pre-established check-ins for stakeholders to come together for progress updates, to make modifications as needs change, and troubleshoot any barriers. This is essential to ensure desired outcomes are on track to be achieved. When there is a breakdown in communication, conflict may arise. It is important during these moments to remind the team why we are all here and to focus on the target individual’s rights and needs.

4. Differences of Opinion

Despite every effort to mitigate conflict during stakeholder collaboration, each member of the team comes with different experiences, areas of expertise, approaches, and opinions. When differences in opinion occur, it is best to lean on science and evidence-based research to drive decisions. Equally important, stakeholders should place the best interests of the target individual at the forefront of all decisions made.

5. Navigating Tough Conversations

Tough conversations are something we all experience throughout the course of our lives and truly cannot be avoided, especially when it has an impact on a loved one. Author Brene Brown has written, “clear is kind,” and we believe that it is important to be clear and concise whether in spoken or written word to ensure your message is conveyed appropriately. During tough conversations we all need to be mindful of our tone and non-verbal communication. Empathy and compassion towards others go a long way as does active listening. We recommend maintaining assertive communication during tough conversations, which is essentially the manner in which your concerns are voiced directly and honestly while maintaining an open mind to others.

As mentioned, PBS is a branch of ABA therapy that emphasizes collaboration to empower families in the decision-making process for their child. PBS’s core value is to increase a family’s quality of life. PBS enlists all stakeholders to ensure meaningful outcomes are achieved and maintained over time.

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