Parent participation has become a topic of conversation across the province of Alberta, particularly by parents and service providers in regards to Developmental/Behavioural Support or Specialized Services (this is the terminology in Alberta that refers to home and community focused behavioural intervention – that may include “ABA” or other models of intervention.) Before addressing this question with reference to the provincial legislation that funds such programs, it is important to first consider what makes most sense in terms of having the best outcome for a family.

Models of intervention for individuals with ASD share in an overriding objective to build a program where an individual gains skills and experiences with the long term benefit of a higher quality of life. Although there are diverse philosophies on what goals to set and how to implement strategies, parents and family members are always viewed as key members of any intervention team. Parents and family members are the support people who have the lifelong vested interest in the person with ASD under their care. They are the people providing or ensuring the provision of support 24 four hours per day, 7 days per week, 52 weeks per year.

Professionals in their respective area of discipline (Psychology, Speech Language Pathology, Occupational Therapy, Physical Therapy, Medicine, etc…) typically take a balanced approach between consultation with the family, assessment & monitoring, and direct therapy when necessary. However, under any intervention model it is a professional’s objective to work their way out of their job; to transfer skills and knowledge to all others in the life of the individual they are helping (their parents, siblings, grandparents, extended family members, special needs assistants, community support aides, respite workers, teachers, teacher assistants, etc….) In this respect all professionals follow what is referred to as the “consultative” model as a standard in their practice.

In developing an effective intervention program for individuals with ASD, under established rehabilitative practices the program should certainly include goals to address the challenges related to generalizing skills across multiple settings. To ensure the best possible outcome of an intervention this is extremely important. At the time of life when most individuals with ASD are involved in an intervention program, there are many instances when they are left under the care of a sibling, a relative, a neighbour, or another responsible adult. This might be for brief moments while the parent is looking after a baby, doing laundry, reading a book or having a bath. This might be for longer periods of time; outside the home, in the community, in an educational program, or in an employment setting. After intervention is discontinued, the skills that were taught are important in multiple settings through their life – and often when a parent or family member is not by their side. Regardless of whether an intervention goal is related to communication, behaviour, independence, motor development, or another area of need, ensuring generalization of skills is critical for the best outcome for both the individual and their family.

In developing an intervention plan that ensures strategic and practical parental involvement, there are other important practical considerations. Intervention programming must take into account the needs of other family members, siblings, grandparents and other extended family members. Circumstances involving a single parent or parents who must work multiple jobs for a living are situations where an intervention program must find creative ways to ensure that the parents are key members of the intervention team.

Hence in any best practice model based on established rehabilitative practices, it is best for a parent to be involved and directing the program to their maximum capacity… however, that does not necessarily mean that they are present with the therapists and aides during each and every hour of the program. This might be impractical, and this might even be counterproductive when work is being done to address challenges with the generalization of skills accross multiple settings.  An intervention team must be dynamic, flexible, and creative in assisting the family to be fully contributing members of the intervention team.

In terms of Alberta legislation for Specialized Services or Developmental/Behavioural Support through the Family Support for Children with Disabilities (FSCD) program – this perspective is completely consistent with the FSCD Act and the FSCD Regulations. FSCD legislation was developed with an emphasis on supporting established rehabilitative practices and programming that is reflective of the unique individual needs of the child, plus the strengths and circumstances of the family.

While recent changes to FSCD policy and procedures were intended to provide clarity to the FSCD Act and FSCD Regulations – some families are reporting misinterpretations of policy and have sought support in the community on how to manage disagreements. Many parents recognize that in order to learn and continue to be a powerful advocate for their child and family it is important to stay connected. Contact Autism Calgary and other community groups to find opportunities to learn from other families!