The Aurora Model for Family Services; Family Education, Support and Collaboration
The reference to ‘parent training’ is well embedded in behavior analytic literature and identified by most insurance companies as part of the authorization for behavioral services. I’ve been making ‘house calls’ for going on 40 years and previously presented research on ‘parent training’ to include a focus on fathers for which there have been far less studies as opposed to mothers.
Over the years, I’ve also wondered about and never really liked the term ‘parent training’ since we are not ‘training’ people to be parents. In fact, parents sometimes rightly take offense when this term is used. While there are parents who need more specific supports, the majority of parents do just fine. Most also have support networks ranging from family, friends, in their community and, sometimes, professionals through social services.
‘ABA’ (to be subsequently identified as’ autism services’) agencies are not training adults to be parents but should be providing parent education, support and collaboration. At Aurora Behavior Services, we do not provide ‘parent training’ but exactly such education, support and collaboration with parents/primary caregivers.
Many agencies meet with parents/primary caregivers about once a month for an hour or so and call it ‘parent training’ as required by insurance companies. But this is neither ‘parent training’ nor education and collaboration but a BCBA/parent meeting just as parents schedule for parent/teacher meetings in school. And BCBA/parent meetings are needed as a point to review and discuss the child’s progress and overall status. But this is not ‘parent training.’
In fact, it is time to lose the word ‘parent training’ from behavioral literature and, especially, in the day to day practice of autism service agencies. At Aurora Behavior Services, we are building our unique and uniquely supportive model for parent education, support and collaboration.
Please pardon the next analogy, but nobody would expect parents to instinctively know how to care for a child identified with severe asthma or juvenile diabetes. For some reason, however, parents are often challenged by both family, friends and, sometimes, schools for not naturally knowing what to do for their child with autism or, more so, with profound autism.
To note, I offered the initial disclaimer because autism is neither a disease nor an illness but a unique developmental behavior status. And many persons on the spectrum and their families/caregivers do not need or ask for specialized supports. But at least about a quarter of those on the spectrum are considered to have ‘profound’ or more severe autism whereby comprehensive support and instruction is imperative. And simply sitting with a cup of coffee and talking about things will not suffice.
There is an additional percentage of children on the spectrum who, while not severely or ‘profoundly’ impacted, can still greatly benefit from more specialized, individualized and compassionate services and support. This because autism can be a Crisis of Instruction; that is, children who still struggle when provided more traditional best instructional and educational
practices. And when children are struggling, it is not uncommon for their parents/primary caregivers to struggle as well towards understanding how to best help them be successful and increasingly independent. How to learn and find the things they enjoy
In this way, and correctly so, insurance companies are starting to expect autism service agencies to provide support directly to parents/primary caregivers of the children we serve in natural settings to include home and the community. We also know that parents/primary caregivers of children with more severe autism can often find themselves increasingly isolated from their community and, sometimes, even family. Increasing quality of life and the specialized knowledge and skills needed to do so are primary components of the support provided through Aurora Behavior Services
Over my decades of working and collaborating with so many families/primary caregivers, it’s been my experience that this isolation is more often NOT for lack of investment and care by extended family and friends but for their lack of understanding, ability and comfort in supporting their little cousin, nephew or niece, granddaughter or grandson or family friend.
In that immediate families may also share in the lack of the specific knowledge needed to best support the child; it is here where Aurora Behavior Services provides our unique focus. Just as parents of children with more traditional medical need are provided the necessary knowledge and education as to how to best support their child, we at Aurora provide parent education, support and collaboration towards increasing success, qualify of life, independence, needed skills and the range of activities of families of children who are more impacted by autism spectrum disorder.
Aurora Behavior Services does not offer ‘parent training’ but education, support, and collaboration to and with the families/primary caregivers we serve. As we get to know a child, we welcome extended family members and/or family friends identified by the family to also participate. We do this through a combination of Center and home-based services. A primary component of our assessment process (to be discussed further in a subsequent blog) includes time observing the child in their home.
If autism service agencies are not supporting families in areas of need which are identified by the family, all that’s happening is the creation of pretty graphs…and sometimes, frankly, not so pretty graphs. At Aurora Behavior Services, such direct family support is a key component of our service.
While it may differ based on unique and individualized needs and status of the child and family/primary caregivers, we typically start by having time to get to know, understand and create compassionate and individualized child-centered Behavior Instructional (rather than ‘intervention’) Plans.
While we are more than able to offer services in the home and absolutely expect to include home based contacts, it can be useful for us to start services in the Center when possible since it allows for a more controlled setting. This can be especially true for children with more persistent and disruptive physical behavior needs along with issues around feeding and adaptive such as delayed toileting.
Our general plan and sequence for support of family/primary caregivers is as follows but with the caveat that both child and parent support is always data driven and family/child centered. While that means we are open to and will make adaptations as needed, the general plan is as follows:
Meet with parents/primary caregivers and child to include discussion and providing our unique behavior assessment paperwork. We then will then review and discuss the paperwork with family/primary caregivers.
Observation(s) scheduled in the family/primary home setting of each child to better know and understand the child, their family/primary caregivers and their world.
Start services with the child whether in Center or the home setting with experienced Registered Behavior Technicians (RBT) given active support and supervision (overlaps) from a member of the Aurora Clinical Management team which includes Aurora’s owner Amber Furby, BCBA. our Senior Clinical Advisor, Lou Sandler, PhD, BCBA – D, Linsdey Bailey, BCBA and Mary Grace Buckley, our Senior RBT and recent graduate of Georgia Southern’s Master’s program in Behavior Analysis.
Based on our comprehensive assessment process, we will design the Behavior Instructional Plan (BIP), review it with parents/primary caregivers and get it started.
Once in place, we will schedule with the family/primary caregivers to either come into the Center to observe what we are doing with their child or do so remotely.
Family/caregiver observation will initially be passive in nature; that is, to observe without participation. This will always include 15 – 20 minutes at the end for debriefing and discussion with the supervising member of the Aurora clinical management team.
a. If services are primarily in the home, we will set up for the parent/caregiver to observe but still try to remain uninvolved (or minimally so)
Family/caregiver observation and interaction will include the RBT who is working with the child while the supervising member of the Aurora clinical management team will ALWAYS actively observe and participate. We also want families/primary caregivers to see what we do and how we do it.
Based on feedback from the parent/caregiver and Aurora supervisor, the next step will be with the RBT supporting the child with the parent/caregiver participating and/or taking over at mutually identified points in the session.
Based on feedback from the parent/caregiver and Aurora supervisor, the parent/caregiver will then take the lead in implementing all or larger parts of the session with the RBT present and the Aurora supervisor there either in person or remotely to provide direct feedback and support
a. Applications of such key objectives to include functional communication and social interactive competencies will be prioritized as they are put in place.
The next steps will depend on the data, individually identified needs and status of service delivery and priorities of the parent/primary caregivers. We don’t want to just practice but generalize and apply both child and parent skills in naturally occurring settings. We’ll solicit direct and ongoing feedback from the family/caregiver as to those situations in the home, community or other specific targets where we can be most helpful...
This can include home routines as increasing the child’s independence and safety, self-care or feeding to community contacts whether that might be going to the grocery store, a mall, or homes of other family members or friends. Setting up peer contacts whether from within the family and/or in community settings will also be a focus.
We want to know what is important to the families/primary caregivers with whom we are involved.